Posts tagged: Breast Cancer Survival

kay301, whoever you R

Question:

most of the cancer information sites, eg www.imaginis.com <BR<BR Thanks, Tim–do appreciate back-up but also want to say that it wasn’t my idea.  I was just reporting what my original surgeon told me as well as what  several of the other physicians I have seen have told me–including the top breast surgeon at the City of Hope (today) as well as what I have learned from my readings.

Response:

medical or scientific sense whatsoever and it certainly IS NOT as clear-cut as you seem to think in your ill written reply? <BR<BR Hi Jason, sorry you had a problem with the fact that I reported that by the time breast cancer is discovered it is thought to have been there for about the last 5 to 10 years.  That is the current medical theory which was told to me not only by my surgeon but several physicians–surgeons and oncologists alike whom I sought for "2nd," "3rd," "4th," and more opinions.   In addition, I accompanied a good friend, recently dx’d with breast cancer, to her first surgery consult with head breast surgeon from the City of Hope who shared the same info in his explanation of the growth and development of breast cancer. What I have shared is not based on "my opinion" but what has been related to me/us by specialists in this area.  

Response:

have been much more positive than your shameful attempt at stopping independent investigation into a major problem. Can you sleep at night? <BR<BR

First of all Jason, I am humored by your response more than anything.  However, I am certainly not against independent investigations and have done nothing to stop such.  I just shared info. that has been shared with me by several specialists in this area.   At the same time, though, I, too, am frustrated and dismayed about other areas of inconsistencies in regard to breast cancer policies.  And, in answer to your question–can I sleep at night–not that great but ONLY because there is so much else I would rather do.  Cheers!

Response:

If has been growing for so long(?) show me the figures. Then it is obvious by today’s "cure" statistics (a person must survive without relapse the original cancer for a least four years after onset) that they were doing very well without chemical / toxic intervention? Your statement makes no medical or scientific sense whatsoever and it certainly IS NOT as clear-cut as you seem to think in your ill written reply?

The numbers are readily available to anyone willing to do the research –  Tim provided a source. I’m afraid it’s your argument that makes no medical or scientific sense, Jason – but we do have some lovely parting gifts for you. Thanks for playing  ;-) allan — we don’t see things as they are, we see them as we are. — Anais Nin

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You are _too_ funny!! You always crack me up with that quick wit of yours. ;-) ) Take care there my friend, and here’s hoping you both are doing well. God bless you both and keep you safe annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

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I just wanted to add, that if it wasn’t for your sense of humor at just the right times it’s very possible I would’ve gone out to play in the traffic several times during the last few years here. Thanks for being here when we needed you. Take care there/God bless you both. annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

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You are _too_ funny!! You always crack me up with that quick wit of yours. ;-) ) Take care there my friend, and here’s hoping you both are doing well. God bless you both and keep you safe

I’m only quick-witted about half the time, annie – so I guess that’d make me closer to a halfwit  ;-) hugs, allan — we don’t see things as they are, we see them as we are. — Anais Nin

Response:

We know that the division interval for typical cancer cells is around 100 days or longer. We know that a detectable tumour needs to be about 1cm in its longest dimension. A piece of tissue of this size contains typically a billion cells and so it does not take much maths to see that for exponential growth it would take 30 divisions (2 to the power 30 = 1,074 million) to grow to that size, that is 3,000 days or approximately eight years. This is not just Kaye’s idea, similar statements are published by most of the cancer information sites, eg www.imaginis.com If you postulate that growth is not exponential (at least in some stage) then it would take even longer – no-one ever suggested a mechanism that would cause faster-than-exponential growth.  Theories that have been put forward discuss -limits- to the rate of growth. Your reference to "cure" statistics refers to time from either detection or surgery.  Survival times are usually measured from intervention, no-one measures from the back-calculated time of onset. You are new to this news group.  I am pleased to welcome you, but ask you to note that personal attacks are not the style here.  We emphasise support. Tim Jackson

– Hide quoted text — Show quoted text – To talk in absolutes when it come to illness or anything else for that matter is not logical or scientific? The question was aimed at people who "could" recall the question, you obviously misunderstood the replies I requested. I did not ask for advice (not that your email constituted such) and I am a little worried that for a problem so rife in our society one  is so quick to negate any other possibilities for causation other than what? If has been growing for so long(?) show me the figures. Then it is obvious by today’s "cure" statistics (a person must survive without relapse the original cancer for a least four years after onset) that they were doing very well without chemical / toxic intervention? Your statement makes no medical or scientific sense whatsoever and it certainly IS NOT as clear-cut as you seem to think in your ill written reply? Why did you bother? BTW, Until medical/chemical intervention it’s growth is not exponential, if it had been it would not have taken the time you mentioned to overwhelm the area…what is your agenda? I simply wanted the replies from those who would be willing to give information in order to study statistics. It will take more than an email with bad advice from someone obviously not familiar (or very familiar) with the onset of breast cancer. If you do not have anything to ADD to a solution then please keep quite and let the rest reply for themselves…BTW You in a big minority, other replies have been much more positive than your shameful attempt at stopping independent investigation into a major problem. Can you sleep at night? Don’t bother to reply. I thought this was a newsgroup to discuss ALL aspects and ALL possible avenues of relief from this awful problem..it is obvious you do not belong in that category!

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To talk in absolutes when it come to illness or anything else for that matter is not logical or scientific? The question was aimed at people who "could" recall the question, you obviously misunderstood the replies I requested. I did not ask for advice (not that your email constituted such) and I am a little worried that for a problem so rife in our society one  is so quick to negate any other possibilities for causation other than what? If has been growing for so long(?) show me the figures. Then it is obvious by today’s "cure" statistics (a person must survive without relapse the original cancer for a least four years after onset) that they were doing very well without chemical / toxic intervention? Your statement makes no medical or scientific sense whatsoever and it certainly IS NOT as clear-cut as you seem to think in your ill written reply? Why did you bother? BTW, Until medical/chemical intervention it’s growth is not exponential, if it had been it would not have taken the time you mentioned to overwhelm the area…what is your agenda? I simply wanted the replies from those who would be willing to give information in order to study statistics. It will take more than an email with bad advice from someone obviously not familiar (or very familiar) with the onset of breast cancer. If you do not have anything to ADD to a solution then please keep quite and let the rest reply for themselves…BTW You in a big minority, other replies have been much more positive than your shameful attempt at stopping independent investigation into a major problem. Can you sleep at night? Don’t bother to reply. I thought this was a newsgroup to discuss ALL aspects and ALL possible avenues of relief from this awful problem..it is obvious you do not belong in that category!

Response:

couple of tests- anyone heard of these?

Question:

Katie in Canada here- I’m still fighting the beast… a day at a time and still QOR (queen of research LOL). Has anyone heard of the following 2 procedures: AMAS- stands for Antimalignin in Serum blood test… Breast thermography. I have heard these two tests can be used for monitoring, even in cases of DCIS where one is debating chemo… info came to me by way of a naturopathic practitioner….

Response:

Hi Katie–I heard of the AMAS test and had it done.  The difficulty in getting it makes it sound almost ‘hokey,’ but the info given out at the lab does sound legit.  I was sort of skeptical though since most dr.’s I spoke with had never heard of it.  It was FDA approved.  The question in my mind was whether or not it was as reliable and as valid as they say it was.  I am not saying it isn’t, but I just wasn’t sure.  Still I went ahead with it and the results were within normal limits.  There is the risk of false negatives, although they say that generally only happens if you have widespread mets.  I’m not sure, though, if it is reliable for different types of breast cancer either. Anyway, they send you the test at no charge and then you have to pay, I think $135.00 to have them process it.  It needs to be done in a lab that knows how to do it.  I found one that wasn’t too far away, and they had done lots of them.  They charged a $40.00 fee to draw blood, package it, and send it off the way it needs to be done.  I had the results less than 24 hours later. As far as beast thermography that isn’t a test but a procedure—at least from what I remember about it.  There is one place that does it in Southern California.  Soon after I heard about it, I happened to be at a conference in an adjacent bldg.  When I saw their logo, I decided to check it out.  I was not impressed with the offices–then again, didn’t know that much about it–only that an acquaintance (professional LCSW) said a friend of hers came out to CA from out-of-state to have it done–after radiation, I think–and that this was going to ‘cure’ her.  One of the private oncologists I saw said it might have a positive effect but said that I shouldn’t have it done at the clinic that I had visited.  I don’t know if he was just opinionated against them or their set up, or if they had a real ‘problem.’  There is research being done re. thermography at Duke University.  It’s coming back to me–think the private onc said it should only be done through a clinical trial…

Response:

Katie in Canada here- I’m still fighting the beast… a day at a time and still QOR (queen of research LOL). Has anyone heard of the following 2 procedures: AMAS- stands for Antimalignin in Serum blood test… Breast thermography. I have heard these two tests can be used for monitoring, even in cases of DCIS where one is debating chemo… info came to me by way of a naturopathic practitioner….

thermography is claimed to be a screening test. http://www.iact-org.org/patients/breastthermography/what-is-breast-th… A persistent abnormal thermogram caries with it a 22x higher risk of future breast cancer. When added to a woman’s regular breast health checkups, a 61% increased survival rate has been realized. Finally, when used as part of a multimodal approach (clinical examination + mammography + thermography) 95% of early stage cancers will be detected. However, thermography does not have the ability to pinpoint the location of a tumor. Consequently, breast thermography’s role is in addition to mammography and physical examination, not in lieu of[] So it seems that ongoing retests are required (if you read the rest of that web page) It does not pinpoint the location. And its (potential) use would be in conjunction with mammogram and physical exam. (from another website). It’s advertised at about $250.00 Cdn (taxes unknown). " To distinguish normal from abnormal tissues, the hands are immersed in cold water to provide a cold challenge to the whole body and the scan is then repeated. Normal cells will show a decrease in heat production while cells with increased cellular activity (e.g. cancer cells) will maintain or increase their heat radiation" Since you’ve had a lumpectomy, I would wonder if it would pick up "increased cellular activity" from healing? It won’t pick up "mets" elsewhere. Steph (radiation oncologist) in BC just received information about it and is writing up some kind of proposeal to evaluate its potential (or not) clinical use. Perhaps your oncologist also has received information and would offer you an opinion specific to your diagnosis and situation as to whether you are wasting your time and money? J

Response:

arimidex

Arimidex is a medication used to treat Breast Cancer. buy Arimidex and feel better today!

Question:

Hi Linda, I’m taking Arimidex.  It ain’t no picnic, but if it helps me to survive longer without developing more cancer, then OK. The docs say, that Arimidex shuts down the estrogen production in your body.  Estrogen is a feel good drug.  Without it, you might feel tired, listless, sorta blah, etc. The docs say that Arimidex affects each person differently, & that it can sometimes take months or years for your body to adjust.  It’s hit me hard, & I’m having a difficult time adjusting to it. After five years, you can stop taking it.  Right now, I’m looking forward to the end of that fifth year. Susan, Su_Texas  my opinions PS  Through the grapevine, I heard that a cousin of mine who was taking Tamoxifen, had her breast cancer return, so she’s now taking Arimidex. Arimidex is the newer drug.

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Hi Linda, I have lesions on my chest wall and lungs. I have been on everything, so of course I have an opinion on Arimidex! First, I am sorry to hear about your disease progression. That sucks.I hope the Arimidex works for a long time. I loved Arimidex. There is so much less medical stuff on Arimidex. Instead of going in every week for chemo and every three weeks for a md visit, you go in every couple of months or so. Arimidex ramps up slowly and can cause your tumor marker to go up initially, so that is NOT a good guide. You just have to wait and give it time. I had very few side effects on Arimidex, especially compared with chemo. I had some weight gain. Otherwise, I felt good and had the time and energy to do a lot and ignore having cancer. I hope it works well for you and without many side effects. Chris – Hide quoted text — Show quoted text – hello cyber friends and survivors linda bliss here i am sure you all know my story dx: invasive ductal carcinoma sept 99, oct 99 lumpectomy clear margins, stage 2, 2.9 cm… axill node dissection nov 99 29 lymph taken 2 were positive. chemo was A/C for 3 months and 33 rads all ending may 2000 ER/PR both positive and HER2 negative. was taking tamoxifen but stopped on my own..i dont know why. every 3 months i see the onc. this past summer the CA 27-29 was elevated slightly in june in june 79 july 100 so onc sent me for MRI cat scan and PET scan.  Pet scan showed lesions on my chest wall and adrenal galnds above kidneys. shit (sorry) i have not even made the 5 year mark yet.  Onc seems to think it was caught early?  so he put me on Arimidex August 20, 2003. for my own piece of mind i am going to Sloan Kettering Caner Center here in New York for 2nd opinion. i think i have to stop reading the survival rate on mets from breast cancer cuz now it scares me..some say 5% some say 50%. Question what are the side affects if any from the arimidex and i know Tim has answered me b4 but maybe someone different this time( not that i dont trust tim)  what really is the surcical for mets from breast cancer dam i am going to fight this beast again i may need chemo again:-( love linda be well everyone

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Linda Bliss wrote << what are the side affects if any from the arimidex   Well, it reduces your body’s production of estrogen.  That can cause possible bone degeneration and conommitant bone/joint(?) aches and pains.  I started to get a little achey on it but started taking Celebrex, a non-steroid anti-inflammatory drug which helped with that and may also reduce risk of tumors.

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That fact that your cancer does respond to hormones is  in your favor.  That fact you  stopped the Tamoxifen is also good …..for the viewpoint if you were taking it and the mets appeared it would have meant that the cancer had become tolerant to hormone therapy.The survival rates are very individual …and  changing,. Think positive, get that second opinion, Alex

– Hide quoted text — Show quoted text – hello cyber friends and survivors linda bliss here i am sure you all know my story dx: invasive ductal carcinoma sept 99, oct 99 lumpectomy clear margins, stage 2, 2.9 cm… axill node dissection nov 99 29 lymph taken 2 were positive. chemo was A/C for 3 months and 33 rads all ending may 2000 ER/PR both positive and HER2 negative. was taking tamoxifen but stopped on my own..i dont know why. every 3 months i see the onc. this past summer the CA 27-29 was elevated slightly in june in june 79 july 100 so onc sent me for MRI cat scan and PET scan.  Pet scan showed lesions on my chest wall and adrenal galnds above kidneys. shit (sorry) i have not even made the 5 year mark yet.  Onc seems to think it was caught early?  so he put me on Arimidex August 20, 2003. for my own piece of mind i am going to Sloan Kettering Caner Center here in New York for 2nd opinion. i think i have to stop reading the survival rate on mets from breast cancer cuz now it scares me..some say 5% some say 50%. Question what are the side affects if any from the arimidex and i know Tim has answered me b4 but maybe someone different this time( not that i dont trust tim)  what really is the surcical for mets from breast cancer dam i am going to fight this beast again i may need chemo again:-( love linda be well everyone

Response:

hello cyber friends and survivors linda bliss here i am sure you all know my story dx: invasive ductal carcinoma sept 99, oct 99 lumpectomy clear margins, stage 2, 2.9 cm… axill node dissection nov 99 29 lymph taken 2 were positive. chemo was A/C for 3 months and 33 rads all ending may 2000 ER/PR both positive and HER2 negative. was taking tamoxifen but stopped on my own..i dont know why. every 3 months i see the onc. this past summer the CA 27-29 was elevated slightly in june in june 79 july 100 so onc sent me for MRI cat scan and PET scan.  Pet scan showed lesions on my chest wall and adrenal galnds above kidneys. shit (sorry) i have not even made the 5 year mark yet.  Onc seems to think it was caught early?  so he put me on Arimidex August 20, 2003. for my own piece of mind i am going to Sloan Kettering Caner Center here in New York for 2nd opinion. i think i have to stop reading the survival rate on mets from breast cancer cuz now it scares me..some say 5% some say 50%. Question what are the side affects if any from the arimidex and i know Tim has answered me b4 but maybe someone different this time( not that i dont trust tim)  what really is the surcical for mets from breast cancer dam i am going to fight this beast again i may need chemo again:-( love linda be well everyone

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Breast Cancer Growth

Question:

Hi Bonnie , and welcome to our little club … that none of us wants to be in ! There are some great people here , who will advise , support and try to cheer you up ! I think most of us here feel the same way as you …… going along fine , and then WHAM!!!! No symptoms , just the bad news ! It stinks I know , but you aren’t alone , we will all be here if you want to have a whine or need to ask anything ! Its not so bad when you get over the shock! Good Luck , Luv Mazza xxx

– Hide quoted text — Show quoted text – Hi, I am new to all this , diagnosed 4/23/03, with a non-palpable lesion that showed suspcious on a mammogram. Have you been introduced to  Dr. Susan Love’s Breast Book?  It was given to me as the sort of bible for this adventure.   She has a diagram there, page 265, showing the number of years it takes for cancer to reach certain sizes.  It does indicate that a finding on a mammogram which cannot be palpated has probably been growing about  9 years, and that it could have been another one to two years for this to be palpable. I have had a life of weird symptoms, most of them painful that could never be explained, or which took years to be diagnosed.  It is strange to have something life threatening, which was symptom free and then to try to imagine that it was in there for 9 years already.

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<< Relative to ‘normal’, there is really no hard top speed limit, what would be interesting would be a population chart showing the incidence of different cancer growth rates, presumably classified by diagnosis.  But no, I haven’t seen anything like that, although I daresay the data exists somewhere.   Thanks for the feedback.   There are still so many areas open to further research.  If only more support (financial) went to areas like that in our country rather than giving mega salaries to entertainers and athletes…and not to mention ‘defense’…sigh…

Response:

Hi, I am new to all this , diagnosed 4/23/03, with a non-palpable lesion that showed suspcious on a mammogram. Have you been introduced to  Dr. Susan Love’s Breast Book?  It was given to me as the sort of bible for this adventure.   She has a diagram there, page 265, showing the number of years it takes for cancer to reach certain sizes.  It does indicate that a finding on a mammogram which cannot be palpated has probably been growing about  9 years, and that it could have been another one to two years for this to be palpable. I have had a life of weird symptoms, most of them painful that could never be explained, or which took years to be diagnosed.  It is strange to have something life threatening, which was symptom free and then to try to imagine that it was in there for 9 years already.  

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Jan: According to Dr. Love’s book, it’s been determined that a breast cancer cell (infiltrating ductal carcinoma – the most common type of breast cancer) takes 120 days to divide.  Those 2 cells take another 120 days, etc.  By the time it’s 1 cm, it contains a billion cells and have been busy dividing for 7-10 years. My 1 cm cancer was detected in a mammogram exactly 1 year from the date of my previous mammorgram when it did not show. Interestingly enough, you can’t feel a 1 cm tumor.  By the time it can be felt, it’s another year or so and another billion cells. Different cancer cells reproduce at different rates.  I’m guessing that this applys to the different types of breast cancer as well. Sassy        

Response:

I agree that at 120 day division rate, it would take about 10 years to produce a billion cells, which would fill about a cubic centimetre. However the 120 day figure is far from cast in stone as you appear to suggest, it varies widely and can sometimes be much less.  The typical figure is indeed somewhere in the hundred day area as you say.  120 days is a convenient round number as it implies a doubling in linear size in a year. Again, whether a tumour can be felt, or detected on a mammogram, depends on where it is, how diffuse it is and how dense the breast is.  Some tumours less than 1cm can be felt, and some much bigger can’t.  Typically the limit of mammogram detection is around 5mm for a well-defined tumour under good circumstances. By the way a billion cell tumour at 120 day division would have grown to eight billion (about 2cm) after another year, not two billion. Tim Jackson

– Hide quoted text — Show quoted text – Jan: According to Dr. Love’s book, it’s been determined that a breast cancer cell (infiltrating ductal carcinoma – the most common type of breast cancer) takes 120 days to divide.  Those 2 cells take another 120 days, etc.  By the time it’s 1 cm, it contains a billion cells and have been busy dividing for 7-10 years. My 1 cm cancer was detected in a mammogram exactly 1 year from the date of my previous mammorgram when it did not show. Interestingly enough, you can’t feel a 1 cm tumor.  By the time it can be felt, it’s another year or so and another billion cells. Different cancer cells reproduce at different rates.  I’m guessing that this applys to the different types of breast cancer as well. Sassy

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Tim: Math was never my strong suit….do agree with you about size doubling and etc.  So many variables affect cancer of all types. :-)

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Hi Tim<< However the 120 day figure is far from cast in stone as you appear to suggest, it varies widely and can sometimes be much less.  The typical figure is indeed somewhere in the hundred day area as you say.  120 days is a convenient round number as it implies a doubling in linear size in a year. Do you know if anyone has studied different rates of tumor growth?  I am wondering how fast aggressive tumors would tend to grow and if a maximum rate has ever been established.  Then, I am also wondering if the growth rate can vary–be fast sometimes, then slow down and then speed up again…I am guessing that is a definate possibility but haven’t read anything about it–yet…

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– Hide quoted text — Show quoted text – Hi Tim<< However the 120 day figure is far from cast in stone as you appear to suggest, it varies widely and can sometimes be much less.  The typical figure is indeed somewhere in the hundred day area as you say.  120 days is a convenient round number as it implies a doubling in linear size in a year. Do you know if anyone has studied different rates of tumor growth?  I am wondering how fast aggressive tumors would tend to grow and if a maximum rate has ever been established.  Then, I am also wondering if the growth rate can vary–be fast sometimes, then slow down and then speed up again…I am guessing that is a definate possibility but haven’t read anything about it–yet…

I did see it said somewhere that cancer cell division periods of under 7 days have been observed, I don’t think that was confined to bc though. One would expect very fast growing cancers to be symptomatically different from ‘normal’ ones. Relative to ‘normal’, there is really no hard top speed limit, what would be interesting would be a population chart showing the incidence of different cancer growth rates, presumably classified by diagnosis.  But no, I haven’t seen anything like that, although I daresay the data exists somewhere. Tim

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Thanks Tim, My question had to do with the Prempro study that was stopped at an average of 5.2 yrs on study, because of unacceptable number of breast cancers.  In reading the entire report (JAMA. 2002; 288: 321-333), it seems to me that most, if not all, of the breast cancers had to be present (but undetected) BEFORE any of the women started on the study.  This disturbs me because of the terrific media attention the ‘results’ got, plus the feeling that maybe Prempro (or progesterone) really accelerates cancer growth beyond what is normally understood.  Any thoughts?

Hmm  Interesting point.  There was a 26% increase in the incidence of bc detection ( an increase of 0.08% per year).  That doesn’t necessarily imply that the cancers were already there, if we were only so far seeing the faster growing cancers it could be the leading edge of a larger bulge.  Just because the average growth time is about ten years doesn’t mean they all are, the growth rate varies quite widely. If that were true, then we would go on seeing an increased and increasing rate of cancers in the study population for several years despite the medication being withdrawn. I agree it is more likely that we were seeing an acceleration in the growth of existing cancers, that would be expected from increasing the hormone levels.  Whether or not that coincides with an increase in the rate of development of cancers is moot.  It would not be surprising if it did, but it is not a foregone conclusion.  One mechanism might be that increasing the growth rate would reduce the chance of the immune system destroying proto-cancers before they get unmanageably large. It would be interesting to do a follow-up study on the medicated cohort and see how the incidence now progresses.  If the HRT does not initiate cancer but only accelerate growth then there should follow a dip below normal incidence due to depletion, and rates should average out in the long term. The really important number is the lifetime incidence, that measures the carcinogenicity.  If the drug only accelerates cancer growth that is still bad news as it shortens the survival time for cancer patients, but it is not as bad as if it created cancers.  Other evidence regarding breast cancer risks, eg Tamoxifen response, would suggest that elevated estrogen does increase both the risk and the growth rate. We are probably mainly talking about the estrogen component of the drug as it is well known that most breast cancers have overexpressed estrogen receptors controlling  their growth. Tim

Response:

Thanks Tim, My question had to do with the Prempro study that was stopped at an average of 5.2 yrs on study, because of unacceptable number of breast cancers.  In reading the entire report (JAMA. 2002; 288: 321-333), it seems to me that most, if not all, of the breast cancers had to be present (but undetected) BEFORE any of the women started on the study.  This disturbs me because of the terrific media attention the ‘results’ got, plus the feeling that maybe Prempro (or progesterone) really accelerates cancer growth beyond what is normally understood.  Any thoughts?

– Hide quoted text — Show quoted text – Yes to all those questions. Cancers are not generally detectable until they are at least 5mm across, the normal time between divisions in cancer cells is usually measured in months, and a 1cm cancer contains around a billion cells. See our FAQ at www.cancersupporters.com, "how long have I had cancer?" for a more detailed answer. Tim Jackson I have heard that, by the time a breast cancer is found, it is already 6-8 years old.  Is this ‘found by any method’?   Is this for any type of breast cancer?  Is this based on the ‘normal’ cell growth of the cancer cell? Like, it takes that long for enough cells to be there to be felt as a lump, or picked up as an abnormality on a mammogram?  Anyone know? Thanks,  Jan

Response:

Yes to all those questions. Cancers are not generally detectable until they are at least 5mm across, the normal time between divisions in cancer cells is usually measured in months, and a 1cm cancer contains around a billion cells. See our FAQ at www.cancersupporters.com, "how long have I had cancer?" for a more detailed answer. Tim Jackson

– Hide quoted text — Show quoted text – I have heard that, by the time a breast cancer is found, it is already 6-8 years old.  Is this ‘found by any method’?   Is this for any type of breast cancer?  Is this based on the ‘normal’ cell growth of the cancer cell? Like, it takes that long for enough cells to be there to be felt as a lump, or picked up as an abnormality on a mammogram?  Anyone know? Thanks,  Jan

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I have heard that, by the time a breast cancer is found, it is already 6-8 years old.  Is this ‘found by any method’?   Is this for any type of breast cancer?  Is this based on the ‘normal’ cell growth of the cancer cell? Like, it takes that long for enough cells to be there to be felt as a lump, or picked up as an abnormality on a mammogram?  Anyone know? Thanks,  Jan

Response:

Moveable lump, diagnosed cancer, what does that mean? Plus other questions.

Question:

– Hide quoted text — Show quoted text – My wife was diagnosed a couple of days ago with breast cancer, and surgery (lumpectomy) is scheduled for Monday.  The lump is 3.5cm x 3cm x 2cm, is fairly hard, and according to several doctors, is moveable. It is located on the upper part of the breast, closer to the chest than the nipple. We’ve been told that the fact that it is moveable is a positive sign, and the surgeon mention the possibility of "in situ" or perhaps a small cluster of invasive cells surrounded by non-invasive cells. But when I researched lobular and ductile carcinoma in situ, neither can seem to account for the size and shape of this tumor.  So perhaps the surgeon was just trying to be more hopeful than realistic?  Or could it be an invasive cancer that just hasn’t spread into connective tissue? Also, I keep reading that lumpectomy vs. mastectomy is a decision generally left for the patient, but our surgeon didn’t really offer a choice but instead just recommended lumpectomy.  Is this a good sign that she thinks it is very treatible?  Or could it be the influence of our HMO (lumpectomy is outpatient, mastectomy is not)? Thanks for any help.  Sorry if the above is not worded very well, but its late, and I’m tired and worried… Mike

The surgeon may well have been trying to be hopeful.  Inasmuch as there is not much you can do about it before Monday, minimizing the worrying associated with the wait may seem humane.  Until you know what you are dealing with, hoping for the best while preparing for anything, including the worst, makes a lot of sense. Glandular cells rest on a very thin layer of material called the basement membrane.  That separates the glandular cells from the surrounding supportive tissue.  In situ means that the cells are not normal–they look like cancer, but have not crossed the basement membrane.  In principal, they could grow to a fair mass that way but if they did, they would sooner or later grow beyond their blood supply. This will probably turn out to be invasive. The breast is composed of fatty tissue with glands running through the fat.  The tumor is probably invading the surrounding fat, but is not close enough to the skin or the muschles and fascia that underlie the breast to become attache to them.  That is what makes it movable, and that is legitimately a good sign.  I means that they can remove a chunk of fat and glandular tissue and "Have it all;"  they will not have to do more injurious procedures taking part of the chest wall.  It also means there is less likelihood that it will have spread to other parts of the body. Lumpectomy with radiation and perhaps chemotherapy has results essentially identical to mastectomy.  Some studies show a slight edge one way, others show a slight edge the other way.  It really does seem to be a toss-up.  The lumpectomy is, or at least seems, less destructive, and does not require secondary surgery with more trauma for reconstruction.  If your wife should opt for mastectomy, remember that she doesn’t have to have reconstruction if she doesn’t want to.  My wife took that path with no regrets, but it is an individual decision. Best wishes, Sandy L

Response:

Mike, sorry to hear of your wife’s diagnosis and sorry to have to welcome you to this group.  You will find alot of support, here, though, and so  will your wife if she should post.   Re. your wife’s upcoming lumpectomy–latest stat’s show that one’s overall survival is just as good with a lumpectomy as with a mastectomy.  If you are in any doubt, I would suggest  you go for a second opinion, privately, if at all possible.  Some who have large tumors are treated with chemotherapy before surgery.  However, each person’s situation is different. I had a 2.5 cm tumor and opted for a bilateral mastectomy because of a very bad family hx and the type of breast cancer that I was dx’d with, which was the type most likely to recur on the other side.  However, after having a core biopsy from which I never healed and then waiting 3.5 weeks for surgery, I am not so sure that was the best decision, especially since I had very aggressive forms of cancer–3 different kinds.  I am not at all sorry about the surgery–but from what I know now–in my case, I just wish I had the opportunity to start chemo sooner. This whole experience most likely is quite overwhelming, I’m sure.  It is not easy to make decisions when you don’t have much understanding or knowledge about what is going on.  You will be getting a crash course in breast cancer 101 over the next few days, I’m sure.   If you have any questions, just ask and, hopefully someone here will be able to help or offer suggesions re where to get whatever info. you may need.  My best thoughts are with you at this very challenging time.  Take care and all the best!

Response:

I just wanted to say hello and welcome you to the group as I’ve been told that "nobody wants to be in".  But it is a fine group of people. A group of very intelligent people, me not being one of them.  I’m new, haven’t even had my biopsy yet (probably next week).  But I too turned to these folks right away when I first suspected I might have breast cancer.  They have answered all my questions, referred me to books, websites, and most importantly they are there for you (and your wife). One thing I’ve learned from them~ ask questions, you have a right to know everything that is happening to your wife and why, write things down because there are things you won’t remember.  Your wife deserves the best of care and you need to make sure she gets it, I’m sure you will.  Of course, you are both very scared right now,  I know I am.  But God is good! He will see you and your wife through this.  Best of luck to you and your wife.  Keep us posted on her progress.  When you have questions, post them here~ like I said (excluding me at the present being a newbie) there are so many people here with answers!  My prayers are with you and your wife!   Debbie

Response:

My wife was diagnosed a couple of days ago with breast cancer, and surgery (lumpectomy) is scheduled for Monday.  The lump is 3.5cm x 3cm x 2cm, is fairly hard, and according to several doctors, is moveable. It is located on the upper part of the breast, closer to the chest than the nipple.  We’ve been told that the fact that it is moveable is a positive sign, and the surgeon mention the possibility of "in situ" or perhaps a small cluster of invasive cells surrounded by non-invasive cells. But when I researched lobular and ductile carcinoma in situ, neither can seem to account for the size and shape of this tumor.  So perhaps the surgeon was just trying to be more hopeful than realistic?  Or could it be an invasive cancer that just hasn’t spread into connective tissue? Also, I keep reading that lumpectomy vs. mastectomy is a decision generally left for the patient, but our surgeon didn’t really offer a choice but instead just recommended lumpectomy.  Is this a good sign that she thinks it is very treatible?  Or could it be the influence of our HMO (lumpectomy is outpatient, mastectomy is not)? Thanks for any help.  Sorry if the above is not worded very well, but its late, and I’m tired and worried… Mike

Response:

Common cancers invade the surrounding tissue and so become attached to it and feel fixed in place. A condition where cells are apparently cancerous (to the microscope) but are not (yet) invading the walls of the duct or lobe in which they occurred is called ‘carcinoma in-situ’.  This is generally thought to be a sort of precancerous condition rather than true cancer, because if left to themselves some 25% of carcinomas in-situ never develop into invasive cancers.  This is known as DCIS or LCIS depending whether it occurs in the duct or lobe. 3cm would be awfully large for carcinoma in situ.  However it could happen that a non malignant growth can turn cancerous later in its development and end up looking like this.  For a cell to become cancerous requires a whole cascade of changes to occur, many of which are happening quite often to some cells or other in the body.  Cancer happens when some cell gets all the ducks in a row.  Now some of the required changes cause uncontrollable growth, others cause invasion, it may be that a cell developed a growth mutation and became a non-malignant tumour growing for several years before some cell within the tumour developed a further mutation making it invasive. That way you get a cancer growing within a benign tumour, giving you this combination of early stage cancer in a large tumour. How do they know it is cancerous, has she had a biopsy? Have you/they looked at the possible diagnosis of Phyllodes Tumour, which is a different sort of structure but looks rather like this and is relatively benign?  However a biopsy would show the difference. Tim Jackson

– Hide quoted text — Show quoted text – My wife was diagnosed a couple of days ago with breast cancer, and surgery (lumpectomy) is scheduled for Monday.  The lump is 3.5cm x 3cm x 2cm, is fairly hard, and according to several doctors, is moveable. It is located on the upper part of the breast, closer to the chest than the nipple.  We’ve been told that the fact that it is moveable is a positive sign, and the surgeon mention the possibility of "in situ" or perhaps a small cluster of invasive cells surrounded by non-invasive cells. But when I researched lobular and ductile carcinoma in situ, neither can seem to account for the size and shape of this tumor.  So perhaps the surgeon was just trying to be more hopeful than realistic?  Or could it be an invasive cancer that just hasn’t spread into connective tissue? Also, I keep reading that lumpectomy vs. mastectomy is a decision generally left for the patient, but our surgeon didn’t really offer a choice but instead just recommended lumpectomy.  Is this a good sign that she thinks it is very treatible?  Or could it be the influence of our HMO (lumpectomy is outpatient, mastectomy is not)? Thanks for any help.  Sorry if the above is not worded very well, but its late, and I’m tired and worried… Mike

Response:

Mixed Messages

Question:

<< Any comments on prophylactic mastectomies? . . . and . . . ….though mastectomy had the same risk but I guess not if they leave the axilla alone…duh!!

I *wanted* a prophylactic mastectomy on my right side, when multifocal tumors were found in my left breast.  My surgeon was unwilling, and I didn’t press much . . . but then we found a lump in my right breast, it was biopsied while I was on the operating table for the left mastectomy, and they went ahead with the right mastectomy in the same session when the lump from the right was malignant. Having a prophylactic mastectomy or not is a tough decision.  However, if I were giving advice based on my experience, I’d probably encourage thinking about the bilateral if you’re going to do it at all.  (Others may feel differently, and have good arguments for doing so!).   Personally, I’ve found bilateral to have some pluses:  If you use protheses, there’s no question about matching (through weight changes, or in general).  In fact, you could have different sized "breasts" for different occasions, if you prefer!  I think it’s easier after bilateral (than uni) to go without prostheses at times when I wish — I’m just flat, not uneven.  For most of my non-work life, I go without. Sometimes people with one mastectomy have back problems because of the weight differential, which isn’t an issue with bilateral. Recovery from a simple mastectomy is not a biggie.  I have had no range-of-motion or strength issues on my simple mastectomy side (after the basic healing period, of course).  And, as you mention, there’s normally no lymphedema risk with the simple mastectomy — I had all my chemo by regular IV (no port), and it was done on the simple mastectomy side, along with all blood tests, blood pressure checks, etc.  No problems. Good luck with your difficult decision! Ann T.

Response:

<< I apologise for taking up people’s time…I feel like a fraud. Rachel   Rachel, don’t apologize–that is what a support group is generally for.

Response:

if you are going to the dr. only yearly, with one mammogram/year, you are doing great!  I am 3.5 years out and still go to the oncologist 3xyear, one mammogram, about 5702348956 clinical breast exams from just about everyone I meet who took Biology 101.  I told the plastic surgeon I hope I never see him at the mall, because I would automatically start taking off my blouse!

Yes!!!!  That is exactly how I feel!  Especially the part about the number of people who want to poke at the breast.  I tell my day care parents that they could tell when I was going to the doctors, I wore a button up shirt. Because SOMEONE was going to want to see my chest! Peg P.S.  To stay with the discussion, I go to the oncologist once a year, the surgeon once a year (as long as those two are six months apart), and have a mammogram once a year.  And I was diagnosed two years ago.

Response:

 << Any comments on prophylactic mastectomies? I forgot to  mention I did  have an occasional feeling of doubt after I’d made my almost instantaneous decision for the bilateral. about whether or not I was foing the ‘right’ thing.  The day before surgery I asked my surgeon at the pre-op appt. the following question: If the b.c. in the malignant breast had been growing for the past 5 to 10 years, and it hadn’t shown up on previous yearly mammograms, and it was the type most likely to recur in the other breast, was it not possible that even with the normal mammogram on the other side for it (b.c.) to already be there but not showing up.  My surgeon’s response was, "yes," that was possible.   After she told me that, any doubts I had were gone.

Response:

Thank you Kaye…I have been so lucky with my affected arm so far..but like you would not want to risk my other, dominant hand. I hadn’t thought through that far….though mastectomy had the same risk but I guess not if they leave the axilla alone…duh!! Rachel

– Hide quoted text — Show quoted text – << Any comments on prophylactic mastectomies? I had it done soon after dx–no regrets.  I did it because of a very bad family hx and because I had invasive lobular–the kind most likely to show up on the other  side.  Much to everyone’s (dr’s) surprise, it turned  out that the invasive lobular was pleomorphic, and I had 2 other types of b.c. going on–and it was very aggressive.  The day before I went in for surgery, before the extent of cancer was known, my surgeon said she’d have done the same if it were her (re what was going on w/me at the time) based on what she had seen over the almost 20 years that she’d been doing this. I did have the surgeon leave extra skin for reconstruction, which, at this point I am not sure I want to have.  I am feeling very comfortable–and don’t think I want to risk the possibility of discomfort that sometimes goes along with reconstruction. I was very surprised at how natural and comfortable the new prostheses are.  (I had less than positive memories about such–based on what my mom had gone through in the late 60’s/early 70’s).  Most of the time I am not even conscious of any discomfort or feeling any different than I  did before surgery in that area. Another reason I am glad that I had the bilateral was because I developed lymphedema in the arm where the nodes were removed on my non-dominant side.  I would not want to experience further risk of lymphedem with  my dominant arm/hand if I’d ever had another malignant tumor on that side and needed more lymph nodes removed.

Response:

I am doing fine and I’m very grateful for it, however…why go to all the trouble of breast conserving surgery, chemo & radiotherapy to be told that I should have a double mastectomy anyway? I have had 4 years of fairly serious pain in the affected breast following the radiotherapy and problems with lung function. I’m a little confused but then I read Annie’s posts and think maybe it’s the right thing to do. I have been put on the waiting list to talk this through with a geneticist re. risk and testing for BRCA1 etc. I apologise for taking up people’s time…I feel like a fraud. Rachel

– Hide quoted text — Show quoted text – Rachel , the current plan of care is exactly what you are getting.  Since you are so young. I would consider prophlatic mastectomies for piece of mind. Breast Cancer is a life long disease, Susan Love’s Breast Book spells this all out to you. It sounds like you are doing well. Alex Voila the difference between the NHS and the rest ! I work in the NHS and it’s a constant struggle between what you would like to do in the interests of the patient and what you may do in the interests of the bean counters! If I had stayed in Germany I would still be seen at least 6 monthly and have regular tests etc instead of the ‘well you look OK to me’ approach! I’m not sure that this would have been better though. I think it was just the idea of choosing a double mastectomy when I am currently OK that threw me. Know what you mean about the breast exams….keep your top on girl! Rachel if you are going to the dr. only yearly, with one mammogram/year, you are doing great!  I am 3.5 years out and still go to the oncologist 3xyear, one mammogram, about 5702348956 clinical breast exams from just about everyone I meet who took Biology 101.  I told the plastic surgeon I hope I never see him at the mall, because I would automatically start taking off my blouse! All who have had BC are at a high risk for reoccurence. I think your dr. had some unfortunate wording in your discussion! | Had my annual check-up yesterday and finally got to see the consultant | himself. very nice chap…felt confident with the discussion. He did an | ultrasound and declared me NED ( No Evidence of Disease) at the moment…4.5 | years post diagnosis( lumpectomy, CMF chemo and radiotherapy at the age of | 34). We discussed alternatives to Tamoxifen and what will happen next year | when I have to stop taking it…which is when he said that as I am SO HIGH | RISK for a recurrence he was prepared to keep seeing me yearly and offering | yearly mammograms. No-one has described my cancer in this way before. Next | up he asked re. genetic counselling because ‘in my situation’ a prophylactic | mastectomy or double mastectomy might be an idea to consider. | I’m sorry to be whining when essentially I’ve just been given good news. | much of survival is a psychological game…the winner gets enough peace So of | mind to enjoy life again for whatever reprieve we are granted…so to hear | these comments was a bit difficult to take. I had constructed a fragile but | quite effective strategy for getting on with life but it doesn’t withstand | these sorts of comments. | Any comments on prophylactic mastectomies? Has anyone gone down this route? | I’ve got a lot to think about. | | I know with time I’ll get it in perspective again… | | Rachel | |

Response:

<< Any comments on prophylactic mastectomies? I had it done soon after dx–no regrets.  I did it because of a very bad family hx and because I had invasive lobular–the kind most likely to show up on the other  side.  Much to everyone’s (dr’s) surprise, it turned  out that the invasive lobular was pleomorphic, and I had 2 other types of b.c. going on–and it was very aggressive.  The day before I went in for surgery, before the extent of cancer was known, my surgeon said she’d have done the same if it were her (re what was going on w/me at the time) based on what she had seen over the almost 20 years that she’d been doing this. I did have the surgeon leave extra skin for reconstruction, which, at this point I am not sure I want to have.  I am feeling very comfortable–and don’t think I want to risk the possibility of discomfort that sometimes goes along with reconstruction.   I was very surprised at how natural and comfortable the new prostheses are.  (I had less than positive memories about such–based on what my mom had gone through in the late 60’s/early 70’s).  Most of the time I am not even conscious of any discomfort or feeling any different than I  did before surgery in that area. Another reason I am glad that I had the bilateral was because I developed lymphedema in the arm where the nodes were removed on my non-dominant side.  I would not want to experience further risk of lymphedem with  my dominant arm/hand if I’d ever had another malignant tumor on that side and needed more lymph nodes removed.

Response:

Voila the difference between the NHS and the rest ! I work in the NHS and it’s a constant struggle between what you would like to do in the interests of the patient and what you may do in the interests of the bean counters! If I had stayed in Germany I would still be seen at least 6 monthly and have regular tests etc instead of the ‘well you look OK to me’ approach! I’m not sure that this would have been better though. I think it was just the idea of choosing a double mastectomy when I am currently OK that threw me. Know what you mean about the breast exams….keep your top on girl! Rachel

– Hide quoted text — Show quoted text – if you are going to the dr. only yearly, with one mammogram/year, you are doing great!  I am 3.5 years out and still go to the oncologist 3xyear, one mammogram, about 5702348956 clinical breast exams from just about everyone I meet who took Biology 101.  I told the plastic surgeon I hope I never see him at the mall, because I would automatically start taking off my blouse! All who have had BC are at a high risk for reoccurence. I think your dr. had some unfortunate wording in your discussion! | Had my annual check-up yesterday and finally got to see the consultant | himself. very nice chap…felt confident with the discussion. He did an | ultrasound and declared me NED ( No Evidence of Disease) at the moment…4.5 | years post diagnosis( lumpectomy, CMF chemo and radiotherapy at the age of | 34). We discussed alternatives to Tamoxifen and what will happen next year | when I have to stop taking it…which is when he said that as I am SO HIGH | RISK for a recurrence he was prepared to keep seeing me yearly and offering | yearly mammograms. No-one has described my cancer in this way before. Next | up he asked re. genetic counselling because ‘in my situation’ a prophylactic | mastectomy or double mastectomy might be an idea to consider. | I’m sorry to be whining when essentially I’ve just been given good news. So | much of survival is a psychological game…the winner gets enough peace of | mind to enjoy life again for whatever reprieve we are granted…so to hear | these comments was a bit difficult to take. I had constructed a fragile but | quite effective strategy for getting on with life but it doesn’t withstand | these sorts of comments. | Any comments on prophylactic mastectomies? Has anyone gone down this route? | I’ve got a lot to think about. | | I know with time I’ll get it in perspective again… | | Rachel | |

Response:

Rachel , the current plan of care is exactly what you are getting.  Since you are so young. I would consider prophlatic mastectomies for piece of mind. Breast Cancer is a life long disease, Susan Love’s Breast Book spells this all out to you. It sounds like you are doing well. Alex

– Hide quoted text — Show quoted text – Voila the difference between the NHS and the rest ! I work in the NHS and it’s a constant struggle between what you would like to do in the interests of the patient and what you may do in the interests of the bean counters! If I had stayed in Germany I would still be seen at least 6 monthly and have regular tests etc instead of the ‘well you look OK to me’ approach! I’m not sure that this would have been better though. I think it was just the idea of choosing a double mastectomy when I am currently OK that threw me. Know what you mean about the breast exams….keep your top on girl! Rachel if you are going to the dr. only yearly, with one mammogram/year, you are doing great!  I am 3.5 years out and still go to the oncologist 3xyear, one mammogram, about 5702348956 clinical breast exams from just about everyone I meet who took Biology 101.  I told the plastic surgeon I hope I never see him at the mall, because I would automatically start taking off my blouse! All who have had BC are at a high risk for reoccurence. I think your dr. had some unfortunate wording in your discussion! | Had my annual check-up yesterday and finally got to see the consultant | himself. very nice chap…felt confident with the discussion. He did an | ultrasound and declared me NED ( No Evidence of Disease) at the moment…4.5 | years post diagnosis( lumpectomy, CMF chemo and radiotherapy at the age of | 34). We discussed alternatives to Tamoxifen and what will happen next year | when I have to stop taking it…which is when he said that as I am SO HIGH | RISK for a recurrence he was prepared to keep seeing me yearly and offering | yearly mammograms. No-one has described my cancer in this way before. Next | up he asked re. genetic counselling because ‘in my situation’ a prophylactic | mastectomy or double mastectomy might be an idea to consider. | I’m sorry to be whining when essentially I’ve just been given good

news. | much of survival is a psychological game…the winner gets enough peace – Hide quoted text — Show quoted text – So of | mind to enjoy life again for whatever reprieve we are granted…so to hear | these comments was a bit difficult to take. I had constructed a fragile but | quite effective strategy for getting on with life but it doesn’t withstand | these sorts of comments. | Any comments on prophylactic mastectomies? Has anyone gone down this route? | I’ve got a lot to think about. | | I know with time I’ll get it in perspective again… | | Rachel | |

Response:

if you are going to the dr. only yearly, with one mammogram/year, you are doing great!  I am 3.5 years out and still go to the oncologist 3xyear, one mammogram, about 5702348956 clinical breast exams from just about everyone I meet who took Biology 101.  I told the plastic surgeon I hope I never see him at the mall, because I would automatically start taking off my blouse! All who have had BC are at a high risk for reoccurence. I think your dr. had some unfortunate wording in your discussion!

| Had my annual check-up yesterday and finally got to see the consultant | himself. very nice chap…felt confident with the discussion. He did an | ultrasound and declared me NED ( No Evidence of Disease) at the moment…4.5 | years post diagnosis( lumpectomy, CMF chemo and radiotherapy at the age of | 34). We discussed alternatives to Tamoxifen and what will happen next year | when I have to stop taking it…which is when he said that as I am SO HIGH | RISK for a recurrence he was prepared to keep seeing me yearly and offering | yearly mammograms. No-one has described my cancer in this way before. Next | up he asked re. genetic counselling because ‘in my situation’ a prophylactic | mastectomy or double mastectomy might be an idea to consider. | I’m sorry to be whining when essentially I’ve just been given good news. So | much of survival is a psychological game…the winner gets enough peace of | mind to enjoy life again for whatever reprieve we are granted…so to hear | these comments was a bit difficult to take. I had constructed a fragile but | quite effective strategy for getting on with life but it doesn’t withstand | these sorts of comments. | Any comments on prophylactic mastectomies? Has anyone gone down this route? | I’ve got a lot to think about. | | I know with time I’ll get it in perspective again… | | Rachel | |

Response:

Had my annual check-up yesterday and finally got to see the consultant himself. very nice chap…felt confident with the discussion. He did an ultrasound and declared me NED ( No Evidence of Disease) at the moment…4.5 years post diagnosis( lumpectomy, CMF chemo and radiotherapy at the age of 34). We discussed alternatives to Tamoxifen and what will happen next year when I have to stop taking it…which is when he said that as I am SO HIGH RISK for a recurrence he was prepared to keep seeing me yearly and offering yearly mammograms. No-one has described my cancer in this way before. Next up he asked re. genetic counselling because ‘in my situation’ a prophylactic mastectomy or double mastectomy might be an idea to consider. I’m sorry to be whining when essentially I’ve just been given good news. So much of survival is a psychological game…the winner gets enough peace of mind to enjoy life again for whatever reprieve we are granted…so to hear these comments was a bit difficult to take. I had constructed a fragile but quite effective strategy for getting on with life but it doesn’t withstand these sorts of comments. Any comments on prophylactic mastectomies? Has anyone gone down this route? I’ve got a lot to think about. I know with time I’ll get it in perspective again… Rachel

Response:

My wife has been diagnosed with invasive lobular carcenoma

Question:

The doc will tell us tommorow if the pathology of the margins is clear, and he will still have to do a lymphatic dysection (another operation ) .  She is 45.  I am just curious what is this groups honest opinion of her outlook.    It appears to me to that the cancer had appeared and grew to over 2 cm in size in just 3 months. I am sorry for rambling.  And I apologize for any breach of protocol used on this list. Any input would be appreciated. Paul K

Response:

The doc will tell us tommorow if the pathology of the margins is clear, and he will still have to do a lymphatic dysection (another operation ) .  She is 45.  I am just curious what is this groups honest opinion of her outlook.    It appears to me to that the cancer had appeared and grew to over 2 cm in size in just 3 months. I am sorry for rambling.  And I apologize for any breach of protocol used on this list. Any input would be appreciated. Paul K

Welcome aboard.  You have not breached any protocols, but we are a forgiving lot if you had.  Her outlook (prognosis) in a statistical sense will depend on the actual size of the tumor in the specimen, some ways of grading how rapidly the cells are dividing, how much the cells look like normal cells (vs. how bizarre-looking they have gotten), whether certain cell membrane characteristics such as the quantity of estrogen and progesterone receptors and the number of HER2/NEU receptors, and whether the tumor is found in the lymph nodes.  (I doubt I have remembered all of the factors that go into it, but that gives the idea.  Go with her to the doctor’s appointment, take notes, and ask for explanations or instructions on where to get answers to your questions. I hope others will respond before you go with better, more specific ideas, but this may help aim you in the right direction. Come back as you formulate more specific questions.  You really are welcome to the club nobody wants to join. Sandy L

Response:

Has your wife considered a Sentential node Biopsy where only one lymph node is examined. In the Breast Cancer world,  your wife is considered young…. meaning that the cancers tend to be more aggressive. Tim Jackson here has a great web site that why help answer many of your questions http://www.cancersupporters.com/altmed.html Also young women have much better survival rates if treated in a Breast Cancer Center, one that has a team of people working together. Sorry to hear about your wife, but in answer to your general question, the cancer needs to be staged, www. susanlovemed.com  has some information regarding this, but from the minimal information you gave – the tumor size, no evidence so far of it spreading ,  you wife is probably stage 1 or 2 with a fairly good survival rate as high as 80 to 90%…..but you must speak to an oncologist for the best information for your wife. Your wife will get through this, Alex

– Hide quoted text — Show quoted text – The doc will tell us tommorow if the pathology of the margins is clear, and he will still have to do a lymphatic dysection (another operation ) .  She is 45.  I am just curious what is this groups honest opinion of her outlook.    It appears to me to that the cancer had appeared and grew to over 2 cm in size in just 3 months. I am sorry for rambling.  And I apologize for any breach of protocol used on this list. Any input would be appreciated. Paul K

Response:

another variable is age… how is it that you think the tumor grew that amount in that time period?

| The doc will tell us tommorow if the pathology of the margins is | clear, and he will still have to do a lymphatic dysection (another | operation ) .  She is 45.  I am just curious what is this groups | honest opinion of her outlook.    It appears to me to that the cancer | had appeared and grew to over 2 cm in size in just 3 months. | | I am sorry for rambling.  And I apologize for any breach of protocol | used on this list. | Any input would be appreciated. | Paul K | | Welcome aboard.  You have not breached any protocols, but we are a | forgiving lot if you had.  Her outlook (prognosis) in a statistical | sense will depend on the actual size of the tumor in the specimen, some | ways of grading how rapidly the cells are dividing, how much the cells | look like normal cells (vs. how bizarre-looking they have gotten), | whether certain cell membrane characteristics such as the quantity of | estrogen and progesterone receptors and the number of HER2/NEU | receptors, and whether the tumor is found in the lymph nodes.  (I doubt | I have remembered all of the factors that go into it, but that gives the | idea.  Go with her to the doctor’s appointment, take notes, and ask for | explanations or instructions on where to get answers to your questions. | | I hope others will respond before you go with better, more specific | ideas, but this may help aim you in the right direction. | | Come back as you formulate more specific questions.  You really are | welcome to the club nobody wants to join. | | Sandy L | |

Response:

The growth of cancers. Breast cancers start from a single cell and usually grow to a size of around 1cm before they are detectable.  This is around one billion cells, and means that the original cell has divided about 30 times in that period.  The dividing rate varies but for BC it is typically around 100 days, tending to increase with the patient’s age.  This means that a typical cancer takes about ten years to grow from inception to detectable size, and doubles in linear size in about a year. In this case perhaps the lump only ‘appeared’, ie became palpable or visible on a mammogram, or whatever, when it got to about 1cm across, and doubled in linear size in three months, that means doubling in volume about every 30 days.  This would be considered a fast growing cancer even for a relatively young patient.  However that assessment depends on an assumption of the size at detection, which we don’t actually know.  The only way this sort of analysis is really at all useful if you have for example a baseline mammograms taken months before which shows the tumour, albeit in an undiagnosable state.  However I think a surgeon presented with this data would treat the case as a priority. Tim Jackson

– Hide quoted text — Show quoted text – how is it that you think the tumor grew that amount in that time period? | She is 45…. | … It appears to me to that the cancer | had appeared and grew to over 2 cm in size in just 3 months.

Response:

Thanks everyone for the help. I will be back looking for more support when we return from the Doc’s today.  (he should have a full pathology report available) We are praying its the hormone responsive type. In response to the way I feel it did not exist a few months ago.. Her good friend has had this cancer spread to every organ in her body it seems over the last 2 years, so she has been VERY aggressive in checking herself. But the above growth rate explanation helps clarify.  She started on birth control pills to rectify a progesterone shortage just  before it appeared. Hence my hope that its hormone controllable. Take care, Paul K my prayers for all

Response:

Why surgery & radiation doesn't work

Question:

Please show some respect for us.  Go away and stop bombarding us with your irritating nonsense.   Sasha – Hide quoted text — Show quoted text – Information quoted from http://www.worldwithoutcancer.org.uk/hoax.html What, then, is the statistical chance for long-term survival of five years or more after surgery? That, we are told, depends on the location of the cancer, how fast it is growing, and whether it has spread to a secondary point. For example, two of the most common forms of cancer requiring surgery are of the breast and the lung. With breast cancer, only sixteen percent will respond favorably to surgery or X-ray therapy. With lung cancer, the percentage of patients who will survive five years after surgery is somewhere between five and ten percent.8  And these are optimistic figures when compared to survival expectations for some other types of cancers such as testicular chorionepitheliomas. When we turn to cancers which have metastasized to secondary locations, the picture becomes virtually hopeless-surgery or no surgery. As one cancer specialist summarized it bluntly:        A patient who has clinically detectable distant metastases when first seen has virtually a hopeless prognosis, as do patients who were apparently free of distant metastases at that time but who subsequently return with distant metastases.9        An objective appraisal, therefore, is that the statistical rate of long-term survival after surgery is, on the average at best, only ten or fifteen percent. And once the cancer has metastasized to a second location, surgery has almost no survival value. The reason is that, like the other therapies approved by orthodox medicine, surgery removes only the tumor. It does not remove the cause. The rationale behind X-ray therapy is the same as with surgery. The objective is to remove the tumor, but to do so by burning it away rather than cutting it out. Here, also, it is primarily the non-cancer cell that is destroyed. The more malignant the tumor, the more resistant it is to radio therapy. If this were not so, then X-ray therapy would have a high degree of success-which, of course, it does not. If the average tumor is composed of both cancer and non-cancer cells, and if radiation is more destructive to non-cancer cells than to cancer cells, then it would be logical to expect the results to be a reduction of tumor size, but also an increase in the percentage of malignancy. This is, in fact, exactly what happens. Commenting on this mechanism, Dr. John Richardson explained it this way:        Radiation and/or radiomimetic poisons will reduce palpable, gross or measurable tumefaction. Often this reduction may amount to seventy-five percent or more of the mass of the growth. These agents have a selective effect-radiation and poisons. They selectively kill everything except the definitively neoplastic [cancer] cells. For example, a benign uterine myoma will usually melt away under radiation like snow in the sun. If there be neoplastic cells in such tumor, these will remain. The size of the tumor may thus be decreased by ninety percent while the relative concentration of definitively neoplastic cells is thereby increased by ninety percent. As all experienced clinicians know-or at least should know- after radiation or poisons have reduced the gross tumefaction of the lesion the patient’s general well-being does not substantially improve. To the contrary, there is often an explosive or fulminating increase in the biological malignancy of his lesion. This is marked by the appearance of diffuse metastasis and a rapid deterioration in general vitality followed shortly by death.10 For more information see http://www.worldwithoutcancer.org.uk/hoax.html

Response:

Where’s our 18 year survivor hiding herself when we need here? Our 18 yr. Surgery/Chemo/Radiation Survivor I should have said huh? She’ll be back…. take care there God bless you annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

"Bugger Out!" <g annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

Let’s tell it like it is! Sasha :-) – Hide quoted text — Show quoted text – "Bugger Out!" <g annie Ultimately…..we know deeply that the other side of every fear is a freedom. "Courage"…is *fear* that has said it’s prayers.

Response:

I didn’t read this whole thread, but am a 20 year chemo survivor of lymphoma; and now an almost 1 year survivor of surgery/chemo/radiation for breast cancer. I think it works! My then-10- year- old has wife and 2 great children now I wouldn’t have seen without it! I’m truly blessed. Ann in PA

Response:

"TUMEFACTION"?????    Get real, a-h!

Response:

You’re a very good advertisement, Ann! Sasha – Hide quoted text — Show quoted text – I didn’t read this whole thread, but am a 20 year chemo survivor of lymphoma; and now an almost 1 year survivor of surgery/chemo/radiation for breast cancer. I think it works! My then-10- year- old has wife and 2 great children now I wouldn’t have seen without it! I’m truly blessed. Ann in PA

Response:

Information quoted from http://www.worldwithoutcancer.org.uk/hoax.html What, then, is the statistical chance for long-term survival of five years or more after surgery? That, we are told, depends on the location of the cancer, how fast it is growing, and whether it has spread to a secondary point. For example, two of the most common forms of cancer requiring surgery are of the breast and the lung. With breast cancer, only sixteen percent will respond favorably to surgery or X-ray therapy. With lung cancer, the percentage of patients who will survive five years after surgery is somewhere between five and ten percent.8  And these are optimistic figures when compared to survival expectations for some other types of cancers such as testicular chorionepitheliomas. When we turn to cancers which have metastasized to secondary locations, the picture becomes virtually hopeless-surgery or no surgery. As one cancer specialist summarized it bluntly:        A patient who has clinically detectable distant metastases when first seen has virtually a hopeless prognosis, as do patients who were apparently free of distant metastases at that time but who subsequently return with distant metastases.9        An objective appraisal, therefore, is that the statistical rate of long-term survival after surgery is, on the average at best, only ten or fifteen percent. And once the cancer has metastasized to a second location, surgery has almost no survival value. The reason is that, like the other therapies approved by orthodox medicine, surgery removes only the tumor. It does not remove the cause. The rationale behind X-ray therapy is the same as with surgery. The objective is to remove the tumor, but to do so by burning it away rather than cutting it out. Here, also, it is primarily the non-cancer cell that is destroyed. The more malignant the tumor, the more resistant it is to radio therapy. If this were not so, then X-ray therapy would have a high degree of success-which, of course, it does not. If the average tumor is composed of both cancer and non-cancer cells, and if radiation is more destructive to non-cancer cells than to cancer cells, then it would be logical to expect the results to be a reduction of tumor size, but also an increase in the percentage of malignancy. This is, in fact, exactly what happens. Commenting on this mechanism, Dr. John Richardson explained it this way:        Radiation and/or radiomimetic poisons will reduce palpable, gross or measurable tumefaction. Often this reduction may amount to seventy-five percent or more of the mass of the growth. These agents have a selective effect-radiation and poisons. They selectively kill everything except the definitively neoplastic [cancer] cells. For example, a benign uterine myoma will usually melt away under radiation like snow in the sun. If there be neoplastic cells in such tumor, these will remain. The size of the tumor may thus be decreased by ninety percent while the relative concentration of definitively neoplastic cells is thereby increased by ninety percent. As all experienced clinicians know-or at least should know- after radiation or poisons have reduced the gross tumefaction of the lesion the patient’s general well-being does not substantially improve. To the contrary, there is often an explosive or fulminating increase in the biological malignancy of his lesion. This is marked by the appearance of diffuse metastasis and a rapid deterioration in general vitality followed shortly by death.10 For more information see http://www.worldwithoutcancer.org.uk/hoax.html

Response:

Co-parenting Problems

Question:

Hiya Tim! You’ve got a good head on your shoulders (try to keep it there!) Thoughtful response – just some comments – (thinking I would get cooperation was a pipe dream)

Well, not necessarily a "pipe dream", but you tried it, and it doesn’t seem to be working. So, try something else. so minimizing dependence is a logical way to go.  For example, I’ve even gone so far as to buy at least double the amount of clothes they need so that I can have decent things for them at my house and not rely on their mother to send anything back.

I think this is a "no brainer", the packing thing gets to be old in a hurry. And why should kids feel they have to "pack" to go *to* a parent’s house? Seems silly. Also, as your use of "fruitcake" implies, keeping a sense of humor is important.

What do you mean? I will also push for solutions in arbitration — for example I might be able to get the arbitrator to decide that the girls should be in music lessons and that I would take them to music lessons regardless of which parent’s time the lessons fall on.

This is a hard one – you can try to schedule all the activities on your days, and take care of transportation when things need to be done on "not your days" – just call or pick the kid up and take care of what has to be done – but I can assure you that you will be taking on a *lot* of responsibility, and you will be trying to cram all of the parenting responsibity into half the time. If you can do this for more than a year, I would be amazed – it is exhausting. Doesn’t seem fair – all work and no play for Tim. But, parenting is like that. Thanks again, especially for the "you ‘can’ get there."

It’s what they tell me! Best – Fido

Response:

Tim, I am an attorney in Indiana who practices in family law. While I can’t represent you, please feel free to email me if you want to bounce some ;-)  I am assuming you are in Tippecanoe County if you are at Purdue. Denise — Cowards die many times before their deaths; The valiant never taste of death but once. -Shakespeare- – Hide quoted text — Show quoted text – Hi Barb, Thanks for the book idea and it is nice to know there are other procrastinator’s out there.  While married I always felt like I was walking on eggshells.  My instant reaction is that I’m done with that.  My instant reactions are often dead wrong though. Perhaps that approach might actually have a chance of working now, especially if contact is minimized. Cheers, Tim Tim, I’m not a psychologist, and so I’m not qualified to comment on your ex’s behavior. There’s a book called "Walking on Eggshells" which was recommended to me in dealing with my own "ex" situation.  Procrastinator that I am, I’ve never read it, but it might be worth your checking out. There are others here with far more experience than I in managing the kind of post-divorce issues you’re experiencing.  All I can do is offer my sincere sympathy — and welcome to ASD. Barb Hello to anyone kind enough to read my message, I am divorced (six months past the final decree) and have been struggling to co-parent with the ex-wife.  I have joint physical custody of two daughters (rising to 2nd and 3rd grade) — we are each supposed to have them about 50% of the time.  I love my daughters dearly, and will not do anything to hurt them (thus giving the ex-wife power). As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character — I do go back and forth on what the problem is though, as there is clear evidence of emotional difficulties.  She had severe fibromyalgia for the 10 years we were married (it "disappeared" during the long divorce process when she wanted full custody and falsely claimed to be a "stay at home mom") and she has recently been treated for breast cancer (a difficult one to face for her, but it was caught very early with a 90% expectation of survival).  Of course, she blames me for everything, including her illnesses. The hostility has been difficult with her calling the sheriff, interfering with my parenting time, frequently disparaging me to the children, she made a misleading/deceptive report to child protective services, has made MANY threats to call police if I don’t do exactly what she wants, she puts the girls in the middle every time she can so that she can get her way, she constantly calls people (parents of the girls’ friends, people at school, people in Girl Scouts, people at church) to spew her attacks on my character, and it just goes on and on.  There is something new (and egregious) about every week.  She harassed people in Girl Scouts (over my participation in activities) to the point they threatened to kick my daughters out if she didn’t stop. She had few friends to start with, but now has a growing number of people who observe what is going on and care about the children, polarized against her. (This too does no one any good.) Co-parenting requires cooperation and many decisions.  Reasonable decision-making requires trust, honesty, give and take, and basically negotiation in good faith.  I need help on how to cope with the difficulty of making decisions with a hostile liar.  Every little thing (not to mention big things) results in wasted time, high emotion, many phone calls, e-mail, and often she calls my friends too.  For example, a ’situation’ occurred yesterday over a trivial matter — she called and I said that I wouldn’t make an extra trip home from work to set out the girls boots for her and asked her to stop calling me at work so much — she responded "eat shit."  Today she e-mails me saying she didn’t swear at me, blamed me for her saying (what she didn’t say), claimed that is the FIRST time she has ever sworn at anyone (incredible lie) and attacked me with her lies/delusions about the past.   It is not easy to respond calmly and rationally, however, there is really no other sensible way.  It takes a lot out of me and takes time, perhaps an hour for me to settle completely back into being productive. (Or it takes longer if I search out a newsgroup, read a lot of the posts, and type a long post.)  This type of thing seems daily in occurrence. The divorce decree ordered monthly binding arbitration to assist with decisions.  She resists scheduling (has many excuses and pushes it off to well under once a month) and has refused to the best of her ability to follow two of the arbitrator’s rulings.   Arbitration is grueling — for example, it took 1 hour and 45 minutes to determine what weekend I would get in exchange for her traveling with the children this coming Father’s day weekend. The long run solution is to change custody but I don’t think that will happen soon (and it is only a partial solution — there would still be many difficulties).  Warning — venting ahead.  My frustrations have me saying that lawyers are useless and the courts are worse than useless. It also seems like custody is terribly biased toward mothers, and it seems like mothers can do about anything and get a pass — especially if they have been ill.  If I had denied my daughter psychological care, in spite of a ruling in binding arbitration, in spite of chest pains (and pediatrician recommendation of counseling), and the daughter ended up in the emergency room shaking and heart racing from anxiety — I would be in jail for child neglect — the mother on the other hand gets an automatic "pass." I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate… Thank you for any ideas, Tim

Response:

hiya Tim! :-)       Also, as your use of "fruitcake" implies, keeping a sense      of humor is       important.      What do you mean? I don’t mean anything deep — just that the "this broad is a fruitcake" comment was a humorous approach — and it is easy to lose the sense of humor when you life is turned upside down.

Humorous? Who was being humorous? – Hide quoted text — Show quoted text –       I will also push for solutions in arbitration — for       example I might be able to get the arbitrator to decide      that the girls       should be in music lessons and that I would take them to      music lessons       regardless of which parent’s time the lessons fall on.      This is a hard one – you can try to schedule all the      activities on your      days, and take care of transportation when things need to be      done on      "not your days" – just call or pick the kid up and take care      of what has      to be done – but I can assure you that you will be taking on      a *lot* of      responsibility, and you will be trying to cram all of the      parenting      responsibity into half the time.      If you can do this for more than a year, I would be amazed –      it is      exhausting. Doesn’t seem fair – all work and no play for      Tim. But,      parenting is like that. Your comment sounds like it is from someone who has experience at this.  How does one get decisions on what activities the kids will be involved in when they are parented out of two houses?  My approach isn’t working.  I thought you would decide what is in the best interest of the kids (including what their preferences are) without regard to which parent’s days the activities fall on.  Then address parental responsibility second.  I hear of kids who are on sports teams part time, only on one parent’s time.  That kind of thing just drives a stake through my heart.

You’ll suffer silently and die a thousand deaths. Ummm.. two daughters? You’ll die 2 thousand deaths. Just you wait, Enry Iggins, jus you woigt. – Hide quoted text — Show quoted text – One issue that has not been settled is church and Sunday School.  I would like to see my daughters attend only one church and attend Sunday School.  If they are divided between two churches, with inevitable travel, illness, and the like it seems unlikely they would have any continuity or real connection with either church.  I don’t understand how it could ever work for them to be in a choir, or participate in anything.  However, all my ex-wife wants to say is that she, "doesn’t want to see me there,"  "it turns my stomach to see you there," "people at church know what you are doing to me," "everyone at church knows what a hypocrite you are," and my favorite paranoid response, "you are trying to isolate me like all abusers do."  I find this crap annoying because she wouldn’t need to "see" me there — for example, the kids could always go with the parent they are with to Sunday School and the second service, and the other parent could go to the early service.  If we just ignore her emotional response, it is still an issue of how to handle this.  What do other people do?

Co-parenting requires co-operation. (Imagine Jesse Jackson saying it…) My kids’ mom and I have a terrible relationship, but we do manage to pay attention to the kids’ needs – one example is doctors and orthodontist appointments – the kids’ mom will schedule those during my "time" and I take care of it. School functions, plays, etc, you just work into your schedule – as any involved parent would do. Suppose, though, you think piano lessons are important and she doesn’t? She just ain’t gonna drop everything and take the kid to the lesson because it is what *you* want. So, you need to work around those things. That, unfortunately, caused a lot of activities to be dropped for my kids, and it is frustrating, but consistancy in attendance is important for those, and if one parent is not going to co-operate, you can’t make them. Some things, if *you* want to avail the kids of those things you will have to take all the responsibility for. I think you have a case where things arbitrated she would be bound to, but, if so, you will have to look to *enforce* those things. Unfortunately, like you, the court can not *make* her do those things – (but can, like the Sergant Major make her *wish* she done it). Parenting sometimes seems like a lot of time and a lot of effort — but I am convinced that parenting has even more pay back than it has work if you pay attention.  I am older than most parents with children ages 7 and 8, so I’m not as anxious as parents in their 20’s and 30’s to do my own thing.  For many years it was just about me and my spouse, now it is time for my daughters.  They will grow up all too soon, this intense effort (scheduling, driving, and the like) won’t last forever.

Just ten years to go! I have gotten the "what are you doing for yourself" from lots of people, including my counselor.  However, it seems that the more I give to my children and related activities, the more I get back.  I don’t know what the next direction of change will be, but right now it seems that having a lot of friends and doing what I believe is the right thing is what I need to do for ‘me.’

Becasue if *you* don’t take care of *yourself* then no one else will. And burnout might be a potential problem. Best – Fido – Hide quoted text — Show quoted text – Thanks for any advice, Tim

Response:

Hi Julio, Thank you for your comments — they are all insightful.  It is my observation of your number 4 that motivated my post.  I can do number 1 easily if communication is in writing, and I am not doing badly in person or on the phone (but I fall into number 4 after).  I spent the marriage years and the year of the divorce process viewing her as ill, lately I’m seeing a lot of evidence to the contrary, but we will see where that goes.  Your angle of spiritual "illness" is one to ponder. This leads to your third point.  The truth is — that was my failing in the marriage.  I couldn’t get over the expectation that I married an adult age person who expected the respect given to an equal, but who acted with the emotional maturity of a child.  Some of these things are coming full circle. It just might be that, although I couldn’t get there (approaching her as a needy child) in the marriage, I just might have much better luck with it in divorce.  Now that we are divorced there is no need to treat an unequal as an equal.  I have great patience with children and truly love my daughters’ friends and classmates — and they are not always angles.  Approaching her as a child might have potential and that is really something to ponder. Thank you, Tim – Hide quoted text — Show quoted text – As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character 1. Always take the high road. Don’t get sucked into it. Life’s too short. 2. Perceive her as ill – emotionally, spiritually. 3. Try to approach her as a needy child – lovingly if possible but always firm and adult. 4. Try not to let her take up too much space in your head. Think about how often she abuses you in your own head when she isn’t around and endeavor to not waste that energy.

Response:

I would suggest you at least TALK to an attorney to see where you are from a legla standpoint. That will help you at least consider some options. Not saying you have t do anything legally right now but I think you should sit down with an attorney and see if he/she can offer you other options. Denise — Cowards die many times before their deaths; The valiant never taste of death but once. -Shakespeare- – Hide quoted text — Show quoted text – Hello to anyone kind enough to read my message, I am divorced (six months past the final decree) and have been struggling to co-parent with the ex-wife.  I have joint physical custody of two daughters (rising to 2nd and 3rd grade) — we are each supposed to have them about 50% of the time.  I love my daughters dearly, and will not do anything to hurt them (thus giving the ex-wife power). As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character — I do go back and forth on what the problem is though, as there is clear evidence of emotional difficulties.  She had severe fibromyalgia for the 10 years we were married (it "disappeared" during the long divorce process when she wanted full custody and falsely claimed to be a "stay at home mom") and she has recently been treated for breast cancer (a difficult one to face for her, but it was caught very early with a 90% expectation of survival).  Of course, she blames me for everything, including her illnesses. The hostility has been difficult with her calling the sheriff, interfering with my parenting time, frequently disparaging me to the children, she made a misleading/deceptive report to child protective services, has made MANY threats to call police if I don’t do exactly what she wants, she puts the girls in the middle every time she can so that she can get her way, she constantly calls people (parents of the girls’ friends, people at school, people in Girl Scouts, people at church) to spew her attacks on my character, and it just goes on and on.  There is something new (and egregious) about every week.  She harassed people in Girl Scouts (over my participation in activities) to the point they threatened to kick my daughters out if she didn’t stop. She had few friends to start with, but now has a growing number of people who observe what is going on and care about the children, polarized against her. (This too does no one any good.) Co-parenting requires cooperation and many decisions.  Reasonable decision-making requires trust, honesty, give and take, and basically negotiation in good faith.  I need help on how to cope with the difficulty of making decisions with a hostile liar.  Every little thing (not to mention big things) results in wasted time, high emotion, many phone calls, e-mail, and often she calls my friends too.  For example, a ’situation’ occurred yesterday over a trivial matter — she called and I said that I wouldn’t make an extra trip home from work to set out the girls boots for her and asked her to stop calling me at work so much — she responded "eat shit."  Today she e-mails me saying she didn’t swear at me, blamed me for her saying (what she didn’t say), claimed that is the FIRST time she has ever sworn at anyone (incredible lie) and attacked me with her lies/delusions about the past.   It is not easy to respond calmly and rationally, however, there is really no other sensible way.  It takes a lot out of me and takes time, perhaps an hour for me to settle completely back into being productive. (Or it takes longer if I search out a newsgroup, read a lot of the posts, and type a long post.)  This type of thing seems daily in occurrence. The divorce decree ordered monthly binding arbitration to assist with decisions.  She resists scheduling (has many excuses and pushes it off to well under once a month) and has refused to the best of her ability to follow two of the arbitrator’s rulings.   Arbitration is grueling — for example, it took 1 hour and 45 minutes to determine what weekend I would get in exchange for her traveling with the children this coming Father’s day weekend. The long run solution is to change custody but I don’t think that will happen soon (and it is only a partial solution — there would still be many difficulties).  Warning — venting ahead.  My frustrations have me saying that lawyers are useless and the courts are worse than useless. It also seems like custody is terribly biased toward mothers, and it seems like mothers can do about anything and get a pass — especially if they have been ill.  If I had denied my daughter psychological care, in spite of a ruling in binding arbitration, in spite of chest pains (and pediatrician recommendation of counseling), and the daughter ended up in the emergency room shaking and heart racing from anxiety — I would be in jail for child neglect — the mother on the other hand gets an automatic "pass." I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate… Thank you for any ideas, Tim

Response:

Hi Barb, Thanks for the book idea and it is nice to know there are other procrastinator’s out there.  While married I always felt like I was walking on eggshells.  My instant reaction is that I’m done with that.  My instant reactions are often dead wrong though. Perhaps that approach might actually have a chance of working now, especially if contact is minimized. Cheers, Tim – Hide quoted text — Show quoted text – Tim, I’m not a psychologist, and so I’m not qualified to comment on your ex’s behavior. There’s a book called "Walking on Eggshells" which was recommended to me in dealing with my own "ex" situation.  Procrastinator that I am, I’ve never read it, but it might be worth your checking out. There are others here with far more experience than I in managing the kind of post-divorce issues you’re experiencing.  All I can do is offer my sincere sympathy — and welcome to ASD. Barb Hello to anyone kind enough to read my message, I am divorced (six months past the final decree) and have been struggling to co-parent with the ex-wife.  I have joint physical custody of two daughters (rising to 2nd and 3rd grade) — we are each supposed to have them about 50% of the time.  I love my daughters dearly, and will not do anything to hurt them (thus giving the ex-wife power). As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character — I do go back and forth on what the problem is though, as there is clear evidence of emotional difficulties.  She had severe fibromyalgia for the 10 years we were married (it "disappeared" during the long divorce process when she wanted full custody and falsely claimed to be a "stay at home mom") and she has recently been treated for breast cancer (a difficult one to face for her, but it was caught very early with a 90% expectation of survival).  Of course, she blames me for everything, including her illnesses. The hostility has been difficult with her calling the sheriff, interfering with my parenting time, frequently disparaging me to the children, she made a misleading/deceptive report to child protective services, has made MANY threats to call police if I don’t do exactly what she wants, she puts the girls in the middle every time she can so that she can get her way, she constantly calls people (parents of the girls’ friends, people at school, people in Girl Scouts, people at church) to spew her attacks on my character, and it just goes on and on.  There is something new (and egregious) about every week.  She harassed people in Girl Scouts (over my participation in activities) to the point they threatened to kick my daughters out if she didn’t stop. She had few friends to start with, but now has a growing number of people who observe what is going on and care about the children, polarized against her. (This too does no one any good.) Co-parenting requires cooperation and many decisions.  Reasonable decision-making requires trust, honesty, give and take, and basically negotiation in good faith.  I need help on how to cope with the difficulty of making decisions with a hostile liar.  Every little thing (not to mention big things) results in wasted time, high emotion, many phone calls, e-mail, and often she calls my friends too.  For example, a ’situation’ occurred yesterday over a trivial matter — she called and I said that I wouldn’t make an extra trip home from work to set out the girls boots for her and asked her to stop calling me at work so much — she responded "eat shit."  Today she e-mails me saying she didn’t swear at me, blamed me for her saying (what she didn’t say), claimed that is the FIRST time she has ever sworn at anyone (incredible lie) and attacked me with her lies/delusions about the past.   It is not easy to respond calmly and rationally, however, there is really no other sensible way.  It takes a lot out of me and takes time, perhaps an hour for me to settle completely back into being productive. (Or it takes longer if I search out a newsgroup, read a lot of the posts, and type a long post.)  This type of thing seems daily in occurrence. The divorce decree ordered monthly binding arbitration to assist with decisions.  She resists scheduling (has many excuses and pushes it off to well under once a month) and has refused to the best of her ability to follow two of the arbitrator’s rulings.   Arbitration is grueling — for example, it took 1 hour and 45 minutes to determine what weekend I would get in exchange for her traveling with the children this coming Father’s day weekend. The long run solution is to change custody but I don’t think that will happen soon (and it is only a partial solution — there would still be many difficulties).  Warning — venting ahead.  My frustrations have me saying that lawyers are useless and the courts are worse than useless. It also seems like custody is terribly biased toward mothers, and it seems like mothers can do about anything and get a pass — especially if they have been ill.  If I had denied my daughter psychological care, in spite of a ruling in binding arbitration, in spite of chest pains (and pediatrician recommendation of counseling), and the daughter ended up in the emergency room shaking and heart racing from anxiety — I would be in jail for child neglect — the mother on the other hand gets an automatic "pass." I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate… Thank you for any ideas, Tim

Response:

Hey Fido, thanks for the advice.  I’ve definately headed in the direction of getting as separate from her parenting as I can.  It seems wrong, but survival is a higher priority.  It is amazing how entangled parenting can get with kids this age, but even civil interaction is not going to happen (thinking I would get cooperation was a pipe dream) so minimizing dependence is a logical way to go.  For example, I’ve even gone so far as to buy at least double the amount of clothes they need so that I can have decent things for them at my house and not rely on their mother to send anything back. Also, as your use of "fruitcake" implies, keeping a sense of humor is important. One area that entanglement seems difficult to avoid is the girls activities.  I am stuck on that one.  Last year it worked out that the activities were all on my "days."  She dropped the activities on her time, and the weekend things just happened to fall on virtually all my weekends. However, this is not going to work as the level of activity increases.  With her emotional and health problems, she does not follow through well on anything with a rigid time (e.g., organized sports, Sunday School, lessons, meetings, etc.).  She knows that untimately this stuff is going to come back and be used against her, so she will try to sabatoge activities rather than have me take the girls on her time.  The ’solution’ that I have used so far is just to create things for the girls to do with their friends on the days that I have them.  I will also push for solutions in arbitration — for example I might be able to get the arbitrator to decide that the girls should be in music lessons and that I would take them to music lessons regardless of which parent’s time the lessons fall on. Thanks again, especially for the "you ‘can’ get there." Cheers, Tim – Hide quoted text — Show quoted text – Hello to anyone kind enough to read my message, Hiya, Tim! I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate… Naw, you’re probably in the right place. I think you have two workable options: 1. Go for full custody, this broad is a fruitcake. 2. Separate your parenting from hers – yeah, I know – co-parenting and all…. but do what you need to do when the kids are with you and forget about them when they are with her. At least the kids will only be driven loopy half of the time – and you a lot less. Finesse the monthly arbetration thing (amazing!) don’t do her stuff, and don’t worry about it. Just get it so that nothing you need to do is contingent or dependent on something she is supposed to do. The idea is to get you in a place where it doesn’t matter what she does – it won’t affect you. And you *can* get there. It’s a detachment thing. If she won’t co-operate with the co-parenting thing, then just stop humping that puppy, it just ain’t gonna hunt no matter what you would like to happen. Great story by the way, a classic. Sorry about your troubles, though, and it is too bad the kids are caught in the middle, but, sometimes life sucks. Sometimes it doesn’t. Best – Fido Thank you for any ideas, Tim

Response:

– Hide quoted text — Show quoted text – * Hello to anyone kind enough to read my message, * * I am divorced (six months past the final decree) and have been * struggling to co-parent with the ex-wife.  I have joint physical custody * of two daughters (rising to 2nd and 3rd grade) — we are each supposed * to have them about 50% of the time.  I love my daughters dearly, and * will not do anything to hurt them (thus giving the ex-wife power). * * As I move on with life, I need to figure out out to cope better with a * hostile, self-centered, lying co-parent.  My friends think she suffers * from emotional problems, and the MMPI in the custody evaluation points * that direction ("severe emotional difficulties").  I am currently of the * view that it is more probable than not, that she is just a person low * character — I do go back and forth on what the problem is though, as * there is clear evidence of emotional difficulties.  She had severe * fibromyalgia for the 10 years we were married (it "disappeared" during * the long divorce process when she wanted full custody and falsely * claimed to be a "stay at home mom") and she has recently been treated * for breast cancer (a difficult one to face for her, but it was caught * very early with a 90% expectation of survival).  Of course, she blames * me for everything, including her illnesses. I would suggest doublechecking her chances of long term survival, esp. if it is early breast cancer. Also, I am hoping that you are aware that early breast cancer is often hereditary and that your daughters may be at risk. As for the rest, it seems like there was a reason why you guys divorced… I am sorry about all these annoyances… It is very difficult to deal with mean spirited persons. igor

Damn, at first I thought this was a serious post about the problems of co-parenting! After getting burned on the "handjob" post, I’m reluctant to respond to what sounds like another troll-job. M

Response:

I wasn’t able to get back to the newsgroup until this morning and all the posts are extremely kind.  Janie has some specific questions. First, let me note that I was extremely fortunate to get joint physical custody (actually I think it was my daughters that were lucky).  Joint physical custody is not in the law in Indiana and the judge went out on a limb to award it.  It is awarded if the parents agree, but there was NO agreement here.  By the way, the judge committed suicide for reasons that are not known (publicly at least) within a month after the final decree.  The newly appointed judge is evidently not making decisions of any kind, perhaps trying to maximize chance of election in the fall.  He will run and lose to my attorney’s partner (the new judge is a democrat and it is highly unlikely that a democrat will win a local election here). There was a GAL appointed right after she filed for divorce, he chose the ex-wife.  He is an attorney and perhaps a nice man, but he has no qualifications in the area of mental health.  He based his decision on who he thought did 51% or more of the direct care of the children.  With the ex being at home, it was hard to convince him that she didn’t do more than I did.  This was especially true because the ex got a good attorney 6 months before she filed and spent that time preparing her case.  The ex-wife falsely accused me of abuse, neglect, alcoholism, and every mean nasty thing you can think of except sexual abuse (I believe that they would have used that lie too if they though it would have helped their case).  She claimed that I had no interest in the children at all, did nothing with them, and on and on.   I honestly do not think the GAL believed her, but much to my surprise, rather than disbelieve everything she said when she was obviously lying, he chose to believe neither of us.  I did have a daily calendar/diary detailing the ex’s illness’ (in her own writing), and I found her "divorce" notebook with her plans written in it and much incriminating material.  But again, the situation gave the appearance of two people fighting so neither was given much credit and the GAL went with the mother.  My personal counselor is a professor at the university and in one of his seminar classes they reviewed GAL reports.  He told me that all the reports from this GAL turned on the same issue — who did the majority of the daily care. Since I believed the issues the were mental health I got an additional attorney who was able to get a custody evaluation done by a psychologist.  I was so far "behind" at that point, and facing the ex being likely able to take the children from Indiana to Florida where her family and support system would be, I focused on joint physical custody — at least that would keep the girls here and give me time to let joint custody work (or not).  I believe that the research shows that children do no worse and often much better in that arrangement.  Once I was kicked out of my home by the system, I realized that I was free to do the best that I could for my children — I no longer had three to take care of, it was just the two children.  In the marriage, the ex-wife’s physical and mental illnesses kept us isolated and constrained in unbelievable ways.  I failed to overcome that, and I was increasingly unable to work with her toward reasonable solutions to large or small problems.  I digress — anyway, my entire focus has been to do what is best for the children.  The psychologist/custody-evaluator did the MMPI and came up with the joint physical custody recommendation with monthly arbitration.  The GAL never really spent much additional time on it, and did not seem inclined to admit to making any error in his recommendation.  I now have the children going to the psychologist who did the custody evaluation as their psychologist.  They are doing better since starting to see her. My first attorney is a rational good man.  But he is not aggressive, and got beat up by the other attorney in the couple of court appearances we had before the trial.  I had to get another attorney to do the four days of trial that the divorce took and she got the joint custody for me, but I lost BIG time financially.  The second attorney did little to prepare and just wasn’t functional outside of the courtroom (in the courtroom she was somewhat of an idiot savant).  Neither of these attorneys are what I need, but I kept the first one on, and wanted to use him to finish up the details.  Then there has been a series of actions that have required that I use someone (defend against the protective order, get the arbitration decisions implemented, and others), and I can’t really even afford another big retainer to start with another attorney right now. My attorney’s current advice, and the advice of a friend who is an investigator and heavily involved in these kind of matters, is that custody will not change if the children are not hurt.  The psychologist thankfully says that they are doing well at this point.  I have the sense that I am hurting my custody case by making sure that my children are well, but so be it, and I am thankful for that blessing.  When I was kicked out of the house, I made sure that I saw the girls every day (and did all buy one day of the first 60 days that I was out of my home).  The ex did everything she could do to keep me away, but she couldn’t stop me from doing things at school with them, even if it was just going to eat lunch with them.  My daughters are very shy partially by nature and partially because they got out so little (and no one was allowed to our house) for the first 5/6 years of their lives.  I made it my goals to get them socialized, get them with their friends as often as possible and just get out and go places and do things.  It has worked wonderfully.  I honestly believe that I can make them be well, by loving them with every ounce of energy that I have.  Prior to the separation my role was to take care of them in the morning, some after school, and evenings/weekends.  They were never allowed to go to their mother at night and I also did virtually 100% of the night-time care as infants.  By the way, they are adopted.  In particular, I had to protect them from the irrational demands/actions of their mother, so there was a lot of picking up crying, emotionally hurt children off of the floor.  Their mother has a bad back and is not supposed to lift more than 7 pounds, so I have done all the lifting and giving them physical comfort.  We still watch movies snuggled together now in a big couch (the three of us no longer fit in a recliner) almost every night that they are with me.  I paid for one year of a series of mostly unreliable day-time in home care, then two years of day-time nannies, then day care for a couple of years.  Then, when school started for the oldest and the other was in pre-school (and the attorney visited) the ex wanted to "save" the money and try to care for them after school, until I got home. (Thus the GAL’s decision criteria was met.)  Oops, I seem to have gotten off topic. So there are several reasons that I am not pushing for a change in custody at this time. 1. The ex has been ill and she is getting a "pass" on all her crazy actions, 2. I probably don’t have the right attorney, 3. We have to wait for this judge to move on, 4. The children are doing OK, and 5. It still wouldn’t solve all the problems.  With respect to the latter, I mean that I can’t see her getting less that the Indiana minimum (every other weekend, one day a week, and half of the summer).  There would still be plenty of ways that she could cause trouble.  Also, the children love her and want to spend time with her.  I am not sure that the minimum would be enough time for them to be with her anyway.  Still, if the joint physical possession was changed, then there would be a number of decisions that would be a lot easier and indeed the problems would be reduced by them spending less than 50% of the time with their mother. One issue is that the school-year schedule creates more interaction than needed with going back and forth many days (Monday and Wednesday are hers and Tuesday and Thursday are mine).  I am trying to change the schedule in arbitration. So, we get to what I wanted to focus my post on which is how in Hades to cope with a difficult person.  Several of you have made some great suggestions on how to cope, I will reply to the posts above when I get the chance rather than add more to this version of War and Peace. Thanks Janie.  All of these posts have been so considerate and thoughtful… Cheers, Tim – Hide quoted text — Show quoted text – <snip Co-parenting requires cooperation and many decisions.  Reasonable decision-making requires trust, honesty, give and take, and basically negotiation in good faith.  I need help on how to cope with the difficulty of making decisions with a hostile liar. I think joint custody with this type of parent involved was probably not the best way to go for the children.  Water under the bridge and all, and I’m sure your choices were limited.  But my first thought is that it would be much better for the children if you had full custody and she had as much of 50% access time with the children as she desires.  But she doesn’t seem capable of joint decision making, and the kids shouldn’t have to suffer for that.  :-( <snipped examples of frustrating intereference in daily productivity The long run solution is to change custody but I don’t think that will happen soon (and it is only a partial solution — there would still be many difficulties).  Warning — venting ahead.  My frustrations have me saying that lawyers are useless and the courts are worse than useless. It also seems like custody is terribly biased toward mothers, and it seems like mothers can do about anything and get a pass

… read more »

Response:

Hello to anyone kind enough to read my message,

Hiya, Tim! I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate…

Naw, you’re probably in the right place. I think you have two workable options: 1. Go for full custody, this broad is a fruitcake. 2. Separate your parenting from hers – yeah, I know – co-parenting and all…. but do what you need to do when the kids are with you and forget about them when they are with her. At least the kids will only be driven loopy half of the time – and you a lot less. Finesse the monthly arbetration thing (amazing!) don’t do her stuff, and don’t worry about it. Just get it so that nothing you need to do is contingent or dependent on something she is supposed to do. The idea is to get you in a place where it doesn’t matter what she does – it won’t affect you. And you *can* get there. It’s a detachment thing. If she won’t co-operate with the co-parenting thing, then just stop humping that puppy, it just ain’t gonna hunt no matter what you would like to happen. Great story by the way, a classic. Sorry about your troubles, though, and it is too bad the kids are caught in the middle, but, sometimes life sucks. Sometimes it doesn’t. Best – Fido – Hide quoted text — Show quoted text – Thank you for any ideas, Tim

Response:

As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character

1. Always take the high road. Don’t get sucked into it. Life’s too short. 2. Perceive her as ill – emotionally, spiritually. 3. Try to approach her as a needy child – lovingly if possible but always firm and adult. 4. Try not to let her take up too much space in your head. Think about how often she abuses you in your own head when she isn’t around and endeavor to not waste that energy.

Response:

Hello to anyone kind enough to read my message, I am divorced (six months past the final decree) and have been struggling to co-parent with the ex-wife.  I have joint physical custody of two daughters (rising to 2nd and 3rd grade) — we are each supposed to have them about 50% of the time.  I love my daughters dearly, and will not do anything to hurt them (thus giving the ex-wife power). As I move on with life, I need to figure out out to cope better with a hostile, self-centered, lying co-parent.  My friends think she suffers from emotional problems, and the MMPI in the custody evaluation points that direction ("severe emotional difficulties").  I am currently of the view that it is more probable than not, that she is just a person low character — I do go back and forth on what the problem is though, as there is clear evidence of emotional difficulties.  She had severe fibromyalgia for the 10 years we were married (it "disappeared" during the long divorce process when she wanted full custody and falsely claimed to be a "stay at home mom") and she has recently been treated for breast cancer (a difficult one to face for her, but it was caught very early with a 90% expectation of survival).  Of course, she blames me for everything, including her illnesses. The hostility has been difficult with her calling the sheriff, interfering with my parenting time, frequently disparaging me to the children, she made a misleading/deceptive report to child protective services, has made MANY threats to call police if I don’t do exactly what she wants, she puts the girls in the middle every time she can so that she can get her way, she constantly calls people (parents of the girls’ friends, people at school, people in Girl Scouts, people at church) to spew her attacks on my character, and it just goes on and on.  There is something new (and egregious) about every week.  She harassed people in Girl Scouts (over my participation in activities) to the point they threatened to kick my daughters out if she didn’t stop. She had few friends to start with, but now has a growing number of people who observe what is going on and care about the children, polarized against her. (This too does no one any good.) Co-parenting requires cooperation and many decisions.  Reasonable decision-making requires trust, honesty, give and take, and basically negotiation in good faith.  I need help on how to cope with the difficulty of making decisions with a hostile liar.  Every little thing (not to mention big things) results in wasted time, high emotion, many phone calls, e-mail, and often she calls my friends too.  For example, a ’situation’ occurred yesterday over a trivial matter — she called and I said that I wouldn’t make an extra trip home from work to set out the girls boots for her and asked her to stop calling me at work so much — she responded "eat shit."  Today she e-mails me saying she didn’t swear at me, blamed me for her saying (what she didn’t say), claimed that is the FIRST time she has ever sworn at anyone (incredible lie) and attacked me with her lies/delusions about the past.   It is not easy to respond calmly and rationally, however, there is really no other sensible way.  It takes a lot out of me and takes time, perhaps an hour for me to settle completely back into being productive. (Or it takes longer if I search out a newsgroup, read a lot of the posts, and type a long post.)  This type of thing seems daily in occurrence. The divorce decree ordered monthly binding arbitration to assist with decisions.  She resists scheduling (has many excuses and pushes it off to well under once a month) and has refused to the best of her ability to follow two of the arbitrator’s rulings.   Arbitration is grueling — for example, it took 1 hour and 45 minutes to determine what weekend I would get in exchange for her traveling with the children this coming Father’s day weekend. The long run solution is to change custody but I don’t think that will happen soon (and it is only a partial solution — there would still be many difficulties).  Warning — venting ahead.  My frustrations have me saying that lawyers are useless and the courts are worse than useless. It also seems like custody is terribly biased toward mothers, and it seems like mothers can do about anything and get a pass — especially if they have been ill.  If I had denied my daughter psychological care, in spite of a ruling in binding arbitration, in spite of chest pains (and pediatrician recommendation of counseling), and the daughter ended up in the emergency room shaking and heart racing from anxiety — I would be in jail for child neglect — the mother on the other hand gets an automatic "pass." I am wondering how others cope in similar situations.  I suspect that this is not terribly uncommon.  Perhaps another newsgroup is more appropriate… Thank you for any ideas, Tim

Response:

Advice for a mom

Question:

I was 46 when dx 9 years ago.  Support is the most important thing you can do for your daughter.  Please don’t say things like "think positive" all the time.  My mum did and it drove me mad.  She had always been well and didn’t seem to know how to cope or understand what I was going through whilst having chemo and rads.  My husband was sent o/s and missed one of my chemo treatments so they came down to stay for the weekend.  I remember that she was unable to take me and a neighbour did (just couldn’t cope I think) and put her energies into cooking something special.  Would you believe crumbed lambs brains.  Well….the smell of the preparation, deveining etc, guess what, I still can’t eat them.  Intentions were good but what I wanted was sympathy, understanding and lots of it.  By all means learn as much as you can about her treatments, how they are going to make her feel etc.  Also have a look at the site www.friendsinneed.com it may help you in understanding her needs.   Best of luck Jo

– Hide quoted text — Show quoted text – My 43 year old daughter was recently diagnosed with breast cancer. She  had surgery to have the cancer removed and further tests showed it thankfully hasn’t spread elsewhere. She now has to go through chemotherapy and radiation.  I am wondering if anyone can tell me what to expect and how to help her.  Or direct me to some websites to start. Any thoughts are welcome.

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My 43 year old daughter was recently diagnosed with breast cancer. She  had surgery to have the cancer removed and further tests showed it thankfully hasn’t spread elsewhere. She now has to go through chemotherapy and radiation.  I am wondering if anyone can tell me what to expect and how to help her.  Or direct me to some websites to start. Any thoughts are welcome.

Response:

Just being there for her is going to be the best thing you can do. Understanding what she is going thru, not being too judgemental if she makes a decision that you disagree with (such as alternative therapies, clinical trials, etc..).  Remember that she is an adult (even if she will always be your baby).  Those are just my first thoughts when I think about how I would like my mom to help me.  :) You might want to purchase Susan Love’s Breast Book. If you live close by, then offer to give rides and go with her.  Hold her hand if she needs it (and try not to be upset if she doesn’t). :) I’m 41 and am about in the same place as your daughter.  Just had surgery, will see the oncologist for the first time tomorrow.  My parents don’t live in the same state I do and it’s been hard.  Part of me needs MOM, the other part knows that I am an adult and can handle this. :) And we are all here for both you and your daughter, should either of you have questions.  I’m still new to all this but there are some fabulous ladies and even some really great men in this group with lots of various knowledge and experiances to share. :) catherine

– Hide quoted text — Show quoted text – My 43 year old daughter was recently diagnosed with breast cancer. She  had surgery to have the cancer removed and further tests showed it thankfully hasn’t spread elsewhere. She now has to go through chemotherapy and radiation.  I am wondering if anyone can tell me what to expect and how to help her.  Or direct me to some websites to start. Any thoughts are welcome.

Response:

My 43 year old daughter was recently diagnosed with breast cancer. She  had surgery to have the cancer removed and further tests showed it thankfully hasn’t spread elsewhere. She now has to go through chemotherapy and radiation.  I am wondering if anyone can tell me what to expect and how to help her.  Or direct me to some websites to start. Any thoughts are welcome.

I thought about this question all day, trying to figure out what to say. You see, I had a lot of trouble with my Mom after my diagnosis.  So what I decided to do was tell you one thing that my folks did that was great, and one piece of advice that I have for you that my folks did wrong.  (Details available upon request of some really stupid, stupid things that you shouldn’t say to your daughter after she has been diagnosed.) One of the greatest things you can do for your daughter is, if you can do so, open your checkbook.  Because I am self-employed, I had no benefits. (We did have wonderful health insurance through my husband’s job.  But when I closed down for five weeks, I didn’t get paid for those five weeks.  Then I worked part time for a couple of months.)  About the time I closed down my day care, there were several important bills that were coming due.  Mom wrote me a check to cover these bills.  That in itself took a huge load off my mind.  She did it again two months later.  Every year my husband had been with his company, he had gotten a nice Christmas bonus.  Several years, it was over $1000 dollars.  The year I was laid up, instead of a bonus, they gave out lay off notices to about 20% of the employees.  Again, she wrote me a check to help with the bills.  She kept telling me that there was so little she could do to help, giving/loaning me money was one of the few things she could do. Now for a piece of advice.  Your daughter is the same age I was when I was diagnosed (Sept. 00).  Which means she probably had kids.  Mine were 11 and 14 when I was diagnosed.  Husband and I decided that the way we were going to handle my cancer was not to make a big deal out of it.  We never discussed "Mom has cancer".  We talked about "Mom is having surgery" and "Mom is going through chemo".  My cancer was caught very early.  Survival rate was 97%.  We saw no reason to make this any worse than necessary.  My parents, however, didn’t agree with this.  They spent a lot of time trying to tell my kids how serious it all was, how they were going to put poison in my body, how I should tell my kids "No" more often, how I shouldn’t let them be involved in all the activities.  They should come home and help me.  They were upset with how the kids were reacting (denial, which is normal for teenagers).  They told the kids several things we had asked them not too. I guess what I’m trying to say is, everyone reacts to the cancer differently.  And while I know it’s hard to find out that your daughter has cancer, you need to let her handle it, and handle her kids in her own way. It may not be the way you would handle it, but we all have to get through this the best that we can. OK, enough complaining about my Mom. Peg

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Patricia, I’m sorry to hear about your daughter.  I’ve been in both places, my mother is a bc survivor as am I.  We’re both pretty independent and really wanted to just, "do our thing."  I waited until she asked for hel.  She didn’t, but I made her and my dad some frozen casseroles and cookies anyway. She, in turn, waited for me to ask for help.  I didn’t and she and my sister drove 1 1/2 hours to change my linens two times a week for the first two weeks following my mastectomy.  I hope that I remembered to tell them how wonderful that was. Does your daughter have kids?  They can be a real drain and some help in being a taxi driver, feeding them, and doing their laundry can be a big boon.  I think that it was the small things that bothered me…a dusty table a dirty sink, stuff like that. I hope that all goes well for her.  Please visit and ask away if you have any other questions. Take care. …lisa

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She now has to go through chemotherapy and radiation.  I am wondering if anyone can tell me what to expect and how to help her.  Or direct me to some websites to start. Any thoughts are welcome.

Oh, Patricia, I feel for you.  I remember how my mom was when I was going through chemo treatments for the first time, and I truly felt worse for her than I did for myself. Every mother/daughter dynamic is different.  I know that I didn’t like to have my mom with me AT ALL TIMES because there were times when I had to ask my doctor things about sex, etc. that I was embarrased to talk about in front of my mother.  (And I was a supposedly grown-up girl of 35!) I also didn’t like to have my mother with me a lot because she came from a generation where breast cancer was a death sentence, and she definitely gave out distress signals at all times.  In a way, that was good, as I could concentrate on comforting her and it got my mind off of my own miseries, but in another way, it was bad, because I didn’t come to terms with a lot of my own misery. — Aloha, Catharine Character is what you do when no one’s watching.

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