More obsessing about ADH

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momoschki
momoschki Member Posts: 682

Just wondering... I am aware of all the statistics relating to how often ADH will turn into cancer, both invasive and non-invasive, but what are the chances that once excised, there will be further occurences of ADH down the road?  Curious (read:  anxious) about the likelihood of further needle biopsies, excisional biopsies, and so on...

I am 54, no family history of any cancer at all.  Following my dx, had an excisional biopsy first-- sample came back completely clean-- all ADH apparently removed by the prior needle biopsy.  Then saw a PS at Weill Cornell who specializes in oncoplastic risk reducing breast reductions for high risk women.  She removed approx. 800 grams of tissue, which she said should reduce my risk by about 50%.   I am currently seeing an integrative oncologist (also from Cornell) who has prescribed fistfuls of supplements.  I was leery of Tamoxifen and my onco said in my case, it would only afford very modest benefits anyway.

Can't help but worry that the ADH may arise again in the future and perhaps someone out there has some hard data on this? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    momoschki------i can't give you any data, but I can relate my experience. I was diagnosed with LCIS (a step further along the bc spectrum with double the risk of ADH) and my risk is further elevated by family history of bc (mom had ILC). I have been doing high risk surveillance for nearly 8 years now and taking preventative meds---5 years tamoxifen and now evista for over 2 years, and haven't needed any further biopsies.  Tamoxifen can decrease your risk up to 45 to 50%. Feel free to PM me if you'd like to talk more.

    Anne 

  • leaf
    leaf Member Posts: 8,188
    edited July 2011

    I also have LCIS, also ALH and DH (though not ADH - its the atypical adjective that really adds to the risk). 

    The science of breast cancer prediction is definitely in its infancy.  Even for women who *don't* have a higher risk lesion, models such as the modified Gail model *for any particular individual woman* are 'better than the toss of a coin, but not by much'. http://jnci.oxfordjournals.org/content/98/23/1673.long  

    If that's what they say about women withOUT higher risk lesions, you can imagine our state of knowledge about women who HAVE higher risk lesions.

    So there is a LOT of uncertainty.

    Also, different studies differ.  Many studies group ALH and ADH together, because the numbers of subjects are so small.

    In this Mayo study, which grouped ALH and ADH women together, The 331 women with atypia were followed for a total of 4,543 person-years (mean 13.7 years), with 66 (19.9%) observed breast cancer events to date.http://jco.ascopubs.org/content/25/19/2671.full

    In this study in 2007,  In keeping with the results from our prior study and from other previous studies,1–15 the current results continue to indicate that women with AH are at a substantially increased risk of breast cancer (approximately 4-fold compared with women who have nonproliferative lesions). http://onlinelibrary.wiley.com/doi/10.1002/cncr.22408/full

    Note this '4 fold' is NOT NOT NOT 4 x 13% of a lifetime chance of breast cancer, but 4 x the risk of women WITHOUT any particular risk factor, which may be ??about 3-5% so 4x 3-5%= 12-20% approximately.

    I am NOT NOT a statistics guru, there are a lot of statistics I do NOT understand.  One of these papers describes OR (odds ratio) and I do NOT have an intuitive feel for what that means.

  • AMP614
    AMP614 Member Posts: 41
    edited July 2011

    I just returned home from seeing my oncologist. First visit, not the last but it is about preventing BC. As she kept reminding me, I DO NOT HAVE CANCER. I do however have ADH, which was removed June 6. This puts me at a higher risk for developing BC along with other factors. The subject of Tamoxifen was brought up, I was told to take a few months and think about it. As it would decrease my risk of developing cancer by 50%. I have a 27% chance of developing BC in my lifetime at this stage. So that would bring me down to a 13% chance. I believe the average is 11 or 12% for the general population, therefore leaving me at a higher risk anyway. The risks of tamoxifen include Deep Vein Thrombosis (blood clots), pulmonary embolisism, a list of other side effects. With the ADH before the excisional biopsy my risk of it being cancer was 30%. It came back B9... So here is my thought, do I take a medication that could cause me to have a stroke in order to decrease my chances of developing cancer, or do I take my chances? 

    I flat out side to the doctor that the test results for the benefits of Tamoxifen are great, however, she was telling me that my 27% risk doesn't mean I will get cancer in my lifetime, so how do you know that the women who were in the Tamoxifen study would have developed cancer? Based on risk I could have been a part of the study so.... What do you do? You make the best decision for yourself and hope that you never get cancer. There is no guarantee that Tamoxifen will prevent me from getting cancer. There is no guarantee that if I don't take it, I will get cancer. I am thinking right now, I will take my chances and not add any extra drugs to my system.

    Sorry I am rambling, you are right there is no way to know if you will develop ADH again, but ADH isn't cancer. They aren't even sure (yes, I asked the oncologist this today) if develops into cancer, only that it is a warning sign your cells are doing something funky and to watch. They remove ADH to be sure there isn't DCIS around it or worse. But it isn't cancer. Yes, you may someday have to go through another biopsy, but honestly to me the ADH means they will watch me more closely and I don't think that is a bad thing. I am scheduled for a baseline MRI in August due to the ADH and "extremely" dense breasts. She told me I didn't need to do it right away, and wanted me to get over my other surgeries, I want it done and over with and then I am done with appointments til Novemeber!! YIPPEE 

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited July 2011

    Momoschki - what kind of supplements are you taking? I am afraid to start Tamoxifen right now. Wondering what your docs thought might help - thanks!!

  • momoschki
    momoschki Member Posts: 682
    edited July 2011

    Carpe-- there are so many supplements I couldn't possibly list them all, but in the morning, there is a shake with various antioxident powders (black raspberry, pomegranate), resveratrol, and some other stuff.  Then every night, there is DIM, tumeric, shiitake, rosemaria, curcubita (pumpkin seed), and again, others things.  A full strength aspirin every other day.  I think I counted a total of over 30 things--my onc is sort of a zealot.

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited July 2011

    I would be willing to try this!  I feel like I am not doing anything to prevent what could happen (or is already cooking inside from marching forward) - are there "recipes" anywhere for these concoctions? Thanks so much!  

  • momoschki
    momoschki Member Posts: 682
    edited July 2011

    Carpe,

    I am sending you a PM with the complete list.

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited July 2011

    Got it - many many thanks!!! 

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