risk reducing breast reduction?

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momoschki
momoschki Member Posts: 682
edited June 2014 in High Risk for Breast Cancer

After what seems like a rather convoluted route, I was finally dx'ed wth ADH, which my doctor tells me now puts me squarely in the high risk category, with a risk of 25% going forward 15 years of developing BC.  I shifted into high research mode and unearthed a bunch of studies (mostly done in Canada, Denmark, and Sweden) that followed thousands of women, some of them for as long as 20 years, who had undergone breast reductions.  These were both women with average BC risk factors, as well as those considered high risk.  What all these studies uniformly point to is that the women who underwent the surgical reductions ended up with less BC than would have been statistically  expected;  in some cases, the risk was reduced as much as 76%  Risk reductions were higher in women who were over 50 when the procedure was done and were also directly  proportional to the amount of tissue removed.  To me, this seems extremely compelling.

I am not a candidate for tamoxifen for a variety of reasons, and am large breasted, and am at the point where I am considering this surgery in hopes of reducing risk.  Of course, I will be on the regular 6 month circuit of mammos/US/MRI.  My breast surgeon who did my excisional biopsy was initially quite dismissive, but after I showed her some of the literature I had collected (she said in 20 years of practice, I was the first patient ever to have done this), she conceded that as I am not a contender for PBMX, this might be a good middle ground tactic to deal with my situation.

 This research appears to not be well known in this country and I am concerned that when I show up for the PS consults I have arranged, I will not be taken seriously and be viewed as some kind of lunatic.  At this point, I really think I have a good and realistic understanding of what benfits the surgery could confer and in no way consider it a definite path to a cure or guarantees.

Has anyone else had experience with this?  I am extremely nervous about marching into these PS' offices and putting myself in the position of trying to justify an "off label" use of a procedure. 

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  • DocBabs
    DocBabs Member Posts: 775
    edited March 2011

    I don't really understand the logic of the surgery.How does the PS decide what area to reduce?I'm assuming that it would include the area having ADH and then normal tissue from the other breast?What if ADH is lurking somewhere in the tissue that's left behind? Seems to me that a lumpectomy of the positive area in question would be the same or a bilaterial mastectomy to get rid off all tissue.The bilaterial seems a little aggressive at this point. You might have a harder time explaining the off label use of the surgery to your insurance than the PS. Interesting??

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  • momoschki
    momoschki Member Posts: 682
    edited March 2011

    No ADH remaining, according to the lumpectomy  path results.  Everything came back totally normal from that.  I think the logic behind it is that by removing glandular tissue, you reduce risk.  My BS has said that at this point, I am in no way a candidate for bilateral MX and that she would not consider it.    I am considering this as perhaps a more compromise procedure:  not as drastic as the BMX, but more aggressive than merelythe 6 month monitoring protocol.

     And yes, of course, I would not expect that my insurance would reimburse for this-- unless we can justify the surgery from the more usual perspective of  currently large breasts causing back pain, shoulder grooves from bra, being out of proportion with the rest of my body. But my assumption would be that if I went forward with this, it would be out of pocket.

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  • momoschki
    momoschki Member Posts: 682
    edited March 2011

    Yes, I absolutely understand it is not a guarantee, but as I am now not a candidate for PBMX and am really uncomfortable with only the "high surveillance" circuit, thought the reduction might confer some realistic risk reduction.  It's a crap shoot-- just trying to improve my odds.

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  • jtslg
    jtslg Member Posts: 28
    edited March 2011

    I had a reduction three weeks ago (for back pain issues) and the Pathology report came back showing AHL in left and LCIS multifocal in right.  PS took over 500 grams from each side and he is now recommending PBMX to remove remaining breast tissue.  I meet with the Oncologist on Friday.  At no point was I told that having the reduction reduced my chances of cancer later on. 

    Insurance paid for the reduction but that was after having to show it was medically necessary for back pain issues and I had to demonstrate that I had tried other methods to reduce the pain first.  I have also been fighting with insurance for over 5 years to get it paid for.  Also-insurance co determined how much tissue needed to be removed to even be considered medically necessary.

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  • Caya
    Caya Member Posts: 971
    edited March 2011

    I had a clean mammogram and breast ultrasound in July 2006, went in for a breast reduction in October 2006.  My plastic surgeon found my 1.7 cm. tumour. No family history. Quite the shock.  In January 2007 studies from the Princess Margaret Hospital in Toronto came out showing that very dense breasted women are 4 - 6x more likely to get breast cancer.

    I guess the rational may be the less breast tissue you have, the less your risk of BC.  If you are large breasted, you may enjoy having the "girls" reduced - I sure did.  Too bad I could only enjoy my new pair for a few weeks until my MRM.

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  • flowerfloosey
    flowerfloosey Member Posts: 54
    edited April 2011

    I was surprised to read this thread. I just came from Stanford Cancer ctr after two biopsies that were B9. At the followup appt, the breast surgeon and I talked about my risk. I am almost 60 with a family history..although post menopausal BC. I have other "minor" risk factors and very large dense breast tissue. I was thinking of PBMX  and had spoken about that to the breast surgeon when we first met. What she offered me was a reduction. She said that with PBMX, she could not promise me that they would be able to get all the breast tissue because it can be under arms, up to collar bone etc. She said a reduction would cut my chances of BC by 50% if they reduced my breasts by that much. I think the focus of breast cancer now is only on the young women who suffer from early BC. I think that is very valid but us 60 year olds worry too. The BS told me I could get colon cancer anytime too.Of course no promises which I already was totally aware of. I am going to go for it, and insist that I be followed closely. That really is my only choice at this point.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2011

    Yes, there is seems to be very little out there about this procedure for risk reduction purposes and many doctors dismiss it out of hand.  I am almost 54, so no youngster either, but hope to have a good 30 years ahead of me.  This procedure seemed like a good compromise, as I have been told that although my risk is high (ADH), I am not a candidate for a PBMX.  I have 3 consults coming up in NYC with PS's to discuss this, so we will see, but I am very inclined to do it.  

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  • flowerfloosey
    flowerfloosey Member Posts: 54
    edited April 2011

    My thoughts exactly. Hopeing to get this over with soon. Am waiting for Nurse coordinator to call to make the first appt. I am trying to look at as many pictures as I can so that I am well educated when that appt happens. My breast surgeon told me she would do the BPMX but would rather see me do the reduction..of course with no guarentees of cancer free in future. We decided to start here conservatively. We should keep in touch to share stories!

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  • flowerfloosey
    flowerfloosey Member Posts: 54
    edited April 2011

    Since this proceedure surgery was brought up by the chief of breast surgery at a large teaching hospital..am not sure that it would be "off label" or if the other issues with extra large breasts will be the way the insurance will pay. Interesting question.

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  • psully
    psully Member Posts: 2
    edited May 2011

    Can't believe I found this site and these discussions!  I am 44 and had a reduction 2.5 weeks ago.  BS said reduction wouldn't reduce my chances at all - have a paternal g'mother who died of BC and sister with ADH.  Have calc's and core needle biopsy last fall which showed nothing bad.  Well, I'm glad I had the reduction b/c it showed ALH in both breasts!  Not sure what my next step is.  Did meet with BS and oncologist and neither recommended Tamoxifen in my case, just careful watching.  Not so sure that is the route I want to take....

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  • beacon800
    beacon800 Member Posts: 922
    edited May 2011

    Flower, I would think long and hard before getting a BMX based on what you have so far.  You had benign biopsies - were those anything that could increase your risk?

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  • momoschki
    momoschki Member Posts: 682
    edited May 2011

    Just to update everyone here-- I had the reduction done this past Thursday. Of course, no guarantees going forward, but my PS ( who is part of an onco-plastics team at Cornell) believes the surgery will cut my risk in the neighborhood of 50%. My oncologist also endorsed the procedure. When I asked him why a reduction is not an option routinely presented to women, he answered that most doctors aren't comfortable seeing shades of grey-- this is just not how they are trained to think.



    Anyway, I am hoping for the best and that the path report comes back clean. Fingers crossed...

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