Considering Prophylactic Mastectomy

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lady6244
lady6244 Member Posts: 9
edited January 2015 in Benign Breast Conditions

I am 57 and recently underwent many tests and biopsies.  My surgeon is recommending prophylactic mastectomies to reduce my risk of cancer.  I am considered high risk due to: 1st degree breast cancer (sister), ADH, intraductal papilloma and microcalcification in the left breast, dense breasts, 12 yrs of HRT.  (Had a complete hysterectomy in 1998 due to cervical dysplasia.)  A recent surgery showed 2 tissue sections with ADH.  I realize this is a personal decision but am still searching for my answer.  Lots of research shows I'm very high risk, but still want support for this decision.  Both my husband and sister are encouraging me to do it.  My sister has many after effects from chemo for her invasive breast cancer and she wishes to spare me of ever having to endure this type of treatment.  Any thoughts or comments please?

Comments

  • DiveCat
    DiveCat Member Posts: 968
    edited June 2014

    Hi lady6244;

    Well, I think my thoughts or comments are this is a very personal decision. Different people would choose differently in your shoes, you know? Everyone has their own personal comfort level with risk, and beliefs about preventative surgeries and so on. Whether they face those decisions or not.

    In a case where someone is at high risk, I personally support whatever decision is right for them.

    I had a prophylactic BMX on April 24 due to strong family history of aggressive breast cancer/pre-menopausal breast cancer. While I did have dense breasts, I am pre-menopausal so that is pretty normal. I did not have any other atypical concerns (just fibrocystic breasts which is also very normal in pre-menopausal women).  My pathology came back without any malignancies or atypical conditions - just usual hormonal changes like intraductal hyperplasia, fibroadenosis, fibroadenoma and other benign changes.With my particular family history/context, if I had known of aytpical conditions I probably would have been inclined to have done the surgery sooner than I did, but I can't speak as to what I would have done if I did not have that family history. 

    ADH does indeed increase your risk (it is not a "benign" condition like my hyperplasia was), but it does not make cancer a guarantee either. Mastectomies are also not a guarantee AGAINST breast cancer, as not all tissue can be removed, or there can even be an occult cancer. I don't know what the risk reduction in the case of ADH is actually, but I do know that amongst those with high risk due to genetics or strong family history the risk reduction is 90-95% of their risk.

    I am very happy I did my surgery, and I too was motivated in part by seeing what cancer - both the cancer and the treatments - has done to my family members and the terrible survival odds my family has, but that does not mean it is right for everyone, and I do know of women who have had a much harder time with their prophylactic surgeries, due to complications, body image, ongoing pain and discomfort, and so on. While not a technically "invasive" surgery since it does not cut into the body cavity, it is still a "major" surgery for many physically, emotionally, and so on. I am pretty risk averse, and for me knowing my family history and my concerns about my future health, it was a bit of a "no brainer" to improve my quality of life in terms of my anxiety and concern, and avoid 3-4 decades more of high risk screening ahead of me. I was fortunate to have a very good recovery, and I have no regrets but this is not the case for all women by any means. 

    If you are unsure about surgery at this point, you do not have to rush the decision as it IS prophylactic. It took me a few years to be ready for it myself, though I know we are different ages (I am 35 next month) and in different circumstances. Have you talked to your doctors about options such as taking an AI for risk reduction? Are you getting high risk screening such as annual MRI?

    It is great, that if you do go ahead with surgery, you have a supportive husband and sister. My husband's support - and agreement with my decision beyond just supporting whatever I wanted to do - was very important to me and good to have through the process. Most of my family, friends, peers, and coworkers were very supportive too. A couple family members did not necessarily "agree" with the surgery and would not choose it for themself, but they still supported ME and my right to choose what was right for me, and were still there for me :)

  • DiveCat
    DiveCat Member Posts: 968
    edited June 2014

    P.S. I am not sure if you would choose reconstruction or not, but there is TONS of information and support around here for both going flat AND recon. If you do think recon might be right for you, also pick up a copy of The Breast Reconstruction Guidebook (the latest edition). Good for you as you explore options, and good for your husband to read so he knows what to expect as well!

  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited June 2014

    Nobody can tell you the right answer - that has to come from you.  It really depends on your tolerance for continuation of your screening protocols, and most likely, given your history, additional biopsies down the road. 

    My situation was a little different.  My sister was dx at age 28 and my mother (age 68) does not have BC.  My sister tested BRCA negative and P53 negative.  Beyond that, I have no knowledge of my family history.  I had personal risk factors - extremely dense breasts, ALH, multiple fast growing masses and a pile of benign conditions which made screening very difficult and caused a great deal of pain.  I have no regrets about my decision.  I know that for me it was the right choice.

    But there's a lot to consider, and you have the time to do that.  Do your research, ask a lot of questions, and eventually you'll figure out what makes sense for you. 

    Best wishes.

  • lady6244
    lady6244 Member Posts: 9
    edited June 2014

    Thanks so much for the feedback!  I saw a new primary doctor today and she also agrees with the breast surgeon so I plan to have the prophylactic mastectomy with reconstruction.  It's very frightening as I was there to take care of my sister after her bi mastectomy (due to invasive cancer).  Her recovery was pretty rough, but I am grateful that I will not require chemo.  You ladies are a real inspiration.  Thanks for sharing your stories.  Now to decide which recon.  I will check out the book recommended.

  • DiveCat
    DiveCat Member Posts: 968
    edited June 2014

    lady6244,

    You are welcome...please check out the Breast Reconstruction forum if you are leaning that way too! 

  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited June 2014

    I know what you mean - my sister had her BMX a few years ago and had a really hard time.  So that's what I had in my mind going into my surgery.  My recovery was nothing like hers.  I bounced back pretty quick and had zero complications.  Surgery and recovery sucks, but cancer sucks more.  Good luck :)

  • meghar
    meghar Member Posts: 38
    edited June 2014

    Wishing you the best and having peace of mind is a wonderful goal.

  • twoam
    twoam Member Posts: 158
    edited July 2014

    Not sure if this will help in your decision, but here goes. My sister was diagnosed with BC 6 years ago at age 40. She underwent Lumpectomy/Chemo/Radiation. It was horrible, wrought with complications, and I was terrified she would give up. One day during all this, I told hubby, that if I was ever diagnosed, I would definatley just do BMX, and be done with it. Fast forward 6 years, and I have literally eaten my words. I was diagnosed in April, and had my BMX in June. Final path report was all clear, and I am now cancer free (no chemo/radiation). Its been a strange short journey in some aspects. To have something change your life so drastically, and then be gone. Its like I didnt even get a chance to cuss it out. Anyway. This is the part that may be helpful to you. My sister says, if she had known there would be a family history (she was the only one at the time) she would have definately gone BMX. Now that there is that family history, she worries every single day. I did test BRCA-. Several Drs have suggested that we may have a gene that is not yet been identified. Praying for you, and I wish you tons of peace and love on your journey <3

  • CFK
    CFK Member Posts: 24
    edited July 2014


    I had a PBMX skin and nipple sparing with immediate reconstruction with implants and alloderm Dec. 2013.  I had very dense breasts and was constantly going through tests and biopsies.  My mother, an aunt, a sister and a first cousin had BC.  I saw what chemo did to them, and I didn't want to have to go through that.  My BS recommended a PBMX because of my high risk, and I have had no regrets going that route.  I no longer have that monthly anxiety when I would have to do a self breast exam.  The reconstruction part of the MX takes some getting used to,  but I would rather deal with a little discomfort than have to go through what some women in my family have had to endure.  I am grateful too because the pathology report came showing I had ALH in both my breasts which increased my risk even more.  Good luck with whatever decision you make.

  • Delilahbear
    Delilahbear Member Posts: 466
    edited July 2014

    I made the decision based on repeated testing, biopsies, nipple discharge and my family history and pathology reports. I don't look back. 

    As CFK says, the reconstruction takes getting used to but the peace of mind is worth everything. 

    It is you decision to make and I can tell you there are those who don't agree with whatever decision you make, but it is your decision and yours to live with. Don't let others opinions sway your own. They aren't walking in your shoes. With whatever decision you make I hope everything goes well for you.

  • lady6244
    lady6244 Member Posts: 9
    edited July 2014

    I'm going with the plastic surgeon's recommendation for expanders and implants.  He assured me my surgeries and recovery will be very different than my sister's due to her being a smoker and beginning chemo shortly after surgery (and complications with the chemo).  Feeling a little better, just wish they could have scheduled the surgery yesterday!  lol  I'm scheduled for July 23...and so far only one major "meltdown" (my poor husband!).  My husband is very supportive (as best a man can be without totally understanding).  My sister who has been through this (and worse) is coming to help me for 2 weeks.  Awesome!

  • lady6244
    lady6244 Member Posts: 9
    edited July 2014

    Absolutely!  I am grateful not to actually have cancer yet! Thanks for your comments!

  • lady6244
    lady6244 Member Posts: 9
    edited July 2014

    Thanks everyone for your helpful comments and support!  I agree it will be a relief not to be constantly worried about the ADH returning or worse cancer developing before it's noticed. The ADH did not show up on the mamo but did on the MRI.  I'm just grateful it was caught early and I have the opportunity to prevent cancer (or a high percentage). 

    My thoughts are with each of you for a long and joyous life!

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2014

    That is very interesting that the ADH showed up on the MRI.  Best wishes for an uneventful surgery and quick healing.

  • CFK
    CFK Member Posts: 24
    edited July 2014


    Lady6244 hope your surgery went well and I hope you have a speedy recovery.

  • twoam
    twoam Member Posts: 158
    edited August 2014

    Have been hoping every day that she will let us know how she is doing.

  • Lilith08
    Lilith08 Member Posts: 163
    edited August 2014

    I've been following this thread for a few weeks as I was contemplating my own PBMX. As of last week, I have made the decision to go ahead with it.
    While my mother did have DCIS and MX at age 55, I have no other family history. My own history is what really contributed to my risk factor--multiple lumpectomies starting at age 26, all benign (fibroadenoma twice, papilloma twice, and now ALH). It's the ALH that really changed the game. 

    I consulted with an oncologist about starting tamoxifen or raloxifene therapy. I wasn't crazy about the idea of that, and asked her opinion about surgery. She was very supportive of the idea, and I actually got the impression it might be the safer choice--and not beyond the scope of reason. I mulled it over and returned to my surgeon. I asked her to give me her honest opinion, and she agreed that, in my shoes, she would opt for PBMX herself. I really trust her opinion and her skills, and when I actually felt a sense of relief, I knew that for me it must be the right decision. Yes, I'm a bit nervous about the actually surgery, but so very relieved that I will not have to play the waiting game every six months. And not having to take meds makes it all the better.

    I have learned, too, that this is a very personal decision. I'm actually leaning towards "going flat" and that has raised more eyebrows than the PBMX itself. I will consult with a plastic surgeon on Sept. 10, and in the meantime am reading all I can, and frequently visualizing myself with reconstruction and without. Some days, one feels more right than the other, but I'm being careful to not let other people's opinions (mostly unspoken, but I can read body language) sway me too much.

  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited August 2014

    Good luck Lilith08.  I know when I made my decision to go forward with the PBMX, I immediately felt at peace with it.  The reconstruction took a little longer - at the time it seemed like the least of my worries, and to be honest, I'd seen it go very wrong with my sister, so I was more afraid of that than I was the PBMX.   My BS kind of steered me towards it, and referred me to an amazing PS.  Once I talked to him, I felt a lot better about it, and I'm glad I did what I did.  I see now that it would have been a mistake for me not to reconstruct.

    You'll undoubtedly find those that are on both sides of the issue.  But as with the prophylactic surgery decision, you'll make the choice that's right for you.  I wish you all the best. :)

  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited January 2015

    I had DCIS in left breast in 2011. This Spring/Summer i had a scare which turned out to be a papilloma in my left breast found via a mri biopsy.I was told it was small and mostly removed via the biopsy. I now am in perimenopause for about 18 months. I am still considering a BMX due to my anxiety that increases the 3 months or so before my yrly exams. My cancer was ER positive. I found out I cant take hormones to alleviate any of my menopausal symptoms. Im wondering if I were to have the MX would I then be able to take hormones since the ER positive aspect wouldnt be a concern anymore? What are the % chances of having a recurrence or a new cancer AFTER a MX ?

  • Lilith08
    Lilith08 Member Posts: 163
    edited October 2014

    bluewillow, I think that would be a good question for your oncologist. I know that the chance of BC after MX is drastically reduced, but it may also vary depending on your own situation. But then adding hormones to the mix might also change your numbers.

  • bluewillowskys
    bluewillowskys Member Posts: 365
    edited January 2015

    thanks lilith... found out that i cant take hormones regardless of my treatment do to the ER positive. Im coming up Feb.10 on my next mammogram, so my anxiety is starting to rev up. Im still considering the recon with lift/implants or BMX....but still concerned about lack of sensation...has anyone had a lift and do you still have nipple sensation after one ? Im also wondering about getting the implants with having a tiny pappiloma that has no external symptoms?

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