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Considering preventative mastectomy

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BarelyHoldingOn
BarelyHoldingOn Member Posts: 8
edited September 2022 in High Risk for Breast Cancer

I have been having unilateral, spontaneous, clear and occasionally bloody nipple discharge. After 9 tests (3d mammograms, sonograms, MRI, sono guided biopsy and MRI guided biopsy) my last biopsy came back with a dx of atypical sclerosing papillary lesion with epithelial proliferation with mild atypia and rare mitoses, as well as apocrine metaplasia. My mammograms are "white" because my density is so extreme. My MRI is a challenge because I have marked background enhancement. My tissue is extremely nodular and makes self exams impossible and clinical exams very difficult. Genetics testing is pending. My surgeon has given me the choice of lumpectomy (excisional biopsy which will remove the nipple and a lot of tissue in my A cup breast) and 6 month MRI and sonograms on the high risk program, or preventative mastectomy because following me with imaging and clinical exams would be so challenging. Please, I would be so grateful for your advice and thoughts. I'm 42. My children are 6 and 16 and my husband had surgery for prostate cancer last year.

I have many various cancers in my family including a paternal aunt diagnosed with breast cancer at 37 and a maternal aunt diagnosed with breast cancer at 55.

I need to make a decision in the next few weeks.

Thank you so much

Comments

  • moderators
    moderators Posts: 8,278
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    barelyholdingon, we know it's not an easy decision, as this surgery can have a significant impact on your life. Until you get responses from other community members, here is an article from our main site where you'll learn more on preventative mastectomy:

    Is prophylactic mastectomy right for you?

    We hope this helps!

    The Mods

  • maggie15
    maggie15 Member Posts: 1,059
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    barelyholdingon - You have many things to consider: cosmetic outcome, genetic chance of cancer, and the difficulty of imaging in the future which causes anxiety for some people. It sounds like the excisional biopsy may not give you an outcome you would be happy with. I had a lumpectomy and went from a C cup to a B cup; even though my right breast looks good it is noticeably smaller. I could have had surgery to reduce the other breast, but I pad my bra when necessary in certain clothing. Ask about consulting with a plastic surgeon to find out what your reconstruction options would be after a mastectomy since that would also influence your decision. Some women prefer to forgo reconstruction and wear a prosthesis if/when they want to.

    I do not have the imaging problems that you do, but many women in that situation feel less anxious after a mastectomy since they are not constantly worrying about cancer that was not seen. The results of the genetic testing, your younger age and family history might lead you to go in that direction, too.

    I'm sorry that you have to make these decisions, but there are plenty of people here that can sympathize and give you support. Wishing you the best going forward!

  • lillyishere
    lillyishere Member Posts: 775
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    If you were my sister and with what I went through, I would say do it. I myself had an extremely dense breast that luckily, a very experienced doctor who saw my mammogram got suspicious and recommended the biopsy. That's how my breast cancer was discovered. MRI did not show cancer in the other breast or lymph nodes, surgery did. I was in a group with less than 2% chance of having breast cancer and here I am. I have no regret for removing the breast or what I call the breast cancer factory. No one I know who had a mastectomy has regrets. I had friends who had lumpectomies and later on in a year or two went back for mastectomy because they were having difficult times from scanning and also adjusting one breast to match the other.

  • miriandra
    miriandra Member Posts: 2,115
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    I had a unilateral mastectomy, and am very happy with my decision. I declined reconstruction, and my surgeon did a great job with my aesthetic flat closure (AFC).

    While reconstruction is always an option, if you decide to go flat, there is a very supportive and growing community of openly and discreetly flat women. Facebook has multiple groups (Stand Tall AFC and Flat Out Love are national communities), and many cities have local groups as well. They help survivors feel accepted in their new bodies, and share advice for advocating for AFC with your doctors if that is your plan.

    In the end, whichever care strategy you choose for yourself is great. Statistically, breast cancer care has come so incredibly far. You have really good chances for a long, happy life with your husband and children. All the best for peace of mind and body.

  • BarelyHoldingOn
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    Thank you all. I truly don't know what to do. If it was a confirmed diagnosis, I'd have no doubts but it's a "high risk" lesion that may contain cancer coupled with very difficult imaging and some family history. My heart is broken over trying to decide.

    If I chose the lumpectomy and the pathology showed cancer, then I'd want to go back for a mastectomy. If it didn't, I'd continue to be anxious about every test and maybe have additional biopsies in my future. I'm concerned about making an overly aggressive choice and being judged. ... This is so hard.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,032
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    “I'm concerned about making an overly aggressive choice and being judged. ...“

    Being judged? My dear, this is your health and your decision. If you are comfortable with your decision, whatever it may be, shame on anyone who judges you.

  • maggie15
    maggie15 Member Posts: 1,059
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    Everyone's situation is different, but on doctor's advice I took the less aggressive route which turned out to be the wrong one. Two and a half years before my IDC diagnosis a mammogram showed architectural distortion and core needle biopsy found radial scars.They are considered benign with an increased risk of cancer developing so I went with the recommended surveillance.After three clear mammograms the fourth led to the removal of a 3 cm tumor in the same location as the architectural distortion. Mammograms miss 20% of cancers so it is quite possible to get multiple false negatives as I obviously did. My breasts are grade B, not as dense as yours are, and the cancer grew undetected for a couple of years in spite of “watchful waiting." I don't blame anyone as there is controversy about how to deal with radial scars, but in your case I wouldn't worry about being too aggressive.

  • sarahnh
    sarahnh Member Posts: 105
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    Are you deciding between lumpectomy and mastectomy? Or was "watchful waiting" also given as a choice?

    I will echo that everyone's situation and values are different.

    That said, I'm somebody with dense breasts and lots of weird lumps, who chose *not* to have biopsies and excisions, and did end up with breast cancer. But I have no regrets -- I had 30 years of feeling good and living a fun healthy useful life from age 22 to 52 despite the "busy breasts" -- and would do it all again.

    RE Lumpectomy: My breast was also A-cup size. My lumpectomy removed 4.5 cm, and this was after chemo had "shrunk" the tumor down to nothing. There is significant deformation of the breast shape. I thought it would really bother me, but it doesn't, and in clothes I look the same as before.

    One thing you might ask about is "oncoplastic" lumpectomy, where there is some attempt to move tissue around during the lumpectomy, to minimize the defect.

    RE Mastectomy: How do you feel about implants? I know of people with DCIS who chose mastectomy and reconstruction with implants, and were happy with the outcome. A long-term downside is numbness over the area of the mastectomy, a long-term upside is having the breasts they always wanted. Though, they may have been able to keep the nipple area.

    Please do not worry about being judged! Though I know that's easier said than done. I am scheduled for a mastectomy now, planning "aesthetic flat closure" based on my own personal values for aesthetic/health/functionality in the context of my cancer. I have some worries about being judged for that (actually I'm more concerned about my husband being judged or pitied by his family or colleagues). But I think a lot of these kind of worries may be worse during the decision-making process, and get much better after decisions and treatments are done with.

    Best of luck to you, whatever your decision!



  • denny10
    denny10 Member Posts: 421
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    I had a single mastectomy without reconstruction. In hindsight I would have had a double. At the time it was not offered and I knew a lot less about metastatic breast cancer. Whatever you decide it is not for others to judge, you must be comfortable with what you decide to do. Good luck with this difficult decision.

  • BarelyHoldingOn
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    Thank you. I will ask about oncoplasty. I know just what you mean about people "pitying" your husband. That is certainly on my mind as well. And my husband is a good, good man. I don't think he ever would, but I don't want him looking elsewhere either.

    I haven't been offered watchful waiting, I think because it's atypical and this high risk. I just read a pubmed article that states that these lesions carry a high risk of future cancer even after excision.

    I literally feel sick trying to decide. My immediate family (husband, father, daughter) all are encouraging me to get the preventative mastectomy. There's a great deal of cancer in our family.

    I wish the doctor would just tell me.

  • meow13
    meow13 Member Posts: 1,363
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    I have a friend who had breast cancer did lumpectomy, radiation, chemo and herceptin decided later to do a double mastectomy with delayed DIEP reconstruction looks great.

  • maryscout
    maryscout Member Posts: 10
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    Hi Barelyholdingon,

    I was in a very similar situation in 2019 with atypical ductal hyperplasia, dense breasts, lobular hyperplasia found. I opted for a double mastectomy with diep flap reconstruction. I think my results are fantastic. I had great doctors at the Breast Center in New Orleans and am so grateful for them. I know it's a super tough decision, and this path isn't for everyone. For me, though, it was a great decision. Happy to talk if you ever want.

    Best wishes to you as you navigate through this turbulent time.

    Yours,

    Mary

  • cyathea
    cyathea Member Posts: 337
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    barelyholdingon, this is an awful decision. When I was first diagnosed (before they found the bone mets), I did a ton of research and still didn’t know what to do, so I know what you are going through. It’s your body, so it’s your decision, and no one here is going to think any less of you no matter what you decide.

    I was high risk and I chose not to get a preventative BMX. I thought since my doctors were watching me carefully that they would find it early like they did for my Mom, my aunts and my sister. I have dense breasts so I was getting both digital mammograms and ultrasound…..and they still missed a 5 cm lobular tumor in my right breast and a smaller tumor in my left breast. That is the risk that everyone has to weigh for themselves.

    Do I regret not having done the preventative BMX? Not really, I had a lot of fun with those breasts. 😉 I loved having breasts even though I was a small B cup. Surgery came with some unwelcome complications: frozen shoulder and lymphedema. I knew these were possible so I wasn’t surprised, but it took 2 years for me to get back to where I was before this mess started. I opted for an aesthetic flat closure and I’m comfortable using prosthetics when I go out but I don’t usually bother with that at home. I had a lot of nerve damage with the surgery and nerves recover VERY slowly. It took a year of physical therapy and lymphedema massage to reduce my pain. My chest is still numb but I can feel pressure when touched. I sleep on my stomach so I’m happy that my issues have largely resolved and I feel almost normal now (like the pre-teen me). My DH doesn’t seem to mind and my scars are very light now. I had a plastic surgeon do nipple grafts with my BMX, but I lost some cells in a few spots so I’m considering getting them tattooed to make them look a bit better.

    You might not have these complications, so I don’t want to scare you into not doing the surgery. I’m really doing well now. You should just be prepared with all the possibilities and determine ahead of time that whatever decision you make, you’re not going to second guess your decision later. If you go with a lumpectomy like my sister, you can avoid some issues. My sister is 10+ years since her diagnosis and is doing great. I am happy for her. My mom had a single mastectomy and had 30 years with a single breast and prosthesis before she got BC in her other breast. She had the second surgery and has been over 5 years without any progression. She is also doing well. Even though I’m oligometastatic, I am optimistic. Life can still be good even with health issues like BC.

    I hope that you have a great medical team to take care of you and friends and family to support you. Please know that everyone here is wishing you the very best. ((Hugs)

  • gh11
    gh11 Member Posts: 27
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    Hi Mary, thank you for sharing that information. I am considering a DIEP flap on both sides and my surgery is next week. I had a single mastectomy on the right side and have tissue expanders in - they tried to do a nipple sparing mastectomy but only half of it took. It feels like a barbie doll - and I wonder if the lack of sensation in nipples bother people over the long term? Did it make a huge difference to your peace of mind? Part of me wants to keep the other breast - at least it's a natural breast with feeling...but the other part of me wants to just be done with it and have one surgery and then no more worrying...have you found the lack of sensation, or the lack of nipples, to be major regret for you?


  • brinkofeternity
    brinkofeternity Member Posts: 181
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    Having had UMX, sometimes I feel my reconstructed DIEP breast is so numb and strange, but then I feel my normal breast and it doesn’t feel “that” different. For me, I think sensation can be a bit overrated, so in a sense I’m glad I kept the other breast so I can always compare and realize it’s not much different.

  • K-Gobby
    K-Gobby Member Posts: 144
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    To all,

    Thank you all for your honesty. Never in my wildest dreams did I think I would talk about breasts and mastectomy. Really? An A cup all my life, a bit more with the extra fat I carried. Breast cancer? It did not run in my family. Skin cancer, melanoma, squamous and Basel. Well, until I found the lump in my breast in 2021 June. Breast cancer arrived. A 5.2cm lump. Surgeon said remove it, not much breast left. What to do? She said 2 choices, lumpectomy or mastectomy. Here is where I understand you barelyholdingon....this is a tough place. What if I make the wrong choice? I have heard many women say once your breast is removed, it is gone.

    Well, City of Hope offers genetic testing. For me, they found I carry the Brca2 gene. Game changer for me. That right there was my decision to do a left mastectomy. I had problems with chemo and my tumor shrunk half. In Feb of 2022, 8 months after diagnosis, I had a mastectomy and had my ovaries and fallopian tubes removed same day. Two doctors. The third Dr did a skin, no nipple, saving mastectomy.

    I took pictures of my breast myself. Essentially said goodbye. I had an expander put in. Once my radiation was done, the right breast would be removed. I ended up with a blood clot, no surgery for 6 months, so I have the expander still, as well as my real right breast. The radiation oncologist said radiation would not increase my chances for reoccurance.

    Do I miss my breast? Honestly, it nearly looks the same. My skin. The scar has nearly healed to barely be able to see.

    What to do? I was diagnosed at 60+. Already past menopause. Now 62. Stage 2. No metastasized areas.

    Choices....I have told few I had a left mastectomy. No one's business and no one needs to know. I do not have a husband, but I certainly say let him say goodbye to one or both. Barely hanging on....we in this place understand. I told my breast thank you for nearly 61 years. I did not realize that skin saving means no inside my breast, numb and no sensation. But, for me, my tumor removed also changed my her status from HER2- to HER2 +. Not good. Brca2 and Her2 +. I talked with my medical oncologist, my nurse practioner and asked what studies show. My younger sister, her daughter and my older brother all carry the Brca2 gene mutation. They have new choices. My older sister does not want the genetic test.

    As you see, our paths are not the same. Only that it is our body. Our choice. Our choice always. Please be good to yourself. Many women have shared my choices. Your choice. Get more facts.

    I send the love and gratitude I have been given in this last 14 months. I never did anything alone. My younger sister, close friends and bc.org. real women here who now.

    Love, kathyg


  • BarelyHoldingOn
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    Wow. Thank you. All of you. So much. I'm down to my last week to decide. My genetic testing came back and it was negative. However, it doesn't remove the issue of being high risk from family history, from density and background enhancement and from the atypical lesion. Adding in the difficult imaging and clinical exams.... Best case scenario, my lifetime risk is 33%. My teenage daughter and my husband are adamant that I get the preventative mastectomy. They say one in three is too high when I have the option. The lumpectomy will leave me disfigured enough that I won't want my husband looking anyway....

    But it still feels like such a drastic decision and I just don't know what to do.

  • brinkofeternity
    brinkofeternity Member Posts: 181
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    barelyholdingon - It is a very tough decision. Before they found the 2nd tumor in my right breast, my breast surgeon encouraged me to get a lumpectomy as it is less drastic and as she said, if they find anything they can always do another surgery later. I suppose you need to decide whether it is OK for you to face the possibility of a 2nd surgery if you go ahead with lumpectomy.

    As for disfigurement I honestly thought my right breast looked horrible with all the swelling and expander inside, but my DH had no issues, so I suppose it’s a really personal decision.

    Lastly I understand where your family is coming from as I was the daughter trying to encourage my own mother to go ahead with treatment for ovarian cancer. Now that I have been on the other side, I can see that ultimately she was the one ”paying the cost” of going through with painful treatment options, not me, so it had to be her decision.

  • maryscout
    maryscout Member Posts: 10
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    Hi all,

    gh11 asked about missing sensation after my diep reconstruction. To be honest with you, I do miss the sensation, but not overwhelmingly. I did nipple sparing, so I can't really speak to that. At first it felt odd, but more sensation has come back than immediately after surgery. The peace of mind is well worth it -- a "no doubter" for me.

    Wishing everyone all the best with whatever decision they make that is right for them.

    Yours,

    Mary

  • K-Gobby
    K-Gobby Member Posts: 144
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    On my surgery date, I went in with knowing I would have nipple sparing. Outside my pre op room I heard my 2 doctors talking about this subject. They both came into my room. The surgeon I heard tell the plastics doctor I was wanting nipple sparing. He ended up saying because I am small, that I would not end up symmetrical. The breast with the nipple would have an anchor spot. It presented and I chose to remove.

    I would have this talk once more before surgery. So do it if you can. I carry the Brca2 mutation, so the less left the better.

  • BarelyHoldingOn
    BarelyHoldingOn Member Posts: 8
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    Thank you so much for this. Your story is very helpful to me. I ended up proceeding with the preventative mastectomy. While the surgery and recovery went incredibly well, it hasn't been without some emotional challenges and doubts. I have days when I'm not sure I did the right thing - days where I just miss my boobs. But, I was constantly being given different information and I felt like they were never going to really know what was going on inside of me. (Also, I did not mention before that the fibrocystic breasts made my right breast very painful if it was bumped.)
    My first 3d mammogram, they said all clear, everything was perfect. I pushed for more info and got the first sono and was given all clear, everything fine. Then I got a second look sono and hmmm... there is something there but it looks ok but we should biopsy.... Then MRI: this doesn't look like just a papilloma. This is more concerning.... First biopsy: Oh it was nothing and we can't really do the second so just don't worry. I pushed hard and got the second biopsy. Second biopsy: This is a "cancer wanna-be" and we need to get it out and see if it's hiding more cancer. It's an atypical papilloma and we're just not sure if it has ADH. You'll lose a lot of tissue and your nipple.
    Just before my surgery my surgeon waffled and said maybe I could keep my nipple and maybe I wouldn't lose as much tissue. I didn't like taking chances. I chose bilateral preventative mastectomy. The final results were sclerosing papilloma and "we think" all the atypia was removed on biopsy but there is also a fibroademona and "innumerable" cysts, nodules, and lumps in both breasts. I felt like any one of those could have been cancer and no one would have known.
    I believe I did the right thing. The really hard thing, but the right thing.
    Thank you so much for encouraging me.
    Blessings