Considering preventative mastectomy

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!

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.

“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.

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!

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

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?

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