Topic: Considering preventative mastectomy

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 11, 2022 10:04PM - edited Sep 12, 2022 02:25PM by barelyholdingon

Posted on: Sep 11, 2022 10:04PM - edited Sep 12, 2022 02:25PM by barelyholdingon

barelyholdingon wrote:

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

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Sep 14, 2022 06:49PM - edited Sep 14, 2022 06:50PM by meow13

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.

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Sep 17, 2022 11:21AM maryscout wrote:

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.



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Sep 17, 2022 09:43PM cyathea wrote:

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)

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2- Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal; Lymph node removal (Left): Sentinel, Underarm/Axillary; Lymph node removal (Right): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes Local Metastases 6/1/2020 Radiation therapy: Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Sep 18, 2022 11:48AM gh11 wrote:

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?

Surgery 6/1/2022 Mastectomy (Right): Nipple Sparing
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Sep 18, 2022 09:51PM brinkofeternity wrote:

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.

Weakly ER+ so practically TNBC, neoadjuvant chemo (Abraxane) with immunotherapy (Keytruda), then surgery, then more chemo (AC) Dx 7/26/2018, DCIS/IDC, Right, 3cm, Stage IIB, Grade 3, 0/5 nodes, ER+/PR-, HER2- Chemotherapy 9/4/2018 Abraxane (albumin-bound or nab-paclitaxel) Surgery 12/28/2018 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Chemotherapy 2/4/2019 AC Surgery 4/26/2019 Reconstruction (Right): DIEP flap
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Sep 19, 2022 11:01PM k-gobby wrote:

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 real women here who now.

Love, kathyg

Chemotherapy 8/14/2021 Other Surgery 2/1/2022 Lymph node removal (Left): Sentinel; Mastectomy (Left): Skin Sparing; Reconstruction (Left): Tissue Expander Targeted Therapy 2/1/2022 Talzenna (talazoparib) Targeted Therapy 2/1/2022 Perjeta (pertuzumab)
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Sep 20, 2022 05:32PM barelyholdingon wrote:

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.

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Sep 22, 2022 12:52PM brinkofeternity wrote:

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.

Weakly ER+ so practically TNBC, neoadjuvant chemo (Abraxane) with immunotherapy (Keytruda), then surgery, then more chemo (AC) Dx 7/26/2018, DCIS/IDC, Right, 3cm, Stage IIB, Grade 3, 0/5 nodes, ER+/PR-, HER2- Chemotherapy 9/4/2018 Abraxane (albumin-bound or nab-paclitaxel) Surgery 12/28/2018 Lymph node removal; Mastectomy; Mastectomy (Right); Reconstruction (Right): Tissue Expander Chemotherapy 2/4/2019 AC Surgery 4/26/2019 Reconstruction (Right): DIEP flap
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Sep 24, 2022 11:31AM maryscout wrote:

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.



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