Topic: Considering prophylactic mastectomy vs 4th lumpectomy

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

Posted on: Jan 7, 2022 11:24AM

Posted on: Jan 7, 2022 11:24AM

azwordmom wrote:

Feeling frustrated. I’m 45 years old. I have been on Tamoxifen for the past 2 years following a biopsy with ADH and several other biopsies and lumpectomies including multiple intraductal papillomas, fibroadenomas, cysts, calcifications etc. My right breast is constantly producing junk. Genetic testing has come back negative.

In December I again had worrisome findings on my breast MRI and another biopsy. Thankfully it came back benign but with even more junk, some of it pre cancerous again requiring ANOTHER lumpectomy. This will be my 4th surgery on that side. I was an A cup at best to begin with so there isn’t even that much left to work with.

I’m getting sick of this roller coaster every few years, even while taking tamoxifen, which I HATE the side effects of. Wondering if it’s time to consider a prophylactic mastectomy. Both sides? One side? Or just do ANOTHER lumpectomy and deal with the disfigurement on that side along with constant worry + monitoring + tamoxifen? Reconstruct one side?

I keep hearing “this is a personal choice” etc. I don’t know how to choose this. While I’m so grateful that cancer hasn’t forced my hand I still kind of hate all my options. I guess I’m just wondering if there are any others who have come to a crossroads like this and how you came to your decision

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Jan 7, 2022 05:25PM - edited Jan 7, 2022 05:26PM by Eowin

Hi azwordmom

Feel your frustration.. I m the same age as you 45 but my story is a bit different. had lumpectomy and rads last year for small papillairy carcinoma on the right side with a large area of lcis.

I m also on Tamoxifen with all its side effects.

My mum and 2 sisters were also treated with breastcancer but still my genetic testing came back negative.

My mum has had several lumpectomies. I am not sure but I think 5 times on her left side , now first time right.

I have MRI every 6 months and took advice in several hospitals with second to third opinions with several doctors. They all advise bilateral mastectomy + diep . Never they advise unilateral.

Still I find it every difficult to decide. Also because mastectomy doesn t guarantee to remain cancerfree. I have been worrying sick everyday over the past year.

Did doctors advise you to do a mastectomy ?

I wish you all the best and hope someone can give more advise here.

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Jan 10, 2022 05:52PM - edited Jan 10, 2022 06:02PM by stherye

Hi azwordmom,

I am sorry you are going through this. I am also 45 yo, and I have twins of 9 yo. Three years ago I had my first mamo and us. Two doctors came to see the image of the us, they could see something irregular and worrisome so they ordered a biopsy. I had the worst two weeks of my life waiting for the results. Finally it came up as an intraductal papilloma with FEA. I was still quite worried, not because of the papilloma but the FEA (flat epitelial Atypia). Four months later I went to see my gynecologist again because I had pain and a pump under my armpit. My armpit was ok but they discovered another irregular cyst in my rightbreast again, near where I had the papilloma. I had an mri because they were a litttle bit worried. This time, like the previous one I was extremely nervous, I couldn't eat, I couldn't sleep. Again, this second time it was another papilloma but this time I opted for a PBMX. I know it was something really extreme but it was the right option for me. The results are amazing and I don't think of breast cancer anymore. This is not a path for everyone but it was for me. I am not saying I recommend it, I am only telling my experience and my story. I have lost some feeling but not all, fortunately but I am really pleased with the results, my breast is even prettier now. It looks like more as an augmentation than a pbmx. I wish you all the best, and think you have at least diffoptions. Sorry for my English because it is not my mother tongue.

Intraductal Papilloma with FEA - 2018 Surgery 10/18/2018 Prophylactic mastectomy; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right)
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Jan 10, 2022 11:54PM minustwo wrote:

It really is a difficult personal choice. However I elected to get rid of them as soon as I was diagnosed since I'd been called back every single year with dense breasts & etc. No more worries every 6 months. I'm happy with my decision.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 21, 2022 02:23PM - edited Jan 21, 2022 02:32PM by imashoshana96

For background, I'm a 5th gen breast cancer and I'm 27 years clean. Before my bilateral mastectomies, I too, was constantly being biopsied. I was an A cup but ended up a D cup, what with all of the cysts and benign (but getting worse) tumours. I fought with my insurance company for several years to have a bilateral mastectomy, even producing documentation from the 4 other generations. They told me they’d pay for my chemo. They finally approved it but by then I had the beginning stages of intraductal cancer on both sides and yes, they paid every penny of my surgeries and treatments.
If it were just one breast, I’d fight to have it removed. The mental trauma of waiting for “it” to happen disappeared once the breasts were removed.
Good luck

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Jan 28, 2022 11:40AM maryscout wrote:

I was in the same boat. I don't have family history, but that is really a big question mark because my mother and her mother passed away at very young ages -- about 40 years old (but not from breast cancer). I decided to do a bilateral mastectomy with diep flap reconstruction and could not be more pleased with the results. Feel free to reach out if you ever want to talk. Sending strong, healing vibes your way.

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