Topic: Preventative Mastectomy

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

Posted on: Feb 24, 2021 03:19PM

Posted on: Feb 24, 2021 03:19PM

amermaidonland wrote:

I was hoping to connect with some other women who have made the decision to have a preventative mastectomy. It's a decision I am in the midst of making, my family did not test positive for any gene mutation but I'm being informed that my risk is just the same. I would love to hear from other women what they went through and thought about. Or if anyone can recommend any forums, groups, chats, zooms that would be helpful! Thank you!

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Feb 24, 2021 04:10PM moderators wrote:

Hi amermaidonland,

That is a very difficult decision. There are a great number of people on the boards discussing this. You may want to try typing "prophylactic mastectomy" or just "prophylactic" into our Search on the left to best find all the different conversations. We have this section on Prophylactic mastectomy as well. You may also want to look at the website FORCE for their information.

Wishing you the very best, and keep us posted!

The Mods

To send a PM to the Mods: community.breastcancer.org/my/... Surgery 5/10/2022
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Feb 24, 2021 10:05PM sasamat wrote:

Can you say a bit more about how your high risk situation comes about?

Context for my question: it feels like when you get a risk number that's x% (meets some definition of "very high"), the medical system interprets it one way if you have BRCA 1 or 2 (recommends prophylactic surgery, screening with MRI, etc.) and potentially another way if it comes from combining several different risk factors (sometimes they say the risk is overestimated, less pro-active posture re: intervention or monitoring).

ADH, surgical excision 2020-12-15
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Feb 25, 2021 12:46PM amermaidonland wrote:

Hi! Yes, I'd be happy to expand on that. I've been informed by my oncologist that my risk is 53% within my lifetime. This is based on some extensive family history as well as my own medical history. I had my first lumpectomy at 35 and then another a year later. All benign but I'm being advised that this isn't normal and that my risk is similar to a person who has tested positive for a gene mutation. The options presented to me are 1) monitoring, healthy lifestyle, and tamoxifen; or 2) prophylactic mastectomy.

I'm trying to wrap my brain around this decision and what I need to consider. What do other women think about, how do they feel afterward, and what happens that you don't think about till after the surgery? I'm trying to connect to anyone I can and soak up every piece of info I can.

The force website looks like it will be helpful too!! Thank you for the recommendations!

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Feb 25, 2021 02:34PM ctmbsikia wrote:

Age? That may help if others see, can relate, and possibly share with you. I would use that as a highly weighing factor if it was my decision. I'm sorry you are faced with such a decision. Sorry I didn't have much advice for you, it was hard enough decide after being diagnosed. Best wishes to you.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 4/11/2018 Whole breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Feb 25, 2021 02:51PM beesie.is.out-of-office wrote:

"I had my first lumpectomy at 35 and then another a year later. All benign but I'm being advised that this isn't normal and that my risk is similar to a person who has tested positive for a gene mutation."

If I may ask, what were the results of these surgeries? I had an excisional (surgical) biopsy at 16 and another at 24, both for fibroadenomas. Those are common lumps in young women and don't increase breast cancer risk to any great extent. But if the finding had been a high risk condition, ADH or ALH or LCIS, for example, then future risk is definitely increased. In my case, although I've tested negative on genetic testing, my high risk is attributed to family history - there is enough cancer that the assumption is that there's some as yet undiscovered gene causing it - and because more than 2 decades after my fibroadenomas, ADH was found when I had another biopsy. That finding led to yet another excisional biopsy that did in fact discover breast cancer. But those first two 2 surgical biopsies (effectively lumpectomies but for the purpose of a biopsy) never played into the risk estimates from either my MO or genetic counsellor.

Certainly if your risk is 53%, that warrants serious consideration of a BMX. And as ctmbsikia mentioned, your age is a factor too. This is such a huge decision that I'd also suggest that you may want to get a second opinion either from another MO or a genetic counsellor.


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Feb 27, 2021 12:10AM sasamat wrote:

To echo @Beesie, did either of the excisions show ADH or ALH or LCIS?

I've got a lifetime risk that's lower than yours (~43%) but still considered high, coming from age (just turned 50) + extremely dense breasts (birads D) + family history (mom, bilateral) + biopsies (one of which was revealed to be ADH). The ADH was strongly ER positive. So I've chosen to go on low-dose tamoxifen. I don't think anyone here (BC Canada) would consider doing anything else at this point and I'm OK with that. But I have definitely contemplated what else would have to happen before I started seriously asking about prophylactic surgery. That probably doesn't help you much, except to say that it's a tough call.

ADH, surgical excision 2020-12-15
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Feb 27, 2021 05:51PM - edited Feb 27, 2021 06:00PM by DiveCat

Hi there!

I had a prophylactic BMX in 2014, when I was 34. I also did not test positive for any mutations (as was being tested at time, I have not had further testing for other discovered mutations etc or more advanced testing since) but my lifetime risk was assessed at around 40% due to various family and personal factors.

For me it was absolutely a choice I knew I wanted to make. Breast cancer diagnosis' have not worked out well in my family even when caught “early", and that includes my mother dying after metastatic recurrence a couple years after my initial surgery. It was a huge stressor for me knowing I was approaching an age (40s) my family members were diagnosed, as was the testing anxiety from screening.

I would say I went into it rather prepared so I don't think there were any “surprises" for me, but it is a significant decision to make. You lose sensation, risk complications, may need more surgeries (I am going for my 5th one - another fat grafting - next week), and so on. For me the relief I had was worth it, even knowing my risk is still never going to be 0 of course. Options have also gotten better for surgery and reconstruction.My sister also has a PBMX in late 2019 (she was 35) and it's pretty amazing how far things have come even in five years technique and preference wise.

I am happy to share further details if you want, send me a PM :)

Hereditary High Risk, Uninformed BRCA Negative Surgery 4/24/2014 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/12/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/14/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/9/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 12/11/2020 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo Surgery 3/4/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Feb 27, 2021 05:54PM - edited Feb 27, 2021 05:58PM by DiveCat

sasamat said:

“So I've chosen to go on low-dose tamoxifen. I don't think anyone here (BC Canada) would consider doing anything else at this point and I'm OK with that."

I don't know what the protocols are in B.C. in particular but I am in Canada as is my sister (different provinces each) and at 40% lifetime risk we were both considered candidates for high risk screening, and prophylactic surgery (or tamoxifen, if we wanted). There was absolutely no issue for either of us. That was without ADH/LCIS, etc.

Hereditary High Risk, Uninformed BRCA Negative Surgery 4/24/2014 Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 3/12/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/14/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 7/9/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 12/11/2020 Reconstruction (left): Nipple tattoo; Reconstruction (right): Nipple tattoo Surgery 3/4/2021 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting
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Mar 1, 2021 12:53AM sasamat wrote:

@DiveCat Hmm. Interesting. The overall vibe that I am getting is that my desire to pursue a high-risk screening regimen and low-dose tamoxifen is regarded as ... unusual and very vigilant (but well within medical norms for peer health systems, even within Canada). I definitely sense that if I were just passively accepting what the system offered ... I'd be getting my next mammogram in about a year. Probably/maybe no ultrasound, definitely no MRI or tamoxifen.

Officially, BC has no high risk screening except for hereditary cancers. However, once you get into the system and start talking to clinicians, there is clearly some leeway, even for people with no known genetic risk factors. But it feels like the onus is on you to educate yourself and ask for more. Maybe that would even extend to PBMX? I have not even tried to have that conversation.

ADH, surgical excision 2020-12-15
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Mar 1, 2021 12:45PM maryscout wrote:

Hi There,

I had a double mastectomy with diep flap reconstruction after being designated high risk because of ADH and ADL. Was only initially detected in one breast, but the biopsy after the mastectomy showed it in both. No family history to speak of, but that's because both my mother and her mother died from other causes when they were around 40 years old (I'm 56 now).

I went to NOLA for my surgery, and I could not be happier with the results. I know that this decision is not for everyone for a variety of reasons, but for me, it was a great decision. If you ever want to talk, please feel free to DM me.

Yours,

Mary

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