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Topic: Surveillance Vs Surgery

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

Posted on: Feb 27, 2019 02:01PM - edited Aug 24, 2019 11:03PM by NinjaAw

NinjaAw wrote:

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Feb 27, 2019 04:03PM blah333 wrote:

My grandmother, mother, and I had breast cancer, but no BRCA gene. My aunt in her early 60s recently got a prophylactic mastectomy. She too was tired of being prodded and worrying.

I did not have recon and in other places online have seen women who get prophylactic mastectomies and go flat. During the span of time between my diagnosis/surgery and a few months after my mastectomy, I thought women who went this preventative route were. kind of foolish. Just monitor it! However, I now see it would be much easier to have had a mastectomy without removing lymph nodes. I've only lost two, but it still effects me negatively.

Anyway - you should really be in no rush to make your decision. If everything is fine now - why not enjoy having breasts for a little longer? You could probably wait years, depending on your insurance. It would still probably be annoying to get a mammogram every 6 months. But still.

Your surgeon sounds like somewhat of a bully/pushy.... you can firmly say you're not ready. I only had two months between diagnosis and surgery (which I know is longer than most women have) and I spent that time looking at many pictures of post-mastectomy chests. It was helpful to create a new future image in my mind of my post-surgery results. It's still a drag to have such a loss/"degredation"/difference but I do like my flat chest.

If your surgeon has an attitude against flatness/is obsessed w implants etc. when you do finally have surgery you should probably find someone else. Being flat is still cosmetic, and it's important to get nice results. It can make a huge difference in how you feel about the change.

Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 27, 2019 04:43PM San1971 wrote:

Dear NinjaAW, I agree with blah333 that there is no need to rush and that you need time to adjust to the idea of a full mastectomy. And yes, there will be BRCA+ women in their seventies who never had bc. However, there are also many BRCA+ women who were not that lucky. Last year I lost a friend who was BRCA+. She was 41. After her diagnose she lived for two years only - it was quite aggressive. She tried absolutely everything to survive - except a mastectomy.

I do not want to scare you. The good thing is that you know you carry the gene - my friend didn’t know, otherwise she would probably have been more alert - she initially thought her lump was something else. She was not on any scheme (MRI or ultrasound) like you - it’s a huge advantage that you are.

Wishing you lots of wisdom. Take your time.


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Feb 27, 2019 04:53PM - edited Aug 24, 2019 11:03PM by NinjaAw

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Feb 27, 2019 05:45PM vlnrph wrote:

It's good to see the term 'risk reducing' used instead of prophylactic or preventive. There remains a small chance of cancer cells forming in the remnant of breast tissue left following mastectomy which some may not realize when the older language is employed. I think self exam would be easier without implants getting in the way.

The plan to alternate MRI and screening mammogram every six months is a reasonable one however I was beginning to be concerned about potential toxicity of the gadolinium contrast agent. So, surgery would also eliminate that worry/expense.

For blah, since there is apparently no BRCA mutation in your family, has anyone gone to a genetic counselor to be evaluated for more extensive panel testing?

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 28, 2019 03:50AM blah333 wrote:

vlnrph -- yes, by the time I got it, more panels were available than the 7 years earlier that my mom went through BC. I forget how many they tested - 20 things? more than a dozen but less than 20 or 30? I don't recall. I had no mutations or variations or whatever you may call them. But obviously some factor is at play. I'm very worried about my sister who hasn't even gotten a mammogram since my diagnosis 1.5 years ago wtf.


For the original poster, I can see your doctor's concern now. If I were you I would not be thinking about those 70 year olds who never had a problem. But still... would 6 months hurt? I had 2 months between diagnosis and surgery, it was helpful to prepare my mind and get used to the idea that I'd have to change my body. Not that much time, but more time than many women. It sucks, especially at 35, most women who get cancer are older or friends mom's. I was also in the best shape of my life. Stinks to "take care of yourself" and have an outside force still fuck you up.


Personally I found it useful to look at as many mastectomy pics as possible to prepare my mind as well. I knew I wanted to go flat so I just looked at those pics if possible, Instagram was useful with the #mastectomy among other phrases. I think it really helped. When I had to take off my bandages it was not as hard as expected. I felt much better after surgery than the time leading up to it.

Dx 9/29/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/6/2017 Mastectomy: Left, Right
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Feb 28, 2019 09:17AM - edited Aug 24, 2019 11:03PM by NinjaAw

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