Surveillance Vs Surgery

NinjaAw

Hi everyone! I'm 43 y.o. BRCA1 positive with family history. Underwent BSO+total hysterectomy but for breast cancer risk evaluation I chose for yearly MRI alternating with ultrasound. By now I start feeling quite exhausted with numerous callbacks & biopsies after each test. It feels quite nerve-wrecking to the point I am starting to think about risk-reducing BMX. I am having an appointment with a surgeon in March to discuss the surgery. But it still does not sit well with me. My understanding, having a mutation does not automatically translate into having cancer in the future. I know, the odds are high but none of my biopsies came back positive, just false alarms constantly coming from radiologists. I've heard stories of ladies in their 70s and BRCA+ who never got cancer even without BMX. So here I am now, tired of being poked and tested out but same time afraid of the potentially unnesessary surgery & my body image changed to the worse. According to the surgeon my only choice is implants, but even if I opt for surgery, I want to go flat anyway. When making decision about hysterectomy it was a bit easier, since there was clear medical indication for that. But with breasts it's a different story & lots of uncertainties. I for sure will ask all the questions to the surgeon. But it feels she'd rather be pressing on surgery. I am sure some of you ladies came across same difficult decision. So share your opinions please. Thank you & take care!

blah333

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.

San1971

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.

NinjaAw

Thank you for your input ladies, it's much appreciated. I have to add that the obsession of my surgeon has some basis. My mother got BC at 47 and passed shortly after that with brain metastases. I would say this is quite a factor for making a decision sooner than later. I had no idea this can be so hard to decide.

vlnrph

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?

blah333

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.

NinjaAw

blah thanks. Yes I think there will be some time available before the surgery anyways. That's a great advice to use this time sorting things out etc. I am prepared to what my body will look like after, since I've been there for my mom during her surgery and after. She chose to go flat as well.

Thank you ladies. I can update later if anyone interested. Take care 💖