One step preventative mastectomy

RubyRed3

I'm considering a one step preventative double mastectomy but I'm scared!! I have met with Dr Ashikari and Dr Salzberg...who are wonderful. But I'm scared! I'm scared of surgery, scared of complications, scared I won't feel like myself ever again. But surveillance is stressful in its own way and I kind of want off the rollercoaster. Anyone who has had this procedure and has anything to say about my concerns would be so helpful to me. Has anyone been so scared? I'm talking like phobia scared. Some people have an irrational fear of heights or spiders....well mine is surgery and complications.

MelissaDallas

Ruby, you might consider asking all your questions on a single thread, rather that starting a separate thread for each question. Information you have give in other questions in other threads is pertinent to whoever is trying to answer you.

RubyRed3

OK, thank you MelissaDallas! Since they were different topics I guess I figured it would be better if they were under the right categories. But thank you for the tip...I want to get the most out of my questions so I will do that moving forward

Here is all of my I found and concerns...

I am 34 years old. I was tested for a familial BRCA2 mutation 6 years ago and was found to be negative. Since then I have had 4 biopsies all fine. Most were fibroadenomas that i requested be biopsied. One with usual ductle hyperplasia, I took Ortho Novum for 13 years and I have an ATM VUS. One genetics counselor and Dr said mastectomy is appropriate, another Dr said surveillance is sufficient and only necessary as good measure because of the VUS. The Tyrer Cusick (sp) model gave me a 38% lifetime risk...13% of that risk came from the usual ductle hyperplasia (which is confusing to me as every doctor says it's nothing to worry about). So I am at a point where I don't know what to do. Screen (stressful) or mastectomy (scary and permanent). One Dr says high risk another Dr says not high risk but to be cautious screen. It's all so confusing. That's the whole story

NotHerToo

I do not have the gene, but a VERY strong family history. I was approved for prophylactic by insurance, but allowed my doctor to talk me out of it, due to similar fears. If I had the gene there would have been no question. Then biopsy showed DCIS, doc said I was over-reacting to request bilateral mastectomy. I changed doctors and went with one step. Turned out that DCIS wasn't the only thing I had. Another area not previously detected was found, stage 1a her2+. What I thought would be "preventive" turned out to be lifesaving.......I wish I hadn't chickened out 2 years ago when I'd been approved. Now 12 weekly chemo followed by the full year of herceptin. I knew deep down that I should have done it, but my fears made the surveillance option seem so much better. The surgery and recovery was surprisingly very easy. Chemo, not so much. Fear of recurrence is now the greater fear....

woodsyny

RubyRed3, Dr Ashikari and his team are SUPER! He performed my bilateral nipple sparing mastectomy on 4/17. I have had a breast history for about 12 years, 2 lumpectomies for ADH, and the last one, performed by Dr Ashikari for ADH did show DCIS hiding out. I decided I wanted both my breasts off I was tired of the mammograms, and breast MRI's, and tired of worrying about the cancer becoming invasive.

I will not lie and say the surgery was a walk in the park. It wasn't. Each day better, but I had to keep reminding myself this is temporary and will get better. I am 7 weeks out and have had some seromas that had to be drained but I have beautiful breasts and he is a super surgeon. I have had 2 co-workers who also had the same surgery by him and the results are beyond amazing! It is a personal choice, and everyone is different. You have any questions, please feel free to email me!

Rrobin0200

BMX on 3/31 for high grade DCIS in L breast. No regrets. The worst part were the drains. Such a pain! But, overall, the surgery, reconstruction and its recovery was not bad at all.