55 Years Old with Bilateral DCIS and Strong Family History - Boston, MA

In 2011, I had a mass removed that was precancerous from my right breast. My mother and sister had each had breast cancer twice. I was tempted at that time to do bilateral mastectomy as a preventative measure. I went to see a local plastic surgeon who showed me after pictures that horrified me. I continued with mammograms every 6 months, then got switched to MRI surveillance. I asked to be changed back to mammogram this year. In February, calcifications were seen on both sides. Biopsies revealed DCIS on both sides.
I live 100 miles from Boston and researched Dana Farber Cancer Institute and Brigham and Womens Hospital. My breast oncology surgeon was my first visit. Since day 1, I have nothing but positive things to say about the facilities and staff at both places. We decided on mastectomies with immediate reconstruction. I met with Dr. Charles Hergreuter who does implant reconstruction. We determined that I am not an ideal candidate due to body and breast size and a 20 year history of fibromyalgia.
Next up was Dr Matthew Carty and his staff. I first met with his PA Tracy who was very impressive with her knowledge and compassion. Last week I met with Dr Carty and could not be any more confident that I have made the right decision and have chosen the right surgeon. He is confident and an expert in his field of micro vascular reconstruction and will be performing DIEP flap on June 3. He was kind, caring, patient and compassionate. He made it clear that I can contact him at anytime. His assistant Laura is pleasant and efficient.
All that is left is one pre-op appointment tomorrow and then it is a go. I expect a 10-12 hour surgery, one night in ICU, then 5 additional days in the hospital. I will likely need an additional "tune-up" surgery in 3 months for fat grafting and reshaping. I expect to have an excellent outcome.
Mentally, I think I have held it together pretty well, considering the diagnosis was over two months ago and I still haven't had surgery. I was a bit surprised at how important reconstruction was to me at this age. I am recently engaged to a wonderfully supportive man. Thankful for him (and my electric recliner!).

Well, it's been quite a ride so far. I ended up being in OR approximately 15 hours, guess it took longer to get all the breast tissue out as my breasts were very wide. I developed some blistering on my skin and lesions in my mouth that definitely complicated my hospital course, no one knows what i reacted to, but definitely reacted to something. I had to lay on my back which was the most painful part, the surgical incisions were not that painful at all. I really couldn't eat or drink which likely didn't help my healing.
I came home after 6 days, did the 200 mile round trip 2 days later for drain removal from the breasts, what a relief. Developed fungal rash from the irritation from the drain and am just now getting that under control. The sentinel node scars look really good on both sides. While the transferred flap tissue is healing well and took beautifully, the native breast skin has been more of a challenge. I developed blistering similar to what was on my back and now that has turned to black eschar on both sides. The right is healing more quickly, now about half the size of the left. I had the last abdominal drain out last Thursday and this is the first week I have not had to make the 200 mile round trip. Plus, I got to resume caffeine yesterday!!!!!
Saw my breast oncology surgeon last week also for the first post op visit with her. It turns out there was a third area of concern, well away from either of the biopsied sites that was found only on post surgical pathology. It helped to know that the mastectomies were the right decision, it would have been missed had I gone the lumpectomy and radiation route.
The twice daily dressing changes have been tiring, having to sleep on my back has been a challenge and the hot flashes from stopping HRT have been vicious. I has been a tough time and I have thought many times that I might have been happier if I had just had the mastectomies and not the reconstruction. I may feel differently down the road, but it has been a lot of things to deal with that were not expected.
I think my surgeons did an excellent job, the care at Brigham and Womens was wonderful. But, if I did not have a supportive fiance who has been by my side through this whole process, I don't think I would have gotten through it. Am still hoping I will be happy in the end.

Seeing my surgeon again tomorrow. This has been extremely frustrating and depressing to go through. I do not feel these wounds are healing anywhere near as quickly as they should. Am very curious to see what he has to say tomorrow.