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

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In 2011, I had a mass removed that was...

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!).

4 weeks post op today

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.

5 weeks out

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.

6 weeks post op today

Hoping these are moving in the right direction.

Hormones after bilateral mastectomy for DCIS

Met with the medical oncologist today and got the green light to resume my hormones!!! I could not be happier. I am still having healing issues but at least now I will not be having hot flashes constantly.

Well, it's been 10 weeks

i am finally getting a break from my 200 mile round trips to Boston. My surgeon is on vacation ???? Healing is still very slow. Right side almost healed, down to just a little bigger than a quarter. The left side is finally showing some signs of healing, still about 2" x 3" open wound. My surgeon thinks it looks great. I just wish would heal so I can get in at least one swim before the summer is over! Just keeping it real, it has still been very draining, both physically and emotionally.

Four months tomorrow

Tomorrow will be 4 months since my surgery. It will be my first day without having to do dressing changes! And, it will be one month prior to my next surgery. On 11/3, I will be having my abdominal incision revised and fat transfer to the low spots on my breasts. I am delaying nipple reconstruction. I might opt for tattooing instead. I will likely need a third surgery early next year to reduce the width and volume of my breasts if they don't come down on their own. They are very heavy, uncomfortable and have many hard lumps. Still not thrilled, my plastic surgeon is urging me to be patient. This journey is not for the faint of heart.

One year later

I haven't posted any updates since October of last year, but my story has been ongoing. I just had my 3rd and 4th surgery on 5/25/16. I was unlucky and developed an umbilical hernia and that had to be fixed and it was time for my second revision of my breasts to get rid of all the scar tissue that resulted from my skin necrosis and to make my breasts more symmetrical.
Immediately after this surgery I was so much happier with my results. I had so much "side boob" after the reconstruction I could barely put my arms down to my sides. My breasts were too large for me on both sides, the right was much larger than the left and the area for the nipples was way too big. My surgeon took over 300gm off of the left one and over 600 grams from the right one. I have an increased respect for women who feel the need for breast reduction. I am one of you, even after having mastectomies. I am so much happier in my new size. I am almost ready for nipple reconstruction, it will be my last surgery hopefully. I am moving cross country in 2 weeks but will fly back to Boston to have that final surgery when my body and mind are ready. My surgeon offered to do it prior to my flying out, that I could not do. I have gotten married, gone on a honeymoon, bought a house, sold a house, flown cross country to a wedding and am downsizing to 1/3 of my current living space. Would I like him to do the surgery before I leave? No thanks, think my plate is full. He "wants to finish what he started" and I wouldn't have it any other way. I will forever be grateful to Dr. Carty and his staff for all he has done for me and for his kind and caring manner.
Jamaica Plain Plastic Surgeon

Can't say enough good things about Dr Carty and his PA Tracy, Dr Thahn Barbie (breast oncology surgeon) and her NP Samantha. I have also met with a genetic specialist and a research coordinator. Everyone at Dana Farber and at B&W has been wonderful.

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