Misty from Eugene, Oregon
DIEP Flap Breast Reconstruction
Hello, my name is Misty and I'm from Eugene, Oregon. In December 2013, at the age of 37, I was diagnosed with breast cancer (specifically Invasive Ductal Carcinoma and Ductal Carcinoma in Situ (DCIS)). As with any cancer diagnosis I was immediately thrown into a whirlwind of doctor appointments with medical and surgical oncologists. I was given pamphlets, books, and various other forms of information on paper. I asked my surgical oncologist if I would need a mastectomy or lumpectomy, and given the extensive nature of my DCIS, he said likely a mastectomy. Within a month I found out I was positive for a BRCA2 mutation. With this news, I knew I would want a double mastectomy. I met again with the surgical oncologist and began asking questions about reconstruction. I asked if there were ever cases when reconstruction wasn’t possible, because for me reconstruction was something I felt I wanted. He told me it was rare that a woman wouldn’t be able to have reconstruction. He informed me that a plastic surgeon would put tissue expanders in and once all the treatment (radiation) was done and healing complete, they would exchange those for permanent implants. I immediately thought ‘great, that’s what I’ll do’. I recall reading one of the pamphlets later on and seeing information on other forms of reconstruction that included tissue transfer instead of implants. The diagrams looked intense and scary and I immediately thought I wouldn’t consider those options as they looked much more invasive.
Fast forward several months, I was approaching my mastectomy date as I finished up chemotherapy. I went to my physical therapist to learn about what I might experience post-mastectomy. She asked me what I had decided to do regarding reconstruction. I emphatically said ‘oh, I’m doing implants, those other surgeries look scary to me’. She asked me to go home and research the effects of radiation on implants and the failure rates/contracture rates of implants on skin that has been previously radiated. So I did what she asked, and I was shocked. According to the American Society of Plastic Surgeons, the risk of major complications with implant reconstruction and radiation was near 45%, compared to 24% in patients not exposed to radiation (even higher in cases where radiation was done prior to reconstruction, as in my case). I immediately told my husband that I better rethink my reconstruction options. I didn’t want to have implants if there was such a high risk of complications and failure. So began my search into tissue transfer, specifically the DIEP Flap reconstruction option, and hours upon hours of internet research.
On a subsequent visit to my surgical oncologist, I told him that I was thinking more along the lines of DIEP flap over implants. He told me he thought that would be a good option for me but that I would have to look elsewhere as it wasn’t performed in my area. I felt a little defeated because I wasn’t sure traveling for surgery was going to be feasible for my family, but I told myself I would at least talk to some surgeons that perform this surgery. I ended up having four consults, which led me through Oregon, up to Seattle and eventually to Texas. I listened to the plastic surgeons tell me about the surgery and while I was scared and intimidated by the surgery, I still felt like I was headed down the right track. I began researching online and found a Facebook group dedicated to DIEP Flap reconstruction, strictly for women who had already been through DIEP flap reconstruction and women considering DIEP flap. It was here that I first heard of a group out of Texas called PRMA, a group of micro-surgeons that people were traveling to from out of state for DIEP flap surgeries. I remember asking my husband, ‘am I crazy to consider traveling to Texas for this reconstruction surgery?’ His response was ‘this is your surgery and will be with you the rest of your life, you go where you want to go’. And that’s what I did. On December 9, 2014 I had a bilateral DIEP flap reconstruction. They removed the expander from my radiated side and did a right mastectomy followed by DIEP flap on both sides.
I think for anyone considering this surgery, you have to feel good about your doctor and confident in their abilities. Complications happen, even with the best of doctors, but doing your research and knowing how often your doctor does DIEP flap reconstruction, what their failure rates are, what kinds of complications they typically see, how long they expect your surgery to be, what the backup plan is in case of a failed reconstruction etc. are really important details. I made my choice in doctors based on the answers I received to all my questions, and how comfortable I felt in person with my doctor. I knew immediately after meeting him the first time that it was the right choice for me.
As for the surgery itself, it’s no walk in the park, but nothing about cancer is a walk in the park. My surgery was 8-9 hours long, I was in the hospital for 5 nights, and stayed in Texas for about 2 weeks after surgery, before returning to my home state. The first few days after this surgery are kind of a blur. My pain was managed very well in the hospital and I found I needed very little in the way of pain management after the first week. The doctors and nurses encourage you to get upright and moving as soon as possible. That meant moving from the bed to the chair within the first 24 hours after surgery, and short walks around the hallways within a few days after surgery. These moments were difficult, but key to healing. The first time you move from the bed to the chair is overwhelming, as is the first walk down the hospital corridor, but everything gets easier after that.
There are a lot of details about the DIEP flap surgery that are somewhat dependent on doctor. Most women know they will wake up with drains, but just how many may vary (I had four total). Some doctors require a hot room or bear hugger in the days following surgery, others don’t. Some doctors require support garments while others don’t. I was in an abdominal binder for 2 weeks (until my final drain came out), and following that I was in a support girdle/underwear for 8 weeks for the abdominal part of the surgery. I wore a surgical bra for a week or so, until my last breast drain was removed, and then moved into a full support bra. I was in some sort of bra and support girdle for 24/7 for several weeks, but it felt better having those garments on at that time, then it did to be without them. I managed sleep by sleeping in a recliner for 4 weeks, and after that moved to being propped up in bed with lots of pillows. I needed help showering the first week out of the hospital but for the most part I was able to get up and down as needed and move around the house on my own.
My surgery was completed in 2 phases of surgery. The first phase is the big one. The goal is to get the tissue transferred and have it survive. Several months later (May 2015) I had the 2nd phase, which included nipple reconstruction and some fat grafting for symmetry. I have been extremely pleased with my reconstruction results. My doctors were able to reconnect a nerve in my left radiated side, and some sensation is coming back over the surface of that breast. My right prophylactic side has some feeling, and some numbness, as do some areas of my abdomen. My breast won’t ever feel the same or look exactly the same, but my results far exceeded my expectations, and for that I am grateful.
I have a 4-year-old daughter, and if there’s anything I want to teach her through this experience it is that my scars do not take away from the person I am. They are a part of me, and they have a story behind them, but they do not make me any less or more of a person. They are just a part of my new normal.
I wish that every woman was informed of her options for various types of reconstruction, but that sadly isn’t the case. Most women are informed of what is performed in their local areas. And unless you live in a large city, DIEP flap reconstruction may be left out of your reconstruction consults. I encourage anyone faced with reconstruction choices to do their homework. Join support groups, ask questions, and talk to more than one doctor (talk to doctors that actually perform the surgery you are interested in). If it comes down to it, consider traveling for the right doctor, whether that’s 2 hours by car or flying across the country. There are various programs out there to assist with travel and lodging expenses, when traveling for cancer related care. It’s worth all the time and energy you can put into making the most informed choice for your situation.
My left mastectomy and expander placement were performed in my hometown.
My bilateral DIEP Phase 1 and Phase 2 were performed at PRMA in San Antonio, with Dr. Peter Ledoux.