Colleen from Deer Park, WA
DIEP Flap Reconstruction Following Failed Implant Reconstruction
I was humbled when asked by PRMA to talk about my story and my DIEP procedure experience. I have seen many of the videos and marveled at how well these women could recount their story and maintain their composure. I have an amazing journey I want to share but knew there would be no way I could do a video.
I widowed in January of 2010, and was diagnosed with breast cancer that October. My doctor informed me it was not unusual for a cancer diagnosis to follow a period of extreme stress in one’s life. My first surgeon recommended lumpectomy followed by chemo. As a nurse this didn’t seem right as the cancer was already into my lymph nodes. The second opinion was immediate chemo, followed with a bilateral mastectomy and radiation. This is more like it I thought. Get down, get dirty and get it out! A nurse’s mantra! But wait, I want to have immediate reconstruction as I hate surgery and let’s kill two birds with one stone. “I’m sorry we don’t recommend that since radiation doesn’t play nicely with reconstructive tissue.” At this point I put all faith in my physicians as I felt they had saved my life going the aggressive route. Looking back I should have been doing more research but I was in survival mode, still grieving my loss, and now this.
My coping mechanism was to stay clinical and positive. During my 16 weeks of chemo, when I finished my second of eight treatments, I stated “I’m half done with the first half!” I was unable to do anything but take one day at a time. My cousin who is a Nurse Practitioner came and stayed with me the weekend following my surgery. What a comfort to have her calming presence and help with dressings, drains and a firm “you will go rest now”. She reassured me this was “too much too soon”, losing my husband of 32 years and now this diagnosis. I was pretty much in a full blown pity party but I remember her saying something I never forgot: “At some point, you should consider reconstruction”.
I had given everything the old college try! Prosthesis; they are heavy, hot and very inconvenient. I tried every kind they had and kept going to the lighter weight. I was constantly moving them around. I had to plan my wardrobe according to what prosthesis I would be wearing! It became a real hassle. Every time I stepped out of the shower and looked in the mirror, I was reminded of what I had been through. I wasn’t just flat, I was concave!
In March 2014, I started searching for surgeons to do my reconstruction. “We only do tram flap, very painful and long time in hospital”. “Implants would be easiest”. Implants it is! No one ever said that implants and radiation didn’t go well together, which would have been very beneficial in my choice of reconstruction. So three more surgeries (expanders, implants, fat injections) and the dreaded drains! I had terrible side effects from the anesthesia and narcotics after each surgery. Not a pleasant experience at all even though I was pretty excited to have some contour!
That was short lived. The implants were uneven, firm, cold, unnatural, achy and ugly. At one point I even thought, “well maybe I’ll just get tattoos and call it good enough!” Then I found out tattooing doesn’t work well post radiation. At this point I have been through my share of physicians and am now 5 years post mastectomy and still I am not satisfied!
One of the turning points for me was when two breast cancer survivors shared their implant results with me. As I looked at our chests I thought, “Someone, somewhere should be able to do better than this!” I only wish I had been aware of PRMA in October 2010. Instead, I saw grotesque scars from sternum to armpit on both sides of my chest. Why did my incisions have to be 10 inches on each side when PRMA accomplished the same result with 2-3 inches of scars that you can barely see after a year! My little sister then introduced me to the work of Dr. Chrysopoulo at PRMA. I have never been received by a physician like this in my life! The entire experience at PRMA, from the moment I walked in the door, I knew I was going to be okay.
February 2017, I had my consult. Dr. C asked if I had lymphedema problems. Yes I have been wearing a sleeve since my surgery in 2011. “Would you like me to fix that for you?” I’m thinking of being sarcastic and saying “oh no, I like wearing this sleeve all the time!” but I remain professional and say “Yes, but not at the expense of my leg” He assured me it would not. So at this point I’m thinking this procedure is worth it just to fix my arm problem!
April 2017, I had my surgery, 10 hours. Seemed long but cleaning up the necrotic fat around implant on the radiation side and the lymph node transfer from my groin to fix my 5 year lymphedema took extra time. The postoperative recovery treatment regime was a breeze with NO NARCOTICS! My Anesthesiologist was the best I have ever had and at this point I am an expert on the receiving end. I felt immediately at ease talking with her and what a professional! It was such a pleasant surprise waking up feeling good! The physical limitations were the hardest because I never had any pain. I got to shower right away. It is amazing what small things can make you so happy!
I returned in September 2017 for nipple reconstruction. To my surprise I was blessed with the same Anesthesiologist! I did watch the video of the procedure prior to leaving home and even as a nurse it was worse to watch than experience! I completed the entire process with nipple tattooing in December the same year.
Oh what I would give to have found PRMA before my mastectomy, prosthesis, implants and 6 plus years of not being satisfied. Surrounding diagnosis and treatment I had several losses; my husband, my mother, an aunt, a cousin, 2 dogs, 2 horses and 3 cats. I had the honor of having my mother live with me for about a year before she died and I am blessed to have been with her during her last days. This helped me put my priorities into perspective and taught me that until you learn how to die, you never really know how to live!
From my first phone call with PRMA to my last visit, I had impeccable care and concern shown to me. They made me feel like I was the only patient they had to deal with each time. I am back to doing what I like; golf and gardening in the summer and skiing in the winter. I am enjoying the emotional and physical completeness and personal gratification of feeling and looking like a whole woman again.
I thank God every day for bringing PRMA into my life and I thank them for doing what they do so well. My wish is that PRMA reaches as many women possible early on so they too can benefit from the amazing work that they do for breast cancer patients. I promote PRMA every chance I have!