What Can I Do Now? Breast Reconstruction After Inflammatory Breast Cancer
In early 2015, I was diagnosed with stage IV inflammatory breast cancer, which is a rare and aggressive cancer. There was not much talk about reconstruction due to the urgency to start my treatment plan, which was chemotherapy, a mastectomy, and radiation.
I started chemotherapy 2 weeks after my initial diagnosis, although my doctors wanted me to start right away. I felt I needed some time to take all of this in, especially after I briefly brushed myself up on all the information I could find on inflammatory breast cancer without sending myself silly. I found out that this rare cancer only accounts for 1 to 5 percent of all breast cancers and that often it is diagnosed at later stages. I do not remember seeing much about reconstruction options, nor did I know any other women diagnosed with this same type of cancer.
My chemotherapy ended in May 2015. That July, I got a radical mastectomy with lymph node removal, after my body healed. I also got an expander in my left chest to stretch my skin for reconstruction.
Having a radical mastectomy was challenging because I also immediately had lymphedema in my left arm as well. During that time there was not much talk of the reconstruction. I didn’t have a reconstruction plan because I still needed to have radiation to my left breast and chest, up to my neck.
After radiation, I still did not hear much about the reconstruction, so a constant lingering question for me was, “WILL I EVEN GET RECONSTRUCTION?” Soon I settled in to the thought that I may just have one breast forever because reconstruction seemed non-existent to me at the time. I had come to a place where stuffing my bras with just about anything was my normal, and frustrating, too, because I was a bit heavier and my boobs seemed to be a bit bigger then. I often used multiple things all at once. Again, it was my new normal.
One day in the summer, I was taking a picture. It was hot, and the stuffing in my bra made me hotter. In the photo, all of the stuffing showed on my face, and small bits of stuffing could be seen hanging out of the top of my dress. That day I decided that couldn’t be my only option and I started to bring up reconstruction at my appointments with my breast surgeon and my oncologist.
Fast forward a bit into early 2016. I was able to get the reconstruction, and my doctors decided that TRAM flap surgery was the best due to the inflammatory breast cancer. I was not able to get any implants. The flap surgery I had involved the removal of my right abdominal muscle, which I was not OK with at first. But when I weighed out the differences of having a left breast or not, I swiftly decided I would do just fine without the abdominal muscle after all.
At the time I did not have many questions because I was dealing with the aftercare of surgery. I was just in awe of finally getting to this point in reconstruction. I became grateful to the recovery process, which was a bit difficult due to the time it took to heal. I suffered some complications like infection, which caused me to wear a wound VAC, a special medical device that helps wounds heal, and just did not have the strength to do things as normal.
I trusted my doctors through all of this and did not question my options, if any at all, because my mindset was stuck on learning to be more grateful for each day. I did whatever I needed to do. A few months later, I had a reduction on my right breast for a more symmetrical look.
In the early stages of reconstruction, my doctors informed me that it was not a good idea to get any revisions to my left breast. I did not question it much, again learning to be grateful. I also still had not found much information on options for reconstruction. In fact the, flap surgery I had seemed to be the best option.
Now, 2 years later, I have some questions after meeting more women who talked about their journeys and shared their stories of reconstruction. I know all of our situations are very different and unique. I often wonder if I would be able to get some revisions to alter the shape and size of my left breast, and to create a more formed right breast, because I was heavier when I had the reduction of my right breast. Lately I have been preparing on how to start the conversations with my breast surgeons about if there are any more things we could do to make my breast look a little bit more normal shaped.
I also have not been able to do much lifting and carrying, so another question I have is, “will I ever get my strength back in my arms?” I know due to the lymphedema in my left arm I may not get back to the strength I had. My right arm has not been doing as well either, as far as strength goes.
Being a single mother of two can be difficult going through all this. My 12-year-old son has been a great helper to me. He carries most of the grocery bags and does some lifting and reaching for me as well. I never thought I was a strong person before my diagnosis, but I surely could carry groceries without any issues. I wonder if there are things I could do to strengthen my arm with lymphedema to the point where I am able to function as well I once did with it.
Having any breast reconstruction will be a challenge for any of us to get through. I tell myself, about a lot of things, that it will be a new normal and we can adjust. Even when I am feeling positive, I still wonder if there is anything I can do, considering there were not many options to begin with.
Nadiyah Brown, 33, of Norristown, Pennsylvania, was diagnosed with stage IV inflammatory breast cancer in May 2015. She is a Living Beyond Breast Cancer Young Advocate.
Do you still have questions after reconstructive surgery? They will be answered at the 2019 Living Beyond Breast Cancer Conference: Sharing Wisdom, Sharing Strength breakout session Ask the Experts: Lingering Questions After Breast Reconstruction with panelists Minas Chrysopoulo, MD, FACS, and Tara Dunsmore-Williamson. Register, or check back in late September for a link to the recording.
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