In spite of my best efforts to prevent Lymphedema, about 5 months after finishing radiation, my arm visibly swelled during a dance performance. I had already been seeing a physical therapist preventatively, but increased my visits and spent two weeks doing compression wrapping to attempt to reduce the swelling (which did help some, but isn't a cure). I now wear a compression sleeve all day, every day, and one at night as well.
Living Beyond Breast Cancer interviewed me about living with Lymphedema. As I'm still trying to emotionally come to grips with what this means for me, I'm grateful for the opportunity to share my story. Read more about my experience on their blog:
Yesterday, I turned 37, and today I received my final radiation marking the end of my active treatment for breast cancer. Compared to chemo and surgery, radiation was a breeze (just time consuming - every weekday for six weeks!) My skin irritation isn't nearly as bad as I anticipated, so I'll keep applying ointment and watching it peel for a few weeks as things continue to heal.
I've been declared "no evidence of disease" and my "active treatment" is over, but something I never realized before going through this myself is that my experience with cancer is still not over. I'll go for follow ups every 6 months for the next 2 years with each of my oncologists (medical, surgical, and radiation). I've started seeing a cardiologist because chemo seems to have slowed down my heart rate (nothing that any doctor seems too concerned about, but not normal for me, so something to monitor and hopefully regulate with medication). I may need physical therapy on and off to prevent lymphedema (swelling in my arm) because of the lymph nodes I had removed. In a week, I'll begin taking a hormone therapy pill, which can come with a variety of side effects. The goal is to continue taking it, or another version of hormone therapy, for 5-10 years to lower my risk of recurrence. After months of low exercise, it's going to take some time to get back to my "normal" self, and with the heart rate changes and some lingering shortness of breath, it could be a challenge.
I'm starting to understand why cancer survivors talk about "the new normal" after treatment. My body has been through a lot, and will continue to adjust and recover. I'm ready for this phase, and whatever challenges it brings, I'm grateful cancer cells aren't a part of it.
Lots to update, but the most important thing is that since my surgery last month, my status is now N.E.D. - no evidence of disease! This means that the surgeon removed all the cancerous cells that could be seen on imaging (the primary tumor, a tiny satellite tumor, and 2 cancerous lymph nodes). The term essentially means the same thing as complete remission or complete response. Doctors generally hesitate to use the word "cured" because they never know if microscopic cells are still present and the cancer may return, but to the best of their knowledge, I am currently cancer-free.
And yet, my treatment is not over. As I said in my last post, the surgeon removed a few lymph nodes during surgery, and then a few more. With two positive nodes, she wanted to ensure it would be all out and no lingering cancer cells would continue traveling through my lymph system to other areas of my body. She took out a total of 17 lymph nodes, which means I am at life-long risk of lymphedema (swelling in my left arm/side/breast) and need some physical therapy to loosen up the tightness in my arm and armpit (called cording or axillary web syndrome). Lymphedema isn't entirely preventable, but there are things I can do to keep the risk low, and if I do develop it, physical therapy can help lessen any swelling. For now, I'll visit physical therapy weekly until treatment is over and I have gained full mobility again.
I also went for my radiation planning session today, during which I had CT scans done, received 5 small tattoos to mark the radiation area, and learned breath hold techniques to protect my heart during radiation. The radiation oncologist will now map out my treatment and I'll go back on the 24th for a test run. Actual radiation will begin on the 25th for 30 sessions (every weekday for 6 weeks). Because I had a lumpectomy rather than mastectomy, radiation will zap any microscopic cancer or pre-cancer cells that might be lingering in the area unseen. The radiation will also cover the remaining lymph nodes in my armpit, near my collarbone, and in the center of the chest to again ensure there's nothing microscopic left.
By early August, my active treatment will be over. I'll begin taking hormone therapy pills to reduce the risk of recurrence and will visit my oncologist every 6 months for monitoring. There is a light at the end of the tunnel!
Breast cancer survivor.