- Created: Friday, 08 March 2013 10:35
For anyone who has been following my blog, you know that I have struggled with the decision of whether to remove the rest of my lymph nodes under my left arm for many months. I had four lymph nodes removed during my bilateral mastectomy in November. Two of those were positive for breast cancer.
My surgical oncologist recommended that I have the remaining lymph nodes in that area removed, which seemed like a logical next step after chemo. However, this turned out to be a highly controversial subject over the next few months.
The problem with removing all of the lymph nodes from under the arm is the risk of lymphedema. Lymphedema is a swelling of the arm that occurs when the lymph nodes are removed or damaged. This swelling can be very painful and if untreated, can become infected. For some women, lymphedema can be life altering. There are treatments for lymphedema and I have been seeing an occupational therapist who is certified in lymphedema treatment...so far, so good.
I am already at risk for lymphedema due to having four lymph nodes removed. Radiation will increase that risk as will removing the rest of my lymph nodes. I can never have blood pressure taken or blood drawn from my left arm. I wear a medical alert bracelet for this reason. I also have to be careful not to expose my left arm and hand to any sudden temperature changes...such as reaching into the freezer or oven. Hot tubs are off limits. Changes in air pressure can also cause swelling, so I have to wear a compression sleeve and glove when I fly or drive through the mountains. Scuba diving is also off limits for me now.
All of this being said, my surgical oncologist recommended removing the rest of my lymph nodes because she knew that I wanted to be aggressive with treatment. It seemed like the right thing to do until I talked to a chemical oncologist for my second opinion. He told me that research shows that removing the rest of my lymph nodes is not necessary with chemo and radiation. This led me on a quest to talk to every professional that I encountered about the surgery. Two other chemical oncologists told me it was not necessary but another surgeon told me that I should have the surgery. I spent many months agonizing over this decision...this is my life on the line and now I have to decide how to proceed...it has been a bit overwhelming at times.
After much soul searching and talking to some really insightful friends, I have decided to proceed with the surgery. I have treated my breast cancer very aggressively and I only want to deal with this dreaded disease once. If the cancer comes back, I can look back knowing that I did everything possible to prevent it from reoccurring. Perhaps removing the rest of my lymph nodes is more aggressive than necessary, but I would rather live with lymphedema than the fear of not having done enough.
I scheduled my surgery for April and I am peace with the decision. To my fellow survivors who are facing a similar decision with your treatment, my advice is to look into the future and consider how you would feel about the potential outcome with each option. I wish you luck in your decision making process. Let's chat about the decisions that you are facing and how you have arrived at your answers in the comments below.
Thanks for reading!
Beverly McKee, MSW, LCSW