What I Did Wrong: Advice for Future Cancer Survivors

October 11, 2019

It is hard for me to have regrets, especially when it comes to cancer treatment. I am thankful for every step of my journey. At the same time, voicing a few of my regrets after all this time might help others. A cancer patient needs as much information as possible to make the journey work.

I am such a Pollyanna. The proverbial glass is not just half full with me; the sun is hitting it in such a way that the water sparkles like diamonds. This attitude has served me well through some of life's harshest challenges, including breast cancer.

For example, the diagnosis made me happy. Happy! "Yay!" I thought, "How good that they found the cancer so I can be fixed."

When an oncologist told me I was HER2-positive but hormone-negative and would thus not need hormone therapy, I said, "That's great!" "No," he said, explaining HER2, "it's not." I persisted in believing I had a fortuitous diagnosis in the face of a complicated diagnosis.

This is not to say that I did not have my moments. I know I did because I keep meticulous journals. I often noted how I was "tearful" those first months balancing chemotherapy with everything else. But mostly I tried to maintain an cancer-inspired sense of joie de vivre. Everything would be okay.

While I truly have no real regrets, at the same time I recognize I could have done a few things differently. Now that I am beginning my tenth year post-diagnosis, I feel I can finally talk about these things without spooking my journey. So here goes: here, I offer you a list of what I would change if I could do it all over again:

First, I should have taken off more than a week from work after the mastectomy. I can read my old journal and see how hard it was to be back at work a week after surgery. It makes no sense to rush things. My employer would have allowed me to have sick leave. The problem is that I kept waiting for somebody to ask me if I wanted to take sick leave. My mistake was not realizing that it was my responsibility to make the first move. Do not do what I did.

Second, I wish I had done more research about post-surgical garments. When my surgeon said to get a tube top, I thought she meant summer attire for teenagers. Later I learned that there are better compression garments that are like tube tops. They would have helped with post-surgical swelling. Other garments to wear after surgery might have been helpful with edema. Be sure to get the right garments to get you through the first month.

Third, if I had to do it over again, I would buy a strawberry blonde wig in a fashionable bob. While I did look longingly at wigs, I never could bring myself to get one. I was happy to wear a scarf, which made me find my inner bohemian college student of yore. I wore such pretty scarves too. Even so, my reluctance to appear unnatural by wearing artificial hair was stupid. I think it would have been fun to wear a wig. Give yourself permission to play with your looks!

Fourth, I would have been more diligent with the exercises for my right arm right after surgery. I wish I had read earlier about lymphedema and how to avoid it, if possible. I am not quite sure what I did wrong, or if I even did anything wrong, but I ended up with lymphedema within months of the surgery, before radiation (which is when my doctors worried I would be more vulnerable). On the bright side, which I cannot help but see, I was able to begin physical therapy before radiation. Long story short, do your research on lymphedema and exercise.

Fifth, I wish I had done my research and asked for more frequent heart checks, especially another echocardiogram at the end of my year with Herceptin.


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