Survivorship Is Not a Passive Sport

Rebecca Bechhold, MD

Most patients would walk through a ring of fire if they thought it would cure them of their cancer. They put up with significant toxicity, inconvenience, and financial strain to get through the treatment we prescribe. The strength and resolve we witness daily is remarkable. “Oh, I had a few miserable days, but after that I was fine! I went right back to work! Don’t you love my wig?” “My toenails fell off, but I don’t wear sandals for a couple more months so I figure they will be back by then.” “Could we move my chemotherapy to Wednesday, because I am having 40 people for Thanksgiving the next day.” The woman who asked me that then had 90 guests for Christmas while still on treatment!

Patients often have astonishing drive and determination while on active treatment. But the new focus on survivorship is tricky. Enthusiasm and energy seem to fade for many into, “how are you going to make sure my cancer doesn’t come back?”

We all do things we don’t particularly want to do. We go to work, take care of our family, put gas in the car, shop for food. Tasks that must be done for our life to proceed. We may not always find pleasure in them. Some days the job is uninspiring, the kids are whining, or the teenager is sullen. Food has to be procured, bagged, put in the car, taken out of the car, and put away. Not to mention the cooking, then the dishes. But we do all of it because it is part of our life. There are things we must do, and we try to find some satisfaction, if not joy, in the performance of them.

But what if certain daily tasks and choices could help you remain cancer free? There is a major effort to address survivorship with patients who have completed treatment and are trying to stay disease free. I have practiced for 30 years, and I suspect we have all been talking about this topic, though maybe not with the formal moniker. In the past, it was the patient saying, “what do I do to stay healthy?” Now it is a formal survivorship portion of the EMR. Either way, it is not something we can do for our patients. They must own it and take it on as a responsibility. It’s part of their treatment, just like taking a medication, and the things we advise them to do are equally, if not more, important for their disease-free survival. We can order the right tests and imaging studies, but we cannot personally choose their groceries, nor pick them up and take them to the gym or yoga class. (Check out this article from the Journal of Clinical Oncology-yoga can help reduce fatigue in breast cancer patients. It also helps with hot flashes in other studies. I think we can all get behind that!)

During October-the pinkest month-why aren’t we seeing vigorous promotions for diet and exercise? Buying pink workout clothes does not have any benefit. You have to sweat in them. Pink vodka does not support breast health. Patients and supporters talk, they buy, but they need to also do. We have support groups, we need exercise groupies. Wearing a pink bracelet does not make you healthier, but a pink Fitbit might motivate you to get in 10,000 steps a day.

Marisa Weiss, MD, president of breastcancer.org, conducted a survey of women asking them what lifestyle changes they were interested in learning about to reduce the risk of breast cancer-78% of the respondents were interested in learning how to reduce their risk, with 41% interested in the role of exercise, 35% in weight reduction, and 30% in dietary changes. Only 12% had any interest in learning about the risk of alcohol consumption. Indeed these are not cancer survivors, and perhaps they would have a keener interest, but I suspect, based on my own experience that the numbers are not much different.

Survivorship is not just about getting tests, though many of my patients seem to be focused on that part. It is very much about lifestyle factors. Diet, exercise, weight control, and alcohol use must be part of our conversation each visit. Patients must see these as part of our “prescription” for their cancer treatment.

You can’t see that breast cancer survivor every 3 to 6 months, watch her weight balloon up, and not ask her what is causing this to happen. We must take time to talk to people and ask about their lives and how they are living each day with an eye on remaining cancer free. I had one patient who was clearly having some anxiety issues. As we talked, I found out that she was self-medicating every evening with a bottle of wine. While she graded papers! After I picked my chin up off the floor, I advised her that this was not an acceptable coping mechanism. We talked about alternatives and discussed what her specific fears were. She felt better able to cope after that, had a better understanding of her disease and risk factors, and is hopefully doing a better job grading those essays! A family member of hers grabbed me later to tell me they were unnerved by what had been going on, and were so thankful that we had spent the time talking about the patient’s concerns, rather than just conducting a physical exam and sending her out the door.

I am certain all of my patients are not as forthcoming, and I probably miss opportunities to educate and encourage. But we all need to do a better job of discussing what patients can and must do to be true survivors. They may not want to walk every day, they may not want to go to a yoga class, but if we make it clear that this is as much a part of staying cancer free as taking an infusion or a pill or radiation, perhaps we can get better buy-in, healthier patients, and better survival.

No more excuses. No more “I don’t have time,” or “It’s too cold out,” or “I know I should, but…” It has to be done. Just like getting up every morning and going to your job-no-shows are fired! If you don’t buy gas for your car, it will not run. If you do not buy food, you will be hungry. There are just things you have to do. Compliance is required for a pill or a lifestyle and failure to comply will compromise the outcome. No matter how many tests we order.