Talking About The Side Effects From Cancer

My parents, who were raised in Minnesota, trained me well: The doctor is always right and don’t talk about health or politics.

I’ve been able to get past the first and third parental edicts, but despite writing about my personal health and cancer experiences, I continue to minimize health issues when talking to friends, family, and unfortunately, with my healthcare team.

I’ve come across a lot of people like me, mostly women but men too, who want to talk about anything except health and illness, anything at all. My doctor’s appointments can easily be filled with a single word: “Fine” or, when I actually am fine with something, “Good”. This has been a difficult habit to break.

It has helped me to think about how talking to my doctor is not the same as chatting with a friend across a table (or these days, across a fire pit). If I cannot bring myself to be forthright and open then they can’t do their best for me. Talking about side effects can be a particular challenge during cancer. When treatment is just starting or isn’t going well, there are so many things to talk about, and when it is going well, who wants to seem ungrateful by talking about side effects?

I steel myself ahead of appointments, to be honest and open. Talking about side effects with your healthcare team isn’t complaining. It’s how doctors know what you’re experiencing. A lot of times, side effects are difficult to bring up because they hit the target on so many things that no one wants to admit to or discuss in detail. Here are some of the ways I try to start the important conversations around side effects.

I’m Embarrassed

I’ve learned the hard way that just starting with, “I’m embarrassed about this but…” and launching straight into the embarrassing topic is always my best bet for actually spitting it out. Once it’s out there, the doctor invariably addresses it as something totally normal.

I’m Afraid

I have chemotherapy-induced peripheral neuropathy. I reported it during my initial treatment with Taxol. Did I minimize it? I didn’t think so, but the reality is I probably did. No one new to cancer and a serious health issue wants to jeopardize their treatment because of a little tingling in the fingers.

Of course, that “little tingling” has only worsened and spread over the subsequent years. Now, when fear is what is stopping me from being honest, I admit to being afraid and why before explaining what is going on to my doctor. This allows her to see the situation from my perspective.

I’m Ashamed

I feel embarrassed to bring up diarrhea, but I feel shame when I can’t afford something. Fortunately for me, my health insurance covers nearly everything in my care but most of us are familiar with the experience of putting something back on the shelf because it is out of our price range. For many, financial toxicity is the most important side effect from cancer treatment.

Be direct by mentioning medical expenses and asking to speak with the financial or social services department. Financial toxicity doesn’t go away like diarrhea usually does. Turn this into an ongoing conversation so that whenever a new drug, intervention, or scan is recommended, you can feel confident in your ability to afford it.

I’m A Good Patient

I first heard of this “syndrome” from advocate Judy Erdahl, herself a nice Minnesotan. The good patient doesn’t want their doctor to feel bad, wants to be easy to care for, doesn’t want to complain, and so on. They also can be late to getting the care they need. I once lived with pain so severe in a knee that my oncologist asked me about it upon hearing me talk about not exercising.

A so-called “good patient” would sacrifice her comfort, as I did, to avoid feeling like a complainer. This is not being a good patient though. This is putting my own discomfort about discussing illness above my need to receive the best possible care.

I’ve learned a lot in the years since my diagnosis. I know that good care requires honesty with all of my doctors. If you are having a hard time talking about treatment side effects, try to remember that your doctor needs to hear everything that is going on. She can reassure you, make adjustments, find specialists, or help you find resources.