“What? The cancer treatment I had years ago puts me at risk for what?”
The drama is playing out all across America: Survivors are shocked to read in a magazine or hear at a survivorship event that the therapies that put their cancer in remission also put them at risk for future health problems. Any resulting confusion, anger, or fear colors survivors' understanding of the risks.
Given that many survivors completed their treatment before the advent of survivorship care plans, how can clinicians introduce the topic of late effects to these patients who are doing well? I mean, how do you do it without feeling like you're disturbing a hornet's nest?
Simply providing dry medical information can lead patients to think you don't realize how upsetting the news is—or you don't care. Waxing philosophical, such as by suggesting late effects are a luxury reserved for survivors of an otherwise lethal disease, can backfire, too.
I've never experienced the shock of learning about late effects. When my oncologist listed each drug of my initial chemo protocol, I mentally rattled off the potential long-term risks. The first time I lay frozen under the gantry of a linear accelerator, my imagination fired up images of mutagenic hit after hit to the DNA of my healthy cells.
But I was the exception. Talking with other long-term survivors in support groups and on listservs has convinced me that while fear of recurrence is nearly universal, fear of late effects—particularly of second malignant neoplasms— is rare. Why is that?
For starters, many patients have no recollection of late effects being mentioned when they weighed their treatment options. Either the topic was not discussed or they didn't process what information was provided.
Whatever, the omission leads many patients to believe radiation therapy selectively destroys cancer cells, like cherry-picking PacMen. And they believe chemotherapy wipes out the intended target plus occult cells of any other type of cancer that might be floating around. Consequently many survivors in remission presume they have less risk of developing a new cancer—a welcome bonus to offset their fear of recurrence.
In addition, patients have a tendency to assess their overall health based on their cancer status. The longer patients are in remission, the greater their confidence about the future, a feeling that can create blind spots to their risks of other diseases, malignant or otherwise.
In today's information age, the reality is that your patients will learn about late effects, sooner or later. And the risks to both their health and the clinician-patient bond are great if they first learn about late effects from sources other than you.
Your patients trust you and depend on you. For the same reasons I urge parents diagnosed with cancer to share the news with their children, I urge you to find a way to introduce your patients to late effects. Initiating a dialogue opens opportunities to:
Protect them from inaccurate and unduly frightening information.
Provide personalized and empowering information in a helpful, hopeful manner.
Strengthen clinician-patient bonds.
End-of-treatment visits provide a natural—and more neutral—setting for discussing late effects in the context of wellness. Until survivorship care plans are used universally, and as long as you care for patients who completed treatment years ago, here are a few tips that may ease the onerous task of introducing late effects to survivors in remission.
Warn Patients Before Delivering Emotionally Charged News
Nobody likes being surprised by bad news, particularly cancer patients enjoying a “good news” checkup. Survivors may take your mentioning potential late effects as salt thrown on the wounds of their post-treatment survivorship. So forewarn patients in a hopeful way.
“We need to talk about an aspect of your follow-up care that some patients find upsetting at first. It's a topic we can—and will—address in healthy ways: late effects.”
Emphasize the Value of Learning about Late Effects
Ignorance is not bliss when it means closing the window of opportunity to affect the outcome. Our ability to prevent late effects may be in its infancy, but researchers know enough for you to guide patients with valid recommendations.
“Learning about late effects is an investment in your hard-earned remission. I'll do what I can to prevent problems down the line, but you need to know what you can do, too. For example, your knowing when to call the office enables us to work as a team to nip problems in the bud whenever possible.”
After learning they are at increased risk for specific problems, some patients feel doomed. They don't realize that even a hundred-fold increased incidence of a rare event results in only a small increase in the number of new cases and that their risk of developing the problem is still relatively small.
“While learning about late effects, you need to keep in mind that most survivors do not suffer serious late effects of their treatments.”
Patients who never heard of late effects may lose confidence or trust in you if, now, they feel they were patronized or bamboozled with incomplete information when they made their treatment decision.
The best way to rebuild trust depends on the specifics of the patients' circumstances. Your job is relatively easy if your patient was desperately ill and had only one treatment option, or if your patient was treated eons ago, when little was known about late effects.
If the omission is regrettable, you can still mend the rift. I suggest that instead of talking about late effects as the price patients must pay for renewed health, focus on how your patients are always receiving the best care they can.
“We did what we had to do to save your life when you were diagnosed. If we had it to do again, we'd do the same thing. Now that treatment is behind you, let's focus on doing what we can do to take good care of you from now on.”
Comprehensive care of the cancer patient includes discussing late effects and guiding patients to adaptive responses. If done with compassion, patients may come to see late effects as I do: a luxury reserved for survivors of an otherwise lethal disease.