You have cancer. If that wasn’t terrifying enough, you now face a litany of medical choices, treatments, and drugs. As you try to educate yourself about those options, you also have to weigh the unpredictable nature of their side effects.
Unfortunately, the side effects listed on the drug’s label don’t tell us much about what it’s really like to take a drug. A new article published in Undark explains how and why the information patients get on side effects often seems to minimize that challenge that side effects can pose. The article uses cancer drugs as an example and is well worth a read.
Here’s what you need to ask your doctor about any new drug—especially cancer drugs—he or she prescribes for you to make sure you really know what to expect, and why getting these answers can be so hard.
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Questions to Ask Your Doctor About Side Effects of Cancer Treatments
First and foremost, you need to know how much experience your doctor has with this drug. If he or she hasn’t prescribed it much in the past, then the answers to the questions below won’t be as informative as we’d like. Some of these questions rely on your physician’s clinical experience. Another option is to ask if there are any support groups of patients taking the drug that might be willing to talk to you about what it’s like. Aside from reading MedShadow, we recommend checking out patient-reported experiences on AskAPatient.com when your provider recommends a new treatment for you. In addition to any specific questions you have after reading those resources, ask these questions:
1. Have you treated a lot of patients with this medication before? What types of side effects did those patients have?
2. What do we know about the long-term effects of this treatment? Are there side effects that could last after the treatment ends?
3. Do you work with a palliative care specialist? Contrary to popular belief, palliative care is not just end of life care. Many hospitals these days have care teams including a palliative care specialist. This is the ideal person to help you with side effects as you undergo treatment. Their goal is to preserve your quality of life throughout treatment.
4. What will happen if I decide to stop taking this treatment?
5. Are there alternatives with fewer side effects? How effective are they?
Another tip is to check out MedShadow’s reporting on the drug you’ve been prescribed and read real patient experiences on AskAPatient.com.
Some of MedShadow’s Cancer Therapy Articles
The Long Term Side Effects of Chemo
Immunotherapy Side Effects Can Impact More Than Your Immune System
Cancer-Treating Drugs—and Other Drugs Too—Can Be Effective at Lower Doses
Does Every Cancer Patient Need Neulasta?
Innovations in Lung Cancer Treatments
Many Cancer Patients Use Complementary Therapies, But Their Docs Don’t Know
Why You Can’t Trust the Label Alone
In the Undark article, Hillary Andrews, director of regulatory and research partnerships for the Friends of Cancer Research, a nonprofit advocacy organization based in Washington, D.C. explained that what patients really want to know is how a drug will affect them and their lives. Unfortunately, clinical trials are much better at determining how well a drug works than what it’s really like to take it.
The article goes on to explain that diarrhea is only considered a serious safety concern by doctors if it’s severe enough to land you in the hospital for dehydration or malnutrition. But we all know that even mild diarrhea is more than inconvenient. It’s painful and forces you to stay near a bathroom even if it’s not bad enough for the emergency room. The cramping and loss of control makes it nearly impossible to go to work, care for children or show up for a planned social event or exercise.
The US Health and Human Services department has a grading system. that is used to rate the severity of side effects.Each adverse effect, or side effect, that a patient experiences in a clinical trial gets a grade on a scale from one to five. One is the most mild, and five means the side effect was fatal. Typically, a four means you had to be hospitalized, a three means that the effect was serious enough to limit your ability to participate in daily living activities, like showering. (For a more detailed explanation, see our COVID-19 Frequently Asked Questions article)
The problem is that those side effects rated from 1-3 may not seem that severe to clinicians running a trial, but they can be enough for a patient to be seriously suffering. The greater the number of side effects of medication a patient experiences, the more likely he or she is to drop out of a cancer treatment trial, even if the side effects are considered “only” grade one or two, according to a 2023 study.
Stomach problems are some of the most common side effects of medications—they’re common in all types of treatments from chemotherapy to iron supplements. The Undark article points out that doctors consistently under-report both nausea and constipation (among other side effects) that their patients experience by 40.7%-74.4%, according to a 2015 study. That makes it hard to really know how common these side effects are, and how dramatically they might affect your life.
Physicians often described the adverse effects as “manageable” or “tolerable” in studies, experts explained in an excerpt from the Undark article below.
‘For diarrhea to be rated as grade 3, [Bishal Gyawali, an oncologist at Queen’s University in Ontario] noted, a patient must report more than six bowel movements each day — above and beyond their typical bathroom habits.
“Then having that diarrhea for two weeks, three weeks, five weeks — that’s obviously not well-tolerated despite whatever people may claim,” he said.
These words get under [Michelle Tregear’s] skin when she sees them in study publications.
“Manageable. Tolerable. Adverse events. To who? And are you really getting that from the patient?” (Michelle Tegear is chief programs officer at the National Breast Cancer Coalition, a D.C.-based research and lobbying organization.)’
The article ends by pointing to a positive. When patients are open with their doctors, there’s sometimes a middle ground that can be found. Sometimes, if a patient says that he or she cannot tolerate the side effects, there’s room for a doctor to lower the dose or change the regimen to make it more manageable. That way, the individual can still get the treatment needed for cancer, but perhaps manage its side effects more easily.
