I recently attended a reception in San Francisco for a cancer advocacy group and I was struck by a particular story one of the speakers told as part of the evening’s events. Generally, patient stories are an effective way to communicate both the heartwarming examples of our progress in cancer care, and the heart-wrenching tales of how far we still have to go. However, this particular anecdote spoke to an issue I knew little about: the long-term effects of chemotherapy and the health issues that can arise after cancer for many patients.
“There’s an 18-year-old kid in the hospital right now with congestive heart failure as a result of the chemotherapy he had as a child,” the speaker said. “Congestive heart failure isn’t something a teenager should be experiencing.”
It most certainly isn’t.
While chemo can be an effective tool in the killing of cancer cells, it often kills the healthy cells and tissue in our bodies just as effectively. With more people surviving cancer than ever before, researchers are only now beginning to understand the long-term effects that chemotherapy can have on our organs and systems, including the immune system. As a result, cancer survivors often end up more susceptible to infections and viruses, spending more time in the hospital and incurring more health care costs as a result.
It’s not just the immune system, however. The heart and cardiovascular system are also greatly affected by chemotherapy , which can often lead to heart disease and congestive heart failure-even in teenagers.
As someone familiar with the issues that plague health care, my mind immediately imagined a scenario where a young, seemingly-healthy male walks into an ER complaining of chest pain, and the doctor on duty-without access to his complete health history-discounts the possibility of congestive heart failure because of his age. I brought up the potential scenario with the speaker later that evening.
“Unless you knew he had received chemo at a young age because of his cancer, I don’t think many doctors would be looking for heart failure in that situation,” he said. “You would need to know that he had leukemia as a child.”
“Late effects,” as I learned they’re called, can also include thyroid problems, hearing loss, blurred vision, dental issues, and loss of fertility. But the nature of these effects and their subsequent treatment can depend on the type of cancer the person had, where the cancer was located in the body, the type and dose of the chemo, and the age and general health of the person at the time. Unless a doctor knows the extensive health history of a cancer patient complaining about one of these symptoms, he or she may not understand the origin of the problem and therefore how to properly treat it.
For this reason alone, cancer patients dealing with the long-term effects of chemotherapy need the ability to easily share their complete health history with their doctor. We talk about access to health data being vital to current cancer patients as they advocate for their care (for example, seeking second opinions, coordinating with caregivers, and enrolling in clinical trials), but I was personally unaware of just how important this information can be for cancer survivors as well.
Originally published at https://blog.ciitizen.com on September 27, 2018.