The number of cancer survivors currently in the U.S. is around 15 million. With the rapid advancement of improved treatments and early detection, this number is expected to increase to over 20 million by 2026. I am lucky enough to be one of the survivors, now fourteen years out from my diagnosis of cervical cancer. The life-altering long-term side effects of surgeries, chemotherapy, and radiation are numerous. Unfortunately, these effects are not readily discussed by physicians or patients. Research studies designed to help survivors cope with the long-term and latent side effects of treatment are lagging, leaving many patients to manage their pain, mental health issues, bowel and bladder incontinence, lymphedema, gut issues, and sexual dysfunction on their own. We need new solutions and novel therapeutic approaches, especially for the chronic problems women and men may experience as a result of their cancer treatments. Physicians need to improve their communication skills, and patients need to speak honestly with those to whom they are entrusting their care.
I received the highest quality of care during my illness, but once I no longer needed PET scans every few months, I was considered “well enough” by my oncologists to return to my primary care physician. The oncologists made it clear I needed to learn to live with the radiation and chemotherapy side effects. Shouldn’t I be grateful that I was surviving and beating the odds? Wasn’t that enough? Over the next few years, I realized I was not adequately prepared to deal with a constant leaky bowel and bladder, painful leg swelling, digestive and GI discomfort, and a lack of sexual interest, all of which had become a part of my daily life. The sadness and loss I felt were sometimes overwhelming. Not surprisingly, no health care provider ever suggested I seek mental health counseling.
Sure, the doctors mentioned, almost in passing, that my legs could swell, or I might become incontinent, or if I did not use a dilator my sex life would become nonexistent at the age of fifty. But, at the time, my concern, and I believe this is true for most cancer patients, was staying alive. That was all that mattered to me. Spending another year or two with my husband, living long enough to see weddings and grandchildren. It was all I could think about. What I did not or could not fathom immediately after treatment was how these long-term and latent side effects would worsen my quality of life should I be fortunate enough to live. I assumed that if these things happened to my body, I would find a way to manage.
Working as a medical educator for the past thirty years, I have had the privilege of helping physicians and medical students improve their communication skills. When we teach giving bad news, we try to convey patients often stop listening to what is said after they hear the word cancer. But what about after the diagnosis, or after the treatment stops? One study found that oncologists who treated breast cancer patients were more likely to discuss acute adverse effects like nausea and vomiting but relied on patients to specifically ask about the potential long-term effects or waited until after patients began experiencing symptoms that diminished their quality of life before addressing them. As a medical field, we need to develop protocols and teach communication skills to help physicians talk with patients about the long-term effects of treatment. It is an essential part of providing survivorship care.
A 2017 study summarized what is known about the long-term and latent side effects of several highly prevalent cancers. The authors suggested that primary care physicians and oncologists make themselves aware of the potential adverse effects that can occur in cancer patients to better screen and treat appropriately. However, even if physicians are aware of what can happen, patients may hesitate to raise concerns with their health care provider, thinking they should be silent and grateful for the positive outcome of being alive, or they may simply be too embarrassed to talk about their issues. Vaginal atrophy, erectile dysfunction, and the inability to control your bowels are highly personal and sensitive topics for discussion, even with a doctor. As a result, survivors may suffer in silence and, like me, find a way to manage quietly. It is also a problem because there are few resources and solutions available to patients and providers, and those that exist are risky and/or are effective only for a limited time. While some studies focus on reducing the initial damage caused by radiation treatment, more randomized clinical trials (RCT) comparing treatment options for the long-term and latent side effects of radiation and chemotherapy are desperately needed.
We know chemotherapy may cause patients to lose their hair, but what happens months and years down the road when the chronic effects of treatment manifest and grow worse over time? Certainly, a person’s body image may be negatively impacted. No one can tell by looking at me that I had cervical cancer, or a radical hysterectomy, chemotherapy, and radiation treatments fourteen years ago, but I also recognize I am one of the lucky ones. My hair grew in, my belly scar is nearly faded, and the lymphedema in my left leg is not apparent to the casual observer. Yet I know, even if others do not, when my leg feels heavy and weeps with lymph fluid. Every day I feel self-conscious having to wear the heaviest urinary incontinence pads available and the disposable panties to bed at night, years before I ever thought I would need to. The truth is my quality and quantity of sleep finally took precedence over concerns regarding my contribution to our landfill problem. I once read adult diapers comprise 7 percent of our landfill waste (more than children’s diapers) and that it may take up to 500 years for a disposable diaper to decompose. I know I am fortunate to have minor physical issues. Other survivors are not so lucky.
Until we eradicate cancer, medical research needs to expand its focus to identify the best treatment options for managing the long-term effects of surgery, chemotherapy, and radiation. Health care innovators need to develop better products and solutions to help men and women cope with the long-term effects of cancer treatments with the grace they deserve. Medical educators must do a better job of teaching our physicians and future physicians how to communicate with patients about difficult topics. There is no better time than now.
Sheila Crow is a professor of pediatrics and a medical educator.
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