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As Cancer Treatments Surge Ahead, Need for Survivorship Care Grows

As doctors and medical researchers discover more effective cancer drugs that extend survival and increasingly, turn certain cancers into chronic conditions rather than certain deaths, cancer survivorship care is becoming an increasing focus for patients and doctors in specialties of all kinds.

Attention during last weekend’s American Society of Clinical Oncology meeting focused on studies of treatments that help the immune system battle cancer and approaches known as antibody-drug conjugates that deliver toxic, cancer-killing drugs directly to cancer cells without causing the side effects usually associated with treatment. Two studies presented by Abramson Cancer Center researchers, however, shed light on patients’ experiences as cancer survivors, and provide clues about how health care providers can improve their care for – and communication with – patients as they transition from life as cancer patients to cancer survivors. Their findings provide a road map for the nearly 12 million Americans – 1 in 20 adults -- who have survived some form of cancer.

Testicular cancer, for instance is the most common form of cancer to strike young men -- 8,590 men are diagnosed with it each year in the United States, the majority of whom are younger than 45. Because treatment for the disease is now so successful, the risk of dying from it is today very low: about 1 in 5,000, according to the American Cancer Society. That’s a tremendous success story for the field of cancer care, but it also underscores the need to improve survivorship care, which will be a part of those men’s lives for many decades to come.

One of the new studies presented at ASCO by Penn Medicine faculty detailed how frequently survivors of testicular cancer, who are at an increased risk of cardiovascular problems due to many of the treatments they receive, report behaviors that could further increase their risk of developing those issues later in life. Almost 25 percent of patients surveyed reported current tobacco use, and 35 percent reported "risky" alcohol use like binge drinking episodes of five or more drinks in a sitting. The survivors also reported struggling with their weight: 85 percent of those who participated in the study reported a BMI that would classify them as overweight, and 35 percent of patients fell into the obese range.

The study’s authors, led by Steven C. Palmer, PhD, a research assistant professor of Clinical Psychology in Psychiatry who serves as research director in the LiveSTRONG Living Well After Cancer program in Penn's Abramson Cancer Center, say these findings can help shape efforts to better educate men about the late effects associated with their treatment, and develop and encourage strategies to promote healthy behaviors that will cut their patients’ risks of those problems later in life.

Another study explored the treatment late effects experienced by head and neck cancer survivors – some of which can be major quality of life issues that interfere with patients’ ability to eat, talk, or function at work or at home. Nearly 85 percent of patients, for instance, reported late effects such as difficulty swallowing/speaking, 60 percent said they had decreased neck mobility, and more than half reported concerns regarding cognitive function. Vision problems were also a problem.

Every patient studied had completed a LIVESTRONG Care Plan – which provides cancer survivors with a road map for follow-up screenings and pointers on fertility or financial issues they may face in the future -- via OncoLink, Penn Medicine's online cancer resource, which experts say is an important step following cancer treatment, along with making sure to have a treatment summary detailing all the care they received. But only 55 percent of patients reported discussing the survivorship care plans they created on the site with their healthcare providers, leading the the researchers to worry that many of these symptoms are not being reported or treated. The most commonly reported reasons for patients not sharing their survivorship care plans with healthcare providers were, "I did not think they would care," and "I did not want to upset or anger them." Seven years after the Institute of Medicine released a report detailing the components of cancer survivorship care that all patients should receive, the data shows that there is still a long way to go in bringing patients and providers together to discuss these issues.

"The fact that only about half of patients who create care plans are discussing them with physicians indicates a need for further development of patient counseling and survivorship care so we can deliver higher quality care to cancer survivors of all kinds," says the study’s lead author Christine E. Hill-Kayser, MD, an assistant professor of Radiation Oncology in the Perelman School of Medicine. "Our study indicates that as many as 45 percent of these late effects are going unreported, so it's possible that HNC patients may be at a higher risk for post-treatment side effects than we thought. But without understanding the true incidence of these problems, we can't properly screen for these problems or intervene to help patients when they develop them."

For now, the message to cancer survivors is a basic one: Ask questions, lots of questions, about what you can expect now that you wear the badge of being a cancer survivor. What symptoms that might be related to your treatments should you watch for in the future? (And don’t be afraid to speak up if you encounter them.) What can you do to keep yourself healthy given those risks? When and how should you be monitored for recurrences of your disease? What specialized care, like physical therapy or special exercise training, might you need to get back up to tip-top speed or stave off treatment complications like lymphedema?

To create a LIVESTRONG Care Plan or see more cancer survivorship resources, visit OncoLink or the Abramson Cancer Center’s Living Well After Cancer Program.

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