FINISHING CANCER TREATMENT is a major milestone, but the need for support can remain long after the final round of radiation or chemotherapy. Survivorship care includes screenings and appointments to detect recurrences and reduce future cancer risk as well as ways to manage long-term side effects and physical and mental health following cancer treatment.
But researchers are learning that many people’s needs following their treatment aren’t being met—and they may not even know additional support is available. A recent study found that fewer than a third of head and neck cancer patients knew about survivorship care, although many were experiencing symptoms after treatment that could benefit from that support. In the study, which appeared April 29 in the journal Supportive Care in Cancer, researchers surveyed 317 survivors who had received radiation to treat head and neck cancer between 2013 and 2023. Based on their survey responses, 40% of the survivors still experienced dry mouth and 15% had symptoms indicating depression.
Survivorship care is particularly important for those diagnosed with head and neck cancers because of the intensity of the treatment and the location of the cancer, says Laila Gharzai, a radiation oncologist at Northwestern University in Chicago and an author of the study. Depending on the location of the cancer and the treatment, activities like eating, drinking, talking and even breathing can be difficult during and after treatment, which can affect both physical and mental health.
As part of the survey, Gharzai and her colleagues asked questions about five areas of survivorship care included in the Cancer Survivorship Framework, an approach that has been proposed to support the more than 18 million cancer survivors in the U.S. The framework considers prevention and screening for recurrences and new cancers, physical effects, psychosocial effects, managing chronic conditions, and general health and disease prevention. The head and neck cancer population “is unique in the level of needs, and how difficult it actually is to both go through treatment and to manage everything afterwards,” Gharzai says. “But all of these five domains are relevant to every single cancer patient.”
Survivorship Care Tailored to Patient Needs
For all cancer survivors, “the burden of long-term effects is really dependent on the type of cancer and type of treatment that you had,” says Seth Rotz, a pediatric oncologist at Cleveland Clinic in Ohio who also sees adult survivors of childhood cancers. This means that survivorship care needs to be tailored to the individual experience. Some survivors may experience day-to-day challenges, while others may have fewer quality-of-life changes but may be at greater risk of future health issues, including heart disease and new cancers.
As the years pass, survivors may move, change providers, or want to put their cancers behind them. The primary care physician they see most regularly may not be well-versed in care tailored to cancer survivors following treatment, Rotz says.
Asking for help may be the first step in finding survivorship care.
“There’s a role for survivorship for anybody who’s been treated for cancer,” says Seth Rotz, a pediatric oncologist at Cleveland Clinic in Ohio. But sometimes, health care providers don’t know you need additional support unless you ask.
Rotz suggests looking for ways to provide your primary care physician with more information about your individual cancer and treatment. “For example, a lot of people may not know what type of chemotherapy they got,” he says. To learn more, you can request a treatment summary from your cancer center, which should include the types of treatment you received. “That’s a good starting point,” he says.
If you’re still connected to your cancer center, you can request information about their survivorship clinics or services. Some centers have dedicated survivorship clinics for specific cancers; others have resources for support based on your survivorship needs, ranging from nutritionists to social workers.
If you don’t feel like you have a contact point that can help, cancer societies and patient advocacy groups, including those focused on particular cancer types, often have resources to help identify survivorship clinics and support.
Each person’s needs for survivorship will be different, depending on their cancer, treatments, genetics, lifestyle and other individual factors. The important thing is to find providers who you can talk to about your priorities after cancer treatment. “There’s no one right way to do it,” Rotz says.
At Northwestern Medicine, Gharzai and her colleagues are taking a multipronged approach to improve their patients’ awareness of survivorship care and their ability to access it. They are establishing a head and neck survivorship clinic to better connect patients with the services they need. In addition, the team is planning to conduct a similar survey with survivors of other cancer types to better understand survivorship needs across the cancer spectrum.
They are also incorporating ways to support the five domains of survivorship even earlier in the cancer experience. Alexis Larson, a Northwestern Medicine family nurse practitioner and an author of the Supportive Care in Cancer study, says that more than 70% of patients in the survey reported that their mental health needs were not addressed during their cancer care. “For me personally, that was the biggest takeaway,” says Larson, who now makes a point to discuss mental health at appointments with both those in treatment and survivors coming back for follow-up. Larson and her colleagues are also initiating a mental-health focused clinical trial using app-based cognitive behavioral therapy to address pain management, anxiety and depression in patients.
While most clinicians and patients think of survivorship as something that happens after treatment is done, Gharzai says, “I think the concept of survivorship in general is something that can be introduced at any time point.” Few patients in the survey knew about and could access survivorship care, she says, “To address this, and to ensure patients can get access to the resources they need, we’re interested in introducing the concept of survivorship earlier so that we can empower patients with knowledge and support to help them with optimal survivorship care.”
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