Sept. 27, 2023 – When Amanda Hanley was a 21-year-old being treated for Hodgkin’s lymphoma, she met a friend for life.
“Word travels in Rhode Island because Rhode Island is so small. A girl the town over was also in chemotherapy,” said Hanley, now 32. “She and I just got matching tattoos the other week.”
Their friendship has now endured more than decade. Hanley finished active treatment and eventually pursued her dream of becoming a veterinarian. In the interim, she got a therapist, traveled, struggled with alcohol, and endured a week of anxiety before every follow-up oncology appointment.
When she moved back to Rhode Island in 2020 after veterinary school, her chemo buddy told her about the cancer survivorship clinic at Dana-Farber Cancer Institute in Boston, where Hanley was first treated.
“I didn’t even know the survivorship clinic existed until I moved back up here,” Hanley said. “I really like the survivorship clinic because they know your history. It’s a different vibe.”
Getting the word out about cancer survivorship resources is among the challenges the oncology field faces today, as well as innovating to meet the evolving needs of a more diverse population of cancer survivors.
For many types of cancer, treatments have become so effective that the disease is often now viewed as a chronic illness, and not necessarily a death sentence. Some doctors say it’s realistic to envision a day when cancer will be considered similar to conditions like high blood pressure or diabetes.
The time people live after a cancer diagnosis has increased so much that it has significantly impacted life expectancy for the average person in the U.S. Meanwhile, more people under age 50 are being diagnosed with cancer than ever before.
It all adds up to more than 18 million people in the U.S. living as cancer survivors.
Each person has a quilt-like set of factors that tell a personalized cancer story, including age and current life circumstances, treatments, whether the disease is still detectable, and of course type and stage of cancer. There are more than 200 types of cancer.
“It’s a massive group of people,” said Alicia Morgans, MD, MPH, medical director at the Adult Survivorship Program at Dana-Farber.
Everyone diagnosed with cancer is considered a survivor from the day of diagnosis, which is a change from the perspective in the 1970s and 1980s, she said. Decades ago, the top concerns for cancer survivors were increased risk of heart problems or secondary cancers stemming from radiation and some chemotherapies.
“Now we are really thinking more broadly about what’s important to people, including things like sleep and sexual health and psychological support and nutrition,” said Morgans.
Cancer survivors can have lifelong effects from the illness and its treatments, including fatigue, relationship challenges, financial impacts, and problems with mental health, sleep, and fertility.
At Dana-Farber, recent survivorship program innovations include specialized outreach to young cancer survivors, such as those who had testicular cancer or colorectal cancer.
“Young patients can be higher-need and have different areas of emphasis,” Morgans said.
But not every cancer survivor will get a personal phone call well after treatment ends to offer support services. In many cases, the outreach is merely a poster in a cancer center cafeteria or an automated questionnaire sent on a patient portal, with responses then routed for follow-up, depending on how a survivor answers a set of questions.
Cancer survivors need to advocate for themselves about their ongoing needs, said Arif Kamal, MD, chief patient officer at the American Cancer Society and an oncologist at the Duke Cancer Center in Durham, NC.
“Recognize that survivorship care is specialized care that needs a special set of skills and eyes and ears. The experience doesn’t end because chemotherapy is finished,” he said.
Patients should feel the same amount of support and attention after treatment as during the treatment journey itself, Kamal said.
For Hanley, that means having someone skilled in examining her lymph nodes, since her cancer affected the lymphatic system. When she first went to her primary care doctor suspecting a serious illness, her concerns about dramatic weight loss and a lump in her neck were dismissed and linked to recently studying abroad in Costa Rica.
“If I had just listened to my first primary care doctor and done nothing, I would be dead,” said Hanley, whose cancer was stage III at diagnosis.
Seeing a provider such as a nurse practitioner at a survivorship clinic is kind of like have a point person for navigating medical care as a cancer survivor.
“They’re removed from your oncologist, but they are adjacent to them. They are in between your oncology world and your primary care world,” Morgans said. “They can do follow-up for you. They can follow your yearly mammogram, for example.”
“There’s no end date for survivorship,” she said. “You can stay there till you want to move on. You’re not kicked out.”
The level and type of ongoing support that cancer survivors want vary widely, and it’s OK to ask for more or for less, Kamal said.
“There are some patients who say, ‘A once-a-year appointment is fine with me,’ and for other patients, they want to see me once a month to talk about what’s on their mind because for some, they worry,” he said. “The cancer may be gone, but the residual effects of it may still be around, and those are topics worth addressing.”
Connecting survivors with helpful resources is an area that needs more attention in survivorship programming, said researcher Chloe Zimmerman, a medical and doctoral student at Brown University in Providence, RI. She was the lead author of a study published this summer that showed a Chinese mind-body practice called qi gong was similarly successful at treating cancer-related fatigue, compared to a traditional and more strenuous exercise program.
On average, women in the study still had significant levels of fatigue more than 4 years after completing active treatment.
“Right now, the bigger issue is that many oncologists don’t think to recommend a post-treatment program,” Zimmerman said. “Most of our study participants had never even heard that fatigue was a thing they might contend with after treatment, so I think from an education perspective, the more survivor programs that are out there, the better.”