Cancer survivors are growing in numbers, and increasingly, physicians and health systems are accompanying them on their lifelong cancer journey.
As of January 2019, there were 16.9 million cancer survivors in the United States. That’s 5% of the population. The number was projected to increase to 22.2 million, by 2030, and to 26.1 million by 2040. The number of people expected to live five or more years after their cancer diagnosis was projected to increase 33%, to 15.1 million. In 2019, 64% of survivors were age 65 or older, and it was estimated that by 2040, 73% of cancer survivors in the United States would be age 65 or older.
Five-year and 10-year survival rates for those with childhood cancer now exceed 80%. In 2020, there were an estimated 500,000 survivors of childhood cancer in the United States.
It’s all good news. But being a survivor doesn’t mean patients or their healthcare providers can leave cancer behind. Patients with a history of cancer live with the threat of recurrence and late effects of treatment. Both they and their primary care doctors need to keep an eye out for treatment-related effects and cancer-related medical issues and comorbidities, even years after the cancer occurrence.
There are approximately 18 million cancer survivors in the United States, says Lidia Schapira, M.D., FASCO, professor of medicine at Stanford University School of Medicine, and director of Cancer Survivorship at the Stanford Comprehensive Cancer Center and Cancer Institute, Stanford, California. “When you look at it like that, you can see that every healthcare professional – primary care physicians, orthopedists, dermatologists and others – will have cancer survivors in their panel.”
People with a history of cancer can experience impairment in function due to organ loss (i.e., surgical removal) or infiltration with cancer, says Melissa Hudson, M.D., director, Cancer Survivorship Section and co-leader, Cancer Control & Survivorship Program, St. Jude Children’s Research Hospital, Memphis, Tennessee. “Cancer treatment also plays a large role, and toxicities are related to specific modality, dose, and therapy combinations.”
Dr. Hudson is part of The Children’s Oncology Group (COG), a National Cancer Institute-supported clinical trials group, and she is co-author of “Long-term Followup-Care for Childhood, Adolescent, and Young Adult Cancer Survivors,” a September 2021 clinical report from the American Academy of Pediatrics. The report is based on care guidelines developed by the COG.
“Health behaviors and genetics play an important role, and understanding mechanisms that make a survivor more or less vulnerable represent a focus of ongoing research,” she adds. “Comorbid health conditions can increase vulnerability, and social determinants of health – which can determine a survivor’s access to care – can impact outcomes.”
Burden of late effects
In general, cancers that typically require intensive multimodality therapy (e.g., radiation and chemotherapy) carry a higher burden of late effects, says Dr. Hudson. Examples include brain tumor survivors, high risk/advanced stage solid malignancies (e.g., sarcomas), Hodgkin’s lymphoma, and solid and hematological malignancies treated with hematopoietic cell transplantation. “The prevalence of health conditions increases with aging and with increasing time from cancer diagnosis and treatment. Multimorbidity is common.”
In many ways, primary care physicians approach their patients who have had cancer similarly to those who have not, says George Abraham, M.D., MPH,, MACP, FIDSA, president of the American College of Physicians and chief of medicine at Saint Vincent Hospital, Worcester, Massachusetts.
“We watch lipid counts, diabetes risk and risk of infection, much as we do with any of our patients,” says Dr. Abraham, who is professor of medicine at University of Massachusetts T.H. Chan School of Medicine. But there are differences. For example, people with premenopausal breast cancer may be at risk for early heart failure depending on the type of chemotherapy used, and those with a history of breast cancer are strongly encouraged to get annual mammograms. Peripheral neuropathy – numbness of the feet – can be a sign of chemotherapy-induced nerve injury. Similarly, liver dysfunction could be related to radiation-induced lung toxicity.
Promoting overall wellness – e.g., healthy eating, plenty of exercise – is particularly important for patients with a history of cancer, as it can reduce the risk of recurring cancer and secondary infections, says Dr. Abraham. “We are especially mindful of making sure cancer patients give up potential risk factors. Someone who had lung cancer is encouraged not to smoke; someone who had liver cancer shouldn’t drink.”
Adult cancer survivors are especially susceptible to comorbid illnesses, according to the American Cancer Society. People who are treated for cancer, even those treated in childhood, tend to have a higher prevalence of chronic illness later in life. Age-related health conditions appear earlier and with greater severity than might otherwise be expected.
Using 2002-2018 National Health Interview Survey data, among 30,728 cancer survivors, increasing trends were observed in the prevalence of hypertension, diabetes, kidney disease, liver disease and morbid obesity. Cancer survivors with multiple chronic conditions increased from 4.7 million in 2002 to 8.1 million in 2018. The increase was more pronounced among survivors aged 18 to 44 years. Among adults without a cancer history, the prevalence of multiple chronic conditions also increased, but more slowly than among survivors.
The long-term plan
Primary care providers – pediatricians, family practitioners, internists, practitioners trained in internal medicine and pediatrics, and advanced practice providers – are likely to have an increasingly vital role in caring for this rapidly growing population, according to The Childhood Cancer Survivor Study, the largest and most extensively characterized cohort of five-year survivors of childhood cancer in North America. But there are hurdles to jump.
“We consistently hear about long-term consequences of treatment that aren’t well managed by the care team,” says Shelley Fuld Nasso, CEO of the National Coalition for Cancer Survivorship, which conducts an annual cancer survivorship survey.
While receiving treatment, the cancer patient is closely monitored by a team of oncologists, she says. But when treatment ends, patients may feel they’ve been left on their own to deal with the fatigue, depression and anxiety, which are common. That’s not to mention longer-term effects, such as cardiotoxicity or heart damage due to chemotherapy, or monitoring for recurrent or additional primary cancers.
Cancer survivors often need special help during the first year after treatment, she continues. “You may be seeing your care team daily, then you’re told, ‘Your treatment is done; come see us in three months.’ But their lives don’t necessarily go back to the way they were before their diagnosis. Survivors are dealing with collateral damage, and they lack regular support and communication. It’s emotionally challenging.”
Survivorship care plans – which spell out diagnosis, therapy, potential late effects and long-term surveillance guidelines – can help the patient and primary care doctor navigate survivorship. “Part of what we do is empower survivors to be advocates,” she says. “But not everyone can or will be able to advocate for themselves. And they shouldn’t have to. Having a cancer diagnosis is hard enough.”
Advocates for cancer survivors speak of a disconnect between oncology and primary care, with potentially harmful results for the patient.
“I’ll confirm the disconnect, and I’ll confirm it’s not good for the patient,” says Dr. Schapira. Survivorship care plans have been recommended for almost 20 years, but implementation by medical professionals remains uneven, she says.
“The problem is, the early versions of care plans were long, laborious, and not helpful to primary care doctors.” Furthermore, they were paper-based and difficult for care providers to access and share with colleagues. But today, clinical specialists and generalists have access to easy-to-complete forms, such as those available online from the American Society of Clinical Oncology and other groups.
Dr. Abraham says that because large healthcare systems and multispecialty practices share common electronic platforms, secure messaging among providers is more doable today. “There’s less of a disconnect than what we saw with paper-based systems, which relied on dictated notes and passing paper.”
Technology is not the only barrier to effective communication between oncology and primary care, according to experts. Putting together individualized treatment summaries and care plans isn’t easy, says Fuld Nasso. It calls for cooperation among medical oncologists, surgical oncologists, radiological oncologists and others. Nor is there adequate reimbursement for their time spent doing so. “As one expert said, ‘If it were easy, it would be done all the time,’” she says.
What’s more, studies show that patients who have been treated for cancer need more than a piece of paper or PDF to guide themselves and their physicians through long-term care plans. “It’s about communication and discussion,” she says. “It’s helping people use the care plan, share it with physicians, see that it is updated over time, and make sure it remains tailored to the individual.”
“Care planning is a process where individuals involved in the care of the patient anticipate their healthcare needs and surveillance, and make plans to coordinate ongoing care, share responsibilities about education and risk mitigation, and help the survivor gain access to the care they need,” says Dr. Hudson. “Hospitalized patients routinely get a discharge summary upon discharge, but cancer patients don’t necessarily get a survivor care plan. “It just makes good sense that they do.”
Furthermore, the mere existence of a care plan doesn’t mean the survivor or their provider knows what to do with it, she continues. People who were treated for cancer in their youth might have forgotten they even received such a plan. “Years after their treatment, they may develop breast cancer or a heart problem,” she says. “They can request their records, but they don’t need information on what their blood counts were 20 years before. They want a concise plan with all their treatment information.
“At St. Jude, we strive to educate our patients and families about why the care plan is so important. Some people embrace it; others don’t so much. Some of it is cultural, some relates to health literacy. But we need them to understand how their cancer history during childhood can affect long-term health.” Similarly, primary care physicians need to appreciate that they are caring for a cancer survivor who may have unique health risks.
Dr. Schapira’s research has focused on improving communication between patients and physicians. The Stanford team has opened a faculty-embedded primary care practice specifically for cancer survivors and offers a free online CME course on the care of patients with a history of cancer. “It’s a great resource for primary care doctors and nurses,” she says. Last fall, CRC Press published “Essentials of Cancer Survivorship: Guide for Medical Professionals,” edited by Dr. Schapira, for cancer clinicians as well as generalists and specialists who meet cancer survivors in their practices.
“A 25-year-old software engineer, who was treated for leukemia when she was four, moves to Silicon Valley and looks for a primary care doctor. But she is not a typical healthy 25-year-old, and we need her primary care doctor to assess her health risks to make sure she gets good advice and care. A 75-year-old man treated with radiation for early-stage prostate cancer when he was 65 may develop a urethral stricture at age 75 and come to his primary care doctor with symptoms of urinary frequency. A woman treated with radiation to the chest as a college student is at risk for developing breast cancer, and we recommend screening with mammograms and MRIs, if possible, eight to 10 years after treatment. And the cardiac health of someone whose treatment included exposure to cardiotoxic drugs may be affected.”
Cancer survivors need to understand their risks and what they need to do to stay healthy. “If they were treated as a child, they may need to learn enough about the disease and treatment to ‘own’ their history,” says Dr. Schapira. Similarly, primary care doctors need to understand the protocol those patients underwent years before and how the exposures to cancer treatments can affect the health of the patients in their office.
“It’s about co-managing,” she says. “How can we include the patient in their continuing health in a way that is empowering but not overly burdensome?” Several organizations and associations, including the National Coalition for Cancer Survivorship, have developed care guidelines for patients and primary care physicians. “The whole idea is to become more proactive with these tools.”