When Susan Leigh finished treatment for Hodgkin lymphoma in 1972, she says, “no one knew what was going to happen.”

Certainly, no one knew the Arizona woman would develop three more cancers and heart damage, all probably linked to the aggressive radiation and chemotherapy treatments that helped save her life.

Those treatments were new at the time. When Leigh finished them, apparently cancer-free, she was a pioneer.

“I remember saying to my radiation doctor, 'What do I do now?' " says Leigh, 71, a retired cancer nurse. " 'What do I do to keep this from coming back and to recover?'

"He said he really didn’t know. He said maybe I could try taking a good multivitamin pill.”

Four-time cancer survivor pioneers recovery and advocacy Susan Leigh has beaten multiple cancers and heart problems and now champions survivorship care plans for patients and their families. USA TODAY

Four decades later, doctors know much more. They know some cancer survivors are at increased risk for other cancers and for problems ranging from brittle bones to heart failure.

They also know more about how to help patients head off or manage those risks.

Neeraj K. Arora, PhD handout

But few patients get that help – even 13 years after the influential Institute of Medicine warned that many survivors were “lost in transition” and weren't getting adequate follow-up care.

“The number of cancer survivors continues to grow, yet high-quality, coordinated survivorship care is still infrequent,” experts from the National Academies of Sciences, Engineering, and Medicine said in a recent follow-up report (the nonprofit group includes the former Institute of Medicine).

“Strides have been made, but there’s also been an acceleration in the demand,” says Neeraj Arora, associate director for science at the nonprofit Patient-Centered Outcomes Research Institute.

More: Advice for cancer patients: plan on surviving

Arora, a 25-year survivor of non-Hodgkin lymphoma, helped write the report.

Even today, Leigh says, too many people "don't get the kind of follow-up care they need."

"Doctors say, 'You are OK. We don't need to see you anymore.' "

Numbers are growing – so is the need

The American Cancer Society says more than 15.5 million Americans with a history of cancer were alive in 2016. By 2026, the group says, that number will rise to 20.3 million.

The population of survivors is aging. Nearly two-thirds are over 65, meaning most face health challenges beyond those linked to their cancer.

Those older than age 85 are the fastest-growing segment – giving famous survivors such as Supreme Court Justice Ruth Bader Ginsburg, 85, and former President Jimmy Carter, 94, a lot of generational company.

Cancer patients, young and old, are living longer.

“Now, thanks to early detection and better treatment, we have a lot more people living many years beyond their initial diagnosis,” says Catherine Alfano, the cancer society’s vice president for survivorship.

The five-year survival rate for all cancers combined stands at 70 percent for whites and 63 percent for blacks, the society says. That's up from 39 percent for whites and 27 percent for blacks in the 1960s.

People treated in 2019 might do still better. But they also might face unknown long-term risks, even from treatments meant to be less toxic and more targeted than those of the past.

Surviving cancer does not mean leaving health concerns behind.

Cancers can recur. Some survivors face an increased risk of other cancers, sometimes related to their treatment.

Some cancer treatments can damage bones, hearts and other organs in ways that might not show up for decades. Leigh and Arora can attest to that: Both have been diagnosed with congestive heart failure.

Patients can leave initial treatment with symptoms that continue. More than a quarter of patients in one study reported lingering problems such as fatigue, sleep disturbances and foggy thinking.

In another survey, 24 percent of survivors reported poor physical health, and 10 percent reported poor mental health – roughly double the rates for other adults.

Psychologist Julia Rowland led the National Cancer Institute’s Office of Cancer Survivorship for 18 years.

“People are now thinking of cancer survival not just in terms of lifespan but health span,” she says. “There’s a growing recognition that it’s not just the length of life but the quality of life.”

The push for survivorship care plans

Arora, 49, was diagnosed two decades after Leigh. He also left treatment unprepared for his future.

“I got absolutely top-notch treatment. But when I left, after five years, my doctor said, ‘You are good.’ He said, ‘You don’t need to see anybody.’ Which today I know is not the right thing to say. But that’s where the field was then.”

Under changes envisioned by the Institute of Medicine in 2006, patients are supposed to leave initial treatment with two things: a brief written summary that lists all treatments received and a survivorship care plan.

For a breast cancer survivor, the plan might prescribe regular mammograms and an exercise program. It might tell someone who took heart-toxic chemotherapy drugs to watch for cardiac symptoms. Some patients might be urged to keep seeing their cancer care team, often or occasionally; others might be told they face few cancer-related risks and can return to routine care by their regular doctors.

Ideally, advocates say, the plan starts a dialogue among providers, patients and caregivers and tells patients where to seek help with mental health, family matters, jobs and finances.

When 53 top cancer centers were surveyed several years after the initial recommendation, fewer than half were using the plans.

The Commission on Cancer, which accredits cancer centers, started in 2015 to require cancer centers to phase in the plans. Uptake was so slow that the commission altered the standard in 2018 to allow more time for full implementation.

Costs, staffing shortages and inadequate electronic records all slow adoption, the National Academies reports.

Even where care plans have been adopted, their usefulness has not been proved.

“The data is not impressive," Rowland says. One reason, she says, is that “people are treating this not as a conversation but a piece of paper.”

Innovative cancer programs weave survival planning into every phase of care, Alfano says. They seek better ways to use technology to track and guide patients.

But those innovations don't reach enough patients, she says.

Progress for survivors

Leigh says much progress has been made since she became a founding member of the National Coalition for Cancer Survivorship in 1986.

“When we first started this, we were called cancer victims,” she says. “It was a way of looking at it that said you didn’t have any control.”

Today, the survivor community embraces everyone from newly diagnosed patients to the growing cadre of chronic cancer patients who stay on therapies for years.

Some, Leigh notes, reject the label “survivor” for various reasons, including perceptions that it excludes those who will never be cancer-free. Even that debate, she says, is a sign that the movement has matured.

Susan Leigh, 71, of Tucson, Arizona, first had cancer – Hodgkin lymphoma – at age 24. Since then, the retired oncology nurse has had breast, bladder and lung cancer and developed congestive heart failure. David M. Sanders, for USA TODAY

Another sign of progress: Most states at least mention cancer survivors in their official cancer control plans, says Larissa Nekhlyudov, an associate professor of medicine at Harvard Medical School.

It’s not clear what influence state efforts have had, she says. But some states have launched innovative programs, often with funding from the federal Centers for Disease Control and Prevention.

In Kansas, for example, health officials worked with farmer’s markets for seniors to boost fruit and vegetable consumption among survivors. Iowa created educational materials for survivors facing sexual problems. Vermont trained survivors to counsel newly diagnosed patients as part of a program called Kindred Connections.

Volunteer David Cranmer says the program helps the volunteers almost as much as it helps those they counsel.

“We have training sessions with potluck suppers, and people get together and tell their stories,” says Cranmer, 70, of Williston, Vermont.

His own story includes a bone marrow transplant for chronic myeloid leukemia in 1999, followed by thyroid cancer. He’s undergoing long-term chemotherapy for another condition, amyloidosis.

Despite his difficulties, he says, his story offers hope – and plants the idea that cancer patients can and should plan for their futures.

“Most people aren’t thinking five or 10 years from now. They are thinking about today,” he says. “But when I call up and say I’m a 20-year cancer survivor, that turns on a light that oh, there is life after cancer.”