After 33 rounds of full-body radiation and a risky surgery to remove the golf ball-sized tumor from the back of his brain, then-21-year-old Matthew Zachary walked out of the hospital on April 30, 1996, cancer-free and grateful to be alive.
But his relationship with the disease had only just begun.
In the coming years, he would struggle with chronic sinus and lung infections resulting from treatments that had wiped out his immune system. He’d have a stroke at age 36, brought on by lingering vascular damage from the radiation beam. He would invest tens of thousands of dollars in fertility treatments. His hair would never grow back. And, with coordination in his left hand impaired, he’d have to put aside his college dreams of being a professional pianist and reinvent himself.
“All things considered, these are good problems to have,” says Zachary, 46, now a successful podcast host and proud father of 10-year-old twins. “But there was a lot of grief and loss. It took a while for me to make sense of my life again.”
More Survivors — And More Challenges
Zachary is among the 17 million cancer survivors living in the United States today — a number projected to reach more than 22 million by 2030. In many respects, those numbers are encouraging, reflecting strides in early detection and new therapies.
But some survivors are surprised to discover fatigue, depression, and other side effects lingering long after treatment is over. Others live long enough to have life-threatening “late effects,” including heart and bone problems, which pop up decades later.
Strides have undoubtedly been made since 2006, when the U.S. Institute of Medicine issued a stern report calling for more long-term support for survivors.
But there is still work to be done, according to a July 2020 survey by the National Coalition for Cancer Survivorship.
About half of cancer survivors say they are concerned about ongoing side effects. Yet only 60% say they were adequately warned about what to expect post-treatment, and very few say their health care provider is doing a good job addressing them.
“We are emerging out of a system that existed only to treat the tumors,” says Catherine Alfano, PhD, a longtime survivor advocate and vice president of cancer care management for New York-based Northwell Health Cancer Institute. “It is essential that we now pivot our care to a new model that also minimizes collateral damage and maximizes our patients’ quality of life over the long term. We are not doing enough.”
When President Richard Nixon declared “war on cancer” in 1971, the average five-year survival rate for all cancers hovered around 50%. Today, that rate is roughly 70% and 1 in 5 survivors were diagnosed 20 or more years ago.
But those saved lives can come at a cost.
“One common misconception people have is: ‘My cancer is over and done and I don’t have to think about that anymore.’ But unfortunately, for many people, that is not the case,” Alfano says.
Surgeries to remove lymph nodes, which serve to move fluids around the body, can lead to chronic swelling and pain in the arms and legs. Some chemotherapies can leave extremities numb, while others impact fertility, sexual function, or cognition. About 1 in 3 people have depression or anxiety.
Then, there are the late effects.
Some drugs, like aromatase inhibitors, can thin bones and lead to osteoporosis decades later.
And ironically, some treatments can actually cause cancer.
And adult survivors of childhood cancers, who tend to be hit hardest by late effects, appear to be aging faster, with 80% having some sort of chronic health condition by middle age.
“The good news is they are living longer,” notes Julia Rowland, PhD, who spent 18 years as director of the National Cancer Institute’s Office of Cancer Survivorship. “But they are living long enough to see serious late effects.”
One Size Does Not Fit All
Fortunately, treatments have changed radically in recent years, with the advent of more individualized, less invasive treatments.
“We have recognized that more is not always better when it comes to cancer treatment,” says Jennifer Ligibel, MD, a medical oncologist at the Dana Farber Cancer Institute in Boston.
In breast cancer specifically, once-standard radical mastectomies, where the breast tissue, chest muscles, and all lymph nodes were removed, are seldom done anymore, replaced by tissue-sparing surgeries or no surgery at all.
Physicians are administering less chemotherapy and more-targeted beams of radiation. And when drugs that may cause serious late effects are prescribed, doctors have learned they may be able to prescribe less of them, Ligibel says.
Meanwhile, a host of new drugs, such as immunotherapies, which act on the immune system, have emerged, sparing patients the classic hair loss and nausea while bringing different and sometimes fewer side effects.
“It used to be that we had a handful of chemotherapy drugs and we used them broadly across cancer types,” Ligibel says. “Now, the treatments we are using are much more precisely focused not only on an individual cancer but on the specific characteristic, such as a genetic mutation. Two people with lung cancer or breast cancer could receive very different treatments.”
For patients, all this means more choices and, patient advocates say, the need for more support.
“Back in the day, the doctor told you what to do and you did it. And if you survived the treatment it was, ‘Congratulations, have a good life, goodbye’,” says Rowland, now senior strategic advisor for the Smith Center for Healing and the Arts in Washington, DC. “We’ve begun to realize we need to be thinking, from the time of diagnosis and treatment, about the patient’s long-term well-being.”
In some areas, it’s already happening.
At the University of North Carolina Lineberger Comprehensive Cancer Center, a nurse navigator is assigned to each patient, helping to usher them through treatment as they weigh options, and a Cancer Transitions program offers nutrition, exercise, and stress management advice after treatment.
Memorial Sloan Kettering offers survivorship programs specifically for those who had treatment in their youth. Meanwhile, some medical schools offer classes for primary care physicians, to help them better understand the challenges that come with survivorship.
“With just about all of these chronic and late effects, there are treatments that can help if we get the patient to the right clinician in a timely manner,” says Alfano, noting that physical therapy early on can prevent a lifetime of mobility problems, and early psychotherapy could prevent depression from spiraling out of control.
Patients, united by advocacy groups like the National Coalition for Cancer Survivorship and Stupid Cancer, which Zachary founded for young adults, have also begun to take more control over their care, discussing what life will be like after treatment before they even begin it.
As Rowland recalls, professional cyclist Lance Armstrong — who had testicular cancer at age 24 — once declined a treatment that would have severely impaired his lung function, choosing a different drug instead. And when faced with a drug that would have boosted his chance of survival very slightly but caused permanent nerve damage in his hands, Zachary, the concert pianist, also opted to decline.
“I thought it would be nice if I could rehabilitate my hand and find a way to play again one day. I didn’t want to take a drug that would cripple that possibility.”
He is, indeed, playing again.
But he and others would still like to see the health care system do more to prepare patients for what’s to come, advise them of options, and support them physically and psychologically long term.
“We have a patchwork of survivorship care, but it is too reliant on survivors advocating for their own best care,” says National Coalition of Cancer Survivors CEO Shelley Fuld Nasso. “We are still, unfortunately sending too many people off into the world and not supporting them.”
For now, Zachary advises: Actively seek out help from those going through it.
“Don’t rely on Google to make your decisions,” he says. “Find your tribe.”
Cancer survivorship expert Julia Rowland, PhD, suggests ways to optimize quality of life after cancer treatment.
1. Ask questions as you go over your treatment plan, especially about potential side effects and alternative options available.
2. Craft a survivorship care plan, spelling out the medical and psychological challenges that may come up post-treatment and what you and your doctors will do to address them.
3. Stay active during and after treatment. Studies show this can reduce side effects.
4. Go easy on yourself. If it took you a year start to finish to complete treatment, it may take a year to get back to full speed.
5. Establish a support network, via online and in-person survivorship groups.
By the Numbers
27% — Amount by which death rates from cancer have fallen in the last 25 years.
49% — Amount of cancer survivors who have fatigue during or after treatment. Some 19% develop skin problems, 26% have neuropathy, 24% have sexual concerns, and 13% have cognitive problems.
35% — Amount of early-stage breast cancer patients who have a mastectomy today.
41% — Amount of young adult survivors of cancer who struggle with serious mental health issues.
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