After 33 rounds of full body radiation and risky surgery to remove the golf ball-sized tumor from the back of his brain, Matthew Zachary, then 21, was released from hospital on the 30th. April 1996, cancer free. and grateful to be alive.
But his relationship with the disease was only just beginning.
In the years to come, he would fight chronic sinus and lung infections resulting from treatments that had suppressed his immune system. He is said to have a stroke at 36, caused by persistent vascular damage from the radiation beam. He would invest tens of thousands of dollars in fertility treatments. Her hair would never grow back. And, with coordination in his impaired left hand, he should 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 me a while to put some meaning back into my life.
More survivors – and more challenges
Zachary is one of 17 million cancer survivors living in the United States today – a number expected to rise to over 22 million by 2030. In many ways, these numbers are encouraging, reflecting advances in detection early and new therapies.
But some survivors are surprised to find fatigue, depression and other side effects that persist long after treatment is finished. Others live long enough to have life-threatening “late effects”, including heart and bone problems, which arise decades later.
Progress has undoubtedly been made since 2006, when the American Institute of Medicine issued a harsh 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 lingering side effects. Yet only 60% say they were given adequate notice of what to expect after treatment, and very few say their health care provider is doing a good job treating them.
“We are breaking out of a system that only existed to treat tumors,” says Catherine Alfano, PhD, longtime survivor advocate and vice president of cancer care management for the Northwell Health Cancer Institute, based At New York. “It is essential that we now orient our care towards a new model that also minimizes collateral damage and maximizes the quality of life of our patients 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 around 70% and 1 in 5 survivors were diagnosed 20 years or more ago.
But these saved lives can come at a cost.
“A common misconception among people is, ‘My cancer is over and I don’t have to think about it anymore’. But unfortunately for a lot of people that’s not the case, ”says Alfano.
Surgeries to remove lymph nodes, which are used to move fluids around the body, can lead to chronic swelling and pain in the arms and legs. Some chemotherapy drugs can numb the extremities, while others impact fertility, sexual function, or cognition. About 1 in 3 people suffer from depression or anxiety.
Then there are the late effects.
Certain medications, like aromatase inhibitors, can thin bones and lead to osteoporosis decades later.
Others can damage the heart, increasing the risk of stroke and heart attack.
And ironically, some treatments can actually cause cancer.
Young women treated for Hodgkin’s lymphoma in their 20s now have breast cancer in their 40s and 50s from radiation therapy to their breasts that affected their breast tissue.
And adult childhood cancer survivors, who tend to be hit hardest by late effects, appear to age faster, with 80% having some sort of chronic health problem in middle age.
“The good news is that they are living longer,” notes Julia Rowland, PhD, who spent 18 years as director of the Office of Cancer Survival at the National Cancer Institute. “But they live long enough to see serious late effects.”
One size does not fit all
Fortunately, treatments have changed dramatically in recent years, with the advent of more individualized and less invasive treatments.
“We recognized that more is not always better in cancer treatment,” says Jennifer Ligibel, MD, medical oncologist at the Dana Farber Cancer Institute in Boston.
In breast cancer in particular, the once standard radical mastectomies, where breast tissue, chest muscles, and all lymph nodes have been removed, are rarely more performed, replaced with tissue-sparing surgeries or no surgery. .
Doctors give less chemotherapy and more targeted beams of radiation. And when drugs that could have serious late effects are prescribed, doctors have learned they may be able to prescribe less, says Ligibel.
At the same time, a host of new drugs, such as immunotherapies, which act on the immune system, have emerged, sparing patients the classic baldness and nausea while providing different and sometimes fewer side effects.
“Previously, we had a handful of chemotherapy drugs and we used them extensively for all types of cancer,” Ligibel explains. “Now the treatments we use are much more focused not only on an individual cancer but on a specific characteristic, such as a genetic mutation. Two people with lung cancer or breast cancer could receive very different treatments. “
For patients, all of this means more choice and, according to patient advocates, the need for more support.
“At the time, the doctor told you what to do and you did. And if you survived the treatment, it was “Congratulations, good life, goodbye,” says Rowland, now senior strategic advisor at the Smith Center for Healing and the Arts in Washington, DC. “We started to realize that we need to think about the long-term well-being of the patient from diagnosis and treatment.”
In some areas this is already happening.
At the Lineberger Comprehensive Cancer Center at the University of North Carolina, each patient is assigned a pivot nurse, helping them stay on course as they weigh options, and a Cancer Transitions program offers advice on nutrition, exercise and stress management after treatment.
Memorial Sloan Kettering offers survival programs especially for those who were treated in their youth. Meanwhile, some medical schools are offering courses for primary care physicians, to help them better understand the challenges that come with survival.
“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,” Alfano says, noting that early physical therapy can prevent a lifetime of mobility problems. , and early psychotherapy could keep depression from getting out of hand.
Patients, united by advocacy groups like the National Coalition for Cancer Survival and Stupid Cancer, which Zachary founded for young adults, have also started to take more control over their care, discussing what will be like. life after treatment even before starting it.
As Rowland recalls, professional cyclist Lance Armstrong – who had testicular cancer at 24 – once refused treatment that would have severely impaired his lung function, choosing another drug instead. And faced with a drug that would have slightly increased his chances of survival, but caused permanent nerve damage in his hands, Zachary, the concert pianist, also chose to refuse.
“I thought it would be nice if I could rehabilitate my hand and find a way to play again someday. 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 healthcare system do more to prepare patients for what’s to come, advise them on options, and provide long-term physical and psychological support.
“We have a patchwork of survivor care, but it depends too much on survivors advocating for their own best care,” says Shelley Fuld Nasso, CEO of the National Cancer Survivors Coalition. “We still, unfortunately, send too many people out into the world and don’t support them.”
For now, Zachary advises: Actively seek help from those who cross him.
“Don’t rely on Google to make your decisions,” he says. “Find your tribe.”
Julia Rowland, PhD, cancer survival expert, suggests ways to optimize quality of life after cancer treatment.
1. Ask questions as you review your treatment plan, especially about potential side effects and other options available.
2. Develop a survivor care plan, specifying any medical and psychological challenges that may arise after treatment and what you and your doctors will do about them.
3. Stay active during and after treatment. Studies show that it can reduce side effects.
4. Take it easy on yourself. If it took you a year from start to finish to complete treatment, it may take a year to get back to full strength.
5. Build a support network, through online and in-person survival groups.
27% – Amount of declining cancer death rates over the past 25 years.
49% – Number of cancer survivors who experience fatigue during or after treatment. Some 19% develop skin problems, 26% have neuropathy, 24% have sexual problems and 13% have cognitive problems.
35% – Number of patients with early breast cancer who have mastectomy today.
41% – Number of young adult cancer survivors who are struggling with serious mental health issues.
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