The number of cancer survivors is growing.
And they’re living longer.
While advances in diagnosis and treatment are speeding along, we have a lot of catching up to do when it comes to survivorship.
Whether in remission, or “cancer-free,” or living with disease for which treatment will continue indefinitely, survivors face a myriad of long-term effects.
These issues aren’t limited to physical side effects.
Cancer survivors often face a lifetime of psychological, social, and economic fallout.
Yet, there isn’t much research on these problems or how to address them, according to the United Kingdom’s National Cancer Research Institute (NCRI).
New research presented at the 2018 Cancer NCRI Conference proposes a set of priorities that could be aimed at addressing the long-term consequences of cancer.
“There are not enough researchers studying these issues and there’s very little funding currently available for this work,” said NCRI’s Dr. Feng Li in a press release.
“This is an enormous gap in our knowledge and it’s one that can only begin to be filled if we have a starting point. We’ve looked at cancer research in the U.K., but the situation is similar around the world,” she continued.
With help from patients, caregivers, and professionals, the NCRI spent two years determining areas of research that should take priority.
These priorities focus on managing long-term and late effects of cancer and cancer treatment.
These include researching the best ways to educate patients and families, coordination of care, and lifestyle changes that can improve overall health and quality of life.
In the United States, there were about 15.5 million cancer survivors in 2016. By 2026, that number is expected to grow to 20.3 million.
Access to healthcare services differs in the United States, depending on where you live and what type of insurance you have, if any.
There’s also great variation in survivors’ experiences.
Finding help where a person lives may be even more difficult for people with rare cancers, according to registered nurse Karen Selby.
From her home in Florida, Selby spends her days helping cancer patients from all around the country.
As a patient advocate at the Mesothelioma Center, she knows well the struggles of those living with rare, incurable cancers.
One of the effects of cancer treatment is that it can raise your risk of other cancers.
Selby recently spoke to a woman who survived breast cancer.
“She has scarring on the lung and is now at risk for lung cancer because of the radiation she had for breast cancer,” she told Healthline.
A common problem among those in her mesothelioma group is the daily struggle to breathe, something that affects every aspect of life.
Roberta Luna has been living with pancreatic cancer for 16 years.
She’s the Pancreatic Cancer Action Network’s (PanCAN) community engagement chair for the Orange County, California, affiliate of volunteers.
Luna lost both parents, a grandmother, and an uncle to the disease.
Things have changed since her father was diagnosed with pancreatic cancer in 1998. He survived only two weeks.
“I’m still fighting the disease,” Luna told Healthline. “I’ve been on chemo for 16 years.”
All that chemo has resulted in serious kidney and heart problems.
“Having pancreatic cancer is scary, but when I learned my heart was affected, it got even scarier,” she said.
Luna also deals with neuropathy of the hands, which makes it difficult and sometimes dangerous to do something as simple as preparing a meal.
She lives with near-constant nausea, tiredness, and the memory loss and confusion of “chemo brain.”
Luna gets through her days by breaking things down into manageable chunks.
Dr. Anthony Perre is chief of the Division of Outpatient Medicine at Cancer Treatment Centers of America (CTCA) in Philadelphia.
He noted that cognitive dysfunction due to chemotherapy is common. So is fatigue.
“This often extends for years after treatment. You think you’re done and you should be back to normal, but you’re not. It can profoundly affect perspective,” Perre told Healthline.