Medical professionals are ramping up programs to help cancer survivors deal with the emotional, physical, and financial aftermath.
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.
Identifying problem areas
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.
Life-altering physical side effects
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.
Emotional and mental health
Just going in for a scan can raise the stress level.
Luna sometimes waits three or four days to get test results.
“You go through a weekend not knowing. It’s very difficult to put yourself in a different frame of mind and enjoy what you’re doing. It changes your life,” she said.
In her work with PanCAN, she speaks with loved ones of people who died of pancreatic cancer.
Survivor’s guilt, said Luna, is real.
Meanwhile, her husband, Vic, lives with another kind of guilt.
“I can fix just about anything. I feel guilty because there’s nothing I can do to correct this,” he told Healthline.
Perre, a Hodgkin lymphoma survivor, remembers how it feels to learn you have cancer.
“At the time, I was overwhelmed,” said Perre. “So, when I meet with patients, I certainly understand the fear.”
“People will often wall themselves off and don’t accept help. It’s important to be able to receive help. One thing you realize quickly is that just because you’re done treatment, it doesn’t mean everything will go back to the way it was before. There are a host of things to be addressed,” he explained.
The weight of all the “what ifs” take a toll, said Selby, noting these stressors also affect family members.
“What if it comes back? When will it come back? You’re always dealing with that anxiety. That stress can cause an endless amount of other problems,” she said.
Selby explained that some survivors don’t want to admit to the psychosocial aspect of cancer. They want to be strong.
“Mental health is the secret disease no one wants to talk about, but it can happen with a diagnosis of cancer,” she continued.
Employment and financial issues can present big problems.
“I was just researching options for a one-year survivor who is now in remission,” said Selby.
“But he doesn’t know how he’s doing because he can’t afford follow-up studies or get a job. He may lose his home. It’s one of the many things survivors and caregivers in our mesothelioma support group talk about. It comes up in every call. These are the consequences that occur from surviving cancer.”
Financial strain can also add to survivor’s guilt, according to Luna.
“Insurance doesn’t cover everything. These medications are very expensive. Some patients have to decide if they should do chemo or put their kid through school,” she said.
Luna wants to see an issue with insurers addressed.
“Often the person making the decision is a layperson, not a doctor, and they’re in a position to deny treatment. We need to get more awareness of that out there,” she said.
Survivorship care plan
Cancer survivors can get lost in transition, said Perre.
There’s a gap between the medical oncologist and going back to the primary care physician.
CTCA provides patients with a survivorship care plan that includes a treatment summary and information on maintenance medications, which can continue for years.
They also include a follow-up plan with information on scans, blood tests, and screening for other cancers. They also include diet, exercise, and other preventive information.
During visits with patients, issues such as anxiety, depression, and financial distress are discussed.
“There are effective treatments and they’re not all pharmacological-based,” said Perre.
One of the most important things you can do to prevent cancer and reduce the risk of recurrence is to exercise, he said.
“We’re playing for the long term.”
The way forward
Perre said that cancer survivorship plans are a relatively new thing, but there’s a major need for them.
“Some barriers haven’t been recognized, especially by payers,” he explained. “That being said, my advice is to be seen by a medical oncologist and go back to your primary care physician. Ask questions if you’re suffering from the consequences of treatment. Ask questions about things that are tough to talk about. Be your own advocate and get a game plan.”
Perre said there should be coordination of care between the oncologist and the primary care physician.
“Education is important. For patients who have completed treatment for cancer, life doesn’t just go back to normal at the snap of a finger. People continue to have issues related to cancer. A comprehensive, integrative model looks to encompass the best attributes of medical oncology and primary care — that’s the model we should be looking toward,” he said.
Luna urges cancer patients to seek out clinical trials.
“Clinical trials should not be a last-ditch effort. It should be first,” she said.
She’s also grateful for groups like PanCAN, which she calls a “one-stop shop” for research, advocacy, and clinical trial information.
“They’ve been there for me,” she said.
“We try to make every day last a lifetime,” said her husband.
“If we can do something to change this hideous disease, we want to be right up front. Not for ourselves, but for those people who haven’t yet experienced it. We’re seeing strides. Somebody will benefit from what we’re going through,” he said.