Deb Mento started to experience health issues that she couldn’t fully explain or trace to a certain cause.
She was surprised to learn she was suffering from late-term effects from chemotherapy she had 30 years earlier.
There were an estimated 15.5 million cancer survivors living in the U.S. in 2016. Although cancer rates are rising in New Jersey, more people are beating the disease, leaving a large population of residents figuring out how to cope with late-term effects and outcomes as they age.
“You feel like you’re going crazy because your body is doing this, but people are saying it’s other things,” Mento said. “You’re continuously on this roller coaster, but when you talk to other survivors, you realize you’re all in the same boat.”
Dr. Jill Ginsberg, pediatric oncologist and director of the Cancer Survivorship Program at Children’s Hospital of Philadelphia, said survivors are more at risk of developing things such as heart conditions, second cancers, infertility, impaired immune systems and other issues years or decades after chemotherapy or radiation treatment.
Mento, of Hammonton, soon realized her immune system-related health issues were most likely connected to che motherapy she got at 24 years old for Hodgkin’s lymphoma.
Not able to find much information about local survivor resources at the time, Mento got a treatment plan through Memorial Sloan Kettering’s survivorship program, which tracks current and former patients and conducts studies on long-term outcomes.
In many cases, former cancer patients no longer see an oncologist and therefore must rely on their primary doctors, not all of whom are informed of the many late-term effects on survivors.
“I think people look forward to say that they are no longer going to their oncologist anymore, but then their primary doctor doesn’t know much about what they went through,” Mento said.
Members of Gilda’s Club South Jersey came together in 2009 to create the Cancer Survivorship After-Care Plan, which helps patients maintain their survivorship by keeping exact records of their treatments, tests and quality of health as they age.
Shelley Safer, 62, of Margate, said her after-care records will help inform any future doctors of the chemotherapy and radiation treatment she had 18 years ago for breast cancer.
“The survivorship part is all about the quality,” she said. “The extra support classes and gym memberships health centers provide for survivors are great, but this follow up, it’s a different ball game.”
Scientists and researchers continuously study cancer-therapy side effects in order to improve treatment and success rates while minimizing the damage they do to healthy tissues, organs and systems.
It’s why Ginsberg’s predecessor, Dr. Anne Meadows, argued years ago to decrease radiation treatments in child leukemia patients as studies showed some children developed cognitive and learning difficulties after treatment.
“Our job is twofold,” Ginsberg said. “It’s to watch and treat kids while they are kids and to make sure that when they leave pediatrics, they know their history and can advocate for themselves. And as new (treatment) modalities develop, it’s imperative to follow those patients afterward.”
Proton therapy, a form of radiation, is one of those newer modalities. The therapy aims to give radiation treatment to adults and children more exactly to the cancer site, thus reducing the damage to healthy cells.
Dr. Christine Hill-Kayser, assistant professor of radiation oncology at Penn Medicine, said children and teenagers are still growing during their cancer treatments, the impacts of which may show up much later in life.
Mento and Safer said there needs to be more education and programs in local communities, not just at large city hospitals. Despite the resources out there, they said if cancer survivors want to succeed, they have to be their own biggest advocate.
“When I went to the survivorship program, I learned about things that I wouldn’t have known had I not gone,” Mento said. “Every hospital and center that provides cancer treatment should have optimal care for after treatment. Otherwise, you’re leaving people without a maintenance plan.”