This church woman beat cancer when she was a teenager. His fight had only just begun.

About 50 years have passed since Erin Cummings beat cancer as a high school student.

It was a victory worth celebrating. But little did Cummings know that his teenage bout with Hodgkin's lymphoma, one of the most common cancers among adolescents and young adults, would mark only the first cycle in a lifelong spiral of health problems. a lifetime, including several more waves of cancer.

The source, Cummings said, was the aggressive cancer treatments she received after her diagnosis at age 15.

“Someone says, 'You are healed.' In fact, for many survivors, it’s the start of a whole other journey,” she said.

Today, Cummings is co-founder of Hodgkin's International, a Massachusetts-based nonprofit that raises awareness about the long-term impacts, called late effects, that cancer treatments can have on some survivors.

“We often have this approach of celebrating cancer survivorship. You survived and can return to your normal life,” said Dr. Larissa Nekhlyudov, a physician at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute in Boston. “But many of these patients who survive Hodgkin's disease will have problems for decades and decades and decades.”

Cummings, of Martha's Vineyard, is currently preparing for Hodgkin's International to host a conference June 7-8 in Boston, bringing together dozens of childhood cancer survivors from around the world with medical professionals to discuss their struggles with the effects late stages of cancer treatment.

After his diagnosis in 1972, Cummings underwent radiation and chemotherapy treatments during his sophomore, junior and senior years of high school. However, she did not consider herself a “sick child”.

“I was back in the game, I was going to school, I was a cheerleader,” she said. “It was horrible. I had cancer, but I also had a pretty normal adolescence.

The first sign of lasting problems appeared in my mid-20s. Cummings and her husband wanted children but had difficulty conceiving.

That wouldn't be possible, they learned, because of the radiation treatments Cummings received on much of his upper body.

Thyroid cancer appeared when Cummings was 31 years old. His thyroid was removed.

“After that, I did pretty well for a long time,” Cummings said. “I started doing marathons. We adopted four children. I was busy.”

But other complications followed, ranging from heart problems to skin cancer.

On a doctor's recommendation, Cummings chose to have a double mastectomy, avoiding the risks of breast cancer. She showed signs of heart failure and underwent open heart surgery in 2004, followed by further heart procedures as other problems emerged. In 2007, she underwent lung surgery to treat a set of suspicious nodules.

Today, “I’m doing great,” Cummings said. ” I had problems. I am lucky to have been able to come back from each of them. I am fortunate to have access to excellent health care.

Still, she knows there could be trouble on the horizon.

More than 15,000 children are diagnosed with cancer each year in the United States, according to a recent study published in the Journal of the American Medical Association. There are half a million childhood cancer survivors in the United States

By the age of 45, 95% will develop another significant health problem related to the disease or its treatment.

Most often, these conditions are caused by radiation or chemotherapies used to treat cancer, the study authors wrote.

They found a need for clinicians and cancer patients to be better aware of complications that can arise long after treatment and with possibly little predictability.

“For many patients with Hodgkin's lymphoma, it's not over for them,” said Nekhlyudov, a primary care physician at Brigham and Women's and a cancer survivorship physician at Dana-Farber.

“They had cancer when they were 16 and they were cured,” she said. “But they could have breast cancer, thyroid cancer, heart or lung disease, they could be at risk of infections as a result of their cancer treatment.”

Cummings co-founded Hodgkin's International in 2016 with Dolly Griffin, a friend she met through an online support community for cancer survivors, where Cummings said she realized how many others shared her devastating experience with the late effects of cancer. early-life cancer treatments.

She suggested to Griffin that they organize a reunion of sorts – a gathering of the many other survivors they met online.

“Some of us have known each other for 10 years or more, but very few of us have met in person,” Cummings said. “We are geographically distributed throughout the country. Most of us have had serious health problems over the years.

His initial hope was to gather a group of survivors. She and Griffin did not initially intend to start an advocacy organization, but found it necessary to publicize their struggles with the late effects of cancer treatment.

The idea for a meeting led to the June conference, which will feature speakers from the Dana-Farber Cancer Institute in Boston, the National Cancer Institute, the Duke Cancer Institute in North Carolina and other organizations.

When the survivors finally come together, with participants from as far away as Britain and France, it will be “a reason to rejoice,” Cummings said. “But it’s definitely also bittersweet.”

Griffin died of breast cancer in 2016, Cummings said. Several other key members of Hodgkin's International also did not live to see the conference come to fruition.

“We have lost so many people in recent years,” she said. “It’s a tough pill to swallow while still being excited to finally be able to throw my arms around everyone.”

Cummings notes that despite its name, Hodgkin's International is not exclusive to people with Hodgkin's lymphoma, but rather advocates for all long-term cancer survivors.

She believes all cancer patients need to know, upon diagnosis, what they might face years from now.

This will help them prepare to keep their medical records and know the precise details of the treatment they received, “so when symptoms appear, they will have what they need to deal with them,” he said. she declared.

“No one talked to us about this stuff when we were going through it,” Cummings continued. “We learned about things like heart disease when we had heart problems. We want to educate people from the beginning. Unfortunately, this is part of cancer.