Even in remission, childhood cancer is rarely ‘done.’ A survivor’s building community around ‘long effects.’

This week’s Joy Beat honoree is proof that even in the darkest of times, when life throws you its biggest challenges, there are people who can turn moments of adversity into joy.

Erin Cummings was diagnosed with Hodgkin lymphoma when she was just 15 years old. This type of cancer is the most common among teenagers and young adults. She underwent countless aggressive treatments and surgeries — and, as any cancer survivor can tell you, the consequences of cancer and its treatment last far longer than most people realize. 

Research shows that 95% of people diagnosed with cancer by age 19 develop a significant health problem, whether tied to the cancer itself or the aggressive treatment to eradicate it. But unlike the extensive treatment available for cancer, doctors don’t necessarily have a plan of care for survivors who experience “late effects,” or the long-term side effects as a result of radiation and chemotherapy treatment.

So when Erin Cummings couldn’t find a support group for adults who received treatment for Hodgkin lymphoma as children, she decided to start her own: Hodgkin’s International.

Erin Cummings joined GBH’s All Things Considered host Arun Rath to discuss her organization and how it has helped cancer survivors find community. What follows is a lightly edited transcript.

Arun Rath: First, let’s talk a bit more about why you started Hodgkin’s International when you yourself were a survivor dealing with late effects. Tell us, first off, what it was like for you.

Erin Cummings: Well, it’s something that kind of crept up on me. I had been relatively healthy for a long time after I finished my treatment, but then I began having what we now understand [are] subsequent secondary effects, including things like thyroid cancer and heart disease.

And I found out that I was not alone in this. I really wasn’t prepared to have additional medical problems after I was cured. I thought that once I got done [with treatment], that was it. I found out that, just from speaking with others, really, this was a pretty common occurrence: that many, many Hodgkin’s survivors started having serious medical issues years — sometimes decades — after they finished treatment.

It was, as we found out, due to the kind of treatment that we had as young adults. The radiation and chemotherapy ended up really taking its toll on our bodies. For a good 10 years, I didn’t have any problems post-Hodgkin’s, and I was having a pretty healthy life. I had run my first marathon in Boston, and I didn’t have any reason to be concerned.

The first time that I knew something was wrong, I found out that I had thyroid cancer, and I went to be seen in oncology. I found out that this was not an uncommon secondary effect — secondary cancer, due to the treatment. I had no idea that that was going to happen. In my case, I just had my thyroid removed, and that was it. And then, I did relatively well for a long time after that.

In about 2020, I was back in oncology, and my current oncologist at the time was very concerned about my situation. She suggested to me — which was sort of horrifying at the time — that I might want to consider bilateral prophylactic mastectomies.

I gave it some thought, and I decided that I would opt for that surgery because I really didn’t want to face another cancer. I wanted it to be behind me. And I now know that breast cancer is very common in women who have had radiation to the chest area — not just for Hodgkin’s, but for other cancers, as well.

Rath: That is so much you’re talking about having to face so many years after the initial illness. Was that the point at which you thought that people like you need more resources?

Cummings: Actually, no. It should’ve been! But I should say that, along the way, I did have to deal with infertility. This was something that I had a pretty good idea about early on in the game, that because of the kind of treatment I had — I had whole body radiation, so I was radiated all the way down to my pelvic area.

By the time I opted for my mastectomies, I had been through thyroid cancer, I had been through infertility, you know — things were building up. Even then, I did not think to reach out to others. It wasn’t until a few years later when I was diagnosed with cardiac failure and had to have open-heart surgery, that I thought, “OK, things are piling up here. I can’t be the only one. [It’s] time to see if I can find a fellow survivor to commiserate with.” And there’s a lot of us.

Rath: How do you — I mean, with so much else going on — find the time to organize and build that community?

Cummings: I started out by connecting with a couple of key people. One of them was a woman named Dolly Griffin, and she was kind of the patron saint for many of us long-term survivors. She was someone who would get on these Facebook sites and was just there for everybody. She was super supportive. She never hesitated to offer a virtual hug or some advice, and I knew she was going to be the one that I needed to take things a step further.

So I called her one night, and I said, “I want to have a party. I want to have a reunion of people who have never met in the first place. I am tired of connecting with people online and never getting the chance to meet in person.” And her response was, “I’m in.”

So I flew out to Texas, where she lived, and we put together this organization just from that conversation. We actually were kind of planning the party backward. We wanted to have an event, but we didn’t have a way to do it, so we figured we better get real and get professional and form some kind of a nonprofit so that we could bring these people together. That’s how we started.

It was a lot of work. It was a lot of connecting the dots with others. But we have an enormous group of people who are committed to making life better for long-term cancer survivors — not just Hodgkin’s survivors, but long-term cancer survivors.

One of the things that we can do for each other is say, as I said earlier, “Me too. Me too. You’re not alone. I understand how you feel. I understand how scared you are, I understand how tired you are, and I’m with you all the way.”

That’s what’s going to be so exciting about seeing each other for the first time because, so far, all of that love and support has happened virtually. We’ve never been able to do it in person, and now we will.

Rath: Wow, that must be super exciting!

Cummings: It is! We’ve been working together for, gosh, over eight or nine years now. So to be meeting each other, throwing our arms around each other for the first time — we have folks coming from Great Britain, from California, from all over. These are people who have known each other but, for the most part, have never met.

Rath: I have to imagine there have been many times now where you’ve encountered people who are where you were. What’s that moment like?

Cummings: You know, I think it’s such a relief. It’s like taking a big breath. It’s interesting — I just got an email yesterday from a woman. I believe she’s in Massachusetts. She had seen an article about our conference and contacted me because she was looking for help for her husband, who had been out of Hodgkin’s for 30 years and had had multiple late effects, including heart failure, and was just really struggling emotionally.

All she wanted was for him to be connected with other survivors and possibly a therapist [who] could be there for him while he was going through yet another medical challenge. So I think the need for it is very strong. We need to be able to reach out to others and say, “You’re not alone.” It can make all the difference when you’re faced with one thing after another, and it seems endless.

Hodgkin’s International is hosting its first-ever symposium starting June 7 in Boston.