As my “Critical Cardiac Considerations” article mentions, a good majority of children diagnosed with cancer will be cured, children including teens and young adults up to age 21. However, because research on adult childhood-cancer survivors, of which I am one, has shown that some cancer-curing treatments can damage the heart and/or cause other problems that affect long-term survival, doctors have modified treatment protocols. They’ve also put in place guidelines for monitoring patients throughout their treatment, and for follow-up care, hopefully upping the chances of improved long-term outcomes. My cancer story may be a case study of What is No Longer Done, but it got me here today just the same, and I hope it encourages other survivors to not just fight their cancer battle, but to follow through with their after-treatment plan.
When I was diagnosed with “Hodgkin’s Disease,” aka Hodgkin’s Lymphoma (HL), at age 18 in 1982, my doctor said it would be an “inconvenience,” but I’d get better. He said although my cancer was the type that spread fast, it was the type that responded well to treatment. I took his advice and dropped out of my second semester at Suffolk University in Boston. At first I didn’t believe I’d need to, but in the end I was glad I did.
I underwent a staging operation involving a splenectomy. After healing from that, I completed radiation treatments, five days a week for six weeks. Nowadays, PET or PET-CT scans stage HL, a good thing because the spleen is an important player in the immune system. Its removal makes the body susceptible to life-threatening infections, which I’d been told about early on but found out through personal experience 34 years after the procedure.
Radiation fried my throat and skin, and at times “radiation sickness” had me vomiting to the point where I thought I’d never stop–no anti-nausea medication could nix it. At one point, my neck was burnt black, and my throat hurt so badly, I couldn’t swallow my own saliva. My radiologist had told me he upped the dose–“megadose” was the term he used–because the initial, lower dose wasn’t working. At least a third, maybe half, of my hair fell out, in the back of my head. (It eventually grew back, but it’s thin at the nape.)
In 2015, a hematologist-oncologist looked at my record and commented on all the radiation I got: “We don’t do that anymore,” he said. “We’ve found radiation to be more toxic than chemo.” Whatever damage radiation wreaked on my body, the treatments cured my cancer, allowing me to experience a fruitful, happy life. (Note, I cite reports in my long-term-effects article that say radiation worsens the cardiotoxic effects of anthracycline, a type of chemo that can be cardiotoxic on its own.)
Having finished my radiation treatments in May of 1982, at age 19, I began nursing school that fall and put the whole cancer thing behind me. However, I’d return to Boston for follow-up visits, at Dana Farber‘s Jimmy Fund Clinic, and then the facility’s David B. Perini Survivorship Clinic. Years later, my attending physician would oversee my follow-up care at Brigham and Women’s Hospital, which works with Dana Farber. (2024 update: I’m currently followed at Dana Farber’s adult survivorship clinic. Similar to my experience at the Perini Clinic, the doctor there specializes in survivors like me, thus is in tune with issues I deal with as a survivor. In fact, she told me about Hodgkin’s International, an organization that aims to call attention to the late effects of HL treatment.)
Off and on throughout my post-cancer years, I’ve participated in a variety of studies. One examined late cardiac effects in HL survivors who’d received radiation to the chest area. Getting irradiated in the chest meant my heart had been in the line of fire despite “blocks” that were put into the machine to protect my vital organs. That study, which took place in the early 2000s, ended up being a godsend because it’s how I met Dr. Ming Hui Chen, a cardiologist and researcher. Years later, when, for the first time, I felt as though my health and quality of life was deteriorating, she identified what other doctor’s missed, that I had heart failure related to the chest radiation I’d received as a teen. Her devotion to research and her genuine concern for yours truly, not to mention her impeccable attention to detail, gave me back the life I’d enjoyed and appreciated so much prior to the proverbial “bump in the road” I’d been experiencing.
I’ve mostly had a very good, often excellent, quality of life these past 38 years. I worked eight years as an RN, mainly in emergency but also in critical care. I married, gave birth to two daughters, and I used to be an avid recreational figure skater. This summer, I completed my coursework for a BA in English. All of these years may have been wonderful, but they weren’t complication-free.
It’s hard to say how many of my post-cancer medical issues were caused by my radiation treatments. They surely caused me to have less of the lung capacity women my age tend to have. And no doubt the nuclear blasts that cured my cancer burned my thyroid, first leading to hypothyroidism, then benign tumors that “could turn cancerous,” which is why I eventually had a total thyroidectomy. But because researchers have figured out how to avoid some of these “late effects,” today’s young person diagnosed with HL will likely be on a chemo protocol that won’t wreak the same or worse havoc radiation wreaked on my body, or that anthracycline, sometimes in combination with radiation, unleashed on other kids’ bodies, cutting short their lives despite their surviving cancer.
I’ll always have a little more trouble than the average person my age walking uphill and upstairs, thanks to radiation-induced heart and lung damage. But I still enjoy walks, 2-3 miles several times a week. Radiation also put me at a higher risk for breast cancer; therefore, I get screened biannually. A wonderful doctor from Dana Farber made sure that happened, by arguing with my insurance company, citing research, she told me.
My body fought a war, and I’ve had no choice but to live in the aftermath. Hopefully, many childhood-cancer survivors will be at less risk of late effects because of treatment modifications and diligent monitoring during therapy. But even if treatments heighten a patient’s risk for other health issues in the future, a cure is a cure–especially when you’re still a child, teen, or young adult with years of dreams left to fulfill.
Progress made doesn’t mean late effects can’t happen. At the same time, experiencing late effects of treatment doesn’t mean you can’t have a good quality of life, as well as a long life. Surviving survival involves due diligence. How much? Depends on what type of cancer and cancer treatment you had. Follow through with your follow-up plan after finishing up your cancer treatments. Don’t brush off symptoms that concern you, and try your best to live a healthy lifestyle. While keeping all of this information in mind, don’t forget my most important advice: live! Reap the rewards of that incredible battle you won.
Read more: Hodgkin’s International; Cancer.org, run by the American Cancer Society, explains the differences between childhood and adult cancers, and here they discuss late effects and childhood-cancer aftercare.