Solving a 30-year Mystery

Cured of Hodgkin lymphoma, I never expected the health problems I was having were late effects from my treatment.

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Medicine has evolved a lot over the past 30 years, and physicians now know much more about the potential late effects from treatment.

—Carol Kuehnert

When I began experiencing severe neck and back pain about 9 years ago, I had no idea it could be a late side effect from the radiation therapy I had received 31 years ago to treat my Hodgkin lymphoma. And none of the doctors I’ve seen over the past decade have been able to make the connection either, making my efforts to find a reason and a solution to my physical ailments frustrating.

When the pain became worse and I noticed that I was unable to hold my head up straight without using my hand for support, I saw a neurologist, who diagnosed dropped head syndrome, which was caused by weakness of the muscles in the back of my neck. I also have severe atrophy of the cervical paraspinal muscles, the upper thoracic paraspinal muscles, and the trapezius muscles.

Because I had received a radiotherapy schedule of 3,960 cGy in 22 fractions over a 4½-week period to my mediastinum, I began to wonder if the treatment had caused the muscles in my neck and upper back to weaken. After seeking the advice of several doctors, including my former oncologist, none would say with certainty that my muscle deterioration is a late effect from my treatment, so I launched my own investigation.

Finding Satisfaction

Within minutes of doing a cursory search on Google, I found several studies showing a correlation between progressive muscle atrophy and weakness in Hodgkin lymphoma survivors who had received mantle field radiotherapy decades earlier. When I showed the studies to my oncologist, he said he had never heard of radiotherapy causing this effect.

Finally having an answer to the cause of my problems was a relief because it took away the guilt I had been feeling, thinking that poor posture or a sedentary lifestyle had led to my condition. I still feel frustrated by the failure of my physicians to see the connection between the radiotherapy I received and my later problems, but more than anything else, I worry about all the other cancer survivors who may be experiencing late side effects—especially rare ones like mine—who aren’t getting the help they need.

Reducing Risk for Other Late Effects

A physical therapist showed me some exercises to do to strengthen my remaining healthy upper body muscles and reduce my risk for further muscle deterioration, and I do them diligently. I’m also aware of the potential for developing secondary cancers, including breast cancer, as a result of my long-ago treatment, and I follow the American Cancer Society guidelines about getting regular screening mammograms. My primary care physician is also monitoring a recent sharp drop in my bone mineral density, which is putting me at high risk for osteoporosis, another late effect from radiation therapy.

Despite these problems, I’m grateful that the treatment I received cured my Hodgkin lymphoma, allowing me to raise a family and see the birth of my two grandchildren. And I realize that medicine has evolved a lot over the past 30 years, and physicians now know much more about the potential late effects from treatment than they did when I was diagnosed.

Still, my experience has left me feeling on my own as I try to stay on top of my myriad health issues. I saw many doctors over the past 9 years because I was looking for answers and for someone to be on my side, and I wasn’t successful. I just keep thinking: I was able to find information that linked my physical problems to the radiation I had received. Why couldn’t my doctors? ■

Carol Kuehnert, a retired nurse, lives in Fort Wayne, Indiana.