The Cost of Living

Cancer patients are living longer, but if radiation was part of their treatment, late effects may be a problem.

Talk about this article with other patients, caregivers, and advocates in the Head and neck CURE discussion group.
Sam LaMonte, MD, knew he had cancer as soon as he touched the lump in his neck. It was 1991, and LaMonte, a head and neck surgeon in Pensacola, Florida, had just stepped down as the president of the Florida division of the American Cancer Society (ACS).

“I told my partners I thought it was cancer, and they were in complete denial,” he recalls. “I wasn’t, because I had been feeling cancer in people’s necks my whole life.” 

LaMonte was right. A biopsy revealed cancer; the primary site was found at the base of his tongue. The diagnosis: stage 3 squamous cell head and neck cancer. The treatment: radiation twice a day for eight weeks. 

LaMonte, 50, resumed his career three months after he finished treatment. He picked up where he left off with the ACS, joining the national board and becoming the ACS poster boy for survivor issues even after he retired in 2002. Then in 2004, his doctor discovered from an X-ray that LaMonte’s left carotid artery was 100 percent blocked, and the right was 60 percent blocked.

The damage, his doctor said, was the result of radiation that had saved his life 15 years earlier. LaMonte was a stroke waiting to happen. He had never had a symptom. 

“I was dumb as a door,” LaMonte says in retrospect. “So was my radiation oncologist about potential late effects from radiation.” Late effects differ from long-term effects, which occur as side effects or complications during treatment and continue into the future. The late effects from treatment may not show up for months or years after treatment ends.

The irony in late effects is that patients have to live a long time to experience them. And more cancer patients are doing just that due to early detection, better screening and better treatment options—including radiation. Five-year survival rates for adult cancers and childhood cancers have risen steadily, with adult survivors at 68 percent and childhood survivors at 80 percent. 

Michael Stubblefield, MD, an assistant attending physiatrist (rehabilitation physician) in the Rehabilitation Medicine Service at Memorial Sloan-Kettering Cancer Center, specializes in neuromuscular and musculoskeletal complications of cancer. While Stubblefield is quick to point out that many patients, particularly those who received radiation after 1985, do well, he currently treats several hundreds of patients who received radiation recently or 10, 20 or even 40 years ago. 

When Stubblefield joined Sloan-Kettering in 2001, he was seeing patients with issues such as shoulder problems after breast surgery. Then, in 2003, a wave of patients began arriving, some from outside New York City,  who were suffering from what he defines as the “constellation of disorders” that affect the muscles, spinal cord, nerve roots, local nerves, plexus and muscles as a result of radiation treatment. Most were adult head and neck cancer survivors or adult survivors of childhood Hodgkin lymphoma—two populations that receive radiation as standard treatment.

Their stories were similar, he says. They talked about doctors diagnosing them with fibromyalgia, or being told they were crazy, or being assured their problems couldn’t possibly be related to earlier radiation treatment. “The doctors couldn’t figure out what was wrong, so there wasn’t anything wrong,” Stubblefield says. 

Hearing their experiences was an epiphany, he says, and it has been “learn as you go” ever since. 

While the new generation of survivors were finding Stubblefield, researchers puzzled over what was happening to healthy tissue when it was radiated. They wanted to stop radiation toxicity to healthy tissue, which would mean more radiation to the cancer and fewer late effects for patients. 

Complicating these questions was the fact that not all patients who receive radiation develop late effects. And those who do may not have the same problems. 

“Everyone reacts differently and is wired a little differently,” Stubblefield says. “Some people get lung problems and some get heart and some get spinal cord [problems]. We don’t have a good explanation for why people with the same radiation will have a different reaction.”

In their search for the root of the problem, researchers discovered a series of overlapping events in cell function due to radiation injury. Stubblefield says one of the culprits turned out to be an abnormal accumulation of the protein fibrin that was secreted by the damaged cells. 

“The fibrin gums up the works,” says Stubblefield. “It deposits inside the blood vessels, outside and even between cells, eventually starving the tissue and causing a slow, insidious wasting.”

The abnormal accumulation of fibrin was responsible for LaMonte’s clogged arteries. Stubblefield explains that, over time, the normal mechanisms that remove fibrin were compromised, leading to its accumulation in places where it shouldn’t be. When this happens in a carotid artery, he says, it can cause the artery to clot off, resulting in a stroke. It’s not known how and why fibrin does what it does, Stubblefield says, and so far, there has been no way to stop it. He can, he says, offer physical therapy and other ways to improve quality of life.

Talk about this article with other patients, caregivers, and advocates in the Head and neck CURE discussion group.
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