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Rep. Elijah Cummings had a rare form of cancer called thymic carcinoma when he died Oct. 17 at 68, according to his wife, Maya Rockeymoore Cummings.

As she announced her run for his Congressional seat, Rockeymoore Cummings said her husband had lived with the cancer since he was diagnosed 25 years ago, which would have been during his time in the Maryland House of Delegates. He was elected to the U.S. House of Representatives in 1996.

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She did not say whether cancer was the cause of death, though she said it “had become a chronic thing.”

Living with chronic thymic carcinoma for so long, however, may have been more rare than having the disease at all.

Fewer than 400 people are diagnosed a year with the cancer, which occurs when malignant cells form on the thymus, a gland in the upper chest that is part of the lymph system, said Dr. Kevin Cullen, director of the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center.

The thymus makes white blood cells that protect the body from infections.

The cancer can be cured if its found early, but often it is not discovered until the cancer is in a later stage and has spread around the body, Cullen said.

One estimate puts the overall 5-year survival rate for those with thymic carcinoma at 30% to 50%. The actual prognosis depends on how far the cancer has advanced, the health of the patient and other factors.

“Any large cancer center may see it once a year or less,” Cullen said. “Rarely we see benign tumors, or even more rarely, cancers of the thymus gland.”

The cancers can all behave differently, some more aggressively than others. And thymic carcinoma tumors are known to recur. But unlike breast cancer patients, who can live with the disease for decades, Cullen said he’d never seen a thymic carcinoma patient live with the disease as long as Cummings did.

Neither has Dr. Abigail Berman, an assistant professor of radiation oncology who specializes in the disease at the Hospital of the University of Pennsylvania.

“They are very rare and aggressive,” she said. “It’s rare to have it so long, but there can always be outliers.”

She said those who are diagnosed early can be cured. The cancer can recur, but it’s usually within five years. The cancer typically would have spread in patients diagnosed in later stages, making long-term survival less likely.

The thymus gland sits in the middle of the chest and is large in infants. It shrinks later in life and can be hard to see. Cancer centered there has no clear link to a person’s genes or to some exposure, Cullen said.

Treatment is usually surgery to cut out all or most of the tumor and then radiation and sometimes chemotherapy. There are some trials ongoing for drugs that eventually may help treat the cancer, but not specifically for thymic carcinoma. Rather they are for other cancers of the lymphatic system.

When cancer is found early it’s usually because the patient had a chest X-ray for another reason, the doctors said. There is no routine testing for such a rare cancer.

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There is usually little to point doctors to early thymic carcinomas. Patients don’t normally have symptoms with the cancer in early stages. When a patient develops persistent coughing or shortness of breath, it’s usually after the tumor has become large or the cancer has spread to the lungs, Cullen said.

Cullen said he has treated a number of patients over the years, and cured two people whose cancer was caught early because they had scans for other reasons.

Unlike other forms of cancer that are increasingly possible to cure after they have spread, Cullen said with thymic carcinoma “it’s generally not possible to cure it.”

Neither doctor treated Cummings and they do not know the details of his cancer or other conditions. Cummings also had been treated for a heart issue in 2017 and for a persistent knee infection last year.

“It’s very unfortunate that somebody who was such an outstanding public servant developed cancer," Cullen said.

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