Part of the Grand Experiment

In November 2006, Ellen Stovall, 60, was having dinner with friends near her home in Washington, D.C., when, she says, she thought she was having a heart attack.

“First I thought it was the drink I had before dinner or that I’d eaten too much because I became nauseous,” says Stovall, president and CEO of the National Coalition for Cancer Survivorship. “Then I told my friends to take me to the hospital. My neck, head and shoulders hurt so much I couldn’t move.”

The friends, surprised by Stovall’s calm demeanor, did what they were told. Stovall, ever the medical consumer, popped an aspirin just in case it was a heart attack, and the women left for the emergency room.

Thirty-seven years ago, Stovall, 24, was a busy full-time mom to her newborn son, Jonathan, when some strange symptoms led her to a checkup that revealed Hodgkin’s disease. “I was between a stage 3 and 4,” Stovall recalls. Immediately she began what was then the standard regimen for a cancer patient in her condition — exploratory surgery to remove her spleen, and full body radiation.

While the treatment put her into remission and rendered her “cancer-free” for nearly 12 years, Stovall was a changed woman and began a journey that some 10.5 million Americans are making — that of cancer survivorship. She wanted to get involved with others who were diagnosed with cancer and facing “re-entry” into their lives. “I was so grateful to be alive,” Stovall says, “and I had made a promise to myself that if I survived my cancer, I would do something to give back to others who were not as fortunate as I was to receive quality care.”

She met some other like-minded survivors when she attended a meeting of the National Coalition of Cancer Survivorship (NCCS) in 1988. Two years earlier, NCCS was founded in Albuquerque, N.M., by a group of 26 individuals who saw the full spectrum of cancer care as an experience it termed “cancer survivorship.” Today, NCCS’s mission is to advocate for quality care for all Americans.

When the group moved its office to Washington, D.C., in 1993 to focus on health policy, regulatory, financing and legislative issues that impact cancer survivorship, Stovall, who had joined the board, was tapped to become the CEO. Since that day, she has become a recognized face among legislators and has worked on behalf of the nation’s cancer survivors for policy that has affected all aspects of cancer survivorship, including employability, insurability, affordability of cancer care, post-treatment issues and access to high-quality care. Indeed, NCCS is recognized as the force behind the establishment of the Office of Cancer Survivorship at the National Cancer Institute.

A top priority was to get recognition that cancer survivors had numerous issues that would affect them the rest of their lives — among them the unknown damage to their future health from chemicals and radiation they had received during treatment.

The news at the emergency room was good. The doctor told Stovall she had not suffered a heart attack, but had experienced a fairly common phenomenon known as atrial fibrillation — she was sent home and told to get in touch with a cardiologist.

Stovall saw a cardiologist immediately and received a more serious explanation. After tests, he told her she had moderate to severe narrowing of the opening to her aortic valve, a condition called stenosis. He prescribed a beta blocker to control the fibrillation and suggested a valve replacement in the near future.

Stovall says she followed the advice she gives to others — get a second opinion. She began contacting a national network of oncologists whom she had come to know during years of advocacy. She learned that there were few doctors who knew anything about heart problems brought on by high-dose radiation (except in children). Stovall contacted two specialists, but found that her greatest resource was colleagues who had experienced severe heart problems post-treatment.

Stovall was considering a trip to California to see one of the specialists when a colleague at a major cancer center in another state invited her there for a workup. So in January 2007, she underwent a non-invasive procedure known as computerized angiography (a CT scan of the heart). She received yet another diagnosis: considerable heart problems with significant narrowing of all the major vessels, and pulmonary emboli (blood clots) in her lungs. Recommendation: blood thinners for the clots in her lungs, heart bypass surgery and replacement of the aortic valve.

“By this time I had talked to enough researchers to know that when they were looking at my heart, they were comparing it to one from an average 60-year-old woman,” Stovall says. “But I’m not.”

She says only a few physicians have seen long-term effects in people with a cancer history, so the medical literature has little on health risks associated with post-treatment for cancer.

Stovall returned home to Washington and was referred by a trusted radiation oncologist to a cardiologist he had trained with. This physician performed a procedure called angiography — running a catheter from the femoral artery in the groin into her heart, where he placed a stent in the one vessel that was 97 percent closed. The rest of her heart looked fine, he said — the aortic stenosis was “mild,” not severe. Recommendation: Take medications to keep the stent from closing up and be monitored by a cardiologist regularly.

Having put off her regular mammogram during the turmoil, Stovall went at the end of June, only to find out she had calcifications in both breasts that appeared on MRI and mammography to be ductal carcinoma in situ. After calling yet another set of professional friends, this time in the breast cancer arena, Stovall had a biopsy that confirmed DCIS on both sides. Was it induced by the radiation 37 years ago? Or the hormone replacement therapy Stovall took for premature menopause? No one knows for certain, but breast cancer in post-radiated patients is something survivors should be screened for since studies show that radiation of the chest area at a young age raises the risk of breast cancer.

“When they were looking at my heart, they were comparing it to one from an average 60-year-old woman. But I’m not.”

She is now waiting for the stent to be removed and hoping it will keep the vessel open, which will allow her to be off the blood thinners and undergo surgery for the bilateral DCIS.

“We are among the first generation of survivors who are part of a grand experiment,” says Stovall. “I am among the most fortunate of survivors — I have access to excellent care; I have good health insurance and a supportive network of friends, family, co-workers and cancer survivors; and I know so many experts in the field of oncology. Yet there were still no clear answers.”

Stovall says follow-up for cancer survivors is an imperfect science, and despite her knowledge and connections in the cancer community, she was still traumatized by the initial diagnosis of her heart problems.

“There wasn’t uniform agreement on how to proceed with either the heart problems or the breast cancer,” she says. “The real message here is that we must all be self-advocates; we must become informed and active participants in our care; and we must see ourselves as partners with our healthcare professionals. Lastly, we need to call for reforms to our healthcare system that will enable healthcare professionals to spend the time evaluating and managing these very complex survivorship issues. Our current systems of cancer care do not reward or value that time spent with patients, and that simply must change.”