15-Year Malignant Brain Tumor Survivor Defies the Odds, Vows to Improve Quality of Life for Others

Malignant tumors of the brain or spinal cord represent about 1 percent of all cancers. Michael Feuerstein, Ph.D., M.P.H., is among that small percentage.

In 2002, his world was turned upside down when he was diagnosed with anaplastic astrocytoma, a rare malignant brain tumor for which the cause is unknown. He was at stage 3 and given three months to a year to live. Feuerstein underwent surgical resection, followed by maximum brain radiation treatment and 12 months of chemotherapy.

Now, a 15-year survivor, Feuerstein has one focus — cancer survivorship. He switched gears from clinical psychology to cancer survivorship following his battle with the tumor that could have taken his life. He has edited books for health care providers, co-wrote a book for survivors and created the Journal of Cancer Survivorship: Research and Practice, which is aimed at health care professionals who need to help patients after cancer diagnosis and primary treatment.

“My focus was on disseminating information to other cancer survivors and health care providers that would help improve the health, function and health care that survivors receive, as well as their overall quality of life,” Feuerstein tells CURE in an interview.

Cancer survivors face many day-to-day challenges, and this is especially true for survivors of brain cancer. In addition to fatigue and emotional changes such as stress, anxiety and depression, they have a greater reduction in cognitive functions like memory. This can affect work and family roles, says Feuerstein.

“What patients with brain cancer need is as much information as possible related to their specific brain tumor and what treatment means for residual function,” he says. “They can find this information through different brain tumor foundations like the American Brain Tumor Association and the National Brain Tumor Society.”

Feuerstein stresses the importance of getting support, and not only from the neuro-oncologist or neuro-oncology nurse. He says that oncologists don’t always talk about the short-term and long-term side effects of treatment and ways to minimize these side effects. For instance, he says the type of medication after brain surgery that is given to reduce the swelling in the brain has potential side effects such as the inability to sleep, but that could possibly be managed by lower doses or stopping the medication earlier.

“Patients need to know in terms of what to expect over the long term because, oftentimes, the expectation is that the person is going to die. Although that still is the case for certain brain tumors, it isn’t for all,” he adds. “I think there is more reason for people to be hopeful with brain tumors and learn how to handle side effects and optimize function and quality of life as a cancer survivor.”

Some short-term side effects from radiation therapy to the brain include headaches, nausea, fatigue, skin and scalp changes, trouble with memory and speech, as well as seizures. Delayed effects, happening one to two years later, may include continued memory loss, stroke-like symptoms and further changes in brain function.

There are tools that exists today, which weren’t around 15 years ago during Feuerstein’s diagnosis, that can help survivors better manage side effects and other challenges that come their way. Survivorship Care Plans that are individualized for each patient with guidelines for monitoring and maintaining their health over time is one such improvement.

A tool that Feuerstein developed with three other colleagues from the Uniformed Services University of the Health Sciences helps women with breast cancer identify 18 different problem areas. The Cancer Survivor Profile (CSPro) is being used as an app on a tablet in a clinical setting, where survivors complete a brief survey after treatment, receive a profile of their problems in comparison to women who have been out of primary treatment for breast cancer for a couple of years. Then, they can get an idea with their nurses about where they stand and what they need to do.

His next step is creating one for young adult cancer survivors.

“It’s very important for the patient, when possible, to take some control over their long-term health situation and not just delegate or expect that everything will be taken care of by their health care provider or caregiver,” says Feuerstein. “I want to help mobilize people, so they can better manage their health and quality of life over the long term.”