Dr. Susan Eder
“As a physician, I knew that by definition, if the melanoma has spread to the lymph nodes, it’s considered metastatic, and to remove a tumor when you have lymph node involvement doesn’t make a lot of sense. Instead they recommended a systemic treatment. I was thinking, ‘As a doctor, I know that, but as a patient, I don’t know that. I wanted the tumor out of my body.’”
Her next experience with physician/patient perspectives came when she was deciding on treatment. She was offered two very different medical opinions by leading melanoma specialists whom she consulted about treatment options. “My husband, who is also a physician, and I shook our heads and said to each other, ‘Okay, we have two diametrically opposed medical opinions. How do we decide? How could a non-medical person decide?’"
“At the end of it all, we decided that IL-2 was the one chance for a real cure.”
Susan underwent treatment with Interleukin-2 at a Boston hospital. The three-week protocol was going well until during the third week, she lost consciousness. "They didn’t know what was going on and thought I had had a stroke. Then I regained consciousness and learned that I had Posterior Reversible Encephalopathy Syndrome (PRES). It affects your posterior brain so it affects things like your ability to sequence. I remember I couldn’t brush my teeth because I couldn’t sequence all the steps involved. PRES is reversible, but it takes a long time.”
A triathlete, Susan left Boston using a walker and returned to Raleigh to undergo several months of physical therapy. “ My neurologist in Boston found a neurologist at UNC, Dr. Felix, who had special training in PRES.”
Susan had surveillance CAT scans to monitor the melanoma, and three years later the scan detected a change. “The lymph node had grown from 3.8 centimeters to 5 centimeters, about the size of a plum. I was told I needed more treatment soon, but not immediately. At the time, there were two new drugs in clinical trials. When I finally did need treatment, one drug, ipilimumab (Yervoy ) had come on the market and was being used at UNC by Dr. Fran Collichio. My husband and I went to see Dr. Collichio and felt very comfortable with what she told us. “
Susan began the Yervoy and developed colitis, so was not able to complete all her treatments. A special diet cleared up the symptoms, and Susan is now back to her life and has joined the N.C. Cancer Hospital Patient and Family Advisory Board.
“I’ve had a lot of experiences as a patient. I think serving on the Advisory Board is a good place for me to be part of a group of people who share my concerns about things in a medical environment, medical experiences and how we can have an impact. With my medical background, I hope to talk to other doctors, to young doctors, in a training situation.”
She values community, both on the Advisory Board and in her life. “People, including myself, get into this tell or not to tell kind of dilemma. Do I want people to know that I have cancer? And the reality is that having people know - not just anyone, but people in your community - is important. When I got home from the hospital, it was over a month before I cooked a meal. My community took care of me. And that’s what I tell patients when they say, ‘I’m not going to tell anybody.’ You’re depriving your family and friends of a chance to feel like they can do something. As a physician and a patient, I hope to have some interactions on the Advisory Board where I can help people understand these kind of things.”