Elisa Shea, Ewing’s Sarcoma Survivor
“Many survivors unfortunately have to discover and research a lot of new and scary issues on their own.”
Beginning then, my visits to the pediatric oncologist continued for another 11 years. The schedule started at every three months, then changed to every six months and finally, annually. Each visit was an entire day filled with blood tests, chest x-rays, and an appointment with my oncologist. During these visits my doctor advised me to see an adult oncologist later in life, but did not recommend one or when to begin. Nor was I informed about late effects. When I turned 18, I was told that I no longer needed to continue these check-ups.
This was great news! Like many other cancer survivors, I heard this and thought I was finally done dealing with the disease. I was just so happy that I no longer had to go back to the hospital where I was treated. I thought everything was finally over. I later learned I was wrong. Cancer survivors do have many post-treatment issues – both medical and psychosocial – that can and should be addressed.
Many people with cancer will say that once you’ve had cancer, there is a deep desire and passion to give back. It’s true. I felt it and continue to feel it. After college, I accepted a full-time position as a fundraiser for a cancer institute.
A year in, I heard about a long-term follow-up clinic at the institute where I worked, which catered to childhood cancer survivors. This discovery led me to begin seeking more information about the late effects of Ewing’s sarcoma. What I found shocked, confused and scared me. I asked myself what many survivors also ask, “Why didn’t my doctor direct me to a long-term follow-up clinic? Why wasn’t I told about all the potential late effects?”
When I called to make my appointment, the clinic asked me to mail my treatment summary to determine which tests to schedule. I had never heard of a treatment summary. Naturally, I did what I had always done when asked about my treatment – I called my parents. Because I was so young when diagnosed, they have a better understanding of my treatment and the types of surgeries I underwent. But at 23 I was embarrassed that I had to keep asking my mom and dad. And they were embarrassed because they couldn’t remember everything.
My point is – why should they have to? It’s enough for patients, parents and families to go through the ordeal of dealing with cancer. It’s hard to hear anything after the words, “You have cancer” or in my parents’ case “Your child has cancer.” They did not concern themselves primarily with the amounts or types of chemo and radiation I received. Instead they were worrying about the survival of their oldest child. Doctors need to give the patients and their family members a hard copy of the treatment summary. A written summary would have helped my parents, and me—and I know it would help many other survivors.
In the absence of a written treatment summary, I was encouraged to find a copy of my medical records from the hospital where I was treated. Little did I know how difficult this would be. I called my doctor to ask if he could write me a summary of my treatment. Unfortunately, he had moved to a new hospital a few years prior. I was then directed to contact the medical records department, and when I did, I was told that they did not have my records.
Many phone calls and large amount of frustration later, I discovered that my records were still at the old hospital. The pediatric oncology department where I was treated had moved to a new children’s hospital eight years earlier, but my records did not go with them. Long story short, my records were finally sent to the follow-up clinic, and they put together a treatment summary. I am so thankful to have found this clinic. I continue to go once a year and have a series of tests done including; Pulmonary Function Tests, an echocardiogram, a mammogram, a breast MRI, a blood test, and meetings with the oncology nurse practitioner, psychologist and cardiologist. I’m detailing all of these procedures to emphasize the importance this clinic plays in my life and my future, 23 years removed from cancer.
My story is not unique. Many cancer survivors face the same challenges I did. However, I was fortunate enough to be working for a cancer institution and to stumble upon a follow-up clinic. Many survivors unfortunately have to discover and research a lot of new and scary issues on their own. They are not as lucky as I am.