Anne Willis, Ewing’s sarcoma survivor

"I’m thankful to have found an oncology team that is so helpful, but I wish I’d had a treatment summary and survivorship care plan the day I finished treatment."

When I finished treatment for Ewing's sarcoma at the age of 16, I just wanted to be a normal teenager again. On my last day of treatment my oncologist told me to come back in three months for a checkup. Appointments every three months eventually turned into every six months, and finally I only had to come back once a year. I went back each May and never had problems. Every now and then my oncologist would tell me to have my thyroid checked because of the radiation to my head and neck, and he advised me to wear sunscreen where my head was irradiated. I'd leave the office, relieved that there was no evidence of a recurrence and not worried about anything.

After about nine years of this routine, I finished graduate school and decided to move 1,500 miles away from my parents and my oncologist to start my life as an adult. I found a great job and for the first time was not covered by my father's health insurance. Since I was so far away, I decided to transition my yearly check-ups from the doctor who treated me to a survivorship clinic in my new city.

I had researched health issues in graduate school, and I knew about late effects for cancer survivors. I also knew that having a treatment summary would help me receive the care I need for the rest of my life. But when I asked my oncologist for a summary, he said, "No." He suggested I get a copy of my medical chart and sort through the information myself.

My oncologist treats patients who are mostly over 65. I was his youngest patient by far. And because I was so young at diagnosis, I will have to deal with physical, emotional and psychological effects of cancer that most of his other patients simply won't. I was shocked that he wouldn't help with my request, but I was determined to help myself.

I went to the medical records department, signed all the forms, and a few weeks later received a packet in the mail. When I opened it, I was confused by the small number of pages — I knew my chart was massive. Apparently, I'd filled out the form incorrectly. Even if I'd had the entire chart, though, the handwriting was awful and everything was confusing — there was no way I could go through it myself. I simply don't speak "doctor."

When the time came, I went to see my new oncologist by myself. It was the first time in my life that I had gone alone, and I was absolutely terrified by the thought of being completely responsible for conveying all of my treatment information. Luckily I knew enough about my history, and Ewing's sarcoma has a consistent protocol, so my doctor was able to get the information that he needed. But having a sheet of paper with my treatment history would have made me feel more at ease and would have helped my new oncologist determine what issues I should watch out for.

In the end, my new oncology team is helping me get my medical chart and will comb through all the information to create a treatment summary. I'm also getting a written list of potential late effects, their signs and symptoms, and what tests I should have for the rest of my life. I'm thankful to have found such a helpful oncology team, but I wish I'd had a treatment summary and survivorship care plan the day I finished treatment.   

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