Hilary's Story

Diagnosis was the most complicated and frustrating part of my experience with cancer. I went to an orthopedic surgeon because a lump on my elbow that I had noticed 8 months previously was getting bigger. I thought the lump was due to hitting my elbow on the gear shift of an old car, and the resulting hematoma never disappeared. What concerned me was that I had had a mole that was a melanoma, tiny with no depth, removed about an inch from the lump 7 years earlier. Our friend, the surgeon, told me I was probably right but he wanted an MRI. He saw "something" under the hematoma and sent me to an orthopedic oncologist at our local cancer center. There I was told it was probably a benign peripheral nerve sheath tumor. He performed excision of the tumor, unfortunately with positive margins. After a week pathologists finally identified it as possible Ewing's Sarcoma.

We wanted a second opinion, but that doctor said he was sure it was Ewing's and sent me to the medical oncologist for the prescribed chemo. The oncologist was unsure it was Ewing's and ordered another pathology report which came back probable mesenchymal chondrosarcoma. However, he felt that diagnosis was not right either, so he asked if we would go to Dana Farber for another opinion, as he knew Dr. George there and would set everything up for us. Dana Farber's pathologists finally had to request the whole tumor to identify the type of sarcoma. Six weeks after my journey into the sarcoma world I was diagnosed with poorly differentiated synovial sarcoma confirmed by a FISH test.

Treatment

Treatment was 35 radiation sessions to the right arm. The most difficult part was that I had treatment dictated by Dana Farber at my local center, and they had never radiated the back of an arm. Adjusting and getting the positioning correct was difficult. Faith, friends, and family got me through the unknowns, the nausea, the painful burning at the site, and the exhaustion. I was irritated further by the prescription ointment I was given for the burned skin, so on my own I found pure shea butter from a health food store and Vitamin E ointment after treatment ended. Eight months later I had an existing mole on the same arm change and it was diagnosed as a melanoma, small, no depth. That mole was not in the radiated area just on the same arm, so it could possibly be a side effect of radiation.

Recovery

Does one ever recover from the initial sarcoma experience? Physically, I am fully recovered. Because I have played competitive tennis most of my life and sail, ride, kayak, golf, I wanted full use of my right arm. I went to a trainer to get a workout for the period of radiation because I was told I would lose extension and flexion ability. Thankfully, I have full use of my right arm, and I am left-handed. My scans and dermatology checks at Dana Farber are now every six months. Four weeks before scans I go through too many negative scenarios in my head even though I am so active and healthy now.

Life Now

When I was diagnosed, I thought I had already accomplished what I wanted to do. I was married for 32 years, had four grown children, ran my own practice as a speech pathologist, started a homeless shelter and a school, built our dream house, won some tennis tournaments and sailing races. The rest of life was supposed to be for the icing on the cake: enjoying time with my husband and children, time with friends, and finally getting to travel. Since sarcoma, I have done just that, had some wonderful family trips, time with each child, and especially time with my husband who just retired at 60. I have been volunteering with children brought to the US for medical treatment, with a reading program for inner city children, and with a clean water project in Haiti. And since I always wanted a pony, I found Jackson in March and love riding and sharing him.

Thoughts and Hints for New Patients

My best advice would be to go to a sarcoma center as soon as possible. To quote the medical oncologist at my local cancer center, "We just do not see sarcoma and are not sure how to treat the disease." I have all my scans at Dana Farber so that radiologists and pathologists who see sarcoma could identify any recurrence.

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Copyright © October 2012 Liddy Shriver Sarcoma Initiative.