Marian’s Story

Ewing’s sarcoma in soft tissue next to the spine
Age at Diagnosis: 29
Date of Diagnosis: 1982
Location: South Africa
Hospital: Johannesburg General

Diagnosis: As the reader can gather — unlike the ‘usual’ Ewing’s sufferer, I was not a teenager when my condition was diagnosed. I had back pain since my late puberty though, associated with back injuries from sport and dancing. The intensity of pain episodes associated with the SI joint in my left leg increased in my late 20s, and finally my doctor suggested a mylogram (heavy medium contrast with x-rays). This was done 2 days before my 29th birthday and revealed a large mass adjacent to L2-3 vertebrae which proved to be malignant. The tumour was removed the day after the mylogram was done, but because (a) I was older than 20; (b) I was female; and (c) the tumour was not in bone, it took a while (~2 months) for the diagnosis of it as a Ewing’s sarcoma (in the connective tissue) to be confirmed by intensive histology and international discussions by my excellent team of specialists. It was suggested that the tumour had used damaged tissue from previous dices lesions as growth points. I’ll be forever grateful to my surgeon, who was sitting with me when I recovered from the anesthetic and who told me immediately that the growth was malignant — it was such a wise thing to do! Read more

Cliff’s Story

Ewing’s Sarcoma at the Spine
Age at Diagnosis: 36
Date of Diagnosis: May 2004
Oncologist: Dr. Paul Meyers at Memorial Sloan-Kettering in New York City

Diagnosis: I’d been in for regular checkups for lower back pain for two years prior to my diagnosis. I was very athletic at the time, and had several occasions where I was jumping and felt a shocking sensation that would numb out my legs as I landed. My primary care physician (PCP) did some x-rays (which didn’t show anything) during that time, and wasn’t convinced that it was anything significant.

By the time I was diagnosed, the back pain was chronic and debilitating enough to stop me from playing any high-impact sports. I was also noticeably more tired more often and didn’t seem to recover as well anymore. Read more

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