The story of Elizabeth
In October 2020, after experiencing pain off and on in my foot for several months, I made an appointment with a podiatrist, and after x-rays and an MRI, my podiatrist sent me to see a surgical/orthopedic oncologist because of a suspected bone tumor in my foot. (The foot was broken—he put me in a boot—but the findings weren’t normal for just a run-of-the-mill stress fracture.) My husband and I met with an oncologist (to be specific, a surgical/orthopedic oncologist) on Nov. 23, and I had an open bone biopsy Dec. 3. We were told after the biopsy that what is in my foot is indeed malignant. Unfortunately, though, my oncologist was unable to tell us what kind of cancer I had. All he shared was that it appeared to be aggressive, and that it likely did not originate in my foot.
On Dec. 10 I received a followup phone call from my oncologist. The doctors were still trying to pinpoint exactly what type of cancer I had, but were at that time pretty certain that, while aggressive, it had originated in the bone, which was a huge relief. I also had a chest to pelvis CT scan which revealed no soft tissue malignancies, which was a miracle.
On Dec. 11 I had a bone scan to see if I had other bone lesions, and I had my post-op appointment Dec. 14 with my oncologist.
At my Dec. 14 appointment my surgical/orthopedic oncologist told me he had received the pathology results of my biopsy sample from NIH saying that the cancer is a type of Ewing’s Sarcoma—a bone and soft tissue cancer that typically affects children and young adults. (My tumor is in the second metatarsal of my left foot.) In fact it is the second-most common type of bone cancer affecting children and young adults, but “second most common” still means “rare,” as it only accounts for about 1 percent of childhood cancers, and only about 225 children and adolescents are diagnosed with Ewing’s sarcoma in the U.S. each year.
Ewing’s sarcoma can occur at any time during childhood, but it most commonly develops during puberty, when bones are growing rapidly. It most often occurs in children between the ages of 10 and 20, and more males are affected than females.
Ewing sarcoma is a VERY RARE cancer in adults. It typically occurs in children and young adults and often begins in the legs, bones of the pelvis, and arms. Mine of course is in my left foot, so, again, I’m a rarity.
In fact, I dare say I’m a UNICORN!
This cancer is aggressive and can metastasize to the lungs (or elsewhere) and kill if not treated aggressively, so treatment consists of chemotherapy (treatment for children with Ewing’s is usually 8-10 months of chemo; adults usually receive 10-12 or more, interspersed with radiation and possibly surgery.
The good news for me is that my Ewing’s seems to have been caught early. It is stage IIA–the best case scenario for Ewing’s. (Because it is so aggressive, Ewing’s is never staged at 0 or 1.)
I began chemotherapy on Jan. 12 with a round of Vincristine, adriamyacin (doxorubicin), and Cyclophosphamide (VAC). That round lasted a day and a half. Then I skipped a week to build my body back up for the next week, which was 7 hours a day, five days a week of ifosfamide and etoposide (IE). My body was so worn out after that that I had to undergo a blood transfusion but my doctors didn’t hold up my next round of chemo, which was more of the VAC treatment.
My next round will be another week’s worth of IE.
While I feel like I’m being put through the ringer snd like my body has failed me I am grateful to all the doctors who diagnosed me. Ewing’s can be missed, and I am lucky to have doctors who caught it early. (My “official” diagnosis came on Mayo Clinic letterhead.)
I say prayers every day for all those who have been personally affected by Ewing’s, and for their friends and family. It is an awful disease and the treatment protocol for it is grueling. If you are the praying type, I hope you’ll join me in saying a prayer or two for those affected.