A Rare Case of a Rare Cancer


I just realized July is Sarcoma awareness month. I believe it is extremely important to spread awareness about this not only because it was a cancer I had, but also because Sarcoma itself is rare.

Sarcoma cancers attack body tissues like bones and muscles. It is also more common in children (mainly teenagers) than adults, which is why I was treated in a pediatric oncology clinic despite being 23 when I was diagnosed. Stats show that Sarcoma covers 15% of pediatric cancers and only 2% of all cancers in the United States. Another stat states, “About 60% of soft tissue Sarcomas occur in the arms, legs, buttocks, hands, or feet. Another 20% occur in the chest and abdomen. About 10% are found in the head and neck.” Sarcoma as a whole is rare, and now add 50 sub-types. Some sub-types of Sarcomas include Osteo, Ewing’s, and Synovial. Treatment options include chemotherapy, surgery, and radiation. Sadly some amputations may occur as well due to the severity of the case.

As you know, my second cancer was Ewing’s Sarcoma. However, my Ewing’s Sarcoma was in my uterus. Initially mistaken as a pregnancy, I had a tumor the size of a 5 and 1/2 month old fetus connected to my uterus and extending my stomach and cervix. When we found out it was a tumor and not a child, my surgeon and oncologists prepared for a gynecological cancer. The tumor was also rare as imaging showed it had both solid and liquid properties to it. Imaging also showed signs of it being Ewing’s and my team was shocked. They went through medical case studies and journals and could not find ONE case of a Sarcoma in the uterus. Normally you would do chemotherapy, then the surgery, then more chemotherapy and/or radiation, but in my case the tumor had to be removed asap due to how rapidly it was growing. This is why I had to have a hysterectomy. I had to give up my fertility and not take a chance of leaving the tumor in any longer.

The tumor was successfully removed during a 4-hour, very careful surgery. I remember feeling heartbroken about losing my fertility, relieved that the surgery was successful, and fearful of what was to come if in fact my case was truly one of a kind. And my fears came true when I was officially diagnosed with Ewing’s Sarcoma of the uterus a week after my surgery.

My team decided to follow the standard protocol for Ewing’s with the exception of doing the surgery first. So I had 17 straight cycles of chemotherapy ahead of me, wondering if it was even going to work for a case like mine. This cancer diagnosis came when I was an adult, so I did have the choice to not do treatment. And I’m not going to lie, I considered it. Since the cancerous tumor was removed from my body and there was no signs of cancer to the naked eye, I had the choice to leave it at that and see what happens. However, there could be a microscopic piece left there and I did not want to take that chance of having such a rare cancer grow back. So I made the choice to go through the chemo, and I am beyond blessed that the treatment protocol worked for my rare case.

As you can see, Sarcoma is rare and there are cases like mine that make it more rare. It is important that we spread awareness and share our stories. I hope there will never be another case like mine, but if there is, I hope my story can give some hope. There are so many cancers out there and no two cases are alike.

I am so grateful that I was able to beat a rare cancer despite having the odds against me. There will always be the fear of it returning, but we can not live in fear. I hope my story inspires you to tell yours and to spread awareness for all cancers out there.

Love, Nicole

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