My Sarcoma Story – Katie

Katie S Africa Trip 2012My Story: I was a normal, healthy, athletic 53-year-old in 2015, who simply had some abdominal pain and distention. All medical checkups were “normal” and I was in “great health,” so why worry? Then my abdomen started to grow faster than my diet would dictate “normal.” My MD requested an MRI and found suspicious fibroids in my uterus. Due to faster growth, surgery was scheduled to remove the uterus. With two grown and wonderful children, I didn’t need it anymore anyway! But many women impacted have NOT had their children yet. Cancer is unfair, as too many of us know. It was discovered and diagnosed eight days after successful surgical removal as uLMS (uterine Leiomyosarcoma) a rare, aggressive, and to-date, incurable cancer. I was told to “get my affairs in order” and “say my good-byes.” (It tends to metastasize and kill its victims in 2-18 months.) However, I have friends who are passing a dozen years (POW!), but who are fighting against this disease constantly. I am an almost 12-month survivor, working hard to survive and make a difference while I am here.

My Words of Wisdom: Be Kind. Find your ‘village’ (those with your diagnosis). I have found mine on Facebook and by googling my cancer-type. Advocate for yourself…the doctor MAY not always know what is best– but the TEAM of doctors who specialize in your type of cancer might be able to guide in a way you are comfortable. Research and ask every question you have. Don’t just “trust” the first doctor you see regarding your care.

Role of the Sarcoma Foundation of America: I am raising funds with the Sarcoma Foundation of America because they represent and advocate for those of us affected by sarcoma. Sarcomas are not a “normal cancer” and for 50% of us, the chemo and radiation prescribed do nothing. Research is needed. Sarcoma Foundation of America is lobbying for more research and working to raise funds for research across our country. Why?—Because whatever we are doing… or eating… or undergoing… in this world… is making more than 14,000 people each year sick and 6,000 people each year die of sarcoma. Possibly more disturbing for our future is that between 1500 and 1700 U.S. children are diagnosed with a bone or soft-tissue sarcoma each year, making up about 15 percent of cancers in children under the age of 20. This is unacceptable and we need research! Sarcoma Foundation of America is working for answers and building hope with the communities of support created across our country.

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