Still Rare After 50 Years: Andrea’s Rare Cancer Story

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One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months later. 

As a child, I had no capacity to understand nor grieve his death. At 35, the same age he was when he passed, I began to grieve and I have not stopped. I am 55 now and I realize his journey of this five-month, terminal illness no doubt frightened and angered him. He blamed himself, thinking that it must have his smoking or the radiation he could have been exposed to, as he worked underground when he served in the army. 

How baffling it is that this rare cancer remains rare 50 years later? There are so many cancer types that must be eradicated, and I hope LMS is one of them. Although no “cure” is in sight and treatment seems futile, I have hope for the future that new and improved treatments will be discovered. 

I share this story because there is someone out there like me, who didn’t know the actual type of cancer their father had. It was a surprise to find all of this out later in life, and I hope that I can let someone know that they are not alone. I hope to gain closure someday and help someone feel validated in their own journey for their loved one. 

September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.