Today we talk to Renae Henderson, a young mother who was diagnosed with Epithelioid sarcoma earlier this year. Renae first told us that she had the “best case scenario,” but was happy to share her story because she knows all too well that often times all you see online is the worst case scenario. However, something else you’ll notice about Renae’s story is something that is so common, and often dangerous about sarcoma- the misdiagnosis. Thank you Renae for sharing your story and talking to us today.
Eric D. Davis Sarcoma Foundation (EDDF): Tell us a little bit about yourself.
Renae Henderson (RH): I’m 30-years-old and married with a sweet 2 ½ year-old son. I used to work in advertising until we moved from Atlanta to Portland, OR when my husband got a job out here in September 2011. Now I stay home with our son. I grew up in Williamston, MI and went to Michigan State University. I’m currently staying busy training for a fundraiser I developed called the Sarcoma Hike for Hope. I’m climbing to the top of Mt. St. Helen’s on August 6, 2013 to raise money for sarcoma research. It’s been emotionally healing for me to have something positive to put my energy into. My husband and a few amazing friends are joining me to lend their support too. I enjoy vegan cooking, being active, the outdoors, wine, reading, and travel when I’m not spending time with my family.
EDDF: What type of sarcoma did you have?
RH: Epithelioid sarcoma
EDDF: How did you first detect you had sarcoma? How old were you?
RH: I was 27 and about 18 weeks pregnant when I first noticed my tumor. I couldn’t see it, but felt like I had a splinter in my finger. It grew to what I thought became a wart. 5 doctors across various disciplines (ob/gyn, dermatologist, family practitioner) all said it was a wart. I had it treated as such until November 2012 when a different than I normally saw doctor told me it was a tumor and not a wart. I had the initial biopsy done in early December 2012 and got the diagnosis of epithelioid sarcoma on January 2, 2013 at age 30. Talk about a rough start to the new year!
EDDF: Tell us about your experience with sarcoma and sarcoma treatments
RH: I think it’s difficult because they are so rare. I had never even heard of sarcoma before my own diagnosis. When you tell your friends and family, they don’t necessarily get it either. Everyone has heard of breast cancer, for example, and knows that’s serious, but cancer in your finger? And it can spread to your lungs or lymph nodes? That is harder for people to understand. Once I found OHSU (Oregon Health & Sciences University) sarcoma center in Portland, I was seen quickly and impressed with how fast they moved on the scans and scheduling surgery. I also went to Dana Farber in Boston for a second opinion, and was pleased with my experience there as well. I had to find the doctors and the sarcoma centers on my own though. No one held my hand to help me figure out where to go or who to see. A dermatologist did my initial biopsy and he admitted this was outside his area of expertise. Thank goodness for the internet.
EDDF: What advice do you have for someone who is newly-diagnosed?
RH: Go to a sarcoma center for treatment and get a second opinion, and maybe a third and fourth depending on your situation. It’s critical that the initial treatment is done properly. Also, focus on what you can control (not what you can’t) like providing your body with proper nutrition, getting extra sleep, reducing stress, etc.
EDDF: If someone has a friend or family member with sarcoma what are some ways they can support that person?
RH: The WORST thing anyone can do is nothing. It’s the silence of close friends and even family that is deeply painful and it can ruin relationships. I’d rather someone call me and say, “I don’t know what to say,” instead of not calling me at all. People are so afraid to say the wrong thing, but just knowing your friends and family care and will be there for you through treatment is what it’s all about. I have a friend who sends me a card every single week. It always cheers me up and reminds me that I do have people out there thinking of me and praying for me.
EDDF: Anything you would like to add?
RH: Remember that your case is unique. Even if the odds are not in your favor, or you’ve only heard horror stories, there are good stories out there too.
If you or someone you know would like to share your story of sarcoma or rare cancer with EDDF, please click this link.