In 1986 at the age of 21, I found a soft lump in my groin area while shaving my legs. I was sure it wasn’t there the day before. I saw my GP who referred me to a local general surgeon. He felt it was only a fatty tumor and we scheduled it’s removal in his office for the following week. It was removed and a few days later I got the phone call I was hoping for. It was benign! I went back to have the sutures removed shortly after and never had to see that doctor again.
Fast forward to September of 2000. I was 35, married with two little boys who were 4 and 7 years old. Once again I found a similar lump next the the scar from the excision back in 1986. I thought it was going to be the same experience and result. But this time it was very different. After having this second lump removed I received the news that no one wants to ever hear, “…you have a very rare cancer. A soft tissue sarcoma called a dermato fibro sarcoma protuberans and you’ll need a wide excision.” I hung up the phone stunned not knowing what was ahead of me and would I be able to take care of my boys. I called Memorial Sloan Kettering Cancer Center in NYC and had my first appointment five days later. My wonderful doctor, Dr. Martin Karpeh, explained that I’d need an extensive wide excision as well as a gracilus muscle and skin flap done by a plastic surgeon. I wouldn’t be able to walk for a month so the flaps could heal. My new doctor also told me that after he had his pathology department look at my old slides from 1986, they all agreed that I had had the exact sarcoma then. They had misdiagnosed me! I went on with my life and this cancer slowly growing in me. I was so overwhelmed with that information and my busy life flying through my mind.
I had my surgery on Halloween in 2000 and spent a very painful week in the hospital. Everything went as my doctor expected and thankfully there were no complications. I was happy knowing my mom was at my house taking care of the boys and I had my husband with me. One of the most difficult things I remember was trying to sound upbeat when talking to my little boys while in pain and on morphine. I didn’t want to worry them at all.
Coming home was really difficult because it was so hard to feel so helpless. I was overwhelmed when a neighbor stopped by to let my husband and mom know that many families from the boy’s school and PTA moms I worked endlessly with had set up a month’s worth of meals for my family. I was beyond overwhelmed and humbled. I was always the “giver.” It was a VERY long month being bedridden but also a very reflective one. My boys were so much stronger than I’d imagined and so many people touched my heart.
So this coming Halloween will mark the 14th anniversary of my surgery. I’ve had a few minor scares through the years having small lumps removed but all have been benign. My boys are now 18 and 21. I’ve been able to watch them grow into amazing, compassionate and empathetic young men. I’ve been here for both of their high school graduations. My older son is entering his senior year in college and my younger one will be a freshman in the Fall. Things I questioned if I’d get to see. I’m so thankful I had the amazing doctors I had. Halloween will always be a bittersweet day for me.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!