Two years ago (at the age of 40) in October of 2012, I discovered a lump near my groin that appeared to be your typical “bikini bump.” After a month or so, it had not gone away and started to itch a lot so I showed it to my then fiance (now husband). He wanted me to get it looked at right away, but I had no insurance and was just too busy planning for my February 2013 wedding to give it much more thought. By December or so it was growing and itching a lot, so I gave in and went to a walk-in clinic to have it looked at. The physician on duty said that it was very common for women to get lumps there and not too worry about it, so I didn’t! Over the next few months it grew quite a bit and was itching like crazy! As soon as we got married (and I got insurance) I immediately made an appointment with my long-time gynecologist. She said the same thing the walk-in clinic doctor did- just a normal cyst. She said if it bothered me though she would refer me to a surgeon to have it removed, which she did.
I left on my honeymoon then came back to have it removed. Surgeon assured me it was just a cyst as well and that I didn’t need to worry. A week later I get a call from the surgeon’s office asking me to come in about my results, even though the office was closed. As you can imagine my husband and I were in a panic all the way there. Basically he tells me they were not able to test my slides locally, they had to be sent to Johns Hopkins Hospital for testing as they had found something “abnormal”(I live in Panama City Florida so not exactly your hot spot for medical treatment). They determined I have an extremely rare type of soft-tissue sarcoma called “Myxoinflammatory Fibroblastic Sarcoma.” Said that as sarcomas go, not such a bad one to have as it doesn’t spread and even though it has a high-rate of re-occurrence, it takes years to return and always to the same location (usually fingers or toes- not many cases like mine). So I had a second surgery (wide incision of the groin) and 38 sessions of radiation (ON MY GROIN!!!) and then was declared in remission at the end of August 2013.
Flash forward to now (July 2014) and I just went through my second occurrence – this time in a new spot- and my fourth surgery. Due mainly to the fact that my cancer came back so fast and spread, I am in the process of being “re-diagnosed.” My new oncologist (my local doctors sent me to the Mayo clinic in Jacksonville for treatment) thinks I have probably been misdiagnosed from the beginning and likely have a more aggressive type of soft-tissue sarcoma. I am just waiting to find out what kind it is. I hate to admit it, but when the second new lump appeared, I STILL ignored it for four months before going to the doctor- and it had only been five months since I had been declared to be in remission. I guess I just thought it was impossible to come back so quickly and to have spread. Once I did finally go in and have it looked at, both my local surgeon and oncologist said there was no way the cancer had come back so quickly and for me to wait another month to see if it went away. After a week, I went back and insisted they remove it as it was starting to itch a lot. You can imagine their response when they found out it was cancer- total bewilderment. They said it was good that I had been so adamant about having it removed. I am now just praying for the best. I am grateful to an amazing network of family and friends that help keep me positive and motivated to keep taking things one day at a time.
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!