Erica's Story

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After I had my youngest child in 2015 I noticed I wasn't healing properly. I was 27 and had 2 kids previously so I knew something wasn't right. I got an ultrasound and they found a small mass in my abdominal area near the ribs under my breast. They did a ct scan and basically I was told theres nothing they could do because it appeared to be
a mass or scar tissue that was on a muscle that I needed therefore couldn't be removed because it would disable me. years went on and I dealt with the pain... up until 2018 when I just couldn't imagine living the rest of my life in this much pain. I complained and because the lump that you once could only feel, was now so visible from the outside... they did another ct scan and its grown a lot. they then did a biopsy and diagnosed me correctly with desmoid tumor. I've been struggling with this disease since nov 2015 but was just diagnosed in September 2018. the DT has grown through my rib cage and causes a great deal of pain, discomfort, shortness of breath & extreme fatigue. I would say my pain is a 7 or 8 average and if I do too much its a 9 or 10. they have me on sulindac and tamoxifen to hopefully shrink the tumor, if this doesn't work they will try another medication combo that will hopefully help shrink it... if that doesn't work they will have no option but to remove the tumor and have to reconstruct my rib cage area. I honestly don't remember what feeling normal feels like... I just want to be around long enough to see my kids grow up and be the grandmother to my children I or them never had. this disease is so rare that there isn't much research on it.even they successful remove the tumor there's a 25-50% chance of reoccurrence. I just wish this was something that was easily treated. its so scary not knowing what my future will be. only 2-4 people PER million are diagnosed with Desmoid tumor each year and there is only 1 foundation that is working on a cure. It is not a cancer but I am getting treated at a cancer center and have to take cancer treatments. its very aggressive and I hate that its in my stomach near all my organs because I feel like it makes it a little more difficult to fix. From the outside I appear fine, but on the inside I'm most definitely not.