The story of Leslie
I felt my first tumor towards the end of my pregnancy in the later part of 2006. My husband and I had fertility issues and I took Clomid for at least nine months and also the HCG shot and was successful with intra uterine insemination IUI. I told my obgyn about the pain I was having in my lower left back post partum, he told me it was typical after pregnancy and it was just my pelvis and muscles, everything needed to return to normal. A few months later I saw my general family physician about the pain in my lower back and he gave me exercises to do at home to strengthen my muscles. I went back to see him about six months later and he took an x-ray and saw nothing, so sent me to do physical therapy. I went to physical therapy three times a week for a little more than six months to strengthen my core muscles with no improvements. I would notice that the lump felt worse during my menstrual cycles, and that it was growing larger. After the therapy I returned to my general family physician, he ordered an MRI and did not see anything and sent me to an orthopedic specialist. The orthopedic specialist did not see anything on the MRI and sent me to a rehabilitation specialist who looked at the MRI and saw something! He ordered another MRI this time with contrast, and there it was! The rehabilitation specialist sent me to a vascular surgeon, he biopsied the lump (out patient surgery) and then decided to remove the tumor (outpatient surgery), it was removed December 2010. The pathology was sent to the Cleveland clinic and it was determined that I had an extra abdominal fibromatosis. I felt the achy lump again October of 2011 and went to see the vascular surgeon again and he thought it was most likely scar tissue and told me to come see him again if the area was still bothering me in two months, it was still bothering me, and I returned and he ordered an MRI with contrast even though he was pretty sure it was just scar tissue. MRI results revealed that it was in fact a tumor. He walked into the room I was waiting and his first words were, ‘well, the patient was right’. I had my second tumor removed June 2012. The surgeon was more aggressive this time going deeper and wider, afterward my pathology report did not show a clear margin so my surgeon sent me to see an oncologist. I live in Columbus Ohio and was sent to the Zangmeister. The initial oncologist sent me to a radiation oncologist who ordered 25 sessions of radiation. All of my doctors have been wonderful, unfortunately they did not have any experience with Desmoids. I spoke to my ob/gyn about my experiences and he called a colleague at The Ohio State University and I found my current oncologist who has experience with Desmoids. I see him every six months and have an MRI annually.
I feel a constant ache in the site of my tumor/surgery/radiation, I don’t feel a lump but have pain that comes and goes. The best way to describe it is that it feels as if my bone hurts. I am glad for the biannual appointments, and the care I am receiving at OSU.