Two Desmoid Tumors And Counting.......I was 25 when I had my first Desmoid Tumor removed. It was in my upper right thigh. The dr told me about an 1" scar, I woke up with a 14" scar. He told me I would be fine after I healed. I have had nothing but pain since. I told him before the first surgery my hip hurt all the time, he said it was unrelated. I am now 27 and the tumor is back and right on top of my hip. The large lump, that is the tumor, has been there since shortly after the first surgery--they said it was scar tissue. I am more than mad at this point. I do not want to do this again. I am nervous about what this means for my mobility. I already have a hard time sitting or standing for too long, walking far and so on. What will I be left with after this second surgery?
He told me I shouldn't have any children because they think maybe the increase in hormons can increase the risk of these tumors coming back. So, my choices are have children and maybe have tumors or have no children and maybe have tumors. I will not let these tumors decide if I have kids or not. I will have kids. Screw these tumors.
I am pissed. I do not know why my body is forming these. I do not know what to do to stop these and it is heartbreaking that the dr's do not know either.
My 2nd surgery is Monday, September 27th.
Sorry this has taken so long. Thank you so much for all the kind words!
Yes, my second surgery went ok as did my third. I am now on my second year since my 3rd surgery, all my tumors have reoccurred at year 2. I have had the first MRI this year and all is clean and clear! Hopeful my last scan of the year will show the same unchanged results! Please feel free to catch up with my story at my blog: