I often think about what I would want to know if I just found out I had a desmoid tumor. I clearly remember the doctor calling me on the phone (after hours). At the time I was convinced that this was something a doctor does not do. I have since learned that if you have a weird, strange disease you get special attention which means late phone calls. Late phone calls and/or doctor's personal cell phone numbers is a bad thing.
Anyway, the doctor called me and told me I had fibrometosis which is also called a desmoid tumor. He then told me he would have to Google it. That's when I went to find a specialist. I also Googled it and thank goodness there was the Desmoid Tumor Research Foundation (DTRF). At times I still think I read and know more about my diesease than most. My favorite game is when a specialist doctor will bring in an intern and ask them about my disease. Of course, I know more than them, but it makes me feel educated.
Hi there, and thank you for your blog. There doesn't seem to be much information out there on Desmoids. I was recently diagnosed with what they believe is a desmoid in my abdominal muscle. I have looked for a doctor and searched the Desmoid Tumor Research Foundation. For my area, it comes up with a hospital that's local, but not a department. From what I've read, it seems that I should be seeing a cancer specialist...Did you see a cancer specialist and is it a cancer specialist that I should obtain a referral too? Thank you so much and God bless.
ReplyDeleteWhen I was first diagnosed, I saw an orthopedic surgeon up in Akron, OH. I found him through a friend of the family. After one unsuccessful surgery, I got a second opinion from another orthopedic surgeon in Cincinnati, OH (closer to where I live). He did the second surgery and teamed with a radiologist. After another re-growth my doctor recommended me to a oncologist in Cincinnati to get chemo.
ReplyDeleteI think its important to get someone who's had experience with desmoids. All 3 doctors had several patients which made me more comfortable.
Email me if you have any questions. I know the beginning is difficult. nkulchar at gmail dot com.
:)