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Desmoid Tumor

Hi i'm jen from Cleveland OH, I am treated the Cleveland Clinic Taussig Cancer Center. I am 20 years old and its been 7 years dealing with Desmoid tumors. My first tumor I was in 8th grade and grew right on my left hip. The pain was unbearable. I would hit it on every door knob and and thing at its level it hit and I drop to the ground. My hip got so big and the bigger it got the more the pain and tendernous started to continue. was becoming 'normal'. Well the tumor got to be the size of a grape fruit. The doctor sent my to the cleveland clinc and that was diagnosed with a desmoid tumor. And I decided to go along with radiofrequency abalation. When I woke up from surgery I never felt pain like that in my life, I couldnt even breath it hurt to bad. So when we went back to the doctor he said my left pelvic bone got fractured due to the radiofrequency ablation. Ittookroughly 3 years and 2 more desmoids. I had another radiofrequency ablation treatment. This time we learned that there is one on fractured pelvic bone an is the main reason for all the pain i'm in. I deal with the pain everyday and some days are excruciating and it's hard for people to understand. As of today I have the protruding desmoid on top of my pelvic bone and one on my abdominal wall. I was suppose to be taking tamoxifen a year ago, but was not taking it how i should of. Infact I was barely taking it. Around that time I had found out I was pregnant as well. I just had my baby four months ago. (The doctor wasnt happy about it.) However, i recently got married and my husbands in the marines so we are relocating to Jacksonville, FL and I plan to start taking a chemotherapy called sorafenib, If anyone has taking that before please share your experience. I hate to admit when I'm scared but these tumors are more than what I thought 7 years ago. I just recently grasped the fact they are this serious and Ill be dealing with this the rest of my life. All we can do is pray and there isnt another one and hope the ones we do have stay put. And the scarey part to me is one doctor visit you can be fine and the next there is a another tumor. And youre back to square one. On the bright side These tumors are all I know and even though i dont want to take any chemo I need to for my baby now. If anyone has advice on how to deal with being on any chemo. that would be great.
jmbosk16 jmbosk16 18-21, F 2 Responses Mar 12, 2012

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I have been on Tamoxifen for 3 months and it's not horrible! But the newest tumor I have is growing very fast so the chemo isn't working for me either !

Unfortunately the tumor we have is NOT affected by ANY kind of chemo! PLEASE do not allow them to give you chemo in hopes of shrinking your tumor! I have had desmoid tumors since the age of 13 and am now 34, my first surgery was when i was 13 (left thigh) then 2 yrs llaters (left upper thigh), 3rd was when they told me it was back (I was 17) they said it was the size of a grapefruit to find out it was the size of a double football! It took me two years to walk again! They said I was a walking miracle, then 2 yrs later it came back in my back and they removed my kidney and other organs! After that it came back and they finally threw their hands up and sent me to university of michigan...I went through chemo during all my operations and was sick to my stomach going down to 76 lbs! Was I was transfered to U of m they informed me that Desmoid tumores are inoperable! Every time you operate they come back right above the last surgery! PLEASE contact this hospital above to get your answers! I have been going there for 7 yrs and they gave me very strong radiation the first year I am happy to say my tumor NOT only has NOT spread it even still shrinks alittle every year!! If you need ANY help PLEASE contact me!!