I just joined this group because I've been dealing with an assumed osteochondroma for a few months now that causes a lot of pain and affects my ability to walk, move, stretch, etc. As my orthopedic doctor put it, it's "bigger than the average bear", and it has a cartilage cap that is borderline of whether or not they consider it a sarcoma. This means that everything about it has been confusing, and we planned on waiting to see if it grows but after a couple months I've gone stir crazy with being barely capable of walking at times, or hurting when I'm in bed or just move it wrong. Doctors are always afraid to call it cancer until they have a definitive diagnosis, but due to the size and location, my doctor is afraid to biopsy, so I've been waiting for my transfer to oncology. (Already been waiting 2 weeks, as my doctor determined the transfer necessary). However since it's not officially diagnosed, I'm at the back of the list for oncology, so I get to keep waiting because nobody will give me answers! Has anybody else experienced an "osteochondroma" that was difficult to officially diagnose, and was it actually an osteosarcoma?
Hi wichmam and welcome to the online forums
I'm afraid I can't answer your question, as I've just popped over from the melanoma group when I noticed that your post had gone unanswered, but wanted to welcome you.
It doesn't look like the bone cancer group is a very active one so you might not get a reply. I thought I could point you in the direction of the ask a nurse section of this site where you could post your question. The nurses aim to get back to you within two working days. Alternatively you could also speak to someone on the Macmillan Support Line. It's free to call and will re-open on Tuesday at 9am.
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I had chondrosarcoma in 2013. National orthopaedic hospital said at the time that biopsy is unreliable on these things and recommended a wait and see. That turned into surgery for me which was all good and I have been clear for a while now. Talk to the nurses. We are a rare group even if we don’t want to be. You’ll probably find phone calls if mine on line as mine was inside my tibia!
Not phone calls! Pictures!
Thanks for the input! I actually am scheduled now with an orthopedic oncologist who will remove my tumor next week! We will do pathology after but he's leaning toward it being benign which is a huge relief.
I had so many doctors say osteochondromas don't hurt, this doctor says sometimes something changes that causes pain and it never gets better. So glad I should be done with this soon. Thanks everybody!
Hi Wichman I was just wondering how you got on ? My husband had just had an osteochondroma possible chondrosarcoma removed and we are waiting for results . He was diagnosed 12 years ago with an osteochondroma - it has just grown very slowly . He never had any pain or problems so left it until February this year . It was biopsied ( using guided CT ) in April and that did not show any malignancy but then they talked about false negatives on biopsies . Surgery was done 10 days ago . To be honest it’s been a bit of a performance - we live 200 miles from nearest bone sarcoma unit which doesn’t help .
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