Hi, Teresa,

I happened to be back at Connect, hoping to find an answer for what I think to be an IT band syndrome following knee replacement surgery. However, trying to join, I found I was already a member! It was so very good to see your reply to my post. Thank you. Somehow, I didn’t get email notification, so I’d no idea you’d written back after I’d written.

To respond to your question, it’s about me. I was first diagnosed with “enchondroma vs. chondrosarcoma” of my L pinkie (the largest incidence happen in the fifth finger) in ‘94. Sent to the Mayo Clinic, following surgery in SD, the tumor was fully removed and repacked with donor bone. At the time, while having suspicious findings, it was decided to be an enchondroma and to follow closely. With monthly, yearly, and finally a five year follow up, it’d reoccurred. In ‘09, I had my second surgery.

This time, then in Maine, Mayo, unfortunately, had been left out of the consult, and I later learned that the tumor wasn’t fully removed, according to medical notes. Then, too, surgery at the same time on the knuckle tendon I’m not sure was a good thing. Johns Hopkins biopsy, then, felt there were still more things to watch: this time it’d had a ‘permeative pattern’ which I’d understood from reading studies of it’s rarity meant not good findings. (The original SD surgeon, who’d suspected a chondrosarcoma and sent me to Mayo for follow-up surgery — my hand was simply wrapped — told me I’d have to watch this lifelong; that it could kill me. That’s when I began to collect research studies, and had learned of recurrences, symptoms and even some deadly outcomes.)

So, when I began experience pain in my pinkie in ‘18 — which I knew to be another troubling sign, as was a third recurrence — I insisted on an MRI which now showed three nodules, vs. only the one. When the orthopedist told me it was all the same enchondroma and not to be concerned, I knew he was wrong, and sought a local second opinion. And when that second surgeon said he’d not seen anything like it before — and that I knew more about it than he did — and that I should simply amputate, I reached out, again, to Mayo. Of course, still, I didn’t want to lose my finger unless absolutely necessary.

They’d said to come “sooner, vs later”, and I went right away. In September ‘18, with the new diagnosis of chondrosarcoma, I had the amputation, once it was verified that it hadn’t yet metastized. Seemingly, metastasis for this kind of tumor is just as rare as it’s conversion, and now, instead of periodic hand tumor following, I’m doing periodic lung CT scan following, as I had some lung nodules worthy of following (discovered earlier, but mostly disregarded), which now needed closer following. Metastasis for this tumor, generally, is to the lung.

However, after the December and March scans were just fine, the July scan showed two nodules had doubled in size which, thankfully, upon repeat scans in October turned out to be a false alarm. So, we’ve just moved from three month scans to six months. But I’m well aware from all the research that these extremely slow growing lo-grade (grade I) tumors can and do seem to become more active in one’s 7th or 8th decade. I’m 71...

Having read in the research about how there had been conversions to some folks, like me, I didn’t know if I’d find anyone in this forum having had the same experience.

Thanks, again, for listening and responding,
Linda