hi there,

i have been declared a rare specimen i was just wondering if there is anyone
else out there with the same thing as i am having.... a little bit of
history is in order i guess....

i am 35, male. i had an osteo chondroma removed off the left knee in 89 and
then it came back and i had to have another excision in 1993. the second
coming of the osteochondroma was around my perineal nerve. the orthopod
tring to preserve the nerve (not giving me drop foot) left a 3 by 3 cm of
the osteochondroma in my leg. basically he cut the stalk and left the head
of the osteochondroma in there...... i read about it a lot. it is definitely
in the literature that in very rare cases the osteochondroma turns into
chondrosarcoma....

i am a radiographer and luckily i have been keeping a very close eye on my
arch nemesis. it had grown .5 cm since 96 and all the radiologist were
telling me that it is just  a benign tumor just maturing. things were all
right untill decmber 2004. when it started pushing on the perineal nerve and
i couldnt go to sleep despite of all the anti inflamatory and codein i took.
i went to my GP and he wanted to send me to have a nerve conduction study
thinking it is a collapsed disk in my back. he wouldnt have a bar of cancer.
however he caved in when i insisted on a bone scan ..... bone scan showed it
has its own blood supply.

i knew a few surgeons i worked with in the hospital. they all thought it was
just benign and i am being a drama quin, however i managed to convince one
to just yank it out and then send it to the path and prove me wrong. i just
had a gut feeling that it was cancer. i have been looking at it for almost
10 years. it no longer had smooth walls and in one corner it was starting to
look a bit irregular but of course i am only a radiographer and could not
possibly know what the hell i am talking about even though it has been in my
body and i have been looking at it for ten years.

the surgeon told me i am crazy, osteochondromas only turn nasty in hips,
ribs and shoulders and he has been doing this for 20 years and has never
seen anything like it....

the path report comes back positive, grade 2 chondrosarcoma..... ( i am told
that it is classified as grade 2 because it is found outside of the bone if
it was inside the bone it would have hardly made it to grade one, but of
course it did not migrate out of the bone on its own ).
my case was discussed recently in the bone cancer conference (at RPA)as
being the first they have seen in australia and they want me to go under
further more radical surgery to excise the muscle compartment and possibly
cut the perineal nerve just for the heck of it. of course i am waiting for
the staging tests now....

i want to know if anyone else has ever had an osteochondroma turning into a
chondrosarcoma specially in the knee. and i will appreciate any advice....

it just sounds too drastic to lose the use of one leg just  for a  few well
differntiated chondrosarcoma cells and that is if there are a few cells left
behind. why havnt i given the option of radiation therapy on the site and
perhaps a profilactic dose of chemo.... i am at the peak of my career, i am
running a radiology practice and i am part of the management of the imaging
company i work for. i do need my leg ... it just seems like no one cares
about my quality of life ...

i was pretty disgusted that the latest orthopaod that i was referred to
comes in the room with two other students and completely ignored me while
telling the students what a rare specimen i am and then did not give me any
choice but radical surgery and he completely refused to discuss other
options and he cursed the info coming from the internet. He ignored the fact
that i am in the medical field and i know what i was talking about. this
must be a nightmare for the average joe going to see  these sworn careres of
human race with God syndrome....

do you think i should consult an oncologist about other options.... what
would you do....

please help, i am really stuck....

cheers

dan