> > I've sent purrs out, I've mourned for the dear losses of our group and
> > nothing has shown up for 2 days.
[quoted text clipped - 20 lines]
>
> Tweed
I got the results back. I have a rare form of recurring, non-cancerous, but
almost cancerous tumors called aggressive fibromatosis (desmoid tumors).
I'm waiting to hear back from my surgeon to get a recommendation to an
oncologist. I guess the best way to handle these tumors is through surgery
(which I've already had done) and radiation.
It's such a rare condition that not many people know how to handle/treat it.
The thing is with these tumors, is that they keep growing back. I've been
on a cancer newsgroup and got some news from an actual doctor. This is the
message:
>I was told to contact you through this group. I hope that's okay. First
> time poster, have never been a lurker, until now.
[quoted text clipped - 21 lines]
>
> kili
Hi kili.
It's a fairly rare condition, and I've only seen it a few times.
It's best considered a very low-grade sarcoma, as it sits right on the
dividing line between benign fibromas and malignant fibrosarcomas.
The mainstay of treatment is surgery. If complete resection is possible that
is often curative. If only partial resection is possible, radiotherapy may
prevent progression or recurrence. Chemotherapy is of no use at all.
Metastasis does not happen, but local recurrence and progression is common,
and this can be life threatening.
This is quite a good starting site
http://whippetrun_bc.tripod.com/the_fibromatosis_page/
Please note however, it says there that sometimes chemotherapy is used. As
far as I'm aware, however, only surgery and radiotherapy have been found to
be effective. Tamoxifen has also been shown to sometimes produce responses.
Good luck
Christina Websell - 04 Aug 2006 19:42 GMT
>> > I've sent purrs out, I've mourned for the dear losses of our group and
>> > nothing has shown up for 2 days.
[quoted text clipped - 91 lines]
>
> Good luck
Thanks so much for posting this, kili, many purrs that you can overcome it.
I had a little brush with the big C myself so wanted to make sure where you
were with it.
Tweed
Marina - 05 Aug 2006 03:44 GMT
> I got the results back. I have a rare form of recurring, non-cancerous, but
> almost cancerous tumors called aggressive fibromatosis (desmoid tumors).
> I'm waiting to hear back from my surgeon to get a recommendation to an
> oncologist. I guess the best way to handle these tumors is through surgery
> (which I've already had done) and radiation.
Glad to read that the prognosis is so good, and that you found someone
to explain things. Purrs for non-recurrence.

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Marina, Miranda and Caliban. In loving memory of Frank and Nikki.
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Monique Y. Mudama - 05 Aug 2006 17:35 GMT
> I got the results back. I have a rare form of recurring,
> non-cancerous, but almost cancerous tumors called aggressive
[quoted text clipped - 7 lines]
>
> The thing is with these tumors, is that they keep growing back.
Oh, man, Kili. So now you know what it is, but it's rare enough that
it's hard to find good info, and it sounds like something you will
need to keep tabs on your whole life.
I'm so sorry. It's wonderful that you finally have a name for this,
but also awful to know that you will need to go through all of these
treatments.
Many purrs.

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monique, who spoils Oscar unmercifully
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Takayuki - 05 Aug 2006 20:11 GMT
>I got the results back. I have a rare form of recurring, non-cancerous, but
>almost cancerous tumors called aggressive fibromatosis (desmoid tumors).
>I'm waiting to hear back from my surgeon to get a recommendation to an
>oncologist. I guess the best way to handle these tumors is through surgery
>(which I've already had done) and radiation.
I'm glad to hear that it's at least somewhat non-cancerous. Now I see
what you meant by "inconclusive". So next would be radiation. Purrs
for that.
polonca12000 - 05 Aug 2006 21:45 GMT
> I got the results back. I have a rare form of recurring, non-cancerous, but
> almost cancerous tumors called aggressive fibromatosis (desmoid tumors).
> I'm waiting to hear back from my surgeon to get a recommendation to an
> oncologist. I guess the best way to handle these tumors is through surgery
> (which I've already had done) and radiation.
<snip>
We think of you often, kili, and we continue to send purrs and best
wishes for no more tumors,
Polonca and Soncek
Sam - 06 Aug 2006 00:10 GMT
>>> I've sent purrs out, I've mourned for the dear losses of our group and
>>> nothing has shown up for 2 days.
[quoted text clipped - 79 lines]
>
> Good luck
Glad the results are back and, while nothing to sneeze at, the condition
is treatable. Purrs for a quick oncologist appointment and for good
news when you see the Dr.

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Sam, closely supervised by Mistletoe