Joey was considered an Atypical ATRT- I thought it was because it was
located in his neck versus the CNS or kidney. He does has the gene deletion.

Hopkins could not diagnose his cancer- they sent it out to CHOP, Harvard and
to Mayo. CHOP was the facility that diagnosed him. His first biopsy was
done on 2/14/07, the second was soon after and he wasn't diagnosed until
3/14/2007.

Suzanne


In a message dated 10/17/2008 3:25:27 P.M. Eastern Daylight Time,
metteearlywine@... writes:




oh, i think they mean it's atypical because she does NOT have the gene
deletion, whereas most kiddos with ATRT do have the deletion, in the
tumor cells or all cells.

they took a while to decide on ATRT as the diagnosis - and sent
pathology off to "another lab" - i'm assuming Dr. Biegel, but maybe
not. (i suppose i ought to check in on that!)

prior to their consultation with the other lab, they told us they had
narrowed the pathology down to either ATRT or choroid plexus
carcinoma, but were leaning towards ATRT.

--- In _ATRT@..._ (mailto:ATRT@yahoogroups.com) , M Kees <mkees7
3@...> wrote:
>
>
> Hi Mette,
>
> Can you give more specifics as to what the doctors mean when they
say "Atypical ATRT?"
>
> Michelle
>
>
>
> To: ATRT@...: metteearlywine@ To: ATRT@...: metteearlywine@<WBR
+0000Subject: [ATRT] Re: Schwannomas and ATRT
>
>
>
>
> Hi All -Zoe Earlywine does NOT have the INI-1 deletion. Her docs
have notedthat she has atypical ATRT. We have not been tested. No
history ofbrain tumors on either side of our family, that I am aware
of(definitely no immediate family members - parents,
grandparents,grandparents,<WBR>sibligr
>
>
>
>
>
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