Peter A. Kazmir wrote:
>
> Hi!
>
> I'm new to this newsgroup, and I just wanted to introduce myself and tell
> you a little about why I'm here.
>
> My wife (who's 25 now) was diagnosed with a Anaplastic Astrocytoma in late
> May of this year (1997). Unfortunately, it was in her left optic nerve so
> it was discovered because her vision started to decay quickly - less than a
> month, went from 20/40 to total blindness.
>
> She was already blind in her *right* eye due to a Cranial Pharyngioma she
> had in/near her pituitary/optic nerve area when she was 10. That was
> successfully treated and she had no reoccurance....but it turns out it was
> treated too well.
>
> Apparently the tumor was surgically resected successfully. However, it was
> also subjected to a full course of radiation therapy. Turns out (they know
> now, but didn't know then) that radiation doesn't have much effect on CP's
> of the type she had, and the risk/reward ratio leans heavily to risk,
> because then the radation can cause mutation in her healthy cells.
>
> Turns out the AA she has now is apparently the results of that mutation.
>
> Well, we are not only struggling now with the treatments for this cancer
> (she's completed 5400 rad of 5-field conformal radiation therapy - pushing
> her way past the lifetime maximum and probably damaging her optic nerves
> permanently, and she's now about to start cycle 3 of 6 for six-week PCV
> therapy), but also her blindness. The doctors don't hold out much hope the
> blindness will be healed to any extent, but they are cautiously hopeful
> about the therapy, since the tumor was only .8 cm in diameter, and it was
> growing much slower than they thought it would (might be mostly a lower
> grade cancer instead of the AA, or just a lethargic AA). Worse comes to
> worst, they might remove her optic nerves and possibly her eyes if they
> have to, but so far have shied away from any surgical moves. I feel we've
> got good doctors who aren't afraid to consult (with, for example, M.D.
> Anderson in Houston, the great hospitals in Bethsida, others here, and
> more) and have great technology (like the 5-field radiation).
>
> It could always be worse, and we're always optimistic, but we're getting a
> little nervous (the first post-treatement MRI is due in two weeks; we're
> praying we'll see some shrinkage or (God willing) a clean nerve).
>
> Anyhow, enough talk, now back to listening!
> :)
> Peter Kazmir
> Austin, TX
>
Dear Peter,
When a medical team suggests or says that it will confer with M.D.
Anderson then I wonder if they would? Our experience is and was in a
similar situation when we found out that my wife had a rare disease was
they said the same, but didn't, thereby going on the protocal that the
N.C.I. had recommended and was written.
We went to M.D. Anderson and 7 others and received consultation letters
and did confer with our oncologist only because the 2nd opinions called
them for consultation, not because our oncologist had pushed for
consultation and we are very confident in our oncologist.
So to make a long story short, I would seek out a very good 2nd opinion
and then confer for consultation and this can be done while treatments
are ongoing. Don't wait for your medical team to pick up the phone and
call. YOu may seek out 2nd opinions from the N.C.I. at 1-800-4cancer
for comprehensive hospitals in your area and by the way M.D. Anderson is
on their list as number 2 or 3 I believe to Sloan Kettering in New YOrk
or Mayo Clinic in Minneapolis.
HOpe this makes sense and God Bless
Marty and Barb
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