[MOL] Donna's Oncologist Appointment [12735] Medicine On Line


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[MOL] Donna's Oncologist Appointment



Dear Donna,

I like your plan of action!  Your attitude is so refreshing, you are so ready to fight and beat this cancer!

I'm feeling really silly asking this and please forgive me if I am misunderstanding something, but is this trachea tumor of an unknown origin?  What kind of cancer cells did they say it was?

Have you visited Oncolink?  There are many cancer treatment protocols and cancer trials that you search there but I couldn't help without knowing what type of cancer it is.  Have you given us those details?  Did Lillian help you with some information?  I know she was asking you for this information so that she could some research for you...  If your cancer is of unknown origin, I think they treat it depending on the location the metastatic tumor is found, upper or lower body.

With my brother-in-law who has NSCLC, also had a brain tumor and had SRS done with X-knife.  We were not sure to go with either Gamma-knife or X-knife but after reading the literature on both he went with X knife.  Like Marty had said, one of the determining
factors with SRS is the precision of the equipment.

I don't know if you've heard of this procedure, but for areas like the esophagus they have a procedure called Photodynamic Therapy.  They use something called Photofrin (sp?) that is absorbed by cancer cells only.  Then they use a laser that activates the chemical, Photofrin, that kills the cancer cells.  I really don't know if this even is at all applicable, but you can fiind it on Oncolink as well.  Its just recently been approved for Lung Cancer so we were batting that one around too.

Well here's are some links:

http://oncolink.upenn.edu/	(site is a great place to do research on treatment)

http://norm28.hsc.usc.edu/USCRadOnc.html	(this USC's Radiology homepage, see "Gamma knife" and also "What's New")

http://www.radonc.ucla.edu/ROWWW/ROIndex.html	(this is UCLA's radiology page, see "X-Knife")

http://www.radionics.com/products/srs/xk.shtml	 (this is Mfr's site of "X - knife")

http://oncolink.upenn.edu/clinical_trials/pdt_phase2.html	 (this is the Photodynamic Therapy trial at Penn, info thru Oncolink)

http://oncolink.upenn.edu/tv/fox_pdt.html	  (this site is a short TV blip in PDT)	    

http://209.41.253.5/pdt@lmrf/	(this is PDT site)

I hope this will help,  take care little bear!

Liz

-----Original Message-----
From:	DonnaBind@aol.com [SMTP:DonnaBind@aol.com]
Sent:	Wednesday, July 22, 1998 4:32 PM
To:	mol-cancer@lists.meds.com
Subject:	[MOL] Oncologist Appointment

What a day!  I got to my appointment (finally).  When I went to check in the
first words out of the secretary's moth was that my HMO never sent the
referral.  The HMO set this whole thing up.  What gives?  I had to walk to a
pay phone and call the HMO to have them fax the referral over.  Anyway....

This is the scoop.  I liked this oncologist. He really check me over.  He is
certain that it has not spread to brain, liver, etc....by CT scans and exam.
He thinks this was primary but has requested a pelvic CT scan to be certain.
That is the only test he he suggested.
  
Lowdown.......No surgery (he agreed with Hopkins surgeon).  Radiation and
chemo first thing.  Along with Taxall and something else. Starting as soon as
next week. He said that I would have trouble swallowing towards the 4-5 week
due to the esophagus being exposed.  In fact, in all liklihood I would not be
able to eat solid foods for a few weeks.  It would heal itself over time.
Then he explained chemo complications, etc... I explained to him I was looking
into stereotactic radiosurgey.  He did not seem positive on that however, that
was the only thing he said that I did not like.  Very small chance that tumor
would shrink small enough to be surgically removed.  And even then a very
short window of opportunity to remove immediately following radiation and
chemo due to scar tissue build-up after radiation. 

Now he did not go there, but I did. What about prognosis? 1 year without
treatment, an additional 6 months to a year with treatment.  Although he said
some people go on to live 3-5 years.  He asked if I wanted statistics and I
said NO! He said good because he does not believe in them.  

My 2 older children are going down to the beach to stay with my father(he
lives there) over the wekend.  My husband and our 3 year old  will join them
on Sunday.  We were only going to stay Sunday and come home Sunday evening.  I
have decided to stay until Monday and maybe even Tuesday.  Although he has
said next week.  I have decided to a) see one more oncologist b) wait to hear
from SIUH about radiosurgery c) check out the University of Virgina d) info
provided by others and last but not least meditate and pray on all of this.
Then and only then do I feel I can make a positive and informed decision. 

Any information and/or guidance you may be able to offer would be most
appreciated.

A friend to all of you molers,

Donna
   
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