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Newly diagnosed What is this ?

 
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Cherie
New User


Joined: 25 Mar 2005
Posts: 2
PostPosted: Fri Mar 25, 2005 1:40 pm    Post subject: Newly diagnosed Reply with quote
My niece had a "cyst" removed from her neck and found it to be
something else entirely. A biopsy was done and the diagnosis was
DFSP. Because this cancer is fairly rare, he recommended her to
to a Dr. at UCLA. We went immediately thinking they would do more
surgery, or treatment of some sort. We are traveling from another
state to see this doctor and were dissapointed the visit was very short
and uneventful. At this point we have no idea of the staging of the
cancer, her prognosis. So many questions and so few answers at
this point. She has an appointment at the end of the month, to meet
with the "tumor review board"...... Why are they in no hurry and how
can they be on insensitive to the needs of the patient and their families.

Any informations or advice would be very appreciated.....
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leo
Site Admin


Joined: 23 Sep 2004
Posts: 1574
PostPosted: Tue Mar 29, 2005 4:47 pm    Post subject: dermatofibrosarcoma protuberans DFSB Reply with quote
Hello

Thanks for posting. Sometimes it can be difficult to understand why doctors may seem unimpressed by someone's problems. To the patient, it is a big problem, regardless of the kind. Anyway, I wanted to share my empathy with your feelings. While I can not tell you why they have behaved this way, there are always other centers where you can get a different treatment.

regards,
Leo
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Disclaimer: this information is for informational purposes only. It is not medical advice.
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Cherie
New User


Joined: 25 Mar 2005
Posts: 2
PostPosted: Wed Mar 30, 2005 12:10 pm    Post subject: Re: dermatofibrosarcoma protuberans DFSB Reply with quote
Thank you for the reply....

Today, my niece is meeting with the tumor review board (UCLA)
and I presume she will be given her options for treatment.
[quote="leo"]
there are always other centers where you can get a different treatment.
regards, Leo[/quote]
It's a shame that Nevada residents have to go out of state to
receive decent medical care. The Doctor that removed the
"cyst" was an ENT and it was at his suggestion we went to UCLA.

[b]How does anyone really know, just how good the facility or Doctor
treating them really is???[/b] I did research on the orginal ENT and
I have attempted to research the Doctor she was recommended to.
I was surprised that there is so little information put out there. OR
am I looking in the wrong places???

At this point I am a nervous wreck, but I am hoping for some news
today.......
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