CELIA BROOKS wrote:
>
> Hi everyone,
> My name is Celia and I just found you yesterday while
> browsing on the web.
> I am 34 years old and have just been diagnosed with
> recurring osteosarcoma.
>
> I had my first occurrence at 15 in my right hip which began a
> long and arduous journey for the right doc/hospital......well,
> even the right diagnosis.....I have been to Mayo, Hopkins,
> and a variety of local hospitals along the way. It was
> exploratory surgery which found it in the first place after a
> myriad of speculative diagnosis' such as JRA, Lupus....I even
> had an ortho doc (Petterson) at Mayo tell me it was
> "Snapping Hip Syndrome" it wasn't until unsuccessful
> treatment for this that exploratory surgery was done and they
> found the tumor inside of my hip joint......
>
> All of this to say that it's back again now for the third time
> (this time in my right femur) and I have no idea where to turn.
> I live just outside of Washington, D.C. and my doc at
> Hopkins (L. Riley) is now retired, and am being treated for
> chronic pain there by Dr. Raja but sometimes I feel like their
> right hand doesn't know what their left hand is doing (being
> passed around from department to department)....I just want
> some answers and a plan of treatment I can "live" with. I
> don't want to spend 3 months waiting for an appointment only
> to find out that this isn't the doctor that I need to see. Time
> is so critical. Thanks for listening to me babble.
>
> DOES ANYONE HAVE ANY REFERRALS FOR A GREAT
> OSTEO ONCOL DOC WHO SPECIALIZES IN HIPS AND
> LEGS?
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> ------------------------------------------------------------------------Dear Celia,
I know how easy it is to get lost in the system of a large institutuion.
I went to Hopkins for a second opinion and know that in spite of
attempts to meet patients' needs, it is easy to get "lost in the system"!
I work in a cancer research organization so when I was diagnosed with
cancer I was in the right place at the right time. Through contacts at
the National Cancer Institute, I was able to learn that they consider
M.D. Anderson in Houston and Memorial Sloan Kettering Cancer Center in
New York to be the best cancer institutions in the US (off the record
least any other organization be offended ;)). I was treated (both
surgically and radiation therapy) at Memorial Sloan Kettering and was
very pleased with the care and communication between all participating
services of that large institution. At no time have I ever felt that I
have "fallen between the cracks" and have even been surprised that a doc
in one service knew what was done in another.
They can be contacted on the web at; http://www.mskcc.org
This has been my personal experience with medical staff from MKSCC and I
have had Head and Neck, Dental, Plastic, Orthopedic Sergeons, Neuro
Consults, and Radiation Oncologists all involved in my care and all aware
of what the other was doing.
If I can be of any further help please let me know at:
lehnerj1@ix.netcom.com
Keep a positive outlook and know that there are alot of people out there
for you.
God Bless and take care,
John Lehner
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