'The Expert Patient'

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

'The Expert Patient'

Postby Cece » Sat May 14, 2011 12:55 pm

http://news.nationalpost.com/2011/05/14 ... e-patient/
“What I found from the patient community was better, more up to date and medically more sophisticated than the information that most oncologists have,” Mr. deBronkart said.
“The world has changed,” said Dave deBronkart, New Hampshire-based co-chair of the society. “It is possible now for smart, thoughtful patients to have information that their doctors haven’t seen yet. This doesn’t mean doctors are stupid, this doesn’t mean doctors do not know what they’re talking about. It means there is a new source of information in health care.”
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Postby MegansMom » Sat May 14, 2011 1:25 pm

This is not limited to Multiple Sclerosis/CCSVI.

In 2006 I was diagnosed with breast cancer. After learning all I could about my specific type, I came upon a chartroom. It was on www.breastcancer.org. There I was told by a similarly diagnosed woman named Pat , that I was a candidate for a new test. The test done on your tumor specimen is called OncotypeDx and it assesses whether you are a candidate for chemotherapy and what your recurrence risk is.

After my surgery I asked my oncologist to order this test. She was a preeminent physician at a large recognizable cancer center. She first said that " insurance probably wouldn't cover it" and then she " didn't really see the value if the test".

After telling her I would pay for the test if I had to and that I was insisting in
it, she complied and ordered the test.

I scored a "o" which is the be score you could get. Chemotherapy would not
help me or influence my prognosis at all.

I believe because chemotherapy would have generated revenue for her or
her Hospital , the physician was not routinely ordering a test that could
prevent needless chemotherapy.

I had advocated for my own healthcare and was very empowered without risking my survival.

Patients+ research+ Internet = a new level of empowerment

I remain friends to this day with Pat, we even met in person.

I now appear on the genomics health website that teaches people about the
test.

Healthcare will never be the same.

Ps I just hit my 5 year anniversary cancer free.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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MegansMom
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Location: Central FL ( near Ocala)


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