Recap on the 2009 Pituitary Patient Symposium on Cushing’s Syndrome

This past Saturday I attended the 2009 Pituitary Patient Symposium on Cushing’s Syndrome at the Swedish Medical Center. It was an all day event that included 6 presentations from various doctors who are highly specialized in the treatment of Cushing’s syndrome. It was a high-level symposium (at times i was lost in the medical jargon) that explored many facets of Cushing’s syndrome. Topics ranged from current treatments to future treatments of Cushing’s syndrome, an in-depth overview of cyclical Cushing’s as well as an in-depth look into quality of life for patients living with Cushing’s.

I’d like to share some of the important highlights from the symposium.

• Cushing’s is a rare and often times misunderstood & misdiagnosed disease. According to the stats provided, 2 to 3 cases of Cushing’s per 1 million are reported each year. The numbers are most likely higher than what’s reported because Cushing’s is misdiagnosed or under diagnosed.

• On average, it takes a patient 2 - 5 years to get a confirmed diagnosis of Cushing’s (sometimes it can take 5 - 8 years).
• Getting a confirmed diagnosis of Cushing’s is a multi-step process that should be done by a doctor who’s had experience diagnosing/treating patients with Cushing’s. Because Cushing’s is so rare, most doctors will never see a case of Cushing’s in their entire career. Many of the doctors described the process of diagnosing Cushing’s as both a science & an art because test results are not always black & white and the doctors may need to draw on their previous experience with Cushing’s to determine if further investigation is needed to get a diagnosis.
• To screen for Cushing’s, many of the doctors agreed on the following tests: urine free cortisol (24 hr urine collection) and a late-night salivatory cortisol (done two times). Quite a few of the doctors presented studies that showed that the dexamethasone suppression test isn’t reliable and doesn’t work.
• Surgery is still the first choice for treatment of Cushing’s. Some of the doctors presented studies with various medication therapy, but none have proved to be successful in managing or treating Cushing’s as the primary treatment.
• Doctors don’t know the root cause Cushing’s (aside from it developing from external sources like steroid medications).

I walked away with so much information and now feel like a Cushing’s warrior. In my next post I plan to share information I learned about cyclical Cushing’s and the reoccurance of pituitary tumors and the associated treatments available.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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