The annual meeting of The Endocrine Society was held in Boston, MA June 4-7, 2011. For the 11th year in a row, the CSRF had a booth on the exhibit floor. The booth was staffed by Louise Pace, Karen Campbell, Ellen Whitton and Christy and Phil Hubbell. Many endocrinologists, endocrine nurses and researchers attend this annual meeting and the CSRF welcomes this opportunity to share our stories and information with attendees. Even after many years, physicians continue to say, “I didn’t know there was a support group for Cushing’s patients. I’ll pass this information on to my patients.”

The technical sessions this year contained a wealth of information on Cushing’s, much more so than other years. In addition, it was wonderful that the sessions on Cushing’s were held early in the conference when attendance was at its highest, rather than on the last day as in past years when many attendees were on their way home. Another exciting difference at this year’s conference was that the first ever Continuing Medical Education Symposium devoted solely to Cushing’s was held and the event “sold out”, meaning that over 500 people were present. This was an excellent session for endocrinologists to learn from experts in Cushing’s about everything from signs and symptoms, to testing and treatment options.

A Symposium titled “Will Medical Management Replace Surgery for Cushing’s Syndrome?” consisting of six 30 minute presentations was held on Saturday morning. Included in the talks were reports on the results of two clinical trials of medications being studied to treat Cushing’s. (You most likely saw the clinical trial announcements in this newsletter, going back over the past several years.) The results of these studies are discussed in more detail in a separate article.

It is impossible to summarize all of the information presented, but what follows is a synopsis of some of the highlights. Haasan-Smith, et al (Univ of Birmingham, UK) presented surgical data on cure rates at their facility between 1988 and 2009. Of 68 patients, 70% had long term remission, 18% had persistent disease and 12% experience a recurrence with a median time to recurrence of 2.1 years. The long term remission rate for patients with post op cortisol less than 50 nmol/L (1.8 mcg/dl) was 81% versus 50% for patients with post op cortisol greater than 50nmol/lit (1.8 mcg/dl). Long term remission rates were also greater for those with positive ACTH histology (82%) versus those with a negative histology (50%). Shah, et al (Emory Univ., Atlanta, GA) also reported on surgical cure rates with an eye towards being able to predict remission. In this study of 49 cases from 12/1996 to 1/2010, the remission rate at 2-6 months was 91.8% and all these patients had post-op cortisol less than 5 mcg/dl. Unfortunately, recurrence was observed in patients with post-op cortisol less than 5mcg/dl and the authors concluded that post-op cortisol was not predictive of long term remission. Sharma, et al (NIH, NICHD, Bethesda, MD) presented 3 case studies where patients with ectopic Cushing’s with no identifiable tumor were treated over a period of years with ketoconazole, metyrapone, and one patient with mitotane, all drugs called “steroidogenesis inhibitors” as they decrease the production of cortisol. All three patients spontaneously developed adrenal insufficiency and medications were discontinued. Two patients regained normal cortisol secretion and have remained in remission; one for over 5 years and another for over 2 years. The third patient recurred after about 1.5 years. Thus, “spontaneous and prolonged remission can be seen in ectopic Cushing’s after long-term treatment with steroid inhibitors due to an unknown mechanism.” Baudry, et al, (Hospital Cochin, Paris, France) reported on the use of mitotane in 76 patients with Cushing’s disease. Remission was observed in 72% of patients at a median time of 6.7 months. Pituitary tumors became visible on MRI in 12% of patients and 29% of patients discontinued treatment due to side effects. Recurrence following discontinuation of mitotane was observed in 71% of patients at a median time of 13.2 months.

In another Oral Session titled “Long-Term Outcomes and Consequences of Pituitary Disease” Stuijver, et al, (Leiden Univ, Netherlands) reported on venous blood clots in Cushing’s patients, before and after treatment. Healthy individuals have a risk of less than 1 per 1000 person years and patients with active Cushing’s showed a risk of 14.6 per 1000 person years. The risk does not decrease to normal immediately following surgery and blood clots were observed up to 3 months following surgery. The authors recommend starting therapy to reduce blood clots at diagnosis and continuing until well after surgery and point out that guidelines are “urgently needed”. In the same oral session, a presentation by Fayngold, et al (Mount Sinai, New York) discussed the Long-Term Outcomes in Treated Cushing’s Disease specifically looking for risk factors that influence mortality years after cure. The authors concluded that “longer duration of glucocorticoid exposure is associated with increased mortality and vascular events even after long-term biochemical remission”.

There were many other excellent presentations and posters. If you are interested, you can view the abstracts yourself from The Endocrine Society website at www.endo-society.org. Select the 2011 meeting and View Abstracts.