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  1. Bilateral adrenalectomy, in which the adrenal glands are removed, has a bigger negative impact on the quality of life of patients with Cushing’s disease than other treatment options, a recent study suggests. This may be due to the longer exposure to high levels of cortisol in these patients, which is known to greatly affect their quality of life, the authors hypothesize. The study, “Bilateral adrenalectomy in Cushing’s disease: Altered long-term quality of life compared to other treatment options,” was published in the journal Annales d’Endocrinologie. Cushing’s disease is caused by a tumor in the pituitary gland in the brain that secretes large amounts of adrenocorticotropic hormone, which, in turn, stimulates the adrenal glands to produce high levels of cortisol (a glucocorticoid hormone). The gold standard for treating Cushing’s disease is the surgical removal of the pituitary gland tumor. However, 31% of these patients still require a second-line treatment — such as another surgery, radiotherapy, medical treatment, and/or bilateral adrenalectomy — due to persistent or recurrent disease. Bilateral adrenalectomy is increasingly used to treat patients with Cushing’s disease, with high rates of success and low mortality rates. However, since the absence of adrenal glands leads to a sharp drop in cortisol, this treatment implies lifelong glucocorticoid replacement therapy and increases the risk of developing Nelson syndrome. Nelson syndrome is characterized by the enlargement of the pituitary gland and the development of pituitary gland tumors, and is estimated to occur in 15-25% of Cushing’s patients who have a bilateral adrenalectomy. Despite being cured with any of these treatment options, patients still seem to have a lower quality of life than healthy people. In addition, there is limited data on the impact of several of the treatment options on quality of life. Researchers in France evaluated the long-term quality of life of Cushing’s disease patients who underwent bilateral adrenalectomy and compared it with other therapeutic options. Quality of life was assessed through three questionnaires: one of general nature, the Short Form-36 Health Survey (SF-36); one on disease-specific symptoms, the Cushing QoL questionnaire; and the last focused on mental aspects, the Beck depression inventory (BDI). Researchers analyzed the medical data, as well as the results of the questionnaires, of 34 patients with Cushing’s disease — 24 women and 10 men — at two French centers. The patients’ mean age was 49.3, and 17 had undergone bilateral adrenalectomy, while the remaining 17 had surgery, radiotherapy, or medical treatment. Results showed that patients who underwent a bilateral adrenalectomy were exposed to high levels of cortisol significantly longer (6.1 years) than those on other treatment options (1.3 years). This corresponds with the fact that this surgery is conducted only in patients with severe disease that was not controlled with first-line and/or second-line treatment. These patients also showed a lower quality of life — particularly in regards to the general health, bodily pain, vitality, and social functioning aspects of the SF-36 questionnaire, and the Cushing QoL questionnaire and BDI — compared with those who underwent other therapeutic options. This and other studies support the hypothesis that these patients’ lower quality of life may be caused by longer exposure to high cortisol levels, and “its physical and psychological consequences, as well as the repeated treatment failures,” according to the researchers. Additionally, the presence of Nelson syndrome in these patients was associated with a significantly lower quality of life related to mental aspects. The team also found that adrenal gland insufficiency was a major predictor of a lower quality of life in these patients, regardless of the therapeutic option, suggesting it may have a stronger negative impact than the type of treatment. They noted, however, that additional and larger prospective studies are necessary to confirm these results. From https://cushingsdiseasenews.com/2018/09/28/bilateral-adrenalectomy-lowers-cushing-patients-quality-life-study/
  2. MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008. In Memoriam Natalie Fay Monday, April 21, 2008 2001 Cushing's Lunch. From left: Joe (Natalie's husband), Natalie and Linda Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first met Natalie at a local lunch in November of 2001 and have seen her seval times since then. Natalie started the original "Dammit Dolls" that circulated around the country until people refused to pass them along anymore. Dammit Doll. Natalie also made counted cross-stitch Cushing's Awareness Pins: Natalie's bio... http://www.cushings-help.com/natalies_story.htm Some recent past posts. February 10, 2008 going to UVA I am going for my first visit with Dr. Hanks at UVA on the 20th. I will also see Dr. Vance that day. I haven't seen her before either. I am planning on having bilateral adrenal surgery in March. I am a little nervous about this, but it is going to be a positive thing I hope. I would love to hear from anyone who has had this done so that I will have an idea of what to expect. after surgery. Thanks! Natalie March 18, 2008 surgery update Hey everyone! I'm back! It has been a very slow week and I'm just satrting to feel like moving around again. I had BLA on the 10th and came home on friday. My parents have taken my boys (3 & 6) home to Va. I have missed them so much this week, but I think it was the right thing to do. I don't know how I would have done it without them. I am still very sore and tired at times, but I'm coming along. Sorry this has taken so long to get out to you guys, I thought things were taken care of but I was wrong. Oh Well! I'm doing good and I'll keep in touch. Thanks for all of your thoughts and prayers. Natalie Message Board Signature: pit surgery 1990 traditional 30 days radiation 1990 pit surgery 1995 sterotactic radiation surgery 1995 2004 still have remaining tumor cortisol levels still off balance BLA March 10, 2008 Tributes and Memories on the message boards... Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie - all in Cushe Colors [Photographer: Robin] Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin] Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO] Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin] Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin] Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin] Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO] Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin] Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin] Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne...and kids [Photographer: a waitress] Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne...and kids [Photographer: a waitress] TomO being silly, stealing Catherine's nose. [Photographer: Robin] http://www.wrightfuneralhome.org/index.cfm Natalie Grissom Fay (June 11, 1965 - April 21, 2008) Guest Book | Sign Guest Book Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor.
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