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Ross H., Ectopic

Don’t give up. Keep fighting. Believe. There is hope.

Dad with Cushing's

Dad with Cushing’s

I am writing this story on behalf of my father, Ross, who was diagnosed with Cushing’s Syndrome a little over 4 years ago. The many times that I read, researched, and browsed Cushing’s related websites and newsletters during his illness, I was often bombarded with terrible stories of the seemingly losing battles that families effected by Cushing’s disease encountered. I was looking for help and encouragement, and was often instead left in tears.

This story is not one of those. My dad’s story is one of perseverance, faith, and hope. Thanks to the amazing strength of both of my parents, a lot of support from extended family and friends, and the outstanding care provided by doctors at Mass General, Brigham and Women’s, and Dana Farber, my father’s life has dramatically improved over the course of the last year.

In the fall of 2006, my father started to experience some problems. He was gaining weight although he had been dieting, he was developing thickness around his neck, his limbs were becoming weak, his skin becoming frail, his strength fading. It was at this time that tests began, and he was diagnosed within a few months time with both prostate cancer and Cushing’s Syndrome. I think we were all most devastated at the thought of the cancer. Although we knew that prostate cancer is very common and often very treatable, the word itself was frightening. We had never heard of Cushing’s, and so it wasn’t until later that this diagnosis became equally, if not more, distressing.

Many people go years without a Cushing’s diagnosis. My father was lucky enough to have a doctor that picked it up immediately. After seeking a second opinion, he eventually began to see Dr. Andrea Utz who was at Mass General Hospital. From the very beginning, she had a plan in place. There seemed to be several steps to take in order to determine the cause, and then try to cure the Cushing’s. It could be pituitary, or caused by some other tumor somewhere. It could possibly be related to the prostate cancer. It seemed too coincidental that they appeared at the same time. Test after test after test. The Petrosal Sinus sampling test results showed it was probably not in the pituitary gland. There were several times when we thought we had it nailed — it seemed there was something on a chest scan — nothing. It seemed there was something in the sinuses — nothing. Maybe the prostate slides had evidence of ACTH production — nothing. We endured an emotional roller coaster ride, and after literally 3 years of testing, scanning, and searching, we still had no answers. The next step was to go ahead with exploratory pituitary surgery since the tumor seemed to be nowhere else. We had high hopes again, and once again we were let down. Nothing was found.

In the beginning, Dr. Utz had explained that we had several steps to go through. The last step being removal of the adrenal glands if all else failed. Dr. Utz was no longer at Mass General, but Dr. Lisa Nachtigall and Dr. Pouneh Fazeli who took over my father’s care continued the process, exhausting all options that Dr. Utz had explained to us. In January of 2010, my father had a bilateral arthroscopic adrenalectomy at Mass General Hospital. I will not go into all of the details, but it was no easy go. There were some very difficult days and nights, some time spent in intensive care, an ambulance ride from rehab back to the emergency room. I include all of this only to assure others that there is hope. We had hit the bottom of the barrel. Eighteen months ago my father could not get out of a chair by himself. He could not walk across the room to get to the bathroom unassisted. He could not get up from the floor after having fallen due to his weakness. His arms were covered with bruises and cuts.

Dad after treatment

Dad after treatment

And now, only 1 year after his surgery, he is 50 pounds lighter. His neck thickness and buffalo hump have faded. His once papery frail skin has returned to normal. He walks without a cane or walker. He drives, is back to work, and exercises at the gym almost every day. He goes to professional sporting events again, and attends nearly every event of his 10 grandchildren. He and my mother just returned from a 2-week driving vacation from Boston to Florida and back. His voice has the old pep in it again. He is happy. He is excited about life, and life is good.

Of course there are still many doctor visits to keep everything in check. There is daily medication that has to be carefully monitored. There is still pain and some strength lost in his legs and hands. We still don’t know what the root cause of the Cushing’s was, but we do know that he is living happy, healthy, and Cushing’s free. My father returned from a place of deep despair to be able to live an active, normal life again.

So don’t give up. Keep fighting. Believe. There is hope.

Member: 111682
Newsletter: Spring, 2011
State: Massachusetts

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