At least that is what the oncologists at Sloan Kettering (Dr. Reidy) and Dana-Farber (Dr. Kulke) said. Well, one dermatologist in Morristown, NJ disagrees with them.
This past month, in addition to increased pain and my usual flushing, fevers, night sweats and nausea - my face broke out with deep, painful welt-like cysts. (Thanks body - you're really on a roll.) At first, I tried to ignore it - angry at myself for being so vain. No matter how I tried to "get over it" however, the new acne made me depressed... which in turn made me feel even more like a narcissist and less like a strong cancer survivor. I decided that there was only one thing to do. Get a dermatologist.
I had been putting off seeing a dermatologist for awhile - Dr. Nash had suggested back in September that I seek one out for an alternative explanation for my "hot rashes" ... ( I began calling them "hot rashes" instead of flushing after Dr. Nash and Dr. Reidy assured me that it was highly unlikely that I had carcinoid syndrome.)
I did a lot of research, and found one of the most respected dermatologists in the state: Dr. Robert Marinaro.
As soon as I met Dr. Marinaro, I liked him immediately. I explained that I had been diagnosed with carcinoid cancer about 15 months ago, but that my tumor was surgically removed, and that my doctors were pretty confident that I don't have carcinoid syndrome. I explained that I wanted to discuss possible alternative causes for these "rashes" I was getting, as well as figure out a treatment for my cystic acne.
I was expecting him to ask me what carcinoid cancer was; he didn't have to - he knew. Over the next 45 minutes, he asked all the right questions, including what my 5-H1AA levels were (normal) and did I have bouts of diarrhea (no, because I have nerve damage from the resectioning of my colon). After an extensive dialogue about my condition, I was preparing for him to say either 1. he had no clue as to the underlying cause of my symptoms, or 2. I had some sort of an autoimmune disease, like Lupus or Hashimoto's disease.
"I think you have carcinoid syndrome" Dr. Marinaro said, without a hint of hesitation.
"But the doctors all say I don't" I replied.
"Yes, I know - but what you are describing is carcinoid flushing; I think it's carcinoid syndrome."
He went on to explain that if he had to guess, my body was just overly sensitive, and while the increased serotonin wasn't enough to spike my blood work - my overly sensitive system was reacting to the fluctuation as if the levels were highly elevated.
This explanation makes total sense. To say my body is "sensitive" is the biggest understatement of the decade. I can't tell you how many times a doctor has said "there's almost no risk to this - I see no likelihood of any complications" only for my body to prove them wrong, time and time again.
Dr. Marinaro proposed a new treatment for the cystic acne that was an "interesting option" for someone with carcinoid syndrome - a daily dose of 100 mg of Spironolactone, which is primarily used to treat high blood pressure (my blood pressure is on the low side 90/60), but can also be used to treat a hormone (aldosterone) imbalance.
I started the medication, and while I'm a little paranoid about some of the side effects - so far so good. My skin already looks and feels a lot better, and while I haven't noticed any changes in any of my other symptoms, I guess we will just need to give the medicine a little bit longer to kick in before I can really evaluate it. My next priority is to find a good endocrinologist and reschedule my heart stress test.
Update Dec 16th
My skin is miraculously healing and clearing on the new medication. My fevers and night sweats are still rampant, as is some flushing, but my energy level is much better - even though the nausea is back with vengeance. But hey, I'll take clearer skin and more energy for now!
I got the name of a few endocrinologists from the ACOR board - none of whom take my insurance. I did finally find one doctor in Hackensack with my insurance - I'm calling her, and the cardiologist, on Monday.