Worrisome for Carcinoid. What ever is Carcinoid I thought. Since I also have pulmonary Sarcoidosis , silly me, I figured they were related.
That's what the radiologist wrote about a mass in my mesentary (I hadn't a clue what the mesentery was) - it usually refers to the small bowel mesentery which anchors the small intestine to the back of the abdominal wall. Blood vessels, nerves, and lymphatics branch through the mesentery to supply the intestine. Both lobes of my liver were also suspicious, so a biopsy was in order. Yes, I had a neuroendocrine tumor which was Carcinoid cancer. Naively I asked when the surgeon could remove the interloper. I quote, "Wny bother, it's metasasized to your liver already." So, I did what any neurotic, single woman would do when she heard the "C" word, I went on the web and started my research. I found the ACOR list and joined up. I went on the Carcinoid Cancer Foundation's website and started my search spelunking my way through the 48 states and coming up with other "experts". With great tredpidation I flew to my first, waited a week and was told that they couldn't operate, neither on the tumor nor the mets in my liver. Since I was a small girl, you could never say no to me, so I got on a plane and flew to New Orleans where I met a larger than life Doctor who drew pictures on anything he could grab including my hand. He shared the diagnostic duties with a humble, quiet man who radiated confidence and wore a rather interesting zebra tie. They asked me when I wanted to be operated on and I said two months ago. Two weeks later, I was unzipped down the middle and my primary tumor, nearby bowel, a number of large liver mets, my gall bladder and various and sundry lymph nodes were removed. I returned home two week later.
I have a curious and friendly nature and hooked up with the central PA carcinoid support group run by Teresa Lanza. Teresa is a terrific leader and her empathy and knowledge are enviable. I started thinking; there was no support group in Philadelphia - at all - there had been one but it seemed like an old Roman ruin. After talking to my dear Noid friend Deb Kilmartin, I decided to begin one. I am a Philly gal - a diehard Eagles fan, even though I live in Reading, so it was a chance to reconnect. In January of this year we had our first meeting. I had planned to hold another in March, but luck of the draw, I had a heart attack in February. So, I'm just getting back on track and I hope to organize one for June-July and in turn one for October at the Philadelphia zoo.
Lots of wonderful and caring people have come into my life since my diagnosis and I love each and every one of them for their good hearted help, caring, consideration, and empathy, and yes, their kick in the butts.
I'm inviting others to tell their stories in this forum, or ask questions, or just connect. Since I'm a "boomer" we learn new stuff slowly so bear with me. Maybe our mentors will jump in (They are all in middle school!)
The zebra we adopted at the zoo is named Suzy - how serendipitous! and every October the zoo has a special day set aside for adoptive parents of the animals.
