What's Wrong with Martin Sullivan

I've decided to try and write a little lay-man's guide to what's wrong with me and explain what may or may happen next. At the time of writing I am 52 years old; a non-smoking self-employed computer consultant who formally travelled extensively.

If you, dear reader, are a clinician or scientist and are interested in a somewhat more technical discussion of what ills me, the please do send an e-mail to me using the address you'll find on my (Martin Sullivan's) public biography page. I initially was a Biochemist/Physiologist and although it was 30 years ago I can still understand the jargon.

Carcinoid Syndrom

I'm suffering from Carcinoid Syndrome. Before you hurtle off and Google for this, I thought I'd try and give you a brief nontechnical introduction. The executive summary is I have a rare not-quite-cancer disease that I will have to manage for the rest of my life. The prognosis is good but along the way the disease caused me to have radical surgery (in Denmark, I don't seem to have surgery in the UK). It also made me quite, quite ill. Here I describe what disease I've got and at the bottom are some links for more information, if you're that interested.

A Carcinoid is an Endocrine-active Neoplasia, so you're none-the-wiser and this was supposed to be nontechnical. Neoplasia is an all-encompassing term that covers cancer and other pathological (that's bad) cell growth. And there's the 'C' word. We'll come back to that.

I had a tumour in my Cecum, that's the very first bit of the Colon (large intestine) where the Appendix is connected. This has been removed along with a sizeable part of my Colon, part of my Ilium (small intestine) and my Appendix. The tumour was discovered in Denmark when it ruptured the Cecum wall

Although the tumour found in my Cecum was removed cells from it have spread to my Liver and multiplied, subsequently secondary tumours are now found there. In this respect my illness is just like a regular cancer and these Metastasis, as they are known, are largely inoperable.

The tumours in my liver appear (for the moment) to be very slow growing and thus not like a regular Cancer. One cannot really call what I've got Cancer for it doesn't really do justice to the unfortunate people who have the "real thing". The more correct term for what I have is secondary carcinoid tumours (or Carcinoids for short).

Things do get a little more complicated with Carcinoids for they are Endocrine active, that's to say the produce Hormones. Hormones are chemical messengers that various cells in various organs of the body send out as a means of communication. The Carcinoids in my Liver are apt to produce some Hormones in an uncontrolled manner with no particular reason to do so. Although a soup of Hormones is released there's one in particular, Serotonin, which causes problems. It causes blood to rush to the periphery of my body, the hands, feet and skin (where it makes me very pink in the face). Some times the stimulus is so strong that the heart is starved of returning blood and my blood-pressure drops. On those occasions I felt very dizzy and need to lie down with my feet in the air. These days it prompts a visit to the local A&E Department and a precautionary night or two in Hospital.

Serotonin

Since I was diagnosed, I have been treated with an artificial Hormone (known as octreotide) which suppresses the release of Serotonin by the aberrant carcinoid cells. It thus reduces both the likely hood and severity of any future carcinoid crisis. I also take another drug (alpha-interferon) which is known reduce tumor activity by boosting the immune system. It also has to be remembered that I was probably carrying this disease for a considerable time before it was diagnosed and was unaware of any problem.

Lately (in the past three years) I've had a series of minor operations which have succeeded in debulking the liver processes. Although deemed minor, these operations have made me somewhat ill, and have triggered Carcinoid Crises in their own right. I have thus been on an extended health sabbatical since 2007.

Further Information

• http://www.carcinoid.org. Computer literate Carcinoid sufferers exchange information and publish non-medical-jargon papers from largely US-based specialists.

• http://health.nih.gov/topic/CarcinoidTumors. National Institute for Health in the US. This is a portal to actual sites in other places that have further information on Carcinoid Syndrome.

$Date: 2009/11/18 10:57:53 $