This page was last updated Sunday July 22, 2007
Now - July 2007 (includes current medications)
Background Info
This website is mainly concerned with our experiences with the Carcinoid illness. If you want to see our other pages that tells more about us, then please click here.
I had a Carcinoid tumour removed in October 1999 and as you will read below I am yet to return to full health. I haven't had any further Carcinoid diagnosis's, and touching wood I won't, so this is my limited experience with the illness. (So much for the wood touching, see July 2003 below)
Most people and doctors I have spoken to have never heard of Carcinoid. I have been the first Carcinoid patient for many doctors in Adelaide. They often looked at me as if I had 2 heads and stated things like "I studied this in Med school but you're my first" and then reach for their textbooks from 30 years ago. Or you have a pimply 3rd year med student looking at you like they want to take you to show and tell at their next lecture.
After my first Adelaide GP retired, my current doctor said I should get on the Internet and find out what I can to help him in deciding how to manage my health. (the internet has and still is frowned upon by many doctors I have known as a waste of time, due to the amount of incorrect information). However, I have come to know a few people via the internet with major health problems associated with Carcinoid cancer. Due to their prompting, and also from the lack of information available from the medical profession and cancer websites in Australia, I have decided to tell my experiences with Carcinoid.
Hopefully you'll find it factual, helpful and maybe even have a funny bone tickled occasionally.
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When Brett first got sick
I went to my GP in September 1999 after feeling unwell for about a week after returning from a trip to my parent's place in Coffs Harbour on the Mid-North coast of New South Wales. I first thought it was a case of too much good food, wine, sun and golf, but I had never felt this bad all over. The things I mentioned to my GP over a number of visits were:
| Stomach Pain (Right side) | Heart burn | Nausea/Vomiting | Eyes hot |
| Headaches | Skin rashes | Diarrhea | Blurred vision |
| Foggy head | Ringing in my ears | Out of breath | No appetite |
| Tired | Sweats | Fainting | Blood in vomit/faeces |
| Varied blood pressure | Little red spots on stomach |
I had the normal blood tests with a Cholesterol of 6.5 being the only thing of note. I had a chest x-ray plus the wonderful experience of a Barium Enema. All were clear so I was referred to a Gastroenterologist. After being on a strict diet with no improvement I then had an Endoscopy and Colonoscopy in mid October. The results were a grade 2 ulcer in my stomach and a polyp removed from my rectum. On testing the polyp turned out to be a Carcinoid tumour. More tests had to be done on the polyp, but after a normal CT scan and 5HIAA test I was pronounced cured, with a follow up colonoscopy in 18 months to be on the safe side. The doctors said I must have had a bad virus that caused Irritable Bowel Syndrome (IBS), or chronic fatigue, or stress, or ...
I still felt like something the cat dragged in, sniffed it, thought better of it and left it on the carpet, but eventually returned to work in January 2000. I was still dieting, trying Naturopathic, Homeopathic, Chiropractic, Acupuncture and "normal" Western medicine treatments all to no avail. I had improved, I could function. I worked in Whyalla with the temperature at 45 C for a week and started playing and coaching Rugby Union again, however I still had (and have) what I term as my normal conditions:
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Pain in stomach on my right side from hip to under my ribs. |
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Explosive diarrhea (great mental image - not just liquid poo, but liquid poo that explodes from your bottom). |
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Hot eyes and face - now termed as Flushing by my doctors but still reminds me of something my Mum has with her "change in life". |
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Occasional lack of energy, appetite. |
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Short of breath (I could often run around a Rugby field with my Under 8s and the magnificent rugby club that is Souths, but sometimes I can't blow a candle out after walking 5 steps). |
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Tinnitus. |
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More and more little red spots on my stomach, back, arms and legs. |
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Waking up with an enormous hangover, but not enjoying any beverages from the night before. |
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And the occasional fit of being a cranky bastard for no apparent reason, according to Michelle. Mum said its just a Watson male trait. |
I have had repeated episodes of my September 99 symptoms that have forced me to be away from work (and Rugby), and to be an unsociable zombie in May to June 00, July to October 01, January to February 02 and now May 02 to today. I have been referred to various doctors and have had x-rays, blood tests and apart from one slightly elevated 5HIAA test in November 2000 and a cholesterol of 9, all have been at the high end of normal. I've seen Psychologists, counsellors and they say I'm depressed because I'm ill and not ill because I'm depressed. At times I feel like I've just lost the plot and have become a hypochondriac.
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July 2003
Diagnoses:
|
October 1999 |
Carcinoid tumour removed from rectum |
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August 2002 |
Benign tubular adenoma removed from rectum and significant nodular lymphoid hyperplasia in terminal ileum |
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October 2002 |
Carcinoid Syndrome with unknown primary |
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January 2003 |
Skin cancer removed from the side of right eye |
Tests:
MIBG and MRI still unable to confirm location of primary carcinoid. Did confirm
that my Pancreas is abnormal and fatty spots on liver and pancreas and a
distended gallbladder. My doctor does not want to subject me to a barrage of
testing. Instead I have various blood tests for glucose, thyroid function,
vitamin, urine on a 3 monthly basis and yearly MRI, MIBG, Octreoscan.
Medication:
Sandostatin 200 mcg at 7am & 3pm, Sandostatin 100 mcg at 10 pm by
subcutaneous injection.
Morphine Sulphate 20 mg twice a day (capsules).
Ventolin, paracetamol when required.
How I'm Feeling:
Occasional diarrhea, daily steatorrhoea (floaters that take 2 or 3 flushes of
the loo), facial flushes that last for 1 to 2 hours every day with left ear
flutters. More and more little raised red spots. I'm very tired and still having
a lot of pain on my right side around my ribs, some headaches, nausea and a lot
of severe joint pain in fingers, wrists, elbows, feet and hips. Needle sites
very bruised and painful - have bent one needle trying to inject on the left
side of my belly button. Working in the Viticulture industry when I can.
Main contact for Cancer Council of South Australia for Carcinoid.
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January 2006
Diagnoses:
|
October 1999 |
Carcinoid tumour removed from rectum |
|
August 2002 |
Benign tubular adenoma removed from
rectum |
|
October 2002 |
Carcinoid Syndrome with unknown primary |
|
January 2003 |
Skin cancer removed from the side of right eye |
| August 2005 | Voted sexiest 40 year old in the house |
Tests:
Octreoscan due mid February 2006
Past scans (MRI, Octreoscan, CT) confirm previous findings.
Blood tests say everything is ok but do fluctuate from time to time with vitamin
and mineral issues
Lung and Exercise tests have confirmed that I do not have asthma.
Medication:
Sandostatin LAR 30 mg by intragluteal injection every 28 days.
Sandostatin 200 mcg by subcutaneous injection when required.
Morphine Sulphate 40 mg twice a day (capsules).
Endone
How I'm Feeling:
Still have a lot of problems with pain in the lower tummy area to the right both
front and back and just recently (since Xmas) in my right groin.
Much the same in respects to toilet issues, flushes, red spots, and joint pain.
Tinnitus is getting worse
Have a lot of trouble sleeping and feel generally tired most of the time,
although when I feel good I feel great.
Main contact for Cancer Council of South Australia for Carcinoid.
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Now - July 2007
Diagnoses:
|
October 1999 |
Carcinoid tumour removed from rectum |
|
August 2002 |
Benign tubular adenoma removed from
rectum |
|
October 2002 |
Carcinoid Syndrome with unknown primary |
|
January 2003 |
Skin cancer removed from the side of right eye |
| August 2005 | Voted sexiest 40 year old in the house |
Tests:
Past scans (MRI, Octreoscan, CT, Colonoscopy, All over Bone scan) confirm previous findings.
Blood tests say everything is ok but do fluctuate from time to time with vitamin
and mineral issues
Having an Octreoscan, MRI and Colonoscopy every 12 months.
My Oncologist is still considering a PET scan once a reliable Carcinoid
"friendly" one is availble.
Medication:
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For Carcinoid Syndrome
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For Pain
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Since being on Valpro (Sept 06) I have not needed the Endone as much, as the frequency of my stop you in your tracks, bring tears to your eyes, stabbing pain in my right lower tummy area has reduced dramatically. My pain management specialist would like to move me of Kapanol and onto Oxycontin as he believes this will be a better mix.
How I'm Feeling:
Increased pain in my right groin and middle to right of my tummy under my ribs.
Having more intense flushes, nausea, breathing problems and heart palps, and
increased toilet stuff towards the end of my Sandostatin LAR cycle so I'm onto
injections every 3 weeks instead of the normal 4 weeks. Much the same in respects to
red spots, tinnitus and joint pain.
The kids and Michelle have been great and Brodie has definitely given me (and
everyone) a breath of fresh air and is keeping us on our toes. My Mum and Dad
and family have been very, very supportive.
Main contact for Cancer Council of South Australia and Cancer Care Centre for Carcinoid.
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