Vanessa’s Story

I remember the month and year like it was yesterday….. June 2007 when, at the age of 33 and the mother of two, I was diagnosed with Carcinoid Cancer.

Since I could remember, I had always had irritable bowels. I thought it was in my genes. Then I started having a horrible upper gastric pain, which started in, and around 2003. It was thought that I was having esophagus spasms. After giving birth in July 2004, I was extremely fatigued, hardly able to function normally at times. I thought this was probably normal considering the lack of sleep and new responsibilities I was dealing with. I never really complained or told anyone.

My bowels started occasionally getting very upset and, on occasion, I would have to take Imodium to help. I dealt with this, and the gastric pain until April 2007. My family doctor ran some blood work, still trying to get to the bottom of my extreme fatigue. My iron was low, so she started me on iron supplements. But the flushing was what made me start to worry. While I was pregnant, I frequently had these episodes, but I assumed it was all hormone related. It was so incredibly embarrassing to flush while speaking to someone.

One morning I had a case of this ‘mysterious’ pain. It was very bad, so bad in fact that I decided it was time to head to the ER. The doctors in ER kept me there for 3 days, doing blood work, a colonoscopy and an endoscopy. Because they could not find anything wrong with me, they sent me home. My family doctor decided to do an ultrasound at her clinic. It turned out that the upper gastric pain I was experiencing was due to the fact that my gallbladder was full of tiny gallstones. My family doctor quickly referred me to a Gastroenterologist. He sent me for a CT scan, to better assist him in preparing for the removal of my gallbladder (Cholecystectomy).

It was that CT scan that showed a tumour in my small intestine, with severe lymph node involvement, as well has spots of concern on my liver. Thank goodness I brought my husband with me to my follow up appointment after my CT scan, because it was then that my GI doctor gave me the horrific news that I most likely had cancer that had already spread to my liver. I was in total shock. I didn’t even know how to get up and leave his office. He was a fantastic doctor, and as I stood numb in his reception area, he called a surgeon and asked him to see me right away.

It was only a couple of days later when I met my surgeon Dr. ‘A’ in Hamilton. He booked me in for surgery only two weeks after my initial GI follow up. He removed the tumour in my intestine and some lymph nodes. Again I waited. It was at my follow up with my surgeon that I learnt I had a rare cancer, called Carcinoid Cancer.Dr ‘A’ informed me that it was usually a slower growing cancer, and if managed, I could live easily 5-10 years, maybe more. He told me he was able to remove my primary and some lymph nodes, but that it had spread extensively throughout my mesentery, and possibly into my liver. My world came to a sudden stop and was turned upside down. I remember the week waiting for the pathology on my tumour…it was incredibly sad. I finalized my will, planned my funeral wishes, and wrote in my diary to my husband and children faithfully every night.

When Dr ‘A’ told me I had a rare cancer, I was scared. My first thought was that I needed to find the best doctor for this rare cancer. I told Dr ‘A’ I was willing to travel anywhere in Canada to see a specialist. He left me that day saying he would find the best doctor, call me, and send a referral immediately. He had already arranged an Octreoscan in Hamilton. Afterwards I did my own research, and the two of us (my surgeon and I) discovered a Carcinoid specialist in London, Ontario…. Dr. ‘B’.

I had to wait a few months before seeing this specialist. I was then sent for an Octreoscan, MIBG scan, and CT scan. I did a 5HIAA urine test, as well as various blood tests. It was decided I should undergo another surgery, this time performed by a surgeon in London who specialized in Carcinoid Cancer. So in January 2008 I had my biggest surgery yet that was performed by Dr ‘C’. He was fantastic and was able to remove 90% of my cancer (at the time). In doing this, he had to remove 6 feet of my small bowel. I was followed closely with scans, and blood work over the next several months.

At one point I decided to contact the radiologist who had performed my first Octreoscan just after my first surgery in Hamilton. He had recommended in his notes that I have a F-DOPA Pet Scan, when one became available in Canada. I contacted him (Dr ‘D’), and found out he had been given permission to run a clinical study using this scan. I had this scan just weeks before I was due to have yet a third surgery…this time on my liver. It was useful in finding two tumours that were too small to be detected on any other type of scan I was given.

I continue to participate in this study. I do hope one day soon this scan will be readily available to all to help diagnose and manage their treatment with Carcinoid Cancer. I underwent my third surgery in January 2009.

Today, I struggle with major fatigue, bowel upset, gastric pain and living with the fact that currently there is no cure for this ‘rare’ cancer. I have monthly Sandostatin injections to help control my syndrome. I do have two visible tumours in my liver. And continue to be followed closely. I live each day at a time. I hope one day soon, there will be enough awareness on this cancer that funding will be made available so proper studies and trials can be introduced to help find a cure.

Vanessa