Bev Claxton's Story - Age 30
During the end of 2002, and the new year of 2003, I was pregnant with my second child. During the last few months I started to experience pains that led me to get sick in the middle of the night, every night, as well as increasing diarrhea. I just thought, well, although very different from my first pregnancy, each one is different, and between being pregnant, and being diagnosed with IBS at the age of 15, it was normal. After delivery, the diarrhea increased significantly. I went from 165 lbs (pregnant) to 125 in a matter of 3-4 weeks (normal weight would have been 140). I was still getting sick every night, and then started to experience the pain during the day as well. I spoke to my GP, he said it was probably hormonal, if it didn't get better, we would do blood work.
About two weeks later, I had blood work done, liver enzymes were elevated, and an ultrasound was booked. Ultrasound showed lesions, ct was booked. Ct scan showed tumors, MRI was booked. After the MRI, I was mistakenly told that I probably had the worst type of liver cancer possible, and had 6 months to a year to live. I was 26 years old, with a two and a half year old and a four month old at home.
They booked me for a liver biopsy the next day. After the biopsy was performed they corrected my diagnoses, to "Not the worst, as we first though, but definitely some type of cancer". A week later I received a phone call to tell me it was neuroendocrine carcinoid. When I asked the gastroenterologist what that was, he had very limited information. I was booked in to a local oncology unit on Sept 6, 2003. After meeting with the oncologist, I was told that this was a very slow growing type of cancer, they would put me on some daily sandostatin injections, they would scan me every six months, and that was all they could do. When I mentioned that I would like to get a second opinion, they told me to go ahead, it wouldn't change anything.
After calling a local cancer agency in Canada and being told they knew nothing about that type of cancer, I started to look online. There was very little information. Eventually I found Maureen Coleman’s name and a few others, and L was mentioned. I got my family Dr to refer me and met with doctors in London in January 2004.
The London team actually knew what they were talking about!! I had neuroendocrine carcinoid, primary unknown with metastases to the liver. They answered all of my questions, they gave me hope. Within a month I was on chemo and radioisotope therapy. I still go for maintenance therapy, my tumors are stable, and I feel as though there is someone who actually cares about what happens to me in the medical world.
Looking back, I believe I was misdiagnosed when I was a teenager. My mother was told I was a hypochondriac, because it was only IBS. I had my appendix removed because they thought it may be causing discomfort. All of my symptoms as a teenager were the same as now and when diagnosed, my mother told my childhood family Dr, and he said, "We didn't check for cancer in young women at that time, it is not a type of cancer people her age get".
Today, four years later, I am very fortunate. My tumors are stable, I have a very supportive family, and although I get frequent attacks of pain, they are usually well controlled with medication. Best of all, I am still here with my children. Without the advice, support and treatment in London, I don't think I would be here to write this letter.
December 2007 by Bev Claxton,
Ontario Unknown Primary, Liver Metastases