Suzanne’s Story

My name is Suzanne Stinson. My journey with NETs began in December of 2003 with severe diarrhea and flushing. This went on for a couple of weeks and then one night I had severe indigestion that kept me up all night. I went into work the next day but had to leave by noon because the pain was so bad. I drove myself to the hospital and they took me right away. My husband was called. He arrived just as I was going for my ultrasound.

I thought it was gallstones as I had just lost 60 lbs while on a diet. After waiting for quite awhile for the results, Brian and I were brought into a quiet, little office and given the news that they had found a tumour about the size of the palm of my hand. To confirm it was a tumour, they did a CT scan, which came back positive. The surgeon who was on call that night was tied up with another patient, so they sent me home with a prescription for the pain and something for my indigestion. They were going to call the surgeon’s office the next day to set up an appointment for me.

The appointment was made for one and a half weeks down the road. I finally got to see him and after spending some time with him, he said he could not take me because my case was out of his range. He referred me to a surgeon at another hospital. I waited another 3 weeks to see him. Because my records were not transferable, this new doctor had to do my CT scan again. This took about another 3 weeks and then I finally got to see him. He was worth waiting for. My surgery was booked for the following week.

The surgery involved taking out the body and tail end of my pancreas. He also removed my spleen and gallbladder. What he wasn’t expecting to see was the portal vein, which is the main vein to the liver, entangled into the vein that was feeding the tumour. So a vascular surgeon was called into the operating room to detangle the vein. My surgery took 6.5 hrs.

My recovery was not a smooth as I had hoped. I was in the hospital for about a week and a half and then discharged. But I returned to hospital early in the morning of the next day because I was vomiting and running a fever. They readmitted me. After a few days in hospital, I started having pain in the area where the pancreas was. They did a MRI only to discover I had fluid buildup in the cavity of the surgery site. A drain was put in and after a few more days in the hospital I was discharged with a drain attached to me. After a few more days at home I started to feel ill again and had more cramping in the same area as before. So I went back to emergency, only to be told I had a blood clot near my liver. I was admitted again, and started on fragment shots. I was in the hospital for about a week and then sent home.

Well, I got to sleep in my own bed for three days and then had to go back to emergency with severe vomiting and diarrhea. Blood work was done and a stool sample taken. Of course they admitted me again, and about 24 hours later, I was told that the results from the stool sample and blood work indicated I had MSRI. For those of you who don’t know what MSRI is, it’s a bacterial infection you can get from taking strong antibiotics and can pick up from hospitals. After 2 weeks in the hospital, including being in isolation, the drain was taken out and I could finally go home.

Things were going well. It took several months for me to get my strength back and to start feeling normal. I finally returned to work.

I was followed up every 6 months for about a year and a half. Yearly, I had an octreotide scan and visit to my radiologist and oncologist. Two years after being diagnosed, I was referred to Dr. X at a London Ontario Hospital. Dr X followed me yearly.

I never felt well after my surgery. I was always tired and had bouts of nausea, flushing and diarrhea. I did not know this was part of carcinoid syndrome.

My yearly check ups were always good, until my four-year check up. I had started having pain in my hip and went to my family doctor. She sent me for x-rays and they came back showing arthritis in my right shoulder, wrist and knee. I let it go and continued to live with the pain. I had my usual octreotide scan and then went for my appointment with my radiologist. I wasn’t expecting anything but, when my radiologist came in to the room, he told me that I had two spots on my liver. He mentioned radio frequency ablation but thought they were too small. He said there was nothing to worry about and that they would watch them. I also told him about the pain in my hip. He examined me but didn’t think it was anything to worry about.

So six months went by and I went for my yearly check up with Drs X & Y at my London Ontario Hospital. I had my octreotide scan and then went for my appointment the next day. They spotted the lesions on my liver that were now about 1cm with some a little larger. Something else they found, that I was not expecting, was bone cancer in my right hip. That explained the pain. They sent back a report to my radiologist suggesting RFA and radiation on my hip. My daughter was getting married in August and we had a busy couple of months. So I decided to put off the RFA and radiation until after the wedding. I have had one more round of radiation since then and have been put on Hydromorph Contin, Lyrca and Dilaudid for pain.

It is now 2009 and I still have the lesion on my hip. The pain, however, is well under control. I have started monthly shots of Sandostatin LAR . Currently, I am waiting for results from an MRI on my left knee. My oncologist thinks it is cancer related, but I am remaining optimistic that it is just a pulled ligament. I will keep you updated.

Suzanne