This is an interview with my mother. She was originally diagnosed with IBS. It turned out to becarcinoid cancer. Unfortunately, her diagnosis came too late – her cancer is terminal.
Me: So mom, you were originally diagnosed with IBS, can you tell us a little about this?
Mom: I’d been having the classic IBS symptoms for years, maybe 3 or 4. It was very embarrassing. When I went to the doctor, he ran some tests and put me on IBS medication. It didn’t work, but sometimes it doesn’t. He tried putting me on a diet just to make sure it wasn’t celiac, but that didn’t help either. So he just told me that it was IBS and couldn’t be helped.
Me: Can you describe the steps that led up to your cancer diagnosis?
Mom: The cancer was in my intestines. That’s what was causing all the bowel problems. Eventually, a combination of tumors and partially-digest food built up. Then the food backed up into my stomach and I got very ill. I couldn’t eat or drink, I had a fever, and I was throwing up. So your dad took me to the hospital.
When they looked inside, the doctors found the tumors. They also found tumors in my ovaries, liver, and abdomen.
Me: Which is when they did the surgery?
Mom: Right. They called in an intestinal surgeon who removed the worst section of the intestine. Then another surgeon took over and performed a radical hysterectomy. They took out the ovaries and the uterus. But they weren’t able to take out the liver.
Mom: Yes. The whole liver is full of these little carcinoid tumors. If they were just in part, they could cut off that part. But they can’t get the tumors out of the liver. This happens to a lot of people, apparently it’s the most common place or the cancer to spread.
I couldn’t get a transplant either, because the cancer metasticized. I’m not a good choice when there are people without cancer who could use the livers for years.
There are still mets (that’s what we call carcinoid tumors) in the intestines, but they’re not blocking it up. We keep an eye on this.
Me: Would you say it was an easy mistake for your doctor to make?
Mom: Unfortunately, it was. Carcinoid almost always starts in the GI tract, which means it can mimic IBS. And IBS is a lot more common. Doctors rarely look for carcinoid. I suppose that he could have found it if he’d ordered the right tests, but I don’t blame him. Nobody talks about carcinoid.
When I go to carcinoid conferences and talk online to other people suffering from it, one of the biggest things we talk about is making more doctors aware. Some don’t even know it exists.
Me: What are some signs that it might be carcinoid cancer, not IBS?
Mom: The biggest one is “carcinoid syndrome.” I thought it was just menopause lasting a long time.
For me, it caused hot flashes and diarrhea. It can cause breathing problems too, but I didn’t feel that. You flush, your heart races. If you’re a woman then it’s easily mistaken for menopause.
Mom: Right now we’re using all kinds of normal and experimental treatments. I’m taking medicines originally intended for brain and breast cancer. *laughs* At least I don’t have to worry about getting either of those.
The medicines I’m taking help keep the tumors from growing but they won’t work forever. I doubt a cure is going to come a long in my lifetime. Right now my cancer is stable. That’s a good start. Until my liver fails, I’m going to keep doing everything I can. Once that happens, I’ve left instructions for medicines to be discontinued, except painkillers.
Conclusion:
It’s been a tough three years since her diagnosis (Thanksgiving of ’04). But my mom is a trooper and I’m very proud of her. She’s found online forums, called up specialists, and even taught her own oncologist about the disease. She goes to conferences and reads articles. I’m sure that’s part of what’s kept her alive this long.
If you have IBS and are experiencing some of the symptoms of carcinoid syndrome, get yourself checked. The worst that can happen is that you got a needless test. An early diagnosis gives you a much better chance of surviving carcinoid cancer. My mom didn’t get that, but you can. Talk to your doctor!
