July 19, 2024

Taylor Daily Press

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Katya has retinoblastoma: ‘I thought I had a spastic bowel’

Katya has retinoblastoma: ‘I thought I had a spastic bowel’

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Doctors also thought she might be lactose intolerant. “All of these diagnoses made me really pay attention to what I could and couldn’t eat. The really fat stuff was one of them.” I do not go. And when I went somewhere, I always made sure there was a toilet nearby. Katya also suffered from menopausal complaints at the time. “If I had a glass of wine, my head would be like a float.” Which also turned out to be a symptom of the type of cancer she had.

On average, it takes two to three years before this type of cancer is diagnosed, explains internist and endocrinologist Hans Hovland from the recognized Center of Expertise for Neuroendocrine Tumors at Erasmus MC. “This certainly applies to tumors that originate in the intestine. Just like with Katja, people are more likely to think of spastic bowels or other non-specific abdominal complaints.”

Band aid

Three years ago, Katya also ended up in the emergency room with abdominal pain. “Then I had an ultrasound, but it didn’t show anything. If they had just done a scan, it probably wasn’t in my liver yet,” Hovland explains. This type of cancer is often not visible during a CT scan, colonoscopy, or ultrasound. “Even with a CT scan, you have to look very closely, but usually by the time we can see something, it’s already spread.”

This is also the case with Katya. She has metastases in her liver. The doctors removed the tumor from her intestines, which greatly alleviated her intestinal complaints. She also receives hormonal injections every month to stop the growth of tumors and reduce the secretion of hormones. This also has a positive effect on her body.

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She says she feels better than she did before her illness. “Cancer cells can release serotonin, which causes diarrhea and hot flashes,” explains Dr. Hovland. “The hormone injections prevent tumor growth and reduce these complaints.”

It can be treated.

“The world has opened up to me,” says Katya. “The tumor in my bowel has disappeared, I have no more pain or diarrhea, and I can eat everything again. My menopausal symptoms are much less. Tomorrow I will have another injection and I have noticed that my bowels shake more when it is almost time. My husband has noticed this too and asked me if it is time for the injection, because I turn red again when I drink.”

“It’s so strange, because I’ve never felt as good as I do now. I’m never going to get better, but I can be treated. I hope I can grow old with this. It’s taught me to live in the here and now and enjoy what I do now,” says Hovland, an internist and endocrinologist. This type of cancer is easily treatable and maintains a good quality of life, meaning patients can often live for years to come.


Katya admits she feels much better physically, but mentally it is less easy. This became clear when she had to wait two weeks for the results of her first scan after diagnosis, to see if the tumours were under control. “I really fell into a slump. I was very sad, angry, insecure, scared. I found it really, really hard.

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She hopes to feel less stressed at the next check-up and that the disease will eventually become part of her life. But as she says: “I am not a defeatist and I have hope for the future.” That is why she has started cycling again, because next year she wants to cycle in the Alps du Huez with her husband to raise money for the Dutch Cancer Society.

Heart at work

It doesn’t stop there. Katja wants to organize another campaign to draw attention to rare cancers. “I really want to do something big. I just don’t know how. I hope that if someone reads this they will help me. My wish is to get all the bikes in all the gyms in the Netherlands moving for a few hours a day for 10 euros per bike. How cool would that be?”

A picture of Katya on a spin bike. Text continues below the picture.

Katya on the spin bike

Katja is looking for people who want to help her with this big project, because money is also needed to research these types of cancer. “Pure breast cancer is quite rare, but its numbers have increased four to sixfold in the last 30 years,” Hovland emphasizes. “It affects only a few people per 100,000 per year, and it is now the tenth most common cancer. This is because it is recognized more quickly, there are more screenings, but also because it happens more often. So there is a huge need for research, and that costs money. So it’s great that Katja wants to organize this.”

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When it comes to the future, Katja doesn’t dare to think too far ahead. “Our daughter and son are now 18 and 20. The eldest has been studying in Eindhoven for two years, and the youngest will start in August. We are real adventurers, so we like changing locations. Maybe we’ll eventually want to move like that, but that won’t happen for a few years. I don’t dare to think that far yet, but I see it positively. Right now, the Alpe d’HuZes is the furthest thing I can look forward to.”

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