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Being diagnosed with cancer was like being let in on a secret

After being told she has a rare tumour, nurse Bethann Siviter turns to Google for answers

After being told she has a rare tumour, nurse Bethann Siviter turns to Google for answers


Photo: Science Photo Library

The path to finding out you have cancer starts with not being invited to join a room full of people who’ve never met you, known as the multidisciplinary team (MDT): they find out before you do and make decisions about you without you being there. 

In my imagination the MDT are like the gods on Olympus, discussing their plans to meddle with mortals.  

After the MDT meeting, a doctor let me in on the big secret. ‘You have colon cancer,’ he said, and then after an uncomfortable moment added, ‘Although it's not colon cancer. It’s a NET. So we are referring you. They’ll take over your care’. 

He then smiled and stared at his computer.

Specialist nurse perspective

I summoned the god of knowledge (Google Chrome) to explain what a NET (neuroendocrine tumour) was. I discovered that my cancer is colon cancer (it is in my colon, after all), but because it is a neuroendocrine tumour – and they behave atypically – it is treated differently.

How typical of me to get a rare, cranky ‘punk’ tumour.

‘NETs are harder to locate than other cancers so are usually found late. I’m lucky. Sort of. My tumour has decided to become an attention seeker’

Fortunately, I found the NET Patient Foundation website. Their helpful and informative specialist nurse explained it all. Because NETs are complicated, only certain hospitals can manage them, which was why I was being sent to a ‘Centre of Excellence’. 

There I found yet another helpful and kind specialist nurse: up until this point the model of care had been medical, so having nurses’ support felt wonderful.

The cancer that just keeps on giving

I learned that a NET forms from neuroendocrine cells in major organs; these cells are part of the communication between the endocrine and neurological systems and both release hormones and act on those released elsewhere. That they secrete hormones is part of what makes a NET such a problem to manage.

Doctors used to believe (wrongly) that NETs wouldn’t advance like ‘normal’ cancer. This was because NETs are so good at camouflage – they are much harder to locate than other cancers so are usually found late in the disease. 

I’m lucky. Sort of. My tumour has decided to become an attention seeker: it secretes hormones that have caused something called Carcinoid Syndrome.

Imagine having the menopause, the flu, appendicitis, post-curry bowel evacuation and a hangover all at once. That’s how well you wish you could feel when you have Carcinoid Syndrome. See how special a NET is? It’s the cancer that just keeps on giving.

Looking for answers

Steve Jobs and Aretha Franklin had neuroendocrine cancer – one report I read said Apple co-founder Jobs didn’t disclose it was NET because no one understood the term. Did you, before you read this?

I hadn’t ever heard of NETs or Carcinoid Syndrome. Hopefully, writing about my problem will help other people get better care because people like you will be better informed.

I now have a wonderful and patient consultant who needs more information before deciding what to do. Because of resources, I have to wait until September for a special PET scan that will show other lesions. In the meantime, the best I can hope for is symptom control and my nurse is working on that.

Traditional scans don’t show NET masses well, so although the initial scans suggested it was early, I hope the next scan will tell us everything we need to know.

Having said that, what I really need to know is why all this is happening to me, but I suspect that won’t be one of the answers.

 

Part one: Colon cancer from a patient’s perspective


Bethann Siviter is an independent nursing consultant

 

 


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