Knowledge Hub
Knowledge Hub
Jenny's story – small intestinal NETs running in her family, and the path to genetic testing and ongoing care.
Neuroendocrine Cancer New Zealand asked patients to share their stories for World NET Cancer Day. Here, Jenny shares her family story:
I guess as a Neuroendocrine Cancer patient diagnosed with a small intestinal NET in the ileum - Grade 2 in 2010 (my youngest child of 3 was 6mths old and I was 39yrs old) I want to share:
1) We have to be our own advocate (that isn’t an easy job and at times you feel really alone)
2) An operation to remove an SI NET isn’t always curative in fact very seldom even when it hasn’t spread at the time of resection (we learn to live with the prospect of it possibly arising in other areas of our body)
3) It is not an older person's disease
4) Despite the fact I was told my family would never have to worry about this disease as it is not familial I have learnt it can be, yes the experts were wrong in our case. There are studies looking at these links now, they are happening overseas.
5) My Mum had issues with her stomach for years, she asked me what the thing was that I had as she should tell the doctor in case she had the same - I said “you won’t have that, it’s really rare and anyway the doctor said it’s not familial” It was, in our case.
6) In 2019 Mum had some tests done for issues unrelated to the bowel symptoms she had experienced, they found a mass in her bowel, further testing showed spread to mesentery, liver, ovaries, appendix and other areas. The mass was in her Jejunum (The middle part of the small intestine. It is between the duodenum, and the ileum). She had a bowel resection in 2021. She was Grade 1.
7) Mum's liver lesions had been there in a scan many years before and nothing was ever said or investigated.
8) Here's the thing that may surprise some people - Mum had been regular with colonoscopies for years however the scope doesn’t go as far as the jejunum so the cancer wasn’t found!
9) When I was diagnosed back in 2010 I was told my cancer was rare 1:150,000. We don’t call it rare these days as 1 person is diagnosed every day in New Zealand. We now call it uncommon, not rare.
Life is a journey, a journey of ups and downs and my aim is to help raise awareness of the tricks this disease can play. Maybe you will remember some of the whacky facts or photos I’ve posted on my story today. I hope this information may assist others in being diagnosed earlier.
Jenny x
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