Manuela, NSW

Hi to all, I am Manuela, 64yrs old,  live in Wollongong, NSW, and have been invited to share my story.

I am 7 years diagnosed, Aug 2019, but probably had NETs long before then. I’m Stage 4, Grade 2, slow growing, Ilium primary GI nets.

I remember going to the GP in my late 40’s and telling her that ‘I didn’t feel well’;  it was always ‘a virus’ or ‘maybe peri-menopause’, but I was still ‘too young’ and my symptoms didn’t quite fit. She was disinterested, and I was basically dismissed.
Nothing was ever done and so I eventually decided to change GP’s. I found a great Integrative Doctor in my suburb.  I was so happy to find someone who would finally listen to me, and was happy to support my health and wellness with herbs, supplements, and various testing.

I first presented to the new GP after I had had a black, glossy, leathery-looking stool, and I knew that meant digested blood. GP sent me for a colonoscopy and gastroscopy, but nothing unusual was found – not even a polyp! – and nothing was done at that time.   Fifteen months later, it happened again, so I returned to the practice and saw a different doctor that day as mine was unavailable, who guessed I might have a GIST tumour – or NETs, since my dad has NETs too. He checked the checklist for candidate suitability for the Pill-cam and I qualified. Since I had had the colonoscopy and the gastroscopy previously, the pill-cam was the next step, as both of the previous tests check the mouth to stomach, and anus to Ilium – the pill-cam would check all of the small intestine, too.

I went to hear the results and remember the specialist’s face when he told me I had a stage 4 tumour…but “not to worry, people live a long time with these. I have a lady who has been living with it for 8 years already, and she’s going well”.  How does a newly diagnosed patient deal with that? ….by being tortured with blood tests, urine tests, CT scans, biopsies, and all the things, while in your mind you’re dying, that’s how! It was an awful time. Lots of tears, lots of disbelief, and just “no!”

I ended up in hospital to have my biopsy under anaesthetic as I wouldn’t let them take another stab because they “didn’t get enough cells” the first time!  While I was there, the surgeon removed not only the tumour in my navel hernia, but other lesions throughout, and mended my protruding belly button.   When all the results were in, about a month later, the local Oncologist started me on Octreotide (Sandostatin) injections every 28 days. Stage 4, Grade 2, lots of disease, but slow growing.

It was around this time that I was introduced to the St George Hospital team as I needed to travel to St George to have my 3 monthly Dotatate scans, and have the whole Multidisciplinary Team (MDT) consult together over my case.

I was told there was a NECA website, and lots of information was available there. I‘m not sure how I first found the NET Nurse. I do remember logging into the Zoom meetings they hold, and connecting with other patients, many of whom I’ve met face-to face. It’s always great to have the support, and a listening ear of the NET Nurse and just chatting to her is comforting and reassuring.  They have heard so many of my issues, and I enjoy chatting with them.

Anyhow, the jabs came with their own set of fun and games, side effects, and symptoms, but they held me stable and relatively well for 4 years til the beginning of 2023. The injections weren’t holding me anymore, and so I was sent for Lutate (PRRP), at St George. I had 3 cycles, with a good outcome. Tumours were shrinking, and I had stability for about 2 years.

I was not on injections for the time after lutate, but needed to go back on Sandostatin due to some growth in Sept of 2025. Early this year I was experiencing a lot of pain in my right, lower abdomen, and was sent for an ultrasound. The scan showed that there was something going on with my ovary. Further scans were taken, and in April,  I was referred to a Gynaecological Oncologist who booked me into Prince Of Wales to be operated on the following week!  I had a Radical Hysterectomy having all my reproductive organs removed, and a few reachable and removable tumours excised. The ovary was a full 10cm neuroendocrine tumour!  I have the photo!

In the months following my surgery there has unfortunately been more growth and progression of tumours, with some new ones popping up in the weirdest places! There has been some talk of CapTem chemo tablets as my next line of treatment  – actually there has been talk of it for a while.

I have agreed to a stronger dose of Sandostatin for now, as I am a bit hesitant of chemo. If this new dose doesn’t stabilise things, I will probably join the other CapTem-ees out there, but the Oncologist has agreed to give me a ‘nice Christmas’ before my January scan, and further potholes in the road to recover.