My NET journey began (officially) in March 2022. I had been feeling unwell for some time but nothing specific, a bit nauseous, a lot of flushing (which I thought was probably something to do with menopause) and diarrhoea. I started repeat trips to my GP in Jan 2021. Initially I was treated for indigestion, then was sent to pathology to check if I had a bug in my bowel which was clear. My Dr started treatment with some herbal drops for IBS. I presented the Doctor with a diary of my week with details of my severe diarrhoea which had worsened about July. Her response was but that is only a week, and I said that is what every week is like. This didn’t seem to worry her or raise any flags that she should be investigating further. She asked me if I was stressed to which I replied I had a busy job I no longer enjoyed but didn’t class that as stress as I was retiring in December 2021 so I didn’t think it was an issue. She said to come back in January 2022. My symptoms were unchanged in January and I saw a locum Doctor who thought I could be coeliac so sent me for an ultrasound (the first investigation for which I was referred) This came back showing some lesions on my liver. To confirm what they were seeing I was sent for a CT. I returned to the Dr (another locum) for results of the CT who advised me I had bowel cancer. She said was sorry about that and advised me if it was any consolation my case would be discussed at a practice meeting as a ‘near miss’
The next day I had a phone call from the Launceston General Hospital advising my GP had requested them to review my file sooner rather than later. They made an appointment for a colonoscopy which didn’t show anything other than a couple of polyps which were removed. After multiple tests, endoscopy, another CT of my stomach, pelvic ultrasound, plus CT of thyroid due to indeterminant hypodese lesion, 2 biopsies of thyroid, biopsy on my omentum, 2 Scans in Hobart, 24 hour urine test, blood test chromogranin A, it was finally determined on 2 March 2022 that I had G1 NET likely of gastrointestinal origin. I had 2 spots in liver and several in omentum. This could not have been worse timing as my Mum had died of Stage 4 bowel cancer on 28 February 2022 after being diagnosed just 4 weeks earlier.
I was started on 30mg 28 day injections of Octreotide which has reduced my symptoms. I tolerate the drug reasonably with little side effects. I have only had 1 injection where the site was painful for 2 weeks! Most days I just get on with things and this disease does not stop my life. At times it is hard to believe anything is wrong, other times you can dwell on the prognosis if you aren’t careful.
A CT in January 2023 determined my condition was considered stable with the liver metastases now cystic in appearance, similar size, likely response to treatment. A further CT in May 2023 indicated liver lesions as slightly smaller but increased in attenuation, presumably ongoing response but the increase in density could indicate some active tumour within these. The omental and mesenteric nodularity appears stable compared to Jan 2023. A recent ECG and check-up with Cardiologist confirmed no heart disease, my heart is very healthy.
I am scheduled for a PET scan in November then further follow up with my Oncologist. She is happy with the stability of the disease at this point. I know I should probably ask more questions but not sure what, then I often think of questions in between appointments. My symptoms are reduced, with only occasional ‘incidents’ and sometimes I have what I call ‘off colour’ days when I just don’t feel as well. The disease rarely stops me from getting on with life and doing what I always have. The best thing we did was retire in December 2021 and we are busier than ever, how we ever found time to go to work beats me. We enjoy gardening, caravanning and our 2 gorgeous little grandchildren so our days are full.
The treatment I have received at the Launceston General Hospital and WP Holman Clinic has been amazing and I have faith in my Oncologist and that they will point me in the right direction if and when I need further or different treatment.
I hope that further awareness of this cancer highlights the need to governments of all levels that there is a huge discrepancy in funding (or lack of) when you compare what breast or prostate cancer receives but NETs receive nothing in the way of support for patients. I also think a dedicated NET nurse in Tasmania is essential as one nurse nationally for 25,500+ patients is crazy.
Living in Tasmania I think there is also a feeling of remoteness and isolation due to the distance between us and mainland Australia. There are over 700 NET patients living in Tasmania, a local NET Nurse would be able to facilitate support groups around Tasmania, this would be highly beneficial for myself and other patients as we could meet and chat about treatments, side effects and symptoms. Other than the people I met in October 2022, at fellow NET Patient Rob Hammonds Racing for a Cure fundraiser, I have yet to meet another patient, we must be very elusive.
