Diagnosis, Neuroendocrine cancer – small bowel.
Date of diagnosis: 10/03/2018
One night I was feeling hungry so I ate a lot of peanuts before dinner, later that night I was feeling like my food was banked up in my stomach and not going down.
I had a terrible night with indigestion, and pains in my abdomen. At around 5am, I couldn’t take any more so I took myself to local Emergency Department. They diagnosed an intestinal blockage and inserted a tube into my stomach to drain it. A CT scan revealed a mass in my ileum, the small bowel. It was a neuroendocrine tumour and the cancer had spread to adjacent lymph nodes.
The peanuts were a blessing in disguise, they had lodged where the tumour had restricted the bowel and made diagnosis easy!
Although I am an experienced cancer patient, having had treatment for Stage IV Non Hodgkin’s lymphoma over the past 25 years, I knew nothing about NET cancer.
I found NeuroEndocrine Cancer Australia to be a valuable resource, and the NET Support Nurse has been invaluable with her support and experience.
My standard treatment was a small bowel resection, then watch and wait. Because I had successful results with a personalised vaccine for my lymphoma, I had a tumour sample sent to Japan and travelled there for personalised vaccine and activated NK (Natural Killers) cell therapy.
Though follow up visits were unfortunately interrupted by Covid! In late 2021 a routine PET scan showed my disease had progressed, so I have been on monthly SSA-LAR injections since then.
At age 75, I remain in perfect health and have no symptoms from the disease or treatment. I maintain an active lifestyle and walk 10 kms most days, as well as cycle, swim, kayak and maintain my house and garden. I eat an anti-inflammatory diet and keep my weight in trim.
Because NET is a relatively rare cancer, it does not attract as much attention and funding as others. It is thus important that NeuroEndocrine Cancer Australia advocates on our behalf and pushes for more effective treatments.