I was diagnosed with NETS in May 2017, a biopsy of my ovary revealed the news. It was almost a relief to know why I was experiencing the symptoms I had been having for years which had eventually culminated in me having a carcinoid crisis, and after removal of my ovary a code blue. A scan revealed multiple tumours throughout my mesenteric, liver, bowel, ovary, lung and nodes.I was sent to Perth, had further tests and after about a week returned home with surgery scheduled.
For country patients we have the added challenge of being away from family and friends and my family had to spend periods in Perth when I was hospitalised, not only stressful and expensive but their lives were put on hold too.
I started on Sandostatin LAR 30mg, every 28 days, after my initial diagnosis, which has been effective in controlling some of my symptoms. I am on the SHINE program which I have found fantastic for me. Right from diagnosis I have been very lucky to have been cared for by medical professionals who knew all about NETS.
Prior to my physical deterioration and diagnosis I was enjoying a very full retirement, all of which came to a sudden end. Initially I could not accept my diagnosis and with limited information had no idea of outcomes, I had lost control over my life.
I found the recovery time from the second surgery in Perth very difficult. I was scheduled for removal of the primary NET (small bowel), hysterectomy and removal of the second ovary, a piece of my liver as well as removal of various nodes and anything else they could get. I ended up with removal of part of my small bowel and liver and very little else because the blood supply to my organs was compromised. Six months later I was referred to FSH for PRRT because the little buggers were still popping up in my liver and elsewhere.
By Feb 2018 I felt desperate, frightened and very sick. My daughter and husband took me to a NeuroEndocrine Cancer Australia Support Group meeting in Perth and I will forever be grateful for the support and reassurance of the Perth members, Kate’s support and to Simone who was my advocate and ensured I got PRRT which has turned my life around. I am now 8 months post treatment and I am regaining my energy and my usual optimistic attitude, something I would not have believed possible 2 years ago.
Currently I am on a mission to have a fundraising stall in November, funds raised to go to the NECA research fund. I am also hoping to start up an informal support group for the South West of WA with the support of my daughter.
My advice to newly diagnosed patients is to look forward and not give up, learn as much as you can about your cancer, remember we are all different so don’t compare yourself to others. Notice as I did, that many of the NeuroEndocrine Cancer Australia members have been around for years so why shouldn’t you? My personal aim is to make the most of every day, not waste my time on things that are not important, and still be here in 10 years at least.
