At the end of February 2010, two and a half weeks post surgery for a left hemi-colectomy my husband and I were taken into one of the numerous waiting rooms at the surgical outpatient’s clinic. We waited and waited. A nurse came in, apologised for the delay, stating that they were waiting for my notes to come down as they had been at a case conference. Being a nurse I knew I was in deep doggy doo.

 

We were informed that I had a malignant carcinoid tumour, larger than the 3.5cm that they had measured by colonoscopy and that 8 out of 10 lymph nodes were infected plus serosal deposits. The surgeon informed us that this was only the third time she had come across this, her knowledge base was small, that there was no treatment, to research it on the net, live each day to the fullest and do everything we had been putting off. WHAT! My man went white and I just went numb. We had been preparing ourselves for possible chemo or radiotherapy post bowel cancer as worst-case scenario, but not, no treatment. We had been getting mixed messages prior to surgery from the surgeons, which included possible cancerous growth to probable cancer to most likely benign. We were not prepared for this.

 

I was still ill and my mother had died in hospice from cancer just prior to Christmas, so neither of us was in the best of mental places. So the search began and normally I would have done better but brain was mush and lack of sleep was not helping. What I found out was fascinating and suddenly the last 5 or more years started to make sense. The frequent ‘stomach bugs’ with no pathology when I did bother to follow it up. The gripping pain, the fainting with pain that went with it and explosive diarrhoea. First admission to ED two and a half years prior when I collapsed at work with the above and a blood pressure that had dropped to unreadable. I was in for 6 hours on morphine for the pain but no follow up. I can take partial responsibility for this as I self reported that I had ‘probably caught something again’ and being a nurse no one was going to argue. Plus the frequent ‘stomach bugs’ were hardly ever reported unless they lasted longer than 48hrs. I was at that time living by myself and stoic which did not do me well in this case because if my GP had had the whole picture she is one of the few doctors in NZ who may have ‘got it’ as a close relative of hers had NET. In June /July 2009 was sick with what I self diagnosed again as a gut flu virus (one was going around) and I never got better. Blood in urine but no pathology again.

 

The pain kept intensifying and at the insistence of Clay (no escaping now) went to my wonderful GP. I think the conversation between Clay and me went like this. Me: ‘I’ll be okay. Had this before” Clay: ‘I’m calling an ambulance’ Me: ‘I’ll go to my doctor’ Clay: On phone… “Appointment time is……” My doctor (I’m calling an ambulance) who felt a mass in my gut and sent me through to hospital where they shoved me on antibiotics, morphine, CAT scan and said I had diverticulitis. The CAT result…no mass. A barium enema found the mass in November and because of its location (caecum) presumed benign and things went on slow motion. Colonoscopy just before Christmas. Operation 8th February.

 

The healing process post surgery was slow and this may be in part due to my mental state. I was in shock and had no idea what my life expectancy was and had just buried my mother after watching her die from cancer. The Cancer Society were good and I did their courses and got counseling but they had no knowledge about NETS and said they could not find any. I managed to hook up with the Carcinoid Cancer Foundation (American), and the Unicorn Foundation (Australia). These two sites saved my sanity. People got in contact with me and gave me hope. At the time the American site had all the information I needed plus answers to some of my pressing questions, which the doctors seemed unable to answer. That was the next battle. We needed answers and we were under an excellent surgeon whose knowledge on her own admission was limited.

 

With the help of our GP I got transferred to the care of an oncologist who knew about NETS and described himself as the eternal optimist. Said he could see me dying of old age. Well that sounded a bit better than doing my bucket list. The last two and a half years have been a bumpy ride. I have found two other people with NETS and one with MEN1. I have been scanned within an inch of my life with the only result being the removal of my thyroid, not NETS, though they thought it might be, being told that I had tumours in my liver, then told I didn’t. The discovery of another small tumour where the original one was but they think it will be too hard to find, so no surgery. I seem to have symptoms that have certainly improved since surgery but being heard on this is a hit and miss affair. I sometimes have felt that I have been going slightly mad but have realised that my experience is not uncommon. It has taken me a couple of years to really come to terms with this disease and ‘forget’ about it for periods of time. Meeting others in person has been wonderful and an instant bond. It has given me strength. We had to fight to be heard at the beginning but I feel that things have improved over the last two years with more expertise in the country. We need to fight for our right to be treated in Australia like other cancer patients are at no cost to ourselves.