Karen's NET Story

Karen's Story

Living in Wellington, I enjoy all there is about the capital city, good coffee, great cafés, and a fabulous scenic environment! I’m 43 years old, work in the city for a large Not-For-Profit (NFP) organisation, have a voluntary role as Chair of a small community NFP, and study NFP management (surprise). At other times I can be found in my garden (currently a jungle), at cafés, at movies, or out and about with my partner and dogs.

My personal NET experience is still very fresh. In April this year I went to A&E one night with extreme colic-like pain following 24 hours of worsening back pain then vomiting. This was the fourth such occurrence of incapacitating pain in five years, the first time resulting in a four day admission to hospital with suspected kidney infection or gall bladder problems (no evidence of this on testing), the second time with pain leaving me bed-ridden over Christmas, and the third time resulting in another visit to A&E where they thought I either had gall bladder issues again (again no evidence on testing)/a gastro bug/or an irritated stomach lining due to iron tablets I was taking for iron deficiency anaemia (which was put down to me donating blood too often). Although little of note was found in blood and urine tests (other than some blood in the urine), or on examination, the doctor was concerned at the number of unexplained episodes of pain over several years and recommended that I see my General Practitioner and request a Computerised Tomography (CT) scan.

Over the next few days I did this, and had the scan which suggested I had a small mass with some calcification, suggestive of a carcinoid/neuroendocrine tumour, and I was sent to see a surgeon. The surgeon didn’t want to alarm me (as the findings could be explained by a number of other things), but I was sent for a Chromogranin A (CgA) blood test which was normal to our relief as the surgeon hadn’t had a patient with carcinoid/NETs without a raised test result. Both an abdominal ultrasound and a Positron Emission Tomography (PET) scan showed little, but given the findings of the CT scan, the surgeon thought it prudent to remove whatever the small mass was and surgery was scheduled for mid-May.

As it turned out, the surgery was more extensive than we had anticipated and my surgeon found and removed 5cm tumour in my mesentery, positive lymph nodes, and 50cm of ileum in the small intestine as four tumours were found. At the same time, the surgeon also did a thorough look around – particularly at my liver to make sure there nothing else was lurking. Several weeks later the expected diagnosis came through – these were all neuroendocrine tumours. Whilst this isn’t the best news, a positive spin is that everything that could be found had been removed, most importantly the primary tumour – a key treatment priority in for carcinoid/NET tumours.

Following surgery I tried to be good… I did my exercises in hospital to make sure my circulation was getting a work-out; I took as many walks as possible (starting the day after surgery), and did my breathing exercises. It was the biggest surprise to have a physio come in the day after surgery to ‘teach me’ how to do deep breathing and to cough. I’d been doing these things all my life, I didn’t expect to have to learn to do it again – but having just had abdominal surgery I did need to learn new techniques to minimise the risk of chest infections and clotting given my reduced mobility. Recovery was reasonably uneventful, although I tended to be a little impatient (how unlike me).

On being told that it would take a month to recover from surgery I thought to myself ‘but I’m young’! So, on the first day home from hospital I had a shower, did some dishes and hung some washing… and had to go back to bed for the rest of the day to recover! Two weeks post-op I remember telling my surgeon how tired I was and he was then reminding me that it hadn’t been that long, and although I was healing on the outside, my body was still doing a lot of work on the inside to recover. Still, I chose to go back at work for a couple of hours each day, three weeks post-op.

Although my brain was fuzzy and I’m sure I didn’t do much, it helped me get back into the swing of things, and each week I was able to gradually increase my hours (thanks to a great boss). Pain-wise things were tough in the beginning, but continually improved – it certainly helped to remember that trend lines are seldom smooth in real life! It seems likely that I have had this condition for several years at least, and that the most recent episode of pain was likely to be from the bowel ‘kinking’ due to fibrosis or the adhesion of the tumour in the mesentery. Mine is what they term a sporadic occurrence – there are no apparent risk factors, genetic factors that I know of. There is no connection to anything I’ve done to increase the risk of this happening, and nothing I could have done to stop it happening… stuff just happens.

At the risk of putting out a cliché, it’s now a matter of dealing with it from here on in. Significantly, we can’t easily predict the outcome of this condition and everyone’s experience will be unique to them. I have chosen to be as informed as I could about my condition, but know that this isn’t everyone’s choice.

One of the scariest parts of this was not meeting anyone else with this for months after my diagnosis and not finding any support group in New Zealand who could offer advice. No one around me had ever heard of it, and as such no one knew what it would mean for me. Feeling somewhat isolated and a bit scared, and I figured that if I felt this way, then others might feel it too – and they did!

So we get to this point in time where we now have the formation of the Unicorn Foundation of New Zealand.