Like many other Neuroendocrine Cancer patients, my NETs story began long before diagnosis – nearly 9 years before, in fact. In 2011, at the age of 59, I noticed a worrying change in my bowel habits, and was referred to a gastroenterologist, who, puzzlingly, sent me to a physiotherapist, of all people! Although I’d complained to the gastro of frequent, loose motions, the physio, despite my protestations, seemed hell-bent on fixing my ‘constipation’, by teaching me how to contract and relax my pelvic floor! So much for that! Then, in 2013, I thought I’d found the answer to the problem when my gall bladder was removed. However, the diarrhoea persisted, which was then blamed on the loss of my gall-bladder. So confusing!
Things finally came to a head in 2015, when I suddenly experienced a number of episodes of blacking out while doing simple tasks, such as walking the dog, or walking up a flight of stairs. A subsequent blood test revealed severe anaemia, so I was sent to a different gastro (thankfully!) to find the cause. I had both types of scope, a CT, MRI, blood tests ad nauseum, and even a pill-cam. Nothing showed up ….. except a lesion in the terminal ileum, which the gastro thought was nothing significant, and so not worth further investigation (please note that this was in the days before I learnt that one needs to advocate for oneself!). I continued to be ‘treated’ by that gastro for the next 4 years; this ‘treatment’ consisted of his repeating, at every appointment, that I might possibly have Crohn’s Disease (no biopsy was suggested or done), and offering me steroids, which I politely but firmly refused!
Fast forward to 2018. I suffered a bowel obstruction, and was admitted to hospital, where the gastro, in consultation with a surgeon, decided to treat it conservatively, using a naso-gastric tube. No further investigations were done, and I was discharged after 5 days, with a clean bill of health. Almost one year later, to the very day, I was back in Emergency with another bowel obstruction. This time, I had the good fortune to see a different surgeon, who decided that he needed to operate to determine the cause. He reassured me that it would most likely be adhesions from numerous previous surgeries. Imagine my shock, then, to be diagnosed with a cancer (I wasn’t told which cancer, and I was too shocked to even ask), but was told not to worry, because he had “got it all” …famous last words, as it turned out!
At my post-operative check-up, the surgeon said he would refer me to an oncologist, just to be absolutely certain that there were no further tumours. In the meantime, I had my first PET scan, and waited…. and waited… and waited some more. Three reminders to my surgeon and 8 weeks later, I finally rang the oncologist’s rooms to be told they hadn’t received a referral for me. All this time, my mind was in a whirl, as I grappled with this life-changing diagnosis, and lack of information. I could REALLY have used the support of a NET nurse during that time, as family and friends anxiously bombarded me with a myriad of questions to which I had no answers.
I had been diagnosed in early July, and finally got to see the oncologist in September (not a NET specialist… I had never even heard of those, at that stage). As I sat in her office, frozen with shock, and mute with panic, she finally gave me the name of the cancer, told me it was slow growing, and then promptly advised me to google it on the NeuroEndocrine Cancer Australia website if I wanted any further information (I most certainly DID!). She also added that the PET scan had indicated something suspicious in my pelvis, and she was sending me for an ultrasound. To say I was stunned, would be an understatement; remember, I’d been told that the surgeon had got it all! I dutifully had my ultrasound, and waited, in a state of panic, for the results while reading patients’ stories on the NECA website. I didn’t understand anything about NETs at this stage, and the oncologist had not exactly been informative, to put it mildly. On that site, I mostly found stories of patients who had been advised to get their affairs in order; I panicked…BIG TIME!
Finally, I was given the ultrasound results, by phone. Nothing had shown up! Now, I was also bewildered, as well as confused, and sick with anxiety. The oncologist offered no explanation for this anomaly, and seemed impatient that I even dared ask for one. (Just a note, here, to say that 2 years later, I found there was, in fact, something worrying on that ultrasound, which had been missed by the radiologist). I finally ‘sacked’ that oncologist, when she couldn’t answer my questions, refused outright to give me a referral to Peter Mac (I live in Hobart), and in response to my anxiety and mounting frustration, patted me on the back, and told me that all I needed was ‘a good Christmas’. That was definitely the last straw!
I made a complaint about my treatment to the practice manager, who recommended another oncologist in the same practice. I agreed to see her, but, as it transpired, this was a big mistake. To cut a long story short, the new oncologist had obviously already formed an opinion of me as a difficult and demanding patient before I even saw her. She dismissed my new symptoms – abdominal pain and vomiting (signs of an imminent new bowel obstruction, which I suffered 9 days later, and for which I had to endure yet another open surgery)- and had to finally admit to negligence when I was hospitalised, again, a few months later, with a severe reaction to an Octreotide injection I was given at her rooms. Despite my informing her of another condition I had, she had failed to take it into account when prescribing the Octreotide, which was contra-indicated, in my case. Let’s just say that our parting was not amicable!
Now, I was without an oncologist, highly anxious, distressed, depressed, and feeling so, so alone. In sheer desperation, I rang a number I found on the NeuroEndocrine Cancer Australia website. Enter my angel, the NET nurse at NeuroEndocrine Cancer Australia! For two hours, she listened, with patience, empathy, and compassion, as I poured out my story, accompanied by nearly hysterical sobbing and tears. The specialist NET Nurse was not only a sympathetic ear, she was also practical and very efficient. Within weeks, she had secured me an appointment at Peter Mac, with Associate Professor Michael Michael, and for the first time in the many months since diagnosis, I felt heard, safe, and confident that my treatment was in the right hands. There was subsequently a change-over in NET Nurses, and I now have the support of our wonderful new NET Nurse, who is always ready with a sympathetic ear, loads of love and compassion, and lots of information and good, practical advice. I am not exaggerating when I say that it is the NET nurses who have made the biggest difference during my NETs journey.
I live in hope that one day, we Tasmanian neuroendocrine cancer patients will be treated the same as other cancer patients in the state, who are provided with one government funded nurse for each 100 patients. For neuroendocrine patients the story is quite different. It is estimated that there are currently over 500 patients, in Tasmania, living with NETs, and that this number is increasing by at least 100 new patients each year. Yet, we still do not have even one, local, specialist NET Nurse! Furthermore, the one mainland-based Net nurse we currently do have remote access to, who serves approximately 24,000 Net patients Australia wide, is funded not by the government, but by neuroendocrine cancer patient donations. If we did have a local nurse not only could I enjoy the support I now receive remotely, but I would also be able to attend a local support group to meet other NET patients just like me. The NET Nurse could to attend local clinics to educate GPs and nursing teams about optimal treatments, so that and I would no longer have to explain my disease and treatments, time and time again, to every new healthcare provider that I encounter.
Of course, my NETS continue to wreak havoc on my body. My present status is Stage 4, Grade 1, small intestine primary, with metastases to my pelvis, mesentery, liver and lymph nodes. Since I can’t tolerate either the Octreotide or Lanreotide injections, I am currently still on watch-and-wait, with PRRT as my next option.
It has taken me nearly two years of counselling, to come to terms with the trauma that I went through during those early days after diagnosis: 4 major surgeries in 16 months, endless trips to Emergency by ambulance, 15 hospital admissions, the ‘treatment’ of two oncologists and one gastroenterologist (the one who ‘treated’ me for 4 years, but failed to diagnose me correctly), who when I informed him of my diagnosis, told me that I was “very lucky to be diagnosed so late as it had saved me 9 years of worry”! And, yes, he knew, at the time, that I was already Stage 4. I firmly believe that if I had had the support of a NET nurse during those early days, I probably wouldn’t have needed a psychologist, or the anxiety meds I am now on. I have moved on, but the trauma is always there, just below the surface. At the moment, I have our wonderful NET nurse that I can reach out to by phone, and she is a veritable lifeline in the raging, unpredictable and scary ‘sea’ that is NETs. How much better, then, would it be to be able to talk to a local- based Net nurses face-to-face.