NET Type:
I am an internationally award-winning food book author and small Indie publisher living in Tasmania. I hasten to add though that I am NOT an author of fiction, hence I’m not a particularly accomplished wordsmith. If only I had that skill! I am also a former BBC national radio researcher and producer and have a Master of Counselling degree from Notre Dame University in Fremantle, Western Australia.
I was diagnosed with neuro endocrine pancreatic cancer (PNET) in December 2024. It was confirmed that the cancer had returned in a lymph node in January 2026.
Lesson one – know thy body!
It wasn’t a shock when I was first diagnosed with a tumour on my pancreas in December 2024. I almost laughed out loud, in fact! “Well, that explains so much, I thought!”. I didn’t cry as I thought I might either at such traumatic news, rather I was stoic! I also felt vindicated in a strange way – empowered, almost pleased! As Spike Milligan quotes on his tombstone: “I told you I was sick”! In that moment I could have screamed this from the surgery rafters after having been refused scans over multiple years.
The reason I mention “Know thy body” is that not a year prior I had nonchalantly advised my husband as we were heading out for dinner that I was dying. He rolled his eyes. I laughed. In his defence, I am a bit of a drama queen I confess, but I knew in my soul that something was seriously wrong. That something had been missed, that something was killing me! And that no one believed me.
The diagnosis made me realise that we know our bodies better than anyone else and that we need to trust our instincts when we know that something isn’t right where our own bodies are concerned.
We need to listen to our bodies, trust our intuition, advocate for ourselves, and push for tests and scans. For if we don’t take the initiative, who else will?!
The truth is, hadn’t I pushed for and insisted on having a scan last in December 2024 and agreed to pay for it privately, I would not be here now, technically cancer free again!
The Sydney surgeon who removed the first tumour told me that the cancer due to its size (10 x 5 cm+) had probably been growing for 10+ years! For at least half of that time, and for the past three years prior to the diagnosis especially, I had been experiencing an increasing catalogue of uncomfortable symptoms impacting a variety of systems in my body (predominantly my digestive system, hormonal, heart and sleep), as well as negatively impacting my wellbeing generally – I felt tired all of the time and under par!
Friends rolled their eyes and teased me for being a hypochondriac, when I complained about symptoms and a lack of energy. And honestly at one point I began to think so too, but the reality was that I was nursing a huge tumour that was consuming me in gradual increments! So NO, if you feel that something isn’t right trust your instincts and get it investigated!
Multiple doctors had turned down my requests over the years for an abdominal scan. Instead, I was simply given more and more drugs to treat the symptoms that I was experiencing, thereby masking the cause of the symptoms.
I think women are susceptible to this response, particularly older women and particularly from male GP’s (from my and many of my female friends’ experience). We become somehow invisible I think, every symptom put down to the menopause or some form of middle-aged neurosis!
Having said that, I appreciate that this cancer is notoriously difficult to diagnosis apparently as symptoms can be so varied and vague, and also mild at first if the cancer is a low grade cancer like mine, but when symptoms persist, become more urgent, more intense, cease to disperse, and when we feel more and more generally unwell, we need to listen to our bodies and act – to insist we get the tests we need (and to pay for them if needed). It could save your life, as it did mine!
BUT, back to the diagnosis!
Once the bad news had been conveyed – that I had a 10 cm x 5 cm+ cancerous tumour on my pancreas and spleen, strangely at first, I didn’t feel sorry for myself at all. Ever the pragmatist my first thought was “people are diagnosed with cancer everyday – why not me!”. Also, I was aware that one in four of us will develop some form of cancer in our lifetime.
But then I remembered the two friends I’d lost to pancreatic cancer. Next came the ‘out of body experience’ and a veil of white noise descended. Suddenly the doctor’s words became muffled, floating untethered in the ether!
White noise descended the next day too when sitting in the Tasmanian surgeon’s office, the surgeon’s sombre face staring at me with not a skerrick of hope in his eyes! Sentences like: ” the tumour is inoperable, we’ll try chemotherapy first to see if we can shrink the tumour BUT there are no guarantees of success and even then, surgery may not be possible so we may have to consider … blah, blah, blah, blah … “ Indecipherable dislocated words that at the time may as well have been in a foreign language!
By the end of that day, I had mentally updated my WILL and organised my entire funeral, white scented flowers and epitaph included!
Frankly being diagnosed with pancreatic cancer was ALOT! Especially having lost two good friends to the disease (aged 38 and 51 respectively). In fact, the diagnosis and prognosis would have been impossible for me to fully digest without my husband there to support me and to contribute a second pair of ears!
BUT this was BEFORE we knew the cancer was a NET!
Once the NET diagnosis was confirmed after a biopsy and two PET scans that it was a borderline grade 1/grade 2 slow growing neuroendocrine cancer everything changed.
Suddenly, surgery WAS now possible, indeed not only now possible, but the only way to effect a cure for the cancer. There was to my relief the chance for a cure! Chemotherapy, and radiotherapy were not effective treatments for low grade neuroendocrine cancers I was advised – news strangely received with relief!
Hearing the diagnosis, I fell immediately back down to earth. There was hope where previously there was none! And hope has been key throughout my journey! Adopting a positive mindset too – vital – as thoughts I know from my counselling training have an energy all their own. My thoughts would dictate not only how well I would cope throughout my journey, but also potentially impact the outcome! Thoughts are more powerful than we can ever imagine!
So, what happened next in my neuroendocrine cancer journey?
Not all doctors are created equal (they can be fallible like anyone else) AND not all surgeons have the same or required level of skill. Also, different doctors can have different opinions based on their training and experience!
During the consultation with the first surgeon I saw in Tasmania (who did come with an excellent reputation), he made it very clear that in his opinion unfortunately it would not be possible to remove the entire tumour, which would mean I would be placed in a life extension programme and under the care of a team of experts to manage the symptoms and the progression of the cancer.
He also advised that he wouldn’t be able to perform the surgery for another 4 months and that the surgery was not possible to do laparoscopically, neither of which was ideal for me.
Intuitively I felt there was an alternative option and so I decided, much to the surgeon’s initial chagrin at the time, to get a second opinion from two other surgeons interstate as there was no one else sufficiently qualified to perform the surgery here in Tasmania.
Luckily, I had already done some research (via quality websites) whilst waiting for tests and results and had found two surgeons, one in Sydney and one in Melbourne who seemed to have exemplary credentials and reviews. I organised to have a consultation with both for a one-off consultation fee (you don’t need to have private health cover to do this. Private health cover won’t cover the cost anyway).
The Melbourne surgeon organised for me to have an MRI (which was partly covered by Medicare) – that strangely the Tasmanian surgeon did not deem necessary. In reviewing this as well as the CT scan I had in December that initially diagnosed the cancer, both surgeons independently of each other said they were 95% confident they could remove the entire tumour.
Which surgeon to choose was difficult at the time. Both came with such solid credentials, but in the end because he’d also been recommended to me by my Cardiologist and another doctor friend who worked at Royal Hobart Hospital, I chose the Sydney surgeon.
Incredibly as promised, the Sydney surgeon not only removed the entire tumour, but with a zero margin! I was cancer free! He also told me however, in a post operative consultation, that had I waited another 4-5 months for the surgery (as would have been the case had I had the surgery in Tasmania) it would have been too late to remove the entire tumour. This was sobering news, but also vindicated my decision to act quickly where this tumour was concerned. I knew intuitively that it would be detrimental to wait for months for surgery in Tasmania. Again, I trusted my instincts.
My surgery involved a distal pancreatectomy, splenectomy and the resection of blood vessels. It was a long and complex surgery and involved a huge 70 cm incision, 8 days in hospital and multiple weeks recovery. I was lucky and did not become a diabetic. I do have to take antibiotics due to losing my spleen however and Creon daily (digestive enzymes) for the rest of my life. But that seems a very small price to pay for my life.
After my surgery and I was released from hospital my surgeon gave me a massive hug and said: “Go away and live your best life, no further treatment is necessary!”. It was a dream outcome for me honestly! For some inexplicable reason though that I couldn’t articulate, I didn’t feel the elation I thought I should feel with hearing such wonderful news. Conscious of this, “What an ungrateful wretch” I thought to myself at the time! But as it transpired there was a reason for this lack of elation – unbeknown to me and the surgeon I wasn’t entirely free of the cancer at all! Intuitively, deep down, I think I must have sensed that!
Alas, 6 months after my surgery my first PET indicated that there may be a small amount of NET activity near the surgical area around my pancreas. A follow up CT indicated no NET tumours, but did pick up a slightly enlarged lymph node! During my consultation with the surgeon, he told me not to worry, that he thought it was the fluid around the pancreas and that he was sure that the cancer hadn’t recurred.
However, instinctively I knew this lymph node contained the cancer. I felt a sense of dread around it. I asked my surgeon about it – he even mentioned my concern about the lymph node in a follow up letter to my GP – but he told me not to worry, and that I was worrying too much (and I am a worrier!). As it turned out however, I was right. In January 2026, 5 months later (and a year after my first surgery) it was confirmed in another PET scan that indeed this enlarged lymph node detected in the previous CT scan – that had enlarged further, did indeed contain the NET (the same low grade borderline 1 and 2 NET).
We don’t know 100% whether this lymph node was a recurrence or whether it was overlooked during the first surgery a year prior (it was less than 2 cm when it was removed this year, hence it would have been tiny a year earlier and easy to miss), but I have an instinctive inkling that it was overlooked the first time.
22 lymph nodes had been removed in my first surgery and the cancer was miraculously only found in one of them (after my having had the tumour for 10 +years – incredible really!), so it was unlucky indeed that this tiny solitary lymph node escaped detection.
BUT the good news is that the cancerous lymph node was ultimately found and removed!
SECOND AND THIRD SURGERIES
Finding and removing the elusive ‘Larry the Lymph node’ (as I called it) however proved much more difficult than we imagined!
I had my second surgery on 12th April 2026 again in Sydney with the same surgeon (although I did get a 2nd opinion from another surgeon in Sydney regarding whether it may be possible to do the surgery laparoscopically – he said alas, NO!).
The second surgery involved again another huge 70 cm cut. It also involved another 5+ hour surgery. I came around from that surgery okay. Multiple lymph nodes had been harvested, plus some inflamed tissue. The pathology came back benign (hoorah!) This was fabulous news!
I thought that would be it, BUT alas the CT scan undertaken 5 days later whilst I was still in hospital confirmed that Larry the lymph node was still smiling back at us. So, back in we went a week later to expunge and terminate him. We thought this would be simple (how hard after all can it be to remove a tiny lymph node I thought!) Hard as it transpired! Another 5+ hour surgery ensued but this time involving a further 3 surgeons as the elusive Larry was proving extremely elusive!
It was by all accounts a complex and challenging surgery according to the surgeon. He looked exhausted afterwards. I struggled following this surgery, developing an intolerance to opioids which made controlling my pain challenging. My recovery this time was also excruciatingly slow.
Miraculously however – even though I’d been told there was only a 50% chance of finding him, the surgeons expunged Larry in the end – hoorah!
And it appeared just as well, as the lymph node was jammed apparently between my aorta and Vagas nerve – the worst place possible my surgeon indicated.
He advised that the lymph node would have been inoperable had it grown further, even slightly. This was terrifying news as I’d been given the option prior to the earlier surgery of waiting until the lymph node was larger and easier to find before operating, but had I waited, it would have been too late for me! If we hadn’t managed to find and remove the lymph node when we did, soon I would have been unable to swallow or eat.
I am so grateful that my surgeon urged me to proceed with the second surgery. My intuition too also screamed that I needed to “get Larry out” and asap! Despite my fear therefore regarding my body’s ability to cope with a second major surgery, I decided to go for it! Thank GOD I did!
I cannot express strongly enough how important it is to find a good surgeon and to trust your instincts! I owe both everything.
So where am I now in my journey with neuroendocrine cancer? Well, I am not 100% sure, but I will know for certain soon whether I am free of the cancer – for now at least, and hopefully for good!
Technically I am considered cancer free now that Larry the lymph node has been exterminated (hoorah!). The lymph node was the only place that the cancer was detected in my last PET scan done in early April 2026. BUT I was also advised by a Sydney oncologist that there is a 50% chance that the cancer could return. I realise this is quite high odds, but I am not focussing on that, rather on a positive outcome!
Luckily, I am a cup half full, and a solution focussed person! I was advised that there would only be a 50% chance of their retrieving Larry the lymph node, and the surgeons did it, and so I am hoping (of course) that I will fall into the ‘it will never come back’ 50% camp, and that is what I am trying to manifest!
The second major surgery did take its toll, as mentioned. I am still recovering, and my recovery has been painfully slow. I have had issues with pain management, had a scare with a potential DVT after my flight back to Tasmania from Sydney that landed me back in hospital, and have been experiencing strange hypothermic dips in internal body temperature levels, the cause of which has eluded medical experts and that also took me to hospital. Then two weeks ago (10 weeks post-surgery) after seeing an acupuncturist weekly for over 6 weeks, I finally turned a corner. Though still weak, I am now building up my strength slowly, have been able to do more activity incrementally, have been able to socialise a little, cook (my happy place) and have even had an evening at the theatre! In short, I am back baby! So, I hope (and I am assuming) that it’s onwards and upwards from here! Fingers crossed!
So, what’s next?
There is no treatment currently to my knowledge to prevent a recurrence of the neuroendocrine cancer, though I try to keep on top of new innovations and research.
Other than that, all I can do is to try to live my best life. To not take a single day for granted! To live in the moment, take each day as it comes, focus on positive thoughts, a positive outcome, create beautiful and lasting memories with those I love, do joyful things and spend time with joyful people and the people I love and care about most in this world. To be grateful for each day!
I am also trying to eat well, drink less (but oh how I love a good G + T!), listen to my body, remove as much stress as I can from my life (hard for a natural stress head like me!). I am also taking quality supplements to shore up my immune system now that I have no spleen, trying to listen to my body, listen to my healing hypnotherapy CD’s when I have time, and am continuing to see a good acupuncturist regularly to help keep my body in balance, which in turn I hope will help keep the cancer at bay.
Moving forward mindfully, in other words, which is all any of us with this cancer can do!
For me it has been important to be proactive and to take an active role in my own healing journey rather than expecting someone else to do it all for me! For me gratitude has also been important and to try to keep positive and as hopeful as I can throughout.
I was given a dreadful prognosis at the start, that proved to be wrong. I was told it was impossible to remove the entire tumour and advised I would never have a cure for my cancer, which also provided to be wrong! The outcome I learned isn’t always necessarily what it may appear to be at the initial outset! All our bodies are different, and we respond differently to treatment too!
There are also so many new advancements in the treatment of cancer. Germany is also spearheading many innovative cancer treatments as is PETER MAC in Victoria, hence I am also keeping a close eye on what’s happening there too!
Getting second opinions was very important I think and informing myself about the cancer and about possible options. Knowledge is power!
Should the cancer return in my case, with it being a low-grade cancer, there are certain drugs that can help slow down its progress. I feel very lucky in this respect – that my neuroendocrine cancer was low grade and slow moving. I know, and feel sadly, that this isn’t the case for all neuro endocrine patients.
Other than the support of my husband (and one wonderful locum GP at my local surgery) we have received NO ongoing support here in Tasmania for my neuroendocrine cancer which has proved to be very isolating at times. Unfortunately, not one of my healthcare professionals referred me to NeuroEndocrine Cancer Australia, having support and specialist NET resources upon diagnosis would have been hugely beneficial to not only my physical health but my mental health, desire to learn more about my disease and feelings of anxiousness too.
Part of the problem was choosing to have my surgery interstate. In deciding this, I was completely left to my own devices after my surgeries when I returned to Tasmania from Sydney! There was no continuity of care and no follow ups from my local surgery or any other medical professionals here in Tasmania, unless instigated by me. Only my Sydney surgeon dealt with my case, sending me for scans and reviewing my status. But somehow miraculously we have managed nevertheless! It made me realise though that better communication and collaboration in the medical profession is necessary. One health system for all! Everyone working together for a common cause!
As a qualified counsellor this training armed me with some helpful coping strategies – though I have experienced some wobbly moments for sure throughout this journey, despite my positive mind set! I was absolutely delighted this week to discover NeuroEndocrine Cancer Australia. And thanks to NECA I have been put in touch with the local NECA neuroendocrine nurse here in Tasmania (she has only been here for a year) who has been wonderful and will be a wonderful support moving forward. Finally, we no longer feel alone in our journey (for this journey also involves our loved ones too, and they need as much support as we do, perhaps more at times!).
Because surgery was the first course of action for my tumour and the surgeon in Sydney was able to remove the entire tumour with a zero margin during the first surgery, I didn’t need to be referred to an oncologist I was advised. As the cancer may have recurred however, I have now been referred to neuroendocrine cancer specialist Hobart. I am still awaiting our first appointment.
In June post-surgery, I also chatted to an NSW oncologist who was fabulous, the first oncologist I spoke to about my neuroendocrine cancer (I wish I had done this earlier!). Having a Tasmanian oncologist however is essential for me moving forward.
The Tasmanian system I cannot lie though has not been great and I have lost confidence in it! BUT there are good doctors here and supports! The issue is accessing them, I think. There has been some resistance in the Tasmanian system too regarding my having had the surgery in Sydney which has been disappointing and has caused issues. If I hadn’t been as proactive as I have been and stayed as positive and hopeful as I have been, I am not sure where I would be now.
The initial surgeon I saw in Tasmania too has also sadly for reasons I don’t understand (as his decision that I shouldn’t qualify for PTAS support was NOT based on the facts of my case but solely based on his opinion) made it impossible for me to access any PTAS (Government) support for my first surgery (that may also have negative ramifications regarding my second surgery application still to be submitted) to help take the sting out of the substantial transport and accommodation costs we incurred for my interstate surgeries. PTAS too dismissed my case out of hand without properly investigating the complex circumstances surrounding my case.
The push back to my deciding to have my surgery in Sydney has been extremely disappointing therefore and made our situation considerably more stressful than it needed to be. Not ideal when stress plays a role in this cancer in the first place!
However, not everyone falls through the cracks as I have! There are good doctors in Tasmania as well as experts in neuroendocrine cancer. The secret is finding them! I highly recommend leaning into the support of the NECA NET Nurses who can provide patients and loved ones with local specialist care here in Tasmania, this is all available on the NECA website too.
My local GP service is run predominantly by locums and though it’s a great little surgery, staffed with compassionate medical professionals, accessing continuity of health care has proven difficult. With so many locums you never know which GP you will get, and it often means that you are starting from scratch each time you see a new locum doctor. Even regarding the more regular locums, not all are fully abreast of your health status or knowledgeable about it! Alas an issue experienced by many rural patients generally, I suspect. There aren’t always follow ups either, so I have had to take the initiative concerning that.
Overall, however in my journey so far with neuroendocrine cancer I mostly feel just incredibly blessed and grateful.
If you are reading this and about to start your own journey of healing – hard though it is, please try to stay positive and trust. Listen to your body, be your own advocate and an active participant in your cancer journey – ask for what you need! You will feel wobbly at times, tearful, sad, angry, despairing, defeated and even perhaps at times, desperate, but do not give up! Tether that hope, grab onto it and do not let it go! Hang on in there!
I believe in miracles, I truly do. I am a receiver of one! They can and do happen. We all deserve a positive outcome, and that includes you!
I truly believe too that a cure to cancer is just around the corner – I feel it!
Janice
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