Date of Diagnosis: 17 March 2020
Time to take for diagnosis: 6 years
Diagnosis: Pancreatic Neuroendocrine Cancer, stage 4
My name is Steven Slean, and I have been diagnosed with Pancreatic NETs. I live in Tasmania, my story to diagnosis, and then treatment is a long one, that has resulted in no chance of a cure. I have been told I’m terminal and have 2 years to live and there is no cure.
I’m sharing my story so that people who can influence government funding for NET patient care in Tasmania can read what it is really like to be a NET Patient, the challenges around getting diagnosed, the challenges around referral pathways, the challenges around healthcare professional understanding of the disease and the challenges of being treated and having to travel interstate to do so.
Prior to my diagnosis I was familiar with cancer, my Dad died of bowel cancer when I was 5 years old. This NETs diagnosis gives me great anxiety about my own cancer and survivorship. My Mum died in 2022 of cancer too, it was colorectal cancer. We don’t know if was NETs as she was never tested.
My symptoms for NETs started in 2014, extreme fatigue, tiredness, asthma, IBS and general body soreness etc. Not at any point did I think these symptoms could be a sign of cancer.
In March 2020, I was feeling generally very awful, so I visited my local GP and discussed my list of symptoms. After I begged for further investigation, the Doctor ordered a CT Scan, stool and urine sample and bloods tests.
We had to travel to Burnie for the CT Scan, around an hour away from home. Four days later the symptoms were still there and my wife rung an ambulance and I turned up to the Burnie hospital’s emergency department in a great deal of pain.
The hospital staff looked at my file and I was told I had ‘cancer’ but not sure what type – this was a result of the tests I had only done four days before. They didn’t realise they were delivering me this news for the first time as my follow up appointment for the GP for the results was not until the next day.
I had to call my wife (who wasn’t able to come with me as she had to stay with our children) and tell her I had cancer in disbelief over the phone, which was hard for both of us I had no support with me.
We didn’t hear the word Neuroendocrine for a long time – months and months.
My GP sent me to see an Upper GI surgeon at the Launceston General Hospital which is 1 hr and 15 min drive away. He told me I had to have special scans and tests so I had to go to Hobart, Burnie and Launceston hospitals. (This was the start of many scans, tests and travelling to the hospitals).
We had to stay in Hobart due to the length of driving and my 5pm appointment. My wife and children had to go, as we had no-one to take me. I was too sick to drive myself, we don’t have anyone to care for our children.
The surgeon told me via the phone about the surgery and he told me to get my affairs in order, because he couldn’t guarantee I’d make my 50th birthday in October 2020.
I was then operated on to remove the head of the pancreas (left with 30% of pancreas) my entire spleen and some lymph nodes were removed – a nine and a half hour surgery in total. Due to COVID I was unable to have my family or a support person in hospital. We were told to treat it as we would never see each other again, as the surgeon said it was high risk.
I was supposed to be in hospital for 3 weeks, first few days was meant to be in ICU and 1 to 2 days on ventilator but was told they couldn’t spare any due to covid as only had 40 ventilators in the state. Due to hospital overload/COVID I was sent home after 1 week with drainage tubes hanging everywhere. That week we had an ambulance out at home 8 times. My wife and I begged for me to go back to the hospital and were repeatedly told it was safer at home (I understand this is what the staff were told to say during Covid).
They finally took me on the 8th time due to my health failing. We only had one ambulance for North Western Tasmania at that time – COVID segregated ambulances. The Burnie Hospital was shut down due to a COVID outbreak (a cruise ship bought it in).
We felt we had no support at this time. Due to complications and surgeries I was repeatedly sent back to Launceston Hospital after staying in for 2 weeks at a time, then home for a week, then to have the ambulances out again every day and again begging to go back as I was seriously sick.
The paramedics were brilliant, over worked and over tired and yet they took the best care of me. Some had to do double shifts and some did shifts alone. I recall one time we had 2 ambulances as they only had 1 paramedic in each ambulance.
During this time I had 22 surgeries over the six weeks due to complications. I was in hospital for 2 weeks, and even though I wasn’t feeling right or well I was discharged as they needed the beds. I was on intravenous anti-biotics for 2 months. I was advised that since I got 2 infections from all the complications and Doctors here didn’t know what it was, that they had to contact infectious disease doctors from the mainland to find what it was.
Then I had to wait each day for Launceston General hospital to send the antibiotics to the district nurses here in Devonport via ambulances.
I was in and out of hospital two weeks on and one week off. We repeated this three times. We had to go to Devonport each day for two months to have my bottle of anti-biotics changed over. My lungs collapsed twice and were filled with fluid, so more surgery and complications.
There was a time I passed out, that I couldn’t remember getting to Launceston General Hospital, I woke up in hospital with no idea how I arrived.
My wife even drove me to the Launceston General Hospital as there was no ambulances available as the previous ambulance wait time was seven hours and I was close to dying. For on-going care I was to see the gastroenterologist in Launceston – he was the surgeon. Which is around 1.15 hours from home.
We were sent to the Royal Hobart for a PET scans and other scans (as this is the only place for free scans). Hobart is three and a half hours away, we had to pay for accommodation and fuel as we weren’t aware of travel rebates. We were later advised of PTAS (Patient Transport Tasmania).
In 2021, we were then placed in the hands of an oncologist in Burnie who was not a NET Specialist, he advised me that my cancer was neuroendocrine cancer. We had never heard of this. This same Oncologist and my Upper GI Surgeon told us that they could not remove all the cancer but the surgeon, the oncologist and my GP stated that I was cured. The GP had only told me that I was cured as he was reading the notes from the surgeon. My GP kept referring to NETs as Pancreatic cancer and that I had been cured. This 2021 meeting with an Oncologist would be my only meeting until I finally saw a NET specialist Oncologist in 2023.
We felt confused, we didn’t know what to think when we were told that my cancer was in fact, Neuroendocrine cancer and should be treated differently to Pancreatic cancer. We only knew it was rare and were told that I was cured, and that if I didn’t ‘feel right’ to see my GP.
For my care, we were told it was ‘watch and wait’ we desperately wanted to see a specialist NETs Oncologist on an ongoing basis. The referral to a NETs oncologist took a further 2 years, with my wife advocating for me.
My wife researched and found Neuroendocrine Cancer Australia on Facebook. No healthcare professionals had told us about NeuroEndocrine Cancer Australia (NECA), this may be due to the mis-diagnosis of Pancreatic Cancer or no knowledge of NECA.
When I finally found NECA – I finally had accurate up the minute information – we could breathe. The relief was palpable. Knowing there was something and someone there to support us – we had someone on the other end of the phone. We were greeted with kindness, knowledge and a sympathetic ear, there were so many resources that we could watch and download as well as support groups to join.
The GP did a referral to the NETs specialist in Hobart but unfortunately on the referral stated I had pancreatic cancer and it was cured, so the referral was a dead end. This wasted more precious time. My wife had rung the specialist’s office to find out what the delay in contact was and to be told about what was written, then the receptionist said to get a new referral which I did, for it only to say the same thing. So failed again.
I had to see a Urologist due to Kidney issues from the complications. When we saw the Doctor and my wife told him that I had Neuroendocrine cancer and the Doctor had heard of NETs! – this was the first doctor who knew what it was. What a relief! We cried that someone had heard of it, he sat and listened and didn’t let us leave until we were calmed – he felt like a health professional. He actually cared and heard our plight. He did the referral to the NET specialist in Hobart on the spot. Unfortunately, this particular NET specialist could not see myself at that time so we were referred to a private clinic in Ulverstone.
I was told to see a Private Oncologist. This initial visit would cost over $300 that we didn’t have. He hesitantly reduced the fee to $100. During this consultation we then felt like he had done us a favour and we didn’t learn anything other than what we already knew from the NECA resources. He didn’t know much about NETs – we felt we actually knew more than him.
We were then told I should immediately start on Lanreotide – this was cost prohibitive, another treatment that we could not afford. We let him know we could not afford the extra money each month. So the private oncologist told us he couldn’t help us since we couldn’t pay and told us to go public and that treatment in the public sector would take a long time – we were now feeling guilty that we couldn’t afford the treatment and stressed. Stressed about the time that it took to reach yet another dead end, and the financial implications of being diagnosed with an uncommon cancer.
My wife contacted an advocate in the cancer dept at Burnie Hospital to see how to go about getting me treated in the public system – she advised I needed a letter saying I need public care. I then needed to get yet another referral, this took more time. We then went public and were lucky enough to see Dr Power (the specialist on the NECA website for Tasmania).
Once I saw Dr Power, I was then assessed by the NET multi displinary team (MDT) based out of Peter MacCallum Cancer Centre in Melbourne. Whilst we were awaiting for the treatment plan I had one dose of Lanreotide and was then advised to start PRRT – unfortunately PRRT is not available in Tasmania, so this time I would be travelling to Peter MacCallum in Victoria for days at a time.
The flights to travel to Peter MacCallum are covered by PTAS, I stayed at family member’s house for accommodation in Melbourne, I organised a family friend to take me too and from hospital and airport (but of course we paid her out of pocket as cost of living is so high). There are still costs for food, parking and medications and the travel is draining. I had to travel alone as my wife had to stay home for our children which was an added stress on all of us. Though this was a financial strain we received some good news – PRRT worked well.
I have since re-started Lanreotide in February this year. It is free for us in the public system and the local Latrobe Mersey Hospital administers this large needle.
With the lack of referral pathways and constantly visiting numerous healthcare professionals, we finally saw a coveted NET specialist Dr Jeremy Power in January 2023. This appointment was a win as I had been diagnosed since March 2020. Two months off nearly three years of frustration and incorrect advice and care. This is on top of the 6 years to get diagnosed. My correct course of treatment from symptoms starting 2014 finally commenced 9 years after my symptoms had started.
Another frustration that surfaced was, being only 15 minutes away from the Latrobe Mersey hospital, it’s only like a triage hospital and of no use to a NETs patient other than getting lanreotide injections. Our travel for treatment takes days at a time when I need PRRT.
My wife’s previous work history was as a Disability and Aged Care worker, she is an amazing advocate who knows that I need to advocate for myself – even with her advocacy it took three years to be referred to a NET specialist (after diagnosis).
To put this nightmare of an experience into perspective it’s important you know what else we have been juggling around my medical appointments. We have two school aged children. However, one child home learns as he has diagnosis of Autism (ASD level 2), ADHD, SPD, Dyspraxia, Dysgraphia, and Anxiety. Juggling our sons care and mine has been horrendous to say the least. In 2021 my son’s knees were broken and damaged quite badly and it took 6 months to learn how to walk again, he still needs on-going surgeries.
We have no home care nursing; my wife is juggling many needs being a full time carer to myself and my son, a mother and wife. The misdiagnosis, misinformation and lack of holistic care that we have experienced is equally heartbreaking and frustrating.
I have missed out on very precious time with my sons as a result, not to mention my cancer spreading to stage 4 when perhaps it could have been still at stage 2 if treatment was started straight away in 2020 I was told.
I have been told I am terminal and there is no cure but I won’t give up. There is a saying in the NETs community and it’s NEGU (means Never Ever Give Up) and I treat that as my motto – I won’t stop until our health system is improved and the right things are in place. I don’t want anyone (not only a NETs patient but anyone) to go through what I am going through.
I would like decision makers for the healthcare systems to spend a day in my shoes to see the struggle we have. I should be just focusing on fighting my cancer and making precious memories with my wife and children – not having all this added drama that can be fixed and/or avoided.
I beg the government to fund a Tasmanian specialist NET Nurse, I ask that the government fund an on-going awareness campaign for HCP Education.
We are so grateful for all that NECA provide, but it’s wrong that NET patients are funding their own support. I feel like I have been diagnosed with a forgotten cancer. We live in hope that a NET Nurse based in Tasmania is funded sooner rather than later, I’m unsure of what complications will arise, and it would be comforting to know that we have a local contact who can educate healthcare professionals and provide ongoing support to myself and the other 500+ NET Patients in Tasmania.
Steven, Devonport, Tas
