My NETs journey began back in July 2015.
The year had started off well with a trip to Bali in February 2015 to celebrate my brother-in-laws 60th Birthday.
However, on the last day of our trip I started to feel unwell. Several of our other friends had already succumbed to what was a very bad strain of influenza that we believe had been passed onto us by friends from America.
By the time I arrived back in Perth I had just enough energy to fall into my bed where I spent the next 7 days recovering from what was the worst illness I had ever encountered.
I recovered enough to return to my full time Remedial Massage business and things were tracking along OK other than noticeable weight loss and fatigue, which I simply put down to my recent illness.
Not long later I started to experience left sided mid thoracic and front abdominal pain which I thought was just a muscle strain from the physical demands of my massage.
As the weeks flew by and the intensity of pain was increasing I kept telling myself that it would soon settle down.
However, it didn’t and I needed to drive to my appointments with a cold ice pack placed directly onto my back to dull the pain so I could function. I believe I have a high pain tolerance but it was starting to wear me down. The pain coupled with my extreme fatigue, weight and muscle strength loss were taking a toll on me.
On Sunday 5th July 2015 my wife had finally had enough of my “whinging” and insisted we go to the GP immediately.
We did and my GP put my on a course of anti-inflammatory drugs.
On my follow up appointment on the 20th July my situation was the same, so she wrote out a referral for me to have a CT chest x-ray.
At the 13th August’s appointment my GP said nothing sinister was found from the CT so she decided to organise a Ultrasound of my abdomen/liver which was done on the 24th August.
On 26th August 2015 my GP had constantly been trying to call me on my mobile but I was busy working and she left a message for me to call the Doctors Surgery. I rang as soon as I could mid-afternoon to see if I could make the appointment for the next day. However, the receptionist was insistent that I needed to come in that day.
So once in the GP’s room she uncharacteristically pulled her chair around to be front on with me (her knees lightly brushing mine) and croakily send “I’m sorry to be the bearer of bad news, but you have cancer”.
She then asked me to call my wife and if I could wait in the waiting room until she arrived before we spoke anymore. My wife would have been no longer than 15 mins (her work is very close). That 15mins before she arrived, I will never forget.
I was still in shock and my emotions spilled out with my life seemingly flashing by and I started having thoughts of not seeing my wife, family and grandchildren again and much more were raging through me.
Once my wife I were able to get back in to see the GP she wasn’t able to give me any further indication on any details of what type of cancer I had but she was able to get me an appointment the very next day with a private oncologist, which I was very grateful for.
At my first oncologist appointment on 27th August 2015 she seemed rather non-committal on my initial scan results that the GP had based her diagnosis on in referring me to her.
My oncologist sent me for multiple blood tests then 2 more appointments followed with her. I then had my first FDG PET/CT scan on 2/9/15. The clinical history notes recorded on the referral: “Presumed metastatic ‘carcinoma’? Lymphoma.Unknown primary. Retroperitoneal pain with lymph mass in mesentery and left para-nodes. Multiple Liver lesions? Site for possible biopsy”.
On the 10/9/15 my first biopsy was performed on my right retrocrural node. My left Para-aortic node was the preferred site but considered too risky to do. A pathologist was present for my procedure to give an immediate result. At the end of the procedure and the pathology testing the radiologist, pathologist and other team members came out from the adjoining room all excited and started Hi 5ing me to say ‘congratulations you don’t have cancer’. However, they started asking questions like- have I had a major trauma recently such as a car accident or fallen off a ladder.
Obviously, my answer was no.
Their mood then changed somewhat and said they would be recommending to my oncologist to proceed with a 2nd biopsy with the riskier procedure next week.
So from the 26th August to now the 10th September (only 2 plus long, long weeks) I’ve endured the news that I had cancer, followed by umpteen blood tests, a PET/CT scan, my first biopsy, then told I don’t have cancer to now facing another biopsy next week and still none the wiser what I have.
It’s a very lonely place to be in even with overwhelming support from family and friends.
On the 18th September 2015 I underwent a deep organ/tissue CT guided biopsy on my left enlarged para-aortic node. This was preformed lying face down with the extraction needle going through my back to the front of my body carefully missing all major organs and vessels whilst I remained very still for what seemed like an eternity. The procedure was very much like a large stapler being pressed up and down 6 or 7 times very hard on you back to extract the tissue for biopsy.
On the 24th September 2015 finally a diagnosis from my biopsy had come through. My oncologist confirmed Neuroendocrine Tumours (NETs).
I asked her to please repeat the name as I had never heard of this cancer before.
She then proceeded to inform me that this was the “best cancer you can have as it is slow growing and you will more than likely die with it than of it”.
Those words absolutely rocked me.
By now my brain was in a total spin trying to take this all in.
From here I started monthly Sandostatin injections with the first being done by my GP on 26/9/15.
This injection had to be done a 2nd time as the needle was the wrong gauge. It was extremely painful and I bled a lot. This would be my first and last injection from my GP as the clinic nurse would take over the next month which is still the case. (However I have been on Lanreotide 120mg since 1/9/16).
Because of my interest in human anatomy and physiology I embarked on a mission to find out as much as I possible I could about NETs so I could take ownership of my future and my cancer.
This led to some initial strain between myself and wife who at the time thought I was becoming obsessed with the time I was spending researching. Her frustration with me was because of the ‘reassuring’ words from my oncologist that my NETs is slow growing and I will more likely die with it than of it. She believed this to be the case and in fairness wanted it to be.
From September 2015 to May 2016 the numerous bloods, Chromogranin, monthly lanreotide injections, GA 68 PET/CT scans etc continued.
My weight loss was now around 12 kgs with bad diarrhoea and persistent pain. My research was indicating I was suffering malabsorption because Lanreotide injections (Somotostatin Analogues) can cause deficiencies in some vitamins.
I asked my GP to prescribe Creon tablets for me that I researched could help and I then engaged a dietician for advice. My oncologist would later apologise that she wasn’t aware of the extent of my diarrhoea and reasons for weight loss.
My research was very much into full swing by now and it was around May 2016 that I stumbled across Peptide Receptor Radionuclide Therapy (PRRT) being used in Europe for NET patients.
The more I read and understood about PRRT I just kept thinking why aren’t I receiving this treatment? I have inoperable and incurable NETs so I wanted something to give me hope.
I never accepted my oncologist’s summation about my NETs being slow growing. In fact, my recent scans back then were rapidly changing as was the reviewing radiologist’s reports (Metastatic tumours bigger and now more widespread).
I continued with my research on PRRT and stumbled on a clinical trial being conducted at a hospital right here in Perth. I was able to get the name of the relevant Nuclear Medicine person in charge of this clinical trial.
This was also my very first introduction to the Unicorn Foundation (renamed NeuroEndocrine Cancer Australia) who were helping fund this trial.
Suddenly, I had access to a foundation that could assist me far, far more than my private oncologist and offer real hope and options I had been in search of and right here in Australia.
So, in June 2016 my wife and I flew to Melbourne to attend a NeuroEndocrine Cancer Australia patient’s meeting on the 7th with Simone Leyden (CEO) and guest speaker (patient) Kristen Leknius relaying her inspirational survival story.
I knew from that moment that I just had to get into this clinical trial in Perth. So, upon my return to Perth I asked my oncologist to write to the Hospital seeking an appointment for me. She also sent a referral to a private Nuclear Medicine Doctor who was also offering PRRT treatment to give me a couple of options.
The private option was $20K for one round of PRRT. I declined.
Thankfully, the Clinical Trial appointment on the 10th October 2016 went well and because there was advancement of my NETs now to the bone in my right glenoid I was immediately accepted as I understand the second last patient (72) in that trail.
I was placed into Clinical research study using the combination of Capecitabine (CAP) and Temozolomide (TEM) chemotherapy along with the PRRT treatment over 33 weeks.
I was elated and unbelievably and eternally grateful to NeuroEndocrine Cancer Australia for making this possible.
For Australia’s only not for profit medical charity they punch way, way above their weight in providing patient support, creating much needed awareness in the community and medical community, education, research, and are very big on Advocacy for Neuroendocrine Cancer.
My NETs journey is still thankfully ongoing and upon reflecting back on the start of it I can’t help thinking just how much easier and less stressful it would have been to have had a Perth based dedicated NET nurse to have just spoken to in person along the way.
To date I’ve had 2 x biopsies, 2 x chest X rays, 2 x MRI, 2 x echo cardiogram, 1 x renal scan, 1 x ultrasound, 55 monthly injections, 14 GA 68 PET scans, 16 CT scans, 33 weeks chemo/PRRT treatment,100’s blood tests, 6 appointments with a Oncology Clinical Psychologist, 2 x Dietitian appointments.
To have had a dedicated NET nurse close by for support and guidance back then would have been so helpful to me so I only hope going forward any newly diagnosed NET patient has access to one here in Perth to avoid that lonely and seemingly helpless road I was on for a while.
A dedicated NET nurse like NeuroEndocrine Cancer Australia, Kate Wakelin can provide patients and carers with information on the latest research, self-care knowledge, diet advice, strategies to prevent complications of the cancer or its treatment and so much more.
Health Department money is saved through fewer hospital admissions and GP appointments.
Post-operative hospital stay times are reduced due to the enhanced support.
A NET nurse could be the go to person to contact a Multidisciplinary Cancer Team for further patient information if required.
People with NET cancer deserve a specialist cancer nurse. Perth need and deserve a specialist NET cancer nurse.