I will never forget the day I was diagnosed with a pancreatic NET the size of a golf ball, with more metastases in my liver than you could count. No one ever forgets. I can still see the clock on the wall- 4.48 pm, the look on the sonographer's face, and the radiologist’s shaking hands as he told me.
Being a doctor, I knew that the outlook for pancreatic cancer that had already spread to the liver was horrendous, and as I called my wife, I thought “how am I going to tell the kids”.
It was four long days until I had a liver biopsy, and another two before the results came through- results that changed my life forever. Instead of the “usual” pancreatic cancer I had pancreatic neuroendocrine cancer or PNET , with multiple liver secondaries. Unfortunately, NETs are not usually very responsive to chemotherapy, so new treatments and more accurate diagnosis is vital. There was a glimmer of hope in that some of these NETs can be targeted with a special radioactive substance or isotope called PRRT, (peptide receptor radionuclide therapy). The biggest question on my mind which haunted me day and night was, “am I suitable?”
The problem with being diagnosed with an uncommon form of cancer where there is no local access to the latest diagnostic tests is that a veil of uncertainty comes down over you. It’s like living in a black hole. Waiting and not knowing is worse than being told one has terminal cancer. Questions eat at you night and day. Isn’t there something else I can do, some other test that would tell me I had a chance? Under the guidance of some great oncologists, I found my way to the Peter MacCallum Cancer Centre in Melbourne for the most important diagnostic test of my life- a special type of CT scan called a GaTate PET CT- or the NET Scan. This shows with a great level of accuracy where the NET cancers are, how active they are, how much they have spread, and most importantly whether they are suitable for PRRT by looking at the uptake of a “ tracer” that predicts whether the PRRT will work or not. I will never forget the moment my wife and I were told that I was very suitable for the treatment, and that I had lit up like a Christmas tree! It was like getting a reprieve from being on death row. After a course of standard chemotherapy, I was fortunate enough to go through a series of PRRT treatments under the care of Prof Rod Hicks, a pioneer and world leader in this treatment. I had amazing results with a dramatic reduction in the number and size of the tumours in my liver, and in the pancreas. That was over three years ago, and now I am preparing to ride the length of the North Island to raise money to help the Unicorn Foundation NZ to bring some of this technology to New Zealand. At present the only way Kiwis with NETs can have the most important diagnostic test that helps determine their future is to go to Australia, with no government support. This is very tough for some people. Unicorn Foundation NZ aims to improve access to potentially life-saving, state-of-the-art tests and treatments that are not available in New Zealand, and to raise the awareness of this terrible and not uncommon type of cancer.
As a start we are trying to raise $400,000 to create a programme over the next two years, so New Zealanders can access the right test at the right time to give them the best chance for the future. The NET Scan can be established in Auckland as the scanner is already here, but we need to buy the isotope generator and labelling module, and there are other set up costs. This will help enormously to change the landscape for NET sufferers in New Zealand, who for too long have been cast off as having a rare and largely untreatable disease. It will define the future level of need, develop local experience under the leadership of our leading NET oncologist Dr. Ben Lawrence, and serve as a powerful pilot programme which will hopefully convince the government to fund access to better diagnostic tests and treatments for NET patients.
Our fantastic team at Unicorn hope to improve the lives of thousands of New Zealanders, now and in the future.
Dr Malcolm Legget
Neuroendocrine Cancer New Zealand