About me:
My name is Lauren Rayner, I am turning 36 this year. I have a beautiful and caring husband – Jason, and 3 gorgeous young children – Belle (7), and twins Flynn and Otis (5).
I was diagnosed with Neuroendocrine carcinoma (stage 4, grade 3) in September last year (2024) which is considered a rare type of cancer – partly due to it being neuroendocrine cancer but also partly due to it being grade 3 carcinoma which is more aggressive and rare then other types of neuroendocrine cancers. My primary tumour started in my bowel, I unfortunately had multiple lymph node tumors involved in my neck which were protruding and pushing on my trachea and vocal cords. I had another lot of multiple lymph node tumors that were wrapped around my abdominal aorta and a small tumour spot in my lung.
I live in beautiful Tasmania, on the north-west coast with my family and I have been an oncology registered nurse for approx. 12 years which definitely has it’s positives and negatives for when you get slapped in the face with this diagnosis. I have always cared for people going through their cancer journey and what that looks like. This included caring for my own dad who sadly lost is battle with pancreatic cancer in 2021. I have been with patients and their families right through grueling treatments, transplants, remission, relapses and end of life care but it is obviously nothing like being the cancer patient yourself.
The possibility of dying is so very confronting but I am determined to get as much quality time out of my life with my young children and my husband. I refuse to let my children grow up without a mother especially while they are so young.
Given that stage 4 cancer means that there is no stage 5 and that for rare cancer’s there is limited successful treatment options in Australia; I immediately went to Peter Mac thinking they would have a clinical trial for me, which they didn’t but they also told me the average life expectancy for my stage and type of cancer is 14 months, This was just heart breaking to hear and I refuse to accept this.
I commenced on the appropriate eviQ and TGA approved first line treatment pathway for my type of cancer which was carboplatin and etopisode chemotherapies. I had the allowed 6 cycles of this treatment which helped keep my tumors at bay, it didn’t shrink any of my tumors but they did not grow at all either. I could only have the allowed 6 cycles of this treatment and then I commenced on second line treatment of FOLFOX chemotherapy. I had approx. 4 cycles of this and while I was having this it was mostly keeping my tumors at the same size however they would grow larger in between cycles and then shrink back down to their previous size after chemotherapy. At a PET scan after approx 3 cycles of FOLFOX it indicated that I had a small growth in the size of my tumors.
Due to my increasing abdominal and back pain which meant I was most likely at very increased risk of bleeding out internally from my abdominal tumors eroding through my abdominal aorta – my oncologist recommended that I write the letters I’d been wanting to write to my children sooner rather then later and get my affairs in order and complete my medical ‘goals of care plan’.
This all terrified me mainly for my children, I could not leave them without a mother.
That’s when my husband and I decided that we would go over to Germany for treatment. I had cared previously for a man who had been to a clinic in Germany and he had lived another 5 good years at ‘end stage’ after going there and I was determined to get ANY extra amount of time with my husband and kids.
So with the biggest thanks to our family and friends they managed to raise enough money to get me over to Germany for treatment. I have since returned back home and have had a recent PET scan which shows that all my tumors have completely shrunk down to nothing. Now I know my cancer is stage 4 cancer but if I can get multiple more years with my family I will do ANYTHING.
I have managed to access 3/4 of my treatment that I had in Germany, here in Australia but because it is approved here in Australia for other cancers but not for MY type of cancer it is not funded with the PBS which means we have to pay for treatments privately and also I have been lucky enough for one drug company to grant us compassionate stock.
I also still have to fly to Germany again for more targeted injections every 6 months which has already cost us an absolute fortune even with all the amazing fundraising our family and friends and even complete strangers have done for us. How can you put a price on someones life? We are so truly grateful for everyone that has helped us so far.