My name is Lauren and in September 2024 I was diagnosed with stage 4, high grade neuroendocrine carcinoma. My primary tumour was in my bowel and it had already spread to my lungs and multiple lymph nodes in my abdomen and neck. Some were wrapped around my abdominal aorta and others were pushing against my trachea. My Ki-67 was 75%.
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 gruelling treatments, transplants, remission, relapses and end of life care but it is obviously nothing like being the cancer patient yourself.
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 tumours eroding through my abdominal aorta – my oncologist recommended that I write the letters I’d been wanting to write to my children sooner rather than 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.
In Germany, doctors tested my tumour biopsy against more than 1,000 different genomic markers. Through that testing they discovered that my cancer could respond to Lenvatinib and Atezolizumab. These treatments have worked wonders for me. My most recent PET scan shows no evidence of tumours.
In Australia, as far as I understand, only around 12 genomic markers are tested. The same drugs that are helping me are already approved here for other cancers, but because they are not listed for mine, they are not funded. I also access a targeted injection in Germany that works like a vaccine. It is not approved in Australia at all.
The cost of staying alive has been enormous. So far, I have spent close to $300,000. This would not have been possible with out the generosity of donors and the supportive local community that have been fundraising on our families behalf. Every six months I need to travel to Germany for the targeted injection. My immunotherapy costs $7,000 every three weeks, though I am now receiving compassionate supply from the pharmaceutical company. I still pay $3,300 every month for my Lenvatinib chemotherapy tablets. How can you put a price on someone’s life? We are so truly grateful for everyone that has helped us so far.
The hardest part is knowing that if I had a different type of bowel cancer, these same treatments would be fully funded by the Australian government. Because my cancer is lesser well known and underfunded, I am left to carry this financial burden.
Not long after I was diagnosed I was lucky enough to discover the NeuroEndocrine Cancer Australia specialist NET Nurse team, they have been amazing. They are just so supportive, knowledgeable and helpful that I actually ended the first conversation feeling hopefully for the first time since I had been diagnosed. Just knowing that NECA are there on the other side of the phone to help answer any of my questions is so reassuring and comforting.
My story shows the inequity patients living with neuroendocrine carcinoma. Cancer is cancer. It should not matter what type you have. Every patient deserves the same access to life-saving treatment.
