I am a 41 year old wife and mother of 2 young boys.
The plan was to try for a girl. I suffered many miscarriages in 2009 and 2010. I saw fertility and miscarriages specialists, had numerous specific and complex blood tests, ultrasounds and a biopsy. Nothing showed up of any concern. I felt generally nauseous and started to lose weight. I saw my GP who suggested an ultrasound to look for gall stones. It was New Years Eve 2010 when this ultrasound showed I had spots on my liver and a follow up CT scan that day showed a mass on my pancreas. While people around me prepared for new years eve celebrations I was trying to imagine how my boys would live without me and how my wonderful husband would cope with it all.
Googling “tumors on pancreas and liver” was not at all what anyone wants to read about, so I didn’t.
I saw my GP the first day surgery reopened in the new year (2011) and she got me in to see a Pancreatic Surgeon who luckily was not on holidays and also happened to be really good. I remember my GP on the phone saying she had a 37 year old female with a large mass on her pancreas. The surgeon saw me the following day. He looked at my scans and suspected they were Neuroendocrine Tumours which had started in my pancreas and metastasised (or spread) to my liver. I had never heard of this type of cancer. I didnt really show signs or symptoms of this condition. I wanted a baby….. not cancer.
I feel very fortunate right from the start to have been put into the care of my surgeon and the team of Doctors who manage my condition. They are part of a multidisciplinary team which is made up of surgeons, oncologists, endocrinologists, interventional radiologists and others who discuss and treat cases as a team. I was also immediately told about The Unicorn Foundation where I could go for support and to meet with others who also had NETs.
I had surgery in February 2011 to remove the primary tumour from my Pancreas and they also removed my spleen. I then started monthly injections of a drug called Sandostatin LAR which they hoped would suppress tumour growth in my liver and stablise the disease.
In August 2011 I had my first treatment of TACE I had 3 rounds of this treatment and my response was good. Future scans then showed tumours in my bones. This was a shock and left us devastated. We thought things were under control. In 2012 I started Lutate at St George Hospital. Things seemed under control and then in 2014 more tumours showed up in my liver so I had surgery to removed half of my liver and my gall bladder. Follow up scans showed tumours had spread to many other areas including bones so I am now taking Everolimus to try to keep the disease under control.
When I searched Google for Neuroendocrine cancer, there was no immediate first link or ad from the cancer council. I felt isolated. I had been diagnosed with an unpopular cancer and it was hard to find the right information, sources of knowledge and support as a person diagnosed with NETs. Without the support of the Unicorn Foundation I would feel so lost as there is nowhere else to get the information and support they provide.