Katie Golden will be part of our expert panel on Thursday 9th August at the 2018 Neuroendocrine Tumour Q&A session. As a patient advocate, she represents people in NSW and Australia who have been diagnosed with the disease. Read her story below.
“I am a 44 year old wife and mother of 2 young boys. In early 2011, I was diagnosed with Pancreatic Neuroendocrine Tumours.
I had suffered many miscarriages in 2009 and 2010. I saw fertility and miscarriages specialists, had blood tests, ultrasounds and a biopsy. Nothing showed up of any concern.
I felt generally nauseous and unwell and started to lose weight. I saw my GP who suggested an ultrasound to look for gall stones.
It was New Year’s 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.
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.
He looked at my scans and suspected they were Neuroendocrine Tumours which had started in my pancreas and metastasised to my liver.
I didn’t really show many obvious or typical signs or symptoms of this condition.
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 Sandostatin 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.
I started on monthly transfusions of Zometa.
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 started taking Everolimus to try to keep the disease under control.
By this stage I had both low grade and aggressive tumours.
More Lutate, this time at North Shore Hospital, then more tumours showed up so I had radiation, more TACE, SIRT – some successful and others not. My vascular system wasn’t as simple as it could be so access to the tumours was difficult.
Katie and her family on holiday.
I then went on an Immunotherapy Trial of a drug called PD001. I was on this for 6 months before my tumours got too big that I was taken off this and put onto Folfox which a combination of Chemo.
This has been successful in treating and reducing the FDG tumours in my Liver which is where the majority of my disease is located.
Throughout my journey I have been an active member of the Unicorn Foundation, helping now to run the Sydney Support Group and I also do work with Cancer Council through their Cancer Connect program, most of the referrals coming through the Unicorn Foundation.
I was fortunate enough to go to the European NETs conference in Barcelona this year and this really affirmed how much work The Unicorn Foundation is doing and how lucky we are to have so many Drs with an interest and amazing knowledge of NETs and access to so many treatments.”