Andrew's Story (PAWS-GIST Patient)

This disease has affected me and my family.

The following is a very long story made short….

Believe me I could write a very inspiring book based on my experience. An experience that engaged desperation, fear, courage, determination, help, assistance and an above all else the most important things human beings can gift each other….. love and support.


It was the 13th December 2019 and life was going as planned for me and my family. Whilst treating my daughter Ava (aged just 12 at the time) and her twin sisters Holly and Abbie (aged 9 that weekend) to a Christmas grotto theme park weekend away at Gulliver’s World, our world changed drastically.

On the morning of the twins 9th birthday (14th December 2019) I had a massive internal bleed due to a tumor that had been hiding away in my stomach giving no symptoms. Not that I realised it at the time but this internal bleed was a rare life saving sign.

On returning home from our brilliant weekend away with the kids I went straight to the doctors to get checked out. I had blood tests done that confirmed that I’d suffered a major internal bleed. I was fast tracked for an endoscopy at the Royal Liverpool hospital on the 2nd January 2020. The endoscopy found a 2cm swelling on the lining of my stomach so they took a biopsy of the suspicious lump. The results showed that this lump was a 5.5cm GIST (gastrointestinal stromal tumor). This was devastating news but not news that surprised me too much.

I had been subconsciously waiting for something like this to happen for many years and I was mentally and physically up for the fight. The reason I was not surprised is that I’d lost my Mum at the age of 46 to a renal (kidney) tumor which was grapefruit sized by the time it was discovered. Unfortunately my Mum wasn’t given a warning shot and she died within months of being diagnosed.

I was lucky and did get a warning shot and acted on it straight away. On discovery of this hidden killer I knew I not only had to physically and mentally defeat this threat but I also had to investigate further to see if this was something that was going to attempt to harm my family in the future. The unexpected devastating internal bleed that I suffered on the twins birthday basically saved my life and has also ensured the safety of my children, grandchildren and other family members from potentially being taken too early by this hidden threat.

I underwent a 5 and a 1/2 hour surgery on 27th January 2020. I had 2/3’s of my stomach removed and luckily the operation was a complete success. I have been left with minor complications that I’ve had to adjust to over time but nothing really too drastic in the grand scheme of things.

Whilst back home recovering I started to do some research on my condition. My pathology reports came back after 4 months concluding that I’d developed a rare Wilde type GIST. Wilde type meaning not 100% sure which type.

Obviously I was very grateful for the help I'd received from the specialists who helped me to defeat my cancer but I knew I still had research of my own to do try to get to the bottom of why this had occurred in the first place!

During Covid I contacted the PAWS GIST clinic which I discovered whilst searching for information online. They offered me help and advice on my situation and further investigation. They invited me down to Cambridge for their first clinic post covid which was October 2021. They offered me genetic testing and 12 months later the team contacted me and informed me that I had a super rare gene mutation (SDHB) that was more than likely inherited from my mum. The SDHB deficient gene puts you at a higher risk of developing GIST and renal tumors (which my Mum unfortunately died from) and also Para and Pheo tumors. This was the key information that was not only going to potentially help me going forward but was also a game changer for the protection of my family.

I shared the information with family to give them the chance to find out if they also carried the gene fault. My sister was tested early 2023 and her test came back negative which was great news. I registered my 3 daughters for testing and following counselling sessions they have now been booked in for blood tests which will be tested for the gene fault this year. Hopefully they won’t have inherited it but if so the positive will be that they will be regularly tested and monitored during their lifetime to keep them much safer than they would have otherwise been, basically top level life insurance.

This gene fault is not ideal if inherited but the chances of developing related problems are only 20/30% during your lifetime. Early detection of any problems will mean less invasive surgery if any at all but ultimately it will save their life. Also there is the opportunity for when they have children (my grandchildren) the gene fault can be removed, protecting future generations from this hidden disease that so cruelly took my young Mum from our family and a Nan my girls never got to know.

Update on my girls results since I started writing this story...

The twins (Holly and Abbie) have tested negative and have not inherited the gene fault which is a relief. Unfortunately their elder sister (Ava) has tested positive and inherited the faulty gene. This is still very positive for Ava as she will now be monitored (bloods and scans) throughout her life to keep her much safer than she would have otherwise been !

The rare wild type GIST that I had is immune to any drug treatment and currently can only be treated by early detection and surgery. That’s why it’s so important to raise money to help fund research and drug trials that will hopefully one day lead to better treatment options and ultimately a cure. As you know rare cancers don't get the funding and exposure that the more common cancers do, making it much more difficult to fund research.

The specialists and volunteers who all contribute and give their time to running the PAWS-GIST initiative and clinic are very special people indeed. Some have been personally touched by this disease whilst medical professionals give their time and expertise to the cause. Without this continued support there would be no hope.

The PAWS GIST team is dedicated to finding treatments and a cure for this rare and devastating disease that currently has no options other than early detection and surgery. The disease unfortunately affects many young people.

I am raising funds to help support PAWS-GIST research and patients. The following link will take you to my GIST Cancer UK PAWS-GIST Campaign page.

Thank you for reading and for your support.

Many thanks to Andrew for sharing his PAWS-GIST story with us.

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