For Charlotte, the most difficult part about her cancer journeywhat a person experiences/lives from the time they think they have cancer has been the looming uncertainty.
“The hardest thing I’ve found is that you don’t know what the future holds,” she shared.
“Having a rare cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs is not like being diagnosed with breast cancer where there is a clear treatment pathway. For me, having GIST means accepting there is no cureno evidence of disease; complete cancer remission. You’re just living, waiting and wondering if it will spread.”
Charlotte was diagnosed with Gastrointestinal Stromal Tumours (GIST) in 2019. She and her husband had just moved back to Sydney from the UK and were undergoing fertility investigations, as they were trying to have their second child, when doctors found an ovarian cyst.
“We moved back in March 2019. When they found the cyst I went into surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence to have it removed, when I came out I was told they had discovered a much larger growth,” Charlotte explained.
“What they had detected on my ovary was actually a GIST tumoura tissue mass that forms from groups of unhealthy cells growing out of my small intestinea section of the gastrointestinal tract that recieves food from the stomach and absorbs the nutrients from food, also called small bowel. It was so big it had dropped and connected to my ovary. Thankfully, while I was in surgery they were able to call on a specialist who was able to remove the large tumour. But it had spread, and there were still lots of little tumours that surrounded it, too little to remove by surgery.”
Charlotte spent the next week in hospital recovering and planning for the next steps in her fertility, and now cancer journey.
Me with my mum – this was a few weeks after leaving hospital.
“I completed one round of IVF to preserve my embryos before starting treatment. I then began taking Gleevec under the instruction of my oncologista doctor who specialises in the study, diagnosis and treatment of cancer Prof Goldstein,” Charlotte said.
“It has been a challenging journey so far. There’s nothing out there on GIST, and when you do find something, they are journal articles written for doctors, extremely hard to understand without a medical background.
“Even when you talk to doctors, they seem to be in the dark. They are always so interested in my story and learning about my condition which is nice, but it’s so scary when you realise that this is because they have no idea what you’re talking about.
“Social media has been my main source for information and support. Through Facebook I’ve actually met three other girls with GIST who live in Sydney. We meet once a month and go for brunch. It’s been great finding other people who have the same cancer to connect to.”
Two years on, Charlotte is now stable.
“There are still small tumours inside my abdomenstomach, stomach area, belly that are never going to go away. But they have stopped growing due to my treatment,” she shared.
“Now, we just wait and see and hope that they stay this way. I have CT scans every four months to check and so far things are looking good. My oncologist has told me that if I remain stable for three years on Gleevec, we can look to start trying for our second child – I’m due to hit this milestone next year.”
This has been welcome news for Charlotte, her husband Simon and her now six-year-old son Max who continues to ask his parents for a little sister or brother.
“Since diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results, it has been so difficult not being able to plan for the future and not knowing if we can have a second child,” Charlotte continued.
“But I’ve had great support from family – my sister and parents came over from UK to stay with us and look after me before COVID hit – and I have a really good group of friends. The friendships you have during your cancer journey are so special because you realise just how much people care for you. That has been the positive for me.
“It sounds really corny, but I really appreciate things more, and I’ve realised that all the little things I used to worry about, they are just not that important anymore.”
The GIST Girls at our monthly brunch catch up – this was 16 months after I was diagnosed.
This GIST Awareness Day, Charlotte is sharing her story to give others hope and to remind all GIST patients about the importance of finding the right specialist and getting your tumour tested.
“I’m so lucky to have found Prof Goldstein. I know I’m with one of the best GIST experts and I trust him completely,” Charlotte said.
“It’s so important, especially for someone with a rare cancer, to find a doctor that specialises in their specific condition.
“It’s also vital to get your tumour tested. I hear from lots of GIST patients worldwide that they are not offered this once their tumour is removed and I always encourage them to go back to their treating team to insist on it.
“With advances in medicine able to break-down what makes up our tumours and identify the treatments that work best for us, we need to ensure everyone has access to this because everyone deserves the best chance at life.”