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Home » Patient Stories » Dan, VIC

Dan, VIC

Diagnosed in 2025

Diagnosis: High grade neuroendocrine gastric small cell carcinoma

This was supposed to be my youngest daughter’s year. All the pressure of Year 12 and I come home and hijack it by dropping the C word. A week earlier I went to the local GP because I couldn’t burp, other than that I was feeling fine, and thought that this was a total waste of the doctor’s time. I was given a prescription for some tablets and was convinced that I had nothing to worry about. Two days later the symptoms were worse, and so I went straight back to the GP and asked what the next step was. I wasn’t really in any pain, just a grumbly tummy and annoyed that I still couldn’t burp. The next day I was booked in to have a gastroscopy, and less than 48 hours later I was told that I had a rare aggressive small cell cancer in my stomach…

Things happened quickly from that point onwards, scans, meetings with surgeons and oncologists, the discovery that whilst I had cancer in my stomach it wasn’t stomach cancer but a high grade neuroendocrine gastric small cell carcinoma. Within a week I was starting chemo and my exponential learning curve about cancer and my body. I discovered I had one of my kidneys located in my pelvis (least of my worries), I found out what role the stomach plays and that you can live without one (mind blowing), I learned how to self-inject, my hair fell out, and water started to taste metallic. I also realized that the battle with cancer is just as much about the mental game as it is physical.

I win my mental game by staying positive and keeping my world big. I’m learning to be more vulnerable and honest with people about how I feel, I use every opportunity to catch up with different friends for a coffee, or a dog walk, and I actively avoid people that steal my energy. 

Even though I have an amazing family and group of friends, I often feel sad, angry, lonely, confused and struggle to articulate all this to those closest to me. I’m sure that this is a common feeling for those that have been diagnosed with a rare cancer. I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

My three months’ worth of chemo has now come to an end; the latest scan has shown that the aggressive cancer has shrunk in size and I’m now ready for the next process that involves major surgery. Once again there will be a physical battle ahead as I get better post-surgery, but also a massive mental game as I adjust to a total lifestyle change without a stomach and living life from scan to scan with everything crossed. Wish me luck!

 

 

Patient Stories

Karen, SA

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

Chris, TAS

I was told my cancer was called Clear Cell Carcinoma. The doctors said there was no cure and that I only had 12 months to live. They told me to get my affairs in order. That was twelve years ago and I am still here.

Roxanne, ACT

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.

Judy, SA

The results showed 15 tumours in my liver. Within days I had a biopsy, which confirmed it was a neuroendocrine tumour. I had never heard of this type of cancer prior to being diagnosed.

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