Hi, My name is Sue and I am a stage 3 Linitus Plastica stomach Cancer Survivor.
I got this cancer by having Type A+ blood and getting a Heliobactra Pylori infection in my stomach.
I have survived a Total Gastrectomy in December 2017 and am living the best way I can. It took the Dr's nearly 1 year to diagnose me. All the tests, the endoscopy's (5) the colonoscopy (1), the laproscopy all over a 14 week period, could and did not diagnose what cancer I had. It took a Total Gastrectomy and 1 week later finally a diagnosis. Then I had to wait 2 months to start Chemotherapy and that almost killed me. FLOT is a very debilitating Chemo and if I can survive that I can survive anything.
I spent a year of hell getting sicker and sicker, not being able to eat. I went from 122kg to 60kg by the time I had surgery. I was loosing 2.5kg every 2 weeks roughly. I went from eating a 3 piece feed from KFC upsized to only being able to eat half a junior burger. My body was slowly eating itself away. I had no energy to do anything and my GP said that she didn't know what to do. She even said at one stage that I was "imagening" that I was sick, that it was all in my head. Boy was she wrong. What really pissed me off was that there wasn't enough information about this type of cancer in Australia. I got all my information from overseas. I even watched the a Total Gastrecomy surgery on YouTube so I would know what to expect afterwards. But really 14 weeks of tests with no diagnosis made me mad at the system. Overseas this cancer is the second biggest killer worldwide for one main reason! It is because it is never diagnosed until it is stage 4 and too late, then you are told that if it is stage 4 you have about 5 months to live.
We need better testing and treatments, but because only 2500 people per year in Australia get this cancer, it is left behind in funding and research.
This makes me mad and sad. Mad that no one thinks that this is worthwhile to fight and sad because we are a minority and other Cancer's are more important in the eyes of the researchers and government funding. Lets have an open discussion. I want to hear from other stomach cancer survivors that have had similar problems with diagnosis, treatment and surgery. I want people to take an interest in this cancer so it can be stamped out too.
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