Dexter's Mum's story
She was diagnosed in October 2007 following a MRI scan with a tumour which measured 19cm by 10cm.
Her diagnosis took an extremely long amount of time and provides a cautionary tale about the lack of awareness of GIST amongst GPs. She had originally approached her GP about a year prior to being diagnosed as she was feeling lethargic and tired, which gradually got worse over the year. She was diagnosed with anaemia and prescribed iron tablets. This continued for some time and it became increasingly obvious that they were not doing anything to reduce her symptoms. Further tests showed an improvement in red blood cell count but crucially not in the white blood cells. She was then referred to a specialist to find out why she was either not absorbing the iron or absorbing but then losing it.
Throughout this year, her appetite slowly disappeared and she noticed that she was losing weight and her stomach was increasingly bloated. She repeatedly went back to the GP who sent her for further tests which included an endoscopy and colonoscopy and others; they were all negative. She was finally referred for an ultra-sound, followed by an immediate MRI scan when she was told that she had advanced ovarian cancer. This news obviously came as a complete shock to her and she informed family and friends, who did some research which provided grim prospects. A biopsy was taken and she eventually found out that this was a misdiagnosis and she in fact had GIST which had metastasised to the liver.
She was put onto Glivec in November 2007 and has been on it since. She has been very fortunate in that her tumour continues to shrink and now measures about 1cm. The metastases on the liver are dormant and inactive. Her side effects with Glivec were originally quite severe with swelling of her ankles (she still gets this but to a lesser degree), nausea and fatigue. She does still feel tired sometimes but is not sure whether this is the drug or just her hectic life! She works full time and often attends the local gym for various exercise classes.
When she was first diagnosed, she was very underweight and needed desperately to build her strength up. Her children devised a diet for her which was varied but also designed to put weight on. This interest developed into a passion and what she now eats and drinks is almost exclusively organic, always home cooked food from scratch with an almost complete ban on sugar. This is topped up by lots of green tea and wheatgrass. Gone are the days where she would have a low fat ready meal for a quick dinner-now it is an organic homemade soup made on the weekend! Neither Mum nor myself are qualified to say that any of this has had an impact on her positive results with Glivec but we do know that the medical profession are largely at a loss when trying to describe what she should be eating apart from saying she should be having a "balanced diet".
I think her new view on food (we hate the word diet!) was a way in which to take back some control when we felt lost and helpless when first diagnosed. Finding GIST Support UK has also been a wonderful source of information and support, as have the online messages from the GIST community and we wish you all the best!