@MatchaTea, thank you so much for your detailed reply. I’m impressed with the breadth of your knowledge- I assume you are a medic of some sort! Really helpful to read your thoughts. I can’t remember whether the genetic counsellor mentioned that gene. I was referred to her fairly soon after my mum died, which was 10 years ago now, and it’s fair to say I was still very much in the fog of grief at the time and probably didn’t take it all in. I’m going to ask my GP to refer me again to a genetic counsellor and see if I can find more out this time.
The lifestyle question is interesting. I don’t know anything about my Grandma’s diet as I never met her, but I do know that she had mental health problems and was possibly neurodiverse (‘she had trouble with her nerves’ is what older members of the family would say). She was agoraphobic and very anxious for long periods of time, by all accounts, and I don’t imagine her diet was very good having seen how thin she was in photos. In turn, my Mum did not suffer with anxiety, but was a very hyperactive and energetic person, rarely stood or sat still, and was always quite thin. She often didn’t eat proper meals when I was growing up, instead surviving on snacks (especially sugary ones) and coffee. I remember her fainting and being sick a few times when I was a kid. And she ALWAYS suffered heartburn in the 35 years I knew her. Too late now to find out more about either of them, but I do have anxiety, and have been through phases of disordered eating so there are some similarities.
It’s funny you should mention H Pylori because I have a prescription for the breath test and have been trying to get hold of one for ages. The pharmacy don’t seem to be able to get them at the moment. I was prescribed it because I went to the GP a month or so ago to complain about heartburn and ask for some investigation. I had it continuously for several weeks, and although it is much better now, it still comes back a couple of times a week. Here’s hoping I can get hold of a test soon. That and a referral to a genetic counsellor would probably go a long way towards easing my worries a bit. (I have health anxiety 🙄😬)
@SpringCherryPie, yes you’re right that there are some earlier symptoms, but as you say, it’s things like heartburn/reflux/indigestion/bloating which are all very common and can have a variety of non-sinister causes, so I don’t imagine GPs have the resources to refer all heartburn/reflux patients for further tests. In my Mum’s case, she wouldn’t have known any difference as she complained often about indigestion during the whole time I knew her! It wasn’t until she began to lose weight (having been very slim to start with) and suffer other symptoms that she realised something was up (by which point sadly the cancer was advanced and had metastasised).