Neuroendocrine cancer of the stomach

Hi all, I'm Sian, 61 yrs young and diagnosed 2 weeks ago with NETS of the stomach.  To say my diagnosis was a complete shock is an understatement,  as it completely came out of the blue and over the phone. So if I go back to late December last year, I was referred by my GP for a colonoscopy for suspected diverticular disease and when the nurse called beforehand she also advised an endoscopy at the same time due to the problems I was having.  I duly went to my appointment but was unable to have sedation as I'm my husbands carer (he has middle stage mixed dementia) and there wasn't anyone available to stay with us both. Only half the colonoscopy was performed as I was in terrible pain (mid flare) but they could see diverticular disease in the sigmoid area. They then turned the bed round and did the endoscopy,  where they found what they thought was a sessile polyp, inflammation and too much bile. The polyp was removed and sent to the lab along with 2 further biopsies.

After a month of waiting and hearing nothing I presumed (wrongly) that all was clear. I hears nothing more until April, when I was called by  appointments to tell my e I had an appointment on 11th April with the consultant but they couldn't tell me why. I didn't give it a thought thinking it 2as my DD rather than anything else. I got to the appointment to be told that the polyp biopsy had come back 'unusual ' but they weren't sure what it was 'something to do with hormones' but 'DON'T WORRY' I just needed another endoscopy to make sure it was all out. A visit ti my GP a couple of weeks later (for something unrelated) shed no further light as he thought it was possibly pre-cancerous, and not to worry. 

Finally, again out of the blue I received a call  on 8th May from a nurse telling me I needed to go in for tests, blood, urine and a CT scan. I was really confused  and asked her why? What's going on? She then asked if I'd spoken to the consultant and I replied I had back in April and he wanted another colonoscopy.  She asked if I'd received a letter or anything else ...um no. So I then asked where I had to go for the blood test? ONCOLOGY DEPT.... and then it hit me I either had, have, or will have cancer.

After spending a nearly sleepless night I called back the following day, at that time I had to track her down as I didn't have a direct number, but I Finally managed to speak to her to ask what EXACTLY is going on. Poor woman I felt so bad for her after the conversation,  she proceeded to explain that I have neuroendocrine cancer of the stomach..not stomach cancer which is what I was thinking. She gave me the NETS uk Web address and did her best to explain what was happening.

The following week I went for my blood test and actually saw my lab report which clearly stated NETS. My cells were well differentiated and they think I'm definitely type 1 possibly 2, but the tests will prove one or the other. We discussed the various treatments available and who my specialist consultant will be. She also explained that I was only flagged up to her as a junior colonoscopy nurse had been going over cases , read my lab report and instantly flagged it. I wish I could meet her to give her a hug and express my eternal gratitude as without her I'd still be walking around oblivious to the fact and receiving no treatment. 

At the moment I'm trying to come to terms with my diagnosis, as well as caring for my husband, supporting my elderly parents (my dad's just had bowel resection for bowel cancer), and support my daughter/granddaughters who's husband/father just walked out. 

I'm trying to make time for myself but find I'm banging my head and getting nowhere fast, which isn't helping my anger issues, so I'm tending to get in a right temper at the smallest things. I know I'll work itself out but at the moment I'm feeling helpless and very frustrated .