I’m surprised that the article didn’t mention that P.A. antibodies don’t just affect the Intrinsic Factor. The antibodies destroy the parietal cells , which don’t only produce the Intrinsic Factor , but also Stomach acid . Stomach acid is very important in keeping the stomach flora ( the good bacteria) healthy . Loss of stomach acid can cause poor absorption of all vitamins and minerals., including B12 . We are now hearing that a healthy gut microbiome is extremely important to our overall health .
In fact loss of stomach acid alone can cause B12 deficiency ( see effects of PPIs that are taken for too long ) P.A. Patients can look after their guts by taking a probiotic— capsules , Symprove , natural probiotics like home made kefir, yoghurt and kimchi . Taking an acidic drink with meals , Betaine Hydrochloric acid in severe cases , eating smaller meals in a relaxed way , all help .
Stomach cancer is no longer such a huge threat to P.A. patients . We understand so much more about it . Our gut biome is the most important factor in our immune system .
Sorry for going on so Sleepybunny . I’m a bit obsessed . Thank you very much for forwarding that article. You are so brilliant with all your information.
The risk of developing gastric adenocarcinoma for those with PA is anywhere from 3-fold to 7-fold increased risk and I've seen it in some papers as high as 13-fold increased risk. Translated 13-fold means 1,200% increase. This is not trivial and therefore in the US Standard of Care protocol is to have a endoscopy (gastroscopy in UK) within 6 months of PA diagnosis to screen for gastric cancer and perform a gastric mapping in accordance with Sydney protocol (random biopsies) to assess future risk and determine periodicity of future endoscopic surveillance. Europe and the UK have a similar protocol for those diagnosed with PA using the MAPPS II guidelines. The real issue is that they really don't have good data on the pool of those afflicted with PA to properly assess the risk. But there is a significant increased risk.
I had my endoscopy within a month of my PA diagnosis, and they found my gastric cancer. in the Fundus right where the parietal cells are. I only thank God, they found it early enough to excise it through endoscopic resection and that is cured. But they assessed my personal risk of having another instance as very high, so I now have endoscopies every six months to screen for cancer. It's sort of like a game of whack-a-mole! find it early excise it, its cured. find another one excise it, it's cured and so on. The importance is there is a short window to catch it before it reaches stage 1 where it can be excised through endoscopic resection. At stage 2 or 3 it requires some form of gastrectomy and Chemo. At stage 4 they'll just make you comfortable and give you chemo.
It is the 6th most common cancer and 4th most common cause of cancer-related death in the world. Gastric cancer is deadly, its' asymptomatic until usually stage-4 where it has spread (metastasized). Catch it early and it's simply 100% curable catch it at stage-4 and the five year survival rate is about 7% in the US. There are no statistics for this in the UK. However, the five year survival rate for those with stage 3 gastric cancer is 25%. Meaning 25% of people will live to 5 years after their gastric cancer diagnosis. Here are some statistics for UK.
My suggestion is for anyone diagnosed with PA to have that first cancer screening done. It just may save your life. Personally, I did not want to rely on statistics, and I was lucky for that.
I don't mean to scare anyone, although it is scary, my gosh when I was told I had cancer my world stopped! BUT I sort of do want to make anyone with PA VERY concerned and to get properly diagnosed and screened for cancer.
I guess my personal connection with this puts me on a soapbox at times.
It is important to know your family history of gastric cancer, is there any? also if you have type-A blood are increased risk factors.
But thank you so much Sleepybunny for bringing up this topic. And please don't bet on statistics!
The trouble here in U.K. is getting a diagnosis of Pernicious Anaemia ( N.I.C.E. refers to it as Autoimmune Gastritis ) . The fact that the IFAB test cannot be relied upon is a huge drawback . Also GPs in UK do not have good knowledge of it .. Many NHS GPs are reluctant to refer patients to consultants . We rely very much on our own initiative. This means ££££s
Thanks very much for your own story on this . Much appreciated .
Yes, it is the same here in US. I went through 14 doctors just my first year and a lot of self-pay $$$$ to get a proper diagnosis. So it is definitely an issue. But to self-treat we must know that PA, for many, as I like to say "It Ain't Just B12" 🙃
I’m not sure we’re any better off even if we have a diagnosis of PA since the guideline suggests a ‘gastrointestinal endoscopy if they have new upper gastrointestinal symptoms (for example, dyspepsia, nausea or vomiting) as these could suggest the presence of cancer’.
Rexz’s very informative reply (thank you Rexz) says that cancer is likely to be without symptoms until stage 4 is reached and at that stage there’s a 7% survival rate.
I hope you are doing well. just reading this post on Gastric Cancer and PA, I was wondering if you had a stomach that was causing many symptoms? I had a endoscopy about 3 or 4 years ago and diagnosed with gastritis and had a mild forming ulcer with inflamed and bleeding in the stomach but that was it. no other treatment was ever done. so by now I'm wondering after finally having the diagnosis of PA and B12 D and having so many stomach issues and pain its been a long while. did you have a lot of symptoms when they found the cancer?
There is a recommendation in new NICE B12 deficiency guideline for people with autoimmune gastritis/Pernicious Anaemia to be monitored and referred to gastroenterology.
Your post is very timely and very unsettling - that's no criticism of you or anyone contributing to this post.
September 2022 I was referred by my GP for an urgent gastroenterologist appointment due to persistent diarrhoea, stomach cramps, bloating, poor appetite and unable to eat more than once a day. My father died at 68 years and younger brother died at 56 years, both with bowel cancer.
I was diagnosed with PA a month later (by symptoms and B12 level given I have always eaten meat, never taken PPIs). B12=106 ng/mL (145.00-914.00 ng/L), folate=4.4 ug/l (no range given), Vit D=35 nmol/l (no range given), Ferritin=90 ug/l (11-307 ug/l), potassium 4.7=mmol/L (3.50-5.00 mmol/L).
I read up about PA and worried myself sick that I may have stomach cancer. I was told there was an 8 month waiting list to see gastroenterologist despite the urgent referral.
Fast forward to last week when I eventually had 30 precious minutes to discuss symptoms, over the last twenty two months.
I said I had self treated for SIBO (small intestine bacterial overgrowth) and H.Pylori based on symptoms. I explained that I no longer experience persistent diarrhoea, stomach cramps, bloating, poor appetite and could now eat more than once a day but only if I take Betaine and Pepsin before meals. I explained I was self-injecting B12 which had peaked at 4 a day but now I was able to function well, and go back to work with one B12 jab a day.
Gastro said that based on my current bloods folate >20 ug/l (no range given), Vit D 153 nmol/l (no range given), Ferritin 96 ug/l (11-307 ug/l), potassium 4.0 mmol/L (3.50-5.00 mmol/L) my self treatment was clearly going in the right direction and reassured me that I have no greater risk of developing stomach cancer than anyone without PA which I accepted. But I am now worried.
Gastro suggested that I should continue to do cancer screening via a stool test for peace of mind, but that there was no need for any further investigations.
I am unsure what to do now. I am so angry with myself for accepting what I was told - I suppose subconsciously, I wanted to hear and believe what she said.
Wwwdot I've DMd you also. Your gastro is incorrect. Pernicious Anemia is a late stage manifestation of autoimmune gastritis. By the time you get to PA many if not most of your Parietal Cells have been destroyed (hence low or no gastric acid and no IF) as these cells are destroyed your body in its attempt to heal replaces them with cells that are called Gastric Intestinal Metaplasia (GIM). GIM is a known precancerous lesions. Now most with PA do not progress to cancer but in some people they do. GIM looks like they belong in the small intestine hence the name. I call them my imposter cells. My guess is your gastro knows little about the replacement of epithelial cells with GIM. This also has zero to do with B12 or any of your blood test results.
But again the majority of those with PA will not progress to cancer. BUT all should have an initial screen. I will try and find the surveillance reference from NHS.
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