Pernicious Anemia

[Firefly43]

Hello all you very brave people..... I’m wondering how many of you could tell me if you were diagnosed with pernicious anemia before your cancer, particularly stomach and esophagus cancer. I am researching the subject due to diagnosis of PA and finding that it seems to more often than is usual to result in these types of cancers. Thank you and best wishes to all of you x

[sallym]

Pernicious anaemia is when vit.b12 is not absorbed in the stomach. This is due to lack of intrinsic factor. It has to be given by injection usually 3 monthly. Having given this to many patients during my working life (mostly affecting the elderly or people who have had part of their stomach removed) I have never known it to be associated prior to getting cancer. Hope this helps. Best wishes sally

[Firefly43 in reply to sallym]

Thank you Sallym for your reply. I understand how PA develops and I have talked to my doctor and research has indicated that there is a higher risk of gastric cancer in people who have had long term PA, especially if not satisfactorily treated. Also blood group A is associated with a higher risk of gastric cancer. It is still however an uncommon cancer. Best wishes, Wendy

[susanrichards60 in reply to Firefly43]

Hi..

My daughter has just recieved results from blood tests that she has PA..

After having stomach cancer myself at the age of 52 and undergoing a total gastrectomy i recieve a B12 injection every 3 mnths..i was also found to have H Polori..i am 10 years post op..my daughter started having stomach problems so the Doctor & myself thought it a good idea for her to have tests done..she has also had an endoscopy ..12 biopsies and a breath test done on which we are waiting on those results..

Suzy x

[susanrichards60]

Forgot to add i am blood group A and so is my daughter..x

[Firefly43 in reply to susanrichards60]

Oh Suzy just the information of persons with either or both blood group A and gastric cancer. I thank you very much for sharing your experience with me. How long had you had H pylori or PA before you were diagnosed with gastric cancer? I have only been diagnosed with PA for 6months but it had been there for some years the doctor thinks as the B12 level was very low and iron stores close to nil. I am to have an endoscopy in April to just check on what’s going on in my stomach.

I am hoping like mad that all will be well with your daughter, it is so hard waiting for results and that you stay as well as you can be Could you let me know how your daughters tests go please? My very best wishes, Wendy

[AoifeMcC]

I only got diagnosed with pernicious and regular anemia post surgery - the injection is not that bad, I do not have the blood group A.

[Firefly43 in reply to AoifeMcC]

Thank youAoife for your reply. I agree that the injections aren’t too bad and as they are helping a lot, I am happy to have them. When you say post surgery, did you have a gastrectomy before you knew you had PA? My endoscopy is not till the end of April so I have a way to go yet and am hoping it will be ok. Just getting to go on the celiac diet which has already made a difference to how I am feeling. Best wishes from sunny Australia 🇦🇺 xWendy

[AoifeMcC in reply to Firefly43]

I had my full esophagus removed so my stomach was reshaped to be both - the pernicious anemia was diagnosed post surgery in regular blood tests. I did go on to have my children post the surgery as well though I need to get the regular anemia sorted as well at this stage as I cannot absorb iron either from my diet post surgery. I do have type 1 diabetes, hashimotos thyroiditis and sarcoidoisis which are all overactive immune system diseases but I am not a celiac.

Best wishes, Aoife

[Firefly43 in reply to AoifeMcC]

These autoimmune diseases are seemingly very numerous. Aoife thank you for sharing that information with me, I’m learning so much from brave people like you who ar generous enough to help in supplying first hand information that just can’t be found elsewhere. I hope things go well for you and again thank you. Best wishes, Wendy.

[susanrichards60]

Hi Wendy,

Pleased i could give you some of the information you had been looking for..

I had been visiting my Dr (GP) regularly for over 12 mnths with stomach problems it was only after blood tests that H Pylori & PA were found also antibiotics given..which led to an endoscopy and biopsies..they could'nt tell me how long it had been there but it all resulted in a total gastrectomy..

My daughter has had tummy problems for a long time as she also suffers with IBS but the feelings of feeling generally unwell for a long time have resulted in blood tests resulting in PA of which the Dr was surprised to find which has led to an endoscopy, biopsies and breath tests being done..

I will let you know how it goes for her..thank you for your well wishes.

I hope your endoscopy goes well and its all good news.

Suzy xx

[Firefly43]

Oh no Having your stomach removed must have been so hard for you I am shocked!! Are you recovering well? I do hope so. Just had another read of your post and see that the gastrectomy was quite a while ago so I guess you have adjusted. I would think it would be an ongoing problem to be managed. This brain fog, that sounds all over the place 😔

These auto immune clusters of different conditions are a big worry, you never know what is coming next!

I have just found I have celiac disease as well so am working out the gluten free food available and must say I don’t have a lot of gluten containing food anyway.....sigh

Thank you so much for sharing your ongoing story with me. I hope your daughters tests prove fine. I can’t have my endoscopy till the end of April so there is a way to go. My very best wishes Sue and please let me know how your daughter goes. Fingers crossed xx Wendy

[susanrichards60]

Hi Wendy ..sorry to hear you have had more bad news as regards to celiac desease..stay strong and address your issues one day at a time i'm sure you will get everything sorted with the help of the medical profession..

I am 10 yrs without a stomach this April and it's a case of having to adjust and move on, having a total gastrectomy has bought other problems and health issues.. life has been a very difficult journey over the past 10 yrs but i stay possitive with the help of a very supportive and loving family.

Wishing you well for the future..i will let you know how my daughter gets on.

Best wishes

Suzy xx

[Firefly43]

Hi Suzy, thank you, I believe a positive attitude is absolutely essential to living the best life you are able to regarding your health. I am grateful every day that I live near the beach, a nice roof over my head, loving friends and family even though my two sons live in other states, and many other things. I am nearly 75 so I am also grateful that I have only had these issues relatively late in my life. I agree with you that it seems that you just deal with what ever comes around the best way you can and be thankful it is not something much worse.

A lovely warm sunny day today, a little swim and some more Olympic Games watching and I’m happy. Tomorrow willl come soon enough and I’ll deal with it then. Best wishes, Wendy xx