Concern about PA and Cancer - Pernicious Anaemi...

Pernicious Anaemia Society

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Concern about PA and Cancer

Purplegirl2 profile image
15 Replies

I’ve been diagnosed with PA and I get weekly to every 2 weeks injections. I have anti parietal cell antibodies. I was very young when I was first discovered to have PA (age 18 yrs old) and b12 deficiency (I had megaloblastic anemia). Since diagnosis I’ve stayed up to date on the latest research articles. I noticed that just about all of the patients are between 40-60 years. I also know that PA is a big risk factor for gastric cancer. I worry about my own longevity and how many more years of life I have ahead of me and if I already have PA my stomach lining already has damage and I worry about getting cancer at some point. I have no family history of PA so I don’t know why I’ve had it so young. I just felt like sharing how I’ve been feeling, I didn’t mean to cause alarm with my post but I can’t help but feel some dread.

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Purplegirl2
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15 Replies
Nackapan profile image
Nackapan

My daughter was young too when eventually very low b12/folate ,megobolastic anaemia too was found among other things .

No family history at that point 😕

The main thing is getting as well as possible and knowing what to treat.

Clivealive a good example !!

We all carry a potential risk or predisposition to something.

Fo example other conditions from early childhood like diabetes ect.

I'm sure you can be monitored.

On a positive

at a younger age healing is quicker also recovery / management seems better going by posts and observation.

If you are functioning okay try and dwell on the positives or weigh up the actual probabilities.

Talk through worries .

Contact PAS if helplines on again.

wedgewood profile image
wedgewood in reply to Nackapan

Well , please do stop worrying. . Your P.A. is being treated , which is brilliant . Yes we know that P.A. causes low stomach acid , which. can mean poor absorption of other vitamins and minerals , so taking a modest vitamins and mineral tablet helps . Get a good balanced diet, to make sure that your immune system is in best order .

P.A had only been “ discovered “and treated in relatively recent times , so who knows if some of our ancestors suffered unknowingly from P.A ?

Best wishes

Nackapan profile image
Nackapan

N.BYou've another reply for you from Wedgewood above

dot-dash profile image
dot-dash

You've probably read more research than I have - but even though gastritis is recognised to increase the changes of getting gastric cancer, it's still a low chance in relation to anything else that can happen in the rest of your long life.

I was told to try to get a screening endoscopy every four years (also PA diagnosis, parietal cell antibodies)

As wedgewood advises, please treat yourself and try not to worry.

Purplegirl2 profile image
Purplegirl2 in reply to dot-dash

thanks I think you’re right. Now that I’ve had a night’s rest I’ve been able to put it in perspective. We can’t predict the future, we all have our family history and biological predispositions, it’s not destiny that I will necessarily get cancer or this specific type. The every 4 yr screening seems like a good plan though. I’m going to be finding a gastroenterologist to check up on things.

Cherylclaire profile image
CherylclaireForum Support in reply to Purplegirl2

Remember as well that anxiety is a fairly common symptom asssociated with B12 deficiency.

If you want to talk to someone more your own age, you could try a post asking for that in the title ? Might help to put your mind at rest.

There are always people here willing to help, or just chat. There are also sciencey people available here.

Monitoring and regular screening can be arranged through your GP. Hope you have a doctor you feel able to discuss this concern with.

Dilly_blue profile image
Dilly_blue

I have gastric parietal cell antibodies too. Regarding risk of cancer, there are perhaps lifestyle things that you can do that may help reduce the risk (from research articles). From memory, inflammation and oxidative stress are things that can increase risk of cancer, so reducing inflammation and oxidative stress in the body could be a positive step.

Certain foods can be useful in this regard; dark coloured berries have good antioxidant properties, which can help reduce inflammation / oxidative stress (I try and have a large handful of blueberries (I buy frozen) for breakfast every day. And things like turmeric have anti-inflammatory properties (I found a lovely herbal tea with turmeric in (called ‘feel new’ from pukka).

Gluten can be an irritant to the stomach, so it may be worthwhile experimenting with reducing intake.

Reducing exposure to oxidative stress through things like stopping smoking is a good idea.

If overweight, then losing weight and keeping a healthy weight is also important.

There can also be a potential role for trying to manage the bodies’ response to glucose (insulin); ‘flattening out’ glucose / insulin spikes (as these spikes can contribute to inflammation in the body). Jesse Inchauspe wrote a good book called ‘the glucose revolution’.. acetic acid (vinegar; eg a tablespoon of cider vinegar in a glass of water, or a vinegar dressing on a green salad etc) before a meal can reduce the bodies’ insulin response, and altering the order in which you eat foods can also reduce the insulin response. Reducing snacks beteeen meals also reduces the number of times that insulin spikes.

And using a type of intermittent fasting, or eating within a time window (so that there is a good period of time when your body is not processing food) can help your body to maintain itself and repair damage, and clear away damaged cells.

And sleep is also very important in this regard; if you can get good quality sleep, ideally 8 hours that has massive health benefits.

As someone else has mentioned, getting monitored every 4 years is important.

And I want to be clear, I am not saying that this is how you treat cancer, and I would never advocate for someone to avoid conventional cancer treatment once diagnosed.

These are just lifestyle things that can be done to reduce risks of developing cancer, and can be a positive thing to help you feel more in control of your health and future. Sorry for long post!

Wwwdot profile image
Wwwdot

I understand the fear and fully relate to how you feel - I went hot and cold when I read up on PA after my diagnosis and felt low for some time until I came to terms with it.

However, six months in my quality of life is better than it has been for a long time. I now brew my own kombucha, milk kefir and water kefir and pickle my own vegetables (aka sauerkraut). My stomach pains and bloating and irregular stools all cleared. I feel in control now that I understand what my body wants and needs.

I learnt to self inject every other day despite a phobia of needles by focussing in the liquid in the syringe - a form of mental blinkers.

I am confident that you will also feel better in time - it’s a huge learning curve and shock to the system but we are all far more resilient than we think. Hang in there!

Silverfox2 profile image
Silverfox2

I'm also deeply concerned about this. Ever since I discovered I had PA I've been bringing ip gastric air until it's almost constant, :( I have a Hiatus hernia and that doesn't help. It's only when I realised that I was sleeping lower and lower in my bed without burning my throat (for many years I've had to seep practically upright ) that I realised something up up. Now I'm really scared.

Doing my research Its' been over 6 years since this started and apparently thats peak time for a cancer to develop. :(

My GP is useless sadly. I self inject once very 2 weeks although I know that won't effect the stomach issues. I also have heart failure and Interstitial cystitis.

Purplegirl2 profile image
Purplegirl2 in reply to Silverfox2

is there a way you can see a gastroenterologist and get an endoscopy done?

Wwwdot profile image
Wwwdot in reply to Silverfox2

Silverfox

It’s a horrible feeling when you are bombarded by worry. But worry and stress is the food of disease. So bearing that in mind take hold of your thoughts and replace the food of disease with a joy for life which produces chemicals in your body which support your immune system.

There are also foods known to build resistance to cancer - the cabbage family, kombucha, milk and water kefir and picked vegetables whereas refined sugar weakens the immune system. I brew my own kombucha and kefir and it is surprisingly easy and fun to do. I feel so much better and stronger and it reduces my fear of the future .

I hope you find a way to not worry so much.

I wish you all the very best.

Silverfox2 profile image
Silverfox2

Not yet as I'm still trying to get my first Covid Vaccination would you belive! I'm housebound and so getting a nurse to give me one appears to be nye on impossible. My god, it's all such a mess!

Cobalt1312 profile image
Cobalt1312

Purplegirl2, I was diagnosed at 34 with PA and I can relate to feeling like I'm too young to have the disease and feeling dread about what complications might lie ahead. I was easily developing B12 deficiency symptoms 10 years before my diagnosis. It seems to me like you're being very proactive and taking an active role in making sure that you're doing all the right things for your health.

I just wanted to validate that you're not alone in this and it seems like you're highly invested in making adjustments needed to keep your health in the best shape possible. Well done for reaching out. Sending hugs

MissPoshOxford profile image
MissPoshOxford

Hi, I understand your concerns, I had Iron Deficiency Anaemia aged 13, never improved with iron tablets, eventually diagnosed with PA aged 26. I have been tired my whole adult life and have worried like you, read lots of medical things etc. From my experience of a lifetime of being a worrier (I'm 48 now), the answer is not to worry. You have this condition and you can live with it, it is exhausting, brain fog, cold hands feet, etc etc but you are getting the right treatment. I have no family medical history of PA at all, you can investigate and overthink but still gain no clear answers. I work full time, have Chronic Fatigue Syndrome and am now perimenopause after 15 years of struggling with endometriosis and unable to have children. Sometimes I think why me but then I stop overthinking and think this PA is not going to beat me! I have struggled with weight gain (partly menopause & HRT) and I get so frustrated with the ridiculous level of constant tiredness (even with 4 weekly B12 injections) and it feels like an ongoing battle sometimes but I try and laugh at myself sometimes. Laughter is a great tonic (PA symptom depression) and realise I have had 30 years of this tiredness but worrying is not worth it. Stop reading up on articles, stop worrying, enjoy today, you have years ahead of you to enjoy. Exercise (when you are not exhausted) lifts your mood. If you do want to get advice from others go to the PA forum, read Martyn Hoopers book. You are not alone. Take care lovely. And don't worry! xXx

Purplegirl2 profile image
Purplegirl2 in reply to MissPoshOxford

thank you I really appreciate your comment. I have hope that the more frequent injections will help me get my life back. The fatigue is the most debilitating symptom I agree. I miss having the energy to not only to get important things done efficiently but to have the energy to have fun and enjoy my life. Lately it feels like I’m in survival mode. It feels like my personality had changed a lot too. I don’t have the energy to care about the things I used to.

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