Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Update on NET’s Research

by | Oct 3, 2016 | 3 comments

So – we patients with full-blown Autoimmune Pernicious Anaemia stand a slightly higher chance of developing gastric cancer than the rest of the population. Doctors are not generally concerned about this as the risk is relatively low (I deal with this in my latest book).

What is potentially more worrying is the increased risk of us developing Neo Endocrine Tumours – NET’s for short. NET’s occur in between 5-10% of patients with Pernicious Anaemia, though I’ve seen estimates as high as 20%. These are usually small benign growths that can occur in various parts of the body but we, as patients with PA are more prone to them developing in the stomach. Most cause no problems whatsoever but there is the chance that they can become carcogenic which is why they need to be monitored.

You may remember that in the Summer just passed, Prof Mark Pritchard (who will be at the conference in December) and I had a letter published in the highly respected Journal of Alimentary Pharmacology and Therapeutics noting that very few patients with Pernicious Anaemia received an Endoscopy (the camera up and down) at diagnosis and perhaps this should be routinely performed to identify early any NET’s or ‘anything else’. This letter was used the results of a survey of members. Anyway the fact is that we stand a higher risk of developing NET’s that stand a chance, a small chance perhaps, of becoming cancerous – which means that they have to be monitored by taking and examining small bits of them (a biopsy).

So where is all this going? Well, after telephone calls relating to inadequate treatment and injections being stopped altogether, the third most common telephone calls to the society’s office relates to stomach cancer. Typically, the patient will ask “I’ve been diagnosed with PA and I understand that I stand a good chance of developing stomach cancer – is this right?”
Understandably the ‘C Word’ causes concern or even panic among patients. It is an overlooked consequence of Pernicious Anaemia.

But guess what? The Medicines Research Facility that I visited in London on Tuesday is looking for patients with PA to take part in a trial of a new drug, in tablet form, that ‘dissolves’ the NET’s in patients – thereby bringing to an end the need for the ‘little blighters’ to be monitored in case they became cancerous. Imagine that! A tablet that does away with the need for what can be the unpleasant endoscopy that should be taken at least once a year in patients with NET’s. And it gets better. I don’t have any NET’s, although I haven’t been investigated ‘up and down’ for around six years. And the new tablet could, and it’s a big ‘could’ be used to prevent any NET’s forming in patients with Pernicious Anaemia – not only a cure but a preventative tablet as well.

There will be representatives from TRIO, the pharmaceutical company that has developed the new drug at the conference in December where more information and the opportunity to take part in the trial will be available. In the meantime, we will start to put together a register of members who have been diagnosed as having NET’s though that won’t be for a few weeks yet as we need to work out a strategy on how this whole recruitment programme will work. Oh! And if you would like to take part in the trial you won’t have to stay in hospital, you will be seen as outpatients in various satellite hospitals around the UK and you will be regularly monitored using Endoscopy. And you’ll get your expenses paid and a free cup of strong tea and delicious biscuits – I sampled them on Tuesday as part of my evaluation of whether or not we as a society would like to be involved.

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  1. Frank Hollis

    I’ll be keen on volunteering and helping out in any way I can.

    I’m off for my NET checkup on Wednesday to make sure they’re still sitting there quietly and behaving themselves.

  2. susan childs

    I had my last endoscopy 2013 which showed atrophic gastritis. No mention of nets. How often should we be checked? I am interested in hearing more.

  3. Dilys Davison

    I’ve never had an endoscopy or been tested for NET since my B12 deficiency diagnosis in Sept 2011. Something I must tell my new haematologist in November when I see him. I’d also be keen in hearing more.


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