Let’s Talk About NETs (#LetsTalkAboutNETs)

Caption: Talking to Ipsen 2016

I do a lot of writing about NETs but I guess I’ve also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were either not recorded or I don’t have access to them for various reasons.  I’ll list some of them below for your perusal.  I will keep adding them so they’re all in one place. 

Published talks

I was invited by their President Jackie Herman to talk to patients and caregivers via a CNETS Canada-sponsored webinar.  The topic was “patient perspective and journey”. Have a listen by clicking on the picture below (or here). 

Click on the picture to play

Ipsen Pharma - 2016

I was invited by Ipsen to help produce some videos for a website they were building – it’s called “Living with NETs” and I also helped them, along with other patients, with the requirements for the content.  The video below was my patient story but there were around a dozen videos featuring myself in total.  

Neuroendocrine Cancer UK 2021

I was invited to talk to the Neuroendocrine Cancer UK World NET Day Conference by their CEO Cathy Boulevard.  The topic I was asked to cover was “Becoming Your Own Expert“.  Have a listen. 

Middle East NET Society - 2021

I was invited to talk to the Middle East World NEN Lives Conference by my friend Mike Rosenberg.  The topic Mike gave me was “Living with NETs as a Chronic Disease”

I’ll add more as time goes on. Thanks for viewing and listening. 

WEGO Health - 2016

Not a video but a podcast, basically you get to listen to me without seeing me!  This was a special podcast after winning the 2016 WEGO Health Awards, Best in Show Community award.  Check it out!

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.  Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity.  Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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8 thoughts on “Let’s Talk About NETs (#LetsTalkAboutNETs)

  • Terry mcginness

    Ronny, the NET consultant who has re-reviewed my pathology is of the mind that I do not have NETs, but MCC Merkel Cell Cancer which (apparently) is also defined as Neuroendocrine Skin Cancer. Also the output from the Gallium scan shows ‘something lit up’ in my neck and lung that will now be biopsied. I’m awaiting the MDT to get back on what happens now.
    I’m confused as hell, I don’t have any skin presentation of the disease that is visible. I’m NOT looking at google, it all looks pretty scary and I feel all at sea.
    Thanks in advance for any wisdom you can provide.

    • Terry mcginness

      Ronnie, I’m sorry I thought my update had not posted correctly, but now I see you did.

      Thank you do much for replying and I’m so sorry to have bothered you with a double post of my latest update. I hope it is ok to keep you informed.

  • Terry mcginness

    Hi Ronnie, latest update following my Gallium scan. The NET specialist who took over my case has re-examined the pathology and is of the view that my diagnosis is incorrect, I do not have NETs but rather, Merkel cell cancer. I didn’t know whether to be relieved or cry or be mad or a mixture of both. If you had not encouraged me to pester to get to the bottom of this I would not be where we are now. The Gallium scan has apparently ‘lit up’ an area in my Lung (that was previously stated as not cancer) and also lit up an area in my beck where the original growth was removed from. They want me now to have biopsies of both ‘lit up’ areas. I’m frustrated and depressed and confused at hell and my head is just spinning at yet another, different, cancer diagnosis. Your thoughts and any wisdom would be appreciated. Terry

    • Hi Terry – well perhaps you are closer to finding out exactly what is going on, as I said, your original diagnosis didn’t make much sense to this layman. Technically MCC is a type of Neuroendocrine Carcinoma. Actually, I have a lady on my site who keeps complaining she is the only one.

      I think you should wait for the fresh biopsies before going public with this though. Thanks for letting me know and I will await your next step which is the new biopsies. Take care for now.

  • Terry Mcginness

    Hi Ronny, I’m sorry if I’m in the wrong place to tell this story that I thought/hope might be of interest.
    In Feb this year I had my first Covid jab and three days later I noticed a lump in my neck – like a swollen gland. It didn’t go away and my doc sent me for an ultrasound.
    The radiographer thought there was a small node that should be biopsies. A week later I was floored to hear the biopsy diagnosed it as a poorly differentiated Neuroendocrine tumour and my world began to collapse around me.
    I was referred to the NET’s oncology group at Edinburgh Western General who moved quickly to have CT and PET scans of abdomen, Lungs, chest, head and neck.
    During this long troubling and very worrying time it was interesting to all that the lump in my neck started to subside. The results of every scan was negative, no apparent cancer in the scanned organs, but the Oncology MDT still found it prudent to remove what remained of ‘the tumour’ in my neck plus the adjacent lymph nodes. The pathology results of this procedure showed no evidence of NETs again and the medical then worried that an administrative error may have mixed up the biopsies. DNA tests on both biopsy samples showed they were from me.
    Three months on I have just had further head and neck And body CT scans and all appear healthy.
    I am of course massively relieved, but it has also left its mark on me as the neck surgery damaged my facial nerve and I have some face palsy which is emotionally very challenging.
    This whole thing has left my oncology team baffled that the diagnosed ‘Net’ appeared just to go away.
    Any views or insight would be welcomed, this has been a very traumatic six months, although again I feel blessed to be healthy.

    Best regards, Terry

    • my antenna is working overtime here. I am thinking all sorts of scenarios. Firstly, let me say that poorly differentiated (i.e. a Neuroendocrine Cancinoma rather than a Neuroendocrine Tumour) is a very serious cancer much like the adenocarcinomas we see all the time including pancreatic cancer, breast cancer, prostate, lung, colorectal. The neck is quite a rare location for a Neuroendocrine tumour. There is a type called Paraganglioma which is a relatively indolent type that can be found in the neck but these are not poorly differentiated tumours. I am very suspicious of the lump being somehow related to your vaccine as we now know they do cause enlargement of lymph nodes but normally in the armpit area close to the site of the injection – I myself have encountered that on a Ga68 PET scan in July. Particularly as your “tumour” has disappeared. You mentioned scans above, presumably you got a regular PET (FDG) rather than the Ga68 dotatate/dotatoc ?

      While I realise you have had DNA checks on both samples, personally I would be minded to ask for a review of all the pathology and a second opinion from Beatson cancer centre in Glasgow – they are a European Centre of Excellence. I would also be asking about the possibility this was a Paraganglioma and the possibility this was just an enlarged lymph node(s) from the covid injection. There is widespread evidence of this happening. Swollen lymph nodes are a potential side effect of any vaccine because the whole point of the vaccine is to get your immune system to mount a response to whatever the vaccine agent is and the fact that lymph nodes swell is a sign the vaccine is doing its job. But it seems that the COVID-19 vaccines can cause a more robust swelling in lymph nodes. This might not be the reason – the pathology was clearly showing ‘something’ but it’s worth posing that question. Doctors will probably be horrified by the suggestion but it’s your life.

      Recurrence is a worry for most cancer patients, and you would not want a poorly differentiated tumour to re-occur as it would be a challenging prognosis if it were to turn up downstream in the liver.

      • Terry mcginness

        Ronny, I wanted to write to thank you for your reply to me last year on your thoughts around my NET neck diagnosis – you encouraged me to prod a bit and even seek a second opinion as it perhaps didn’t add up.
        I did just that and am now newly under the care of a professor Mark Strachan in Edinburgh Western General.
        He has said to me ‘all bets off’ and he wishes to start again in getting to the bottom of.
        I’ve since had a Cat Scan to Lungs, which has identifies an area of ‘nodules’, some big some small, some shrinking since last scan. The Lung oncologist and radiographer said in their view there was nothing cancerous to report.
        Following this I had a Nuclear ‘Tech?’ Scan, which apparently showed some ‘light-up’ in some of the nodules but is inconclusive.
        I’m now having a ‘gold standard’ Galium scan on Thursday to further explore.
        The professor has said that in 30 years of practise he has never seen a NET originate in the neck and then apparently vanish, and also he would have expected signs in many other parts of my body, based on the neck diagnosis, so they are flummoxed, but determined to get to the bottom of.
        This includes him re-reviewing all of the pathology from the original biopsies. It has been almost a year living under this cloud and I am hoping that this might be an end game (either way). I still have the psychological struggle of having some face palsy as the result of the neck tumour and lymph node removal.
        Thank you for your wonderful note that inspired me to push the NHS for more answers – and for the comment that stuck with me – ‘this is your life’.
        I hope I can keep you posted.
        Terry

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