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 or therapy does not constitute an endorsement of that service, trial 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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2 thoughts on “Let’s Talk About NETs (#LetsTalkAboutNETs)

  • 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.

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