Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: ronnyallan.com and/or NET Cancer Blog   Thanks for reading Ronny I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life! Please Share this post
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Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever…
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NET Syndromes – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Technical NETs
We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' and not one of associated 'Neuroendocrine Tumours'.  So which comes first?  I guess it's the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios.  Alternatively, a tumour…
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Neuroendocrine Cancer – If you can see it, you can normally detect it!

Neuroendocrine Cancer – If you can see it, you can normally detect it!

Living with Neuroendocrine Cancer, Survivorship, Technical NETs
[caption id="attachment_7944" align="alignnone" width="965"] Octreoscan vs Ga68 PET[/caption] Scanning is a key diagnostic support and surveillance tool for any cancer.  Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it.  Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one.  Even in the case of a story about late diagnosis or a misdiagnosis, I find…
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Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs, Treatment
I think most people have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. In a nutshell, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a physician's reaction to symptom presentation or maintenance/surveillance of an existing diagnosed condition. Sometimes, abnormal results will lead to more specialist tests. In cancer, these tests are frequently called 'markers'. Most tumour markers are made by normal cells as well as by cancer cells; however, they are produced at much higher levels in cancerous conditions. These substances can be found in the blood, urine, stool, tumour…
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Running in the Family – Multiple Endocrine Neoplasia (MEN)

Running in the Family – Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine Cancer, Technical NETs
We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN).  I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine related effects. Overview MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues).  Neoplasia is just another name for tumour and these can be non-cancerous (benign) or cancerous (malignant) with the potential to metastasize. MEN syndromes can comprise varying combinations of tumours and many will be aware of the tumour risks from family knowledge.  So putting…
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