Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy
Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases.  In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you suddenly appreciate how important they are.  Hormones are involved in many conditions, not just an issue with Neuroendocrine Tumours (NETs) but the presence of over-secreting hormones (often called peptides throughout)…
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Living with Neuroendocrine Cancer – the 7 Year Itch (now 14!)

Living with Neuroendocrine Cancer – the 7 Year Itch (now 14!)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier".  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer.I've recently had a ton of '7 years…
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Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy
BackgroundSome people on hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Cancer.  Most of them will 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…
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I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Updated Feb 2024. BackgroundNeuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, many diagnoses of NET can be extremely challenging.  Even for an experienced doctor, it can be a difficult jigsaw!Most types of NET can have associated 'syndrome' i.e. the tumours are 'functional' and this is normally (but…
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