PPoma - Ronny Allan - Living with Neuroendocrine Cancer

24Apr 2023 by Ronny Allan 5 Comments

The NET Detectives

The NET Detectives is an awareness post.Detecting NETsIn general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in the investigation, another hunt for clues.The number of cases where incidental diagnoses occur is fairly significant in certain types. I have no numbers but appendiceal NETs are a good analogy. Symptoms are…

30Oct 2018 by Ronny Allan 9 Comments

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

Awareness

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, weight loss, weight gain, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood…

28Sep 2016 by Ronny Allan 23 Comments

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…

15Sep 2016 by Ronny Allan 19 Comments

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison's disease (which may be secondary illnesses in those with NETs). It's also possible that 'non-sydromic' issues such as stress and diet are contributing. It could be caused by…

10Aug 2015 by Ronny Allan 16 Comments

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

Awareness

The Syndromes of Neuroendocrine Cancer - Early Signs of a Late Diagnosis One of the curious things about Neuroendocrine Cancer (NETs elsewhere in the text) is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'. Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease". Having a syndrome can often be the difference between having a 'functional' condition or a non-functional' condition - see more below. This frequently makes Neuroendocrine Cancer very difficult to diagnose quickly. It's a very devious disease. It's NOT all about Carcinoid Syndrome! Most people think of Carcinoid Syndrome when they discuss NETs. Anyone suggesting that all…

16Oct 2014 by Ronny Allan 14 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy

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) is useful to aid a diagnosis, albeit…

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