Neuroendocrine Cancer: Watch and wait or watch and worry?
Watch and wait Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term "Neuroendocrine Neoplasms are a group of heterogenous tumours" is commonly found in many texts. Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this 'watch and wait'. Watch and wait means that you have cancer, but you do not need treatment straight away.…
Neuroendocrine Cancer: turn surveillance into a positive
It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
2024 Update from Ronny Allan: Reassuringly stable!
In every surveillance session I’ve had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable! In 2023, I was given the headline of "No evidence…
Renal Cysts – something or nothing?
When I was diagnosed and subjected to several CT scans, each one noted the existence of a renal cyst. I was told it was nothing to worry about although I did find the size worrying on the basis I didn't think the average kidney could be so big to house a 55mm cyst! That was back in 2010 and they still mention that cyst today, but it no longer worries me. Like many cysts in the human body, these incidental findings on diagnosis are pretty common. How Common are Renal CystsSimple renal cysts are very common, and the incidence increases with…
I’m only as good as my last scan
"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
Four years on
Edit 2024: One of my early posts was entitled "Four years on". I guess I was starting to recognise 'cancerversaries', perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as…
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny AllanWhat is a NET Specialist?"What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor who is not…
Sometimes, you gotta climb that hill, even if it hurts
I started my "sometimes you gotta climb that hill" series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that. But in hindsight, I don't believe I could have done some of these hills before I was diagnosed! To be bluntly honest with myself and you guys, I was too busy at work…
Evidence of disease but stable
Musings from a metastatic NET patient of 14 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…
On the Cancer Journey, don’t forget to live your life
Many things in life can seem like a bump in the road or a journey along a windy road not sure where the next turn is. In some ways, a cancer diagnosis is another of these inopportune moments, albeit one with many facets. With incurable Neuroendocrine Tumours, many people need to be prepared for a long journey.Beware of the common trap of thinking in terms of all or nothing; or rushing to conclusions. Even with localised NETs which have been removed with curative intent, the journey may continue for a while until your doctors, and you are sure the destination has…
My illness may be invisible, but I am not
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…
Neuroendocrine Cancer: Follow up tests and checks
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET. In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…
Neuroendocrine Cancer – is normally slow growing BUT …..
I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…