Cancer surveillance - Ronny Allan - Living with Neuroendocrine Cancer

17Jul 2023 by Ronny Allan 2 Comments

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

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 only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and…

10Jun 2023 by Ronny Allan 6 Comments

Sometimes, you gotta climb that hill, even if it hurts

Inspiration, Patient Advocacy, Survivorship

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 to keep myself in shape. The "climbing hills" metaphor can also be applied to living with a diagnosis of cancer - there are many metaphorical hills to climbOne of the first…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Musings from a metastatic NET patient of 12 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 hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

24Jul 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 worrying situation in my opinion. Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…

04Jun 2022 by Ronny Allan 5 Comments

On the Cancer Journey, don’t forget to live your life

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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 been reached. In a few cases, journeys may be extended, or new ones started. For late-stage incurable NETs, thinking your journey is going to be a short one…

08Apr 2022 by Ronny Allan 1 Comment

My illness may be invisible, but I am not – Neuroendocrine Cancer

Awareness, Living with Neuroendocrine Cancer, Survivorship

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 before making a vague announcementI had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought. Sorry too late, I'm metastatic,…

13Feb 2021 by Ronny Allan No Comments

Neuroendocrine Cancer: Follow up tests and checks

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

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 was mainly due to seeing so many different doctors for so many different issues. In reality, I was seeing and being assessed by my Oncologist around 3-month intervals, eventually moving…

21Nov 2018 by Ronny Allan 10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I have a lot to be thankful for[caption id="attachment_24013" align="aligncenter" width="1024"] Click on the picture to read[/caption] 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 announcementSorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY![caption id="attachment_14152" align="aligncenter" width="640"] Click on the picture to read[/caption]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[caption id="attachment_3720" align="aligncenter" width="391"] Click on the picture to read[/caption]No thanks for generating fibrosis throughout my mesentery and retroperitoneum!I really didn’t know what to make of this issue at diagnosis, although…

21Mar 2016 by Ronny Allan 15 Comments

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship

[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and 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 5HIAA are clearly useful 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 and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…

28Jul 2014 by Ronny Allan 3 Comments

Four years on

Awareness, Inspiration

Edit 2023: I guess I was starting to recognise 'cancerversaries' at this point. At year 5 I started the "I'm still here" series of posts. Even I was recognising my change in attitude to this diagnosis, recognising that I might just live, and live fairly normally. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as some sort of anniversary - 26 July. It was exactly 4 years to the day I received my diagnosis of Metastatic Neuroendocrine Cancer.It all began 2 months previously with a routine asthma clinic appointment when I mentioned to the Nurse Practitioner that I thought I'd lost half a stone in weight. She immediately said, "did you mean to lose the weight" and the answer…

Tag: Cancer surveillance