Anxiety - Ronny Allan - Living with Neuroendocrine Cancer

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…

28Sep 2022 by Ronny Allan 1 Comment

Living with cancer: 5 tips for facing things you can’t control

Inspiration, Patient Advocacy, Survivorship

I'm wired not to worry too much about something I cannot control. For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through. For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them. I once wrote an article called "Scanxiety, I just don't get it". In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for my own way of handling these test and surveillance events might help others. So based on my own experience, here are my 5 tips to face things you cannot control. 5…

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…

12Jun 2022 by Ronny Allan 7 Comments

Living with Cancer: Don’t cross the bridge until you come to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I read comments in my private Facebook community group, I can see that many people do get concerned about upcoming scans and other rest results. I think the imaging results cause the most angst because those are probably the most telling results someone with Neuroendocrine Cancer will get. Has it grown, has it shrunk? What if ....... Many patients experience fear, anxiety, and worry while waiting for imaging test results. It’s a completely normal and understandable feeling. How can you conquer this fear or is it just something you have to live with? Personally, I look at things more clinically than the average person, perhaps that's just the way my brain is wired. For example, I try not to be concerned about results over which I have little control once the…

02Oct 2021 by Ronny Allan 1 Comment

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship

I see a lot of emotional and anxiety issues in my private group. I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population. Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it. I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients. February 2020 - boom! Add in a global pandemic and all that follows and it's throwing fuel on those fires. The COVID-19 pandemic has added another layer of complexity to the fears of NET patients. Inability to travel,…

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

17Jun 2021 by Ronny Allan 1 Comment

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship

An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings (‘Emotions’) at work would make me flush though! As for ‘Eating’ – well that’s another couple of blog’s worth! Worth…

15Nov 2020 by Ronny Allan 4 Comments

If it’s not raining, it’s not training! (part 2)

Inspiration, Survivorship

As someone who was born and raised in the Scotland, and lived most of my life in the UK, I'm no stranger to inclement weather. In my 29 years years in the military, the weather was no excuse to do nothing, whether it was training or the real thing. They gave us wet weather clothing after all! There is a saying in the UK army and it goes like this "If it's not raining, it's not training". In classic British pragmatism, it decodes to "raining is normal so get on with it". In fact, one of my oldest army friends cannot wait for the torrential rain, he much prefers it to the sun! Read his blog here. We've been caught out over the years, for example back in 2016, a…

20Oct 2020 by Ronny Allan No Comments

Serotonin – it’s a no-brainer!

Patient Advocacy

OPINIONThere is constant discussion about the effects of serotonin-producing tumours and issues of depression, anxiety, and 'rage'. However, it's a really complex issue for laypeople and I have no intention of trying to resolve it in this article. However, it's clear to me from listening and reading these discussions in patient forums for many years, that most of the discussion appears to be based on years of unsubstantiated and unmoderated debate inside patient forums without professional input. This is not an attempt to bash patient leaders and forum administrators, because a full understanding of these issues needs a much wider moderation. I've spent a considerable time researching and analysing what science is known and I can tell you now that the behaviour of serotonin in the human body is not…

19Jul 2020 by Ronny Allan No Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine Cancer

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the list of known symptoms directly attributed to any of the syndromes except for the group of catecholamine secreting tumours known as Pheochromocytoma and ParagangliomaI decided to extend it to diet…

17Jul 2020 by Ronny Allan 4 Comments

After lockdown – the new normal is not normal

Inspiration

The new normal is not normal This new normal just isn't normal! I'm lucky to have beautiful forests to my east and west but to my south is probably the best beach coastline in UK. We decided to walk along a section of that award winning 7 mile bay. But we went via a shop. I had to return something purchased shortly before lockdown and like most shops which shut, this one extended the returns period due to COVID-19. The shop was a big one and easy to distance, but the preparations were very good indeed. I donned a face covering and upon entering, I was instructed to wash my hands with sanitiser before proceeding to the right department - they had a non-contact sanitising facility with a foot pump…

13Mar 2020 by Ronny Allan 1 Comment

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship

OPINION. I guess many people are feeling pretty scared right now. Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news. I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal. We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep. I don't know about you but I would hate to have survived metastatic Cancer for the last 10 years only be taken out by a stupid tiny virus because I forgot to wash my hands. Thus why I intend…

24Oct 2017 by Ronny Allan 2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

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

NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not contain all the details of the research or study – although some of the linkages will take you to in-depth information if that’s your bag. Where applicable, I’ve also linked…

08Jun 2017 by Ronny Allan 20 Comments

8 tips for conquering fear – Living with Neuroendocrine Cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion:Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on. Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement.That's not to say I didn't have any fear about what was going to…

14Dec 2016 by Ronny Allan 4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge. So, let's get definitions out of the way: Pheochromocytomas (Pheo for short) Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla…

08Sep 2016 by Ronny Allan 20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy

picture shows an actual serotonin receptor BackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't really 100% tied down - the human body is extremely complex.You may see serotonin referred to as a 'neurotransmitter', a 'chemical' and a 'hormone' - this…

15Apr 2016 by Ronny Allan 36 Comments

Neuroendocrine Cancer – it takes guts

Survivorship

The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated). However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence. Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments. Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future.However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage IV. In fact, NETs are one example where surgery at the metastatic stage can often provide prognostic advantages denied…

11Jun 2015 by Ronny Allan 24 Comments

Neuroendocrine Cancer Online Forums: frighteningly good or good at frightening?

Awareness, Patient Advocacy

OPINIONWhen I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient! So, I left it after the reigning clique found I didn't want to be part of their pity party.p.s. by "Forums", I mean any online group. Joining forums/online patient groupsIn 2013/14, I joined several large Facebook closed groups which function as forums. After…

10Apr 2015 by Ronny Allan 19 Comments

No Fear

Inspiration, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 5HIAA and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary. Why? Because testing is one thing that's going to keep me alive for as long as possible. If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough. Even in the event…

17May 2014 by Ronny Allan 1 Comment

Dr Google will see you now

Humour, Patient Advocacy, Survivorship

Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me! However, you need to be very careful in acceptance of what is credible information and what isn't.As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I mostly find there are no real or definitive answers online for many patient reported issues. Although I seem to learn something on each piece of research, I also find some really worrying stuff. Some symptoms can have dozens of reasons and I often realise…