Survivorship - Ronny Allan - Living with Neuroendocrine Cancer

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

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…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

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

Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list:1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list.2. For numerical terms, please click on the hashtag (#) symbol in the A to Z strip.3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary, and ensuring all definitions…

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…

18Sep 2022 by Ronny Allan No Comments

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, Survivorship

An opinion postCureI once wrote an article called "Neuroendocrine Cancer - can it be cured". In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be. At the other end of the scale, I covered guidelines where doctors talk about removing tumours with "curative intent", clearly in reference to small localized tumour scenarios. I'm pretty sure in my own mind that this does happen. As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing "no follow up" related to size and…

05Aug 2022 by Ronny Allan No Comments

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Clinical Trials, Inspiration, Patient Advocacy, Survivorship

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell. Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial. Although the story I am attaching says "Neuroendocrine Tumors" throughout, with that prognosis and the treatment he received (chemotherapy and immunotherapy), I'm reasonably confident he had a Neuroendocrine Carcinoma (Colon primary) or a Grade 3 Well Differentiated NET. Nonetheless, his story is relevant to many people's experiences across the broad spectrum of Neuroendocrine Neoplasms (NENs). And if I am right in my assumption, even with a poorly differentiated type, there is the hope of a better prognosis. Wishing Curtis the very best. Read his story below.(Please see my disclaimers…

26Jul 2022 by Ronny Allan 14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 12 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction…

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…

12Jul 2022 by Ronny Allan 2 Comments

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, Survivorship

Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available. We both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020. To this day, we (mostly me) remain slightly paranoid about protecting ourselves. e.g. I have maintained the habit of not touching door handles with my bare hands to this day. My…

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…

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…

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 announcement I 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…

03Jan 2022 by Ronny Allan No Comments

Blog review and top 10 for 2021: RonnyAllan.NET

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

I should be happy with over a quarter of a million views in 2021 but I'm not! Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project. I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer outlets for my blog posts. Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…

20Nov 2021 by Ronny Allan 2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first few days I was suffering a lot of fatigue and brain fog from the morphine/painkillers. The thought of posting stuff on Facebook was far from my thoughts. I was receiving…

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,…

11Sep 2021 by Ronny Allan No Comments

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment

Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…

09Sep 2021 by Ronny Allan 6 Comments

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Updated and reviewed 10th June 2022OPINION.FOR UK NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients. One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned. This is based entirely on my own experience and decisions. I also declare no interest in any of the companies listed, i.e. I am not receiving any free or reduced cover or any financial incentive for mentioning a particular company. I do this to try to help others. I first started supporting this issue via Macmillan in 2017 but they have…

02Sep 2021 by Ronny Allan 6 Comments

I thought I was going to die. I didn’t

Inspiration, Patient Advocacy, Survivorship

I thought I was going to die, I didn't Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person. It's known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors…

08Aug 2021 by Ronny Allan 1 Comment

Cancer-related fatigue (CRF) – Neuroendocrine Cancer

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

In my patient support group of 7000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for quite a while leading up to the diagnosis. That said, I gradually got back into old ways after diagnosis and pretty much continued to put my tiredness down to the same…

04Aug 2021 by Ronny Allan 8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

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

Caption: Talking to Ipsen 2016 I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. I will keep adding them so they're all in one place. Published talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust. As usual, I was only too happy to help. …

26Jul 2021 by Ronny Allan 7 Comments

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction in the general area of the mesentery and in the…

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…

31May 2021 by Ronny Allan 4 Comments

I have walked 500 miles and I will walk 500 more (….. sing along)

Inspiration, Living with Neuroendocrine Cancer, Survivorship

https://youtu.be/VKyWLAaStwM?t=53 At the beginning of the year, I signed up to walk 1000 miles in 2021. I can now confirm, I'm halfway there in 5 months. I have buffer time ..... but only if I keep going. By total coincidence it came on the anniversary of the completion of an 84 mile walk along Hadrian's Wall on 31st May 2014. 500 miles seems a lot more than that epic journey, but Chris and I did do around 300 miles in training to build up our stamina. Am I mad walking 1000 miles as a Stage 4 cancer patient? Not quite but working on it (haha). I have several incentives, including: As a stage 4 cancer patient, I want to be as fit as possible to withstand any rigours I may…

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…

01Dec 2020 by Ronny Allan 15 Comments

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million! Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 2 million: whilst accumulating around 20,000 followers across all my social media…

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…

28Jul 2020 by Ronny Allan 3 Comments

Paraneoplastic endocrine syndromes – the NET effect

Patient Advocacy, Survivorship

Kaltsas, G., Androulakis, I., de Herder, W., & Grossman, A. (2010). Paraneoplastic syndromes secondary to neuroendocrine tumours, Endocrine-Related Cancer, 17(3), R173-R193. Retrieved Jul 28, 2020, from https://erc.bioscientifica.com/view/journals/erc/17/3/R173.xml Neuroendocrine Tumours (NET)Paraneoplastic syndromes are a group of rare disorders that are triggered by an abnormal immune system response to a cancerous tumour known as a "neoplasm." Paraneoplastic syndromes are thought to happen when cancer-fighting antibodies or white blood cells (known as T cells) mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older people and are most common in individuals with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to the tumor being discovered. These symptoms may include difficulty in walking or swallowing, loss…

28May 2020 by Ronny Allan No Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 8) – a story of nurses, trees and Canada

Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 12th May 2020I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (….you should’ve seen the other guy). Bar the odd mandatory injection, I avoided nurses (….and boxing) for many years after that. But now ……Today is international nurses day. These guys have hit the headlines recently and many of us are dependant on them for ongoing care etc.I'd like to publicly thank all the nurses and healthcare assistants who helped me get better and brought me here today - and who continue to watch my back!Always thank…

24May 2020 by Ronny Allan No Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship

In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still allowed out for some exercise and other essential trips such as doctors appointments and shopping for essential items. See all…

17May 2020 by Ronny Allan No Comments

Ronny Allan: Living with Neuroendocrine Cancer during lockdown restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Survivorship

In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self isolation period, the government ordered a “lock-down” (a bit like the shelter in place term used in USA) but out of self isolation, we were still allowed out for some exercise and other essential trips such as doctors appointments and shopping for essential items. See below…

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…

09Mar 2020 by Ronny Allan 5 Comments

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship

This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date. For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.UPDATED 28 Mar 2020 - see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general summary of the effects of treatment in regard risk,…

06Feb 2020 by Ronny Allan 9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for many cancer patients. I also think I was lucky because I had instant access to Neuroendocrine Cancer specialists and got quick treatment, and my follow up and support from a specialist centre were in place. I cope, but I wouldn’t say it’s easy living with…

12Oct 2019 by Ronny Allan 3 Comments

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship

An Opinion Post Edit: September 2020. I believe the flu shot is even more important in the era of COVID. This is an illness that typically spreads in autumn and winter. A major flu outbreak would not only overwhelm hospitals in the coming months (the so-called "twindemic") but also likely overwhelm a person who might contract both at once.Edit: October 2021. Ditto. Edit: September 2022. Ditto. Another year, another flu shot. Since my cancer diagnosis, I've had one each year. To me it's really important protection even though I know it's not 100% effective, it's better than nothing. As someone who lives with metastatic and incurable Neuroendocrine Cancer, I know that my susceptibility to chest infections and flu may be dangerous for me, and having got this far beyond diagnosis, with an…

18Apr 2019 by Ronny Allan 6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call myself a sick person other than as a temporary label. Quite often I would ignore the illness and continue working and also continue normal day to day activities. In hindsight,…

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] Not intended to come over as a pity party 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! [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…

11Oct 2018 by Ronny Allan 8 Comments

Living with Cancer – Worrier or Warrior?

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

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective. Warriors I used to do that for a living so…

10Oct 2018 by Ronny Allan No Comments

Neuroendocrine Cancer – Short Update from NANETS 2018

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

I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting. It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter, one can keep up to speed on what is or has been discussed. One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from…

08Oct 2018 by Ronny Allan 5 Comments

Neuroendocrine Cancer – on your bike!

Inspiration, Living with Neuroendocrine Cancer, Survivorship

[caption id="attachment_13876" align="aligncenter" width="2592"] Get on your bike![/caption] There's a Brit saying known as "on your bike" (sometimes colloquially called "on yer bike"). It basically means "go away and stop bothering me" but there are other definitions including some 'Anglo-Saxon' versions (I won't repeat those here!) When I moved to my current home in 2012, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year. A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use. In fact, Chris got a new one out of the deal! I'm reasonably fit (considering) but finding it so easy to opt for the sofa and there's always something worth watching on…

16Sep 2018 by Ronny Allan 3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes One of my followers entitled a post in my group with "The hits keep coming" in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit of…

21Jul 2018 by Ronny Allan 16 Comments

Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment

This is not my personal scan When I was offered my very first Ga68 PET/CT at a 6 monthly surveillance meeting in May 2018, I was both excited and apprehensive. Let me explain below why I had a mix of emotions. You can read about my Ga68 PET experience here. I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion…

18Feb 2018 by Ronny Allan 14 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!Of course, sometimes you have little choice if you're ill from your condition or something routine.So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable!Take a break if you need one. Click here and answer all questions to join my private…

12Feb 2018 by Ronny Allan 9 Comments

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years (since there are records of test results - it might be longer).[caption id="attachment_16877" align="aligncenter" width="640"] Click on the…

30Jan 2018 by Ronny Allan 1 Comment

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds! However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests. Here, conversations bypass the weather and focus on being under the weather! I thought I was a regular when I started to recognise people…

15Jan 2018 by Ronny Allan 11 Comments

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I don't look ill. I didn't even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer. People have even told me I look better than many people my age who do not have an incurable disease! There's a bit of me which is very happy with that predicament, although I'd rather look less good and not have cancer.Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don't look ill but I know they have a life-threatening disease and things could change quickly. For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful. Some just need…

11Jan 2018 by Ronny Allan 29 Comments

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

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

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm not losing weight - this has been stable for some years (but see below). Plus my key vitamin levels (B12 and D) are in range. However, I had been struggling with a lot of bloating issues, thus the trial. You know me, I like to research and analyse such things! I've actually written about a lot of these issues in my Nutrition series ..... so this is now 'Article Number…

20Dec 2017 by Ronny Allan 5 Comments

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Since 2010 I've had a lot of surveillance and testing. More than 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 me. 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, even age.In the first year or two after diagnosis, I seemed to be a 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 to four. After that, I moved to 6 months but due to issues in 2013/2014,…

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…

16Oct 2017 by Ronny Allan 2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

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

OPINION:"Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed years of misdiagnoses for other conditions. But the latest statistics (and even these can be said to be quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for…