Survivorship – Ronny Allan – Living with Neuroendocrine Cancer

13Feb 2021 by Ronny Allan No Comments

Neuroendocrine Cancer: Follow up tests and checks

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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, 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…

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

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 of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo or dizziness. Paraneoplastic syndromes…

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 COVID-19 restrictions (Episode 7) – A story of swans, cycling, VE Day and my 124th monthly cancer treatment

Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

17May 2020 by Ronny Allan No Comments

Ronny Allan: Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 6) – A story of footpath etiquette, sheep, donkeys and dopamine

Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

06Feb 2020 by Ronny Allan 9 Comments

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a 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,…

12Oct 2019 by Ronny Allan 3 Comments

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Edit: September 2020. I believe the flu shot is even more important in the era of COVID. This is an illness which 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.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 immune system may be compromised and having got…

18Apr 2019 by Ronny Allan 6 Comments

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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.…

21Nov 2018 by Ronny Allan 10 Comments

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Survivorship

I have a lot of be thankful for - I'm still here for starters! BUT ......… here's a list of 10 things I'm NOT thankful to Neuroendocrine Cancer for! 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 to make of this issue at diagnosis, although I did know the aorta was pretty important! Fortunately I had a surgeon who had operated on many NET…

11Oct 2018 by Ronny Allan 5 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…

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…

21Jul 2018 by Ronny Allan 14 Comments

Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment

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 remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch…

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 for almost 8 years 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. Thanks for reading Ronny…

12Feb 2018 by Ronny Allan 7 Comments

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email From other posts, you'll be aware of the thyroid lesion (now 17x19mm) 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…

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…

11Jan 2018 by Ronny Allan 27 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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 held 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 (which are now quite old)…

09Oct 2017 by Ronny Allan 5 Comments

Weight – the NET Effect

Diet and Nutrition, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Firstly, let me say that I have no intention of advising you how to lose or gain weight! Rather, I'd like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment. Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues. I once wrote a patient story for an organisation and the headline was "Did you mean to lose weight". Those were actually the words a nurse said to me after I nonchalantly told her I thought…

08Oct 2017 by Ronny Allan 7 Comments

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…

02Oct 2017 by Ronny Allan 10 Comments

Genetics and Neuroendocrine Tumors

Awareness, 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 In my article 'Ever wonder what caused your NET', I concluded that currently, the only known scientifically explained causes for NETs were hereditary/genetic in nature. This is mostly associated with those who have MEN syndromes (yes, they are a syndrome not a type of tumour) and a few other less common types of NET including Pheochomocytoma/Paraganglioma (Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituarity, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors. In recent years, it has…

02Oct 2017 by Ronny Allan 3 Comments

Cancer Isn’t All About Me

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

[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] [caption id="attachment_4318" align="aligncenter" width="500"] It's about others too[/caption] Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I…

16Jun 2017 by Ronny Allan No Comments

Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan Disclaimer My Diagnosis and Treatment History Most Popular Posts Sign up for my twitter newsletter Read my Cure Magazine contributions Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life! Please Share this post Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email

08Jun 2017 by Ronny Allan 20 Comments

Living with Neuroendocrine Cancer – 8 tips for conquering fear

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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…

27Apr 2017 by Ronny Allan 1 Comment

The trouble with the NET (Part 3) – Miracle Cures

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Since I started blogging, I've had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence. There's a third factor and that is credibility - I'd like to think I've worked hard to earn that level of trust in my 'product'. I use the NET to talk about NETs! I'm a genuine guy with a genuine purpose and I don't want to sell you anything - my 'product' is free. However, the 'NET' can also provide 'misinformation'. Unfortunately 'misinformation' also includes 'alleged' cures for various ailments including cancer. I think we've all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under…

25Apr 2017 by Ronny Allan 14 Comments

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then.As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then it…

06Apr 2017 by Ronny Allan 2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINIONThere's a lot of inaccurate and out of date information out there. Some is just a lack of understanding, some caused by out of date websites, often as a result of patient forum myth spreading. Some can only be described as propaganda. Some of it even comes from doctors and NET advocate organisations. Myth 1: All Neuroendocrine Tumours are benignNot true. By any scientific definition, the word 'tumour' means 'an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)'. Sure, some NETs will be benign but a tumours which spreads away…

21Mar 2017 by Ronny Allan 29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

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

OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is…

20Mar 2017 by Ronny Allan 3 Comments

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

[caption id="attachment_11078" align="alignleft" width="150"] As featured by Cure Magazine[/caption] Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn't really something I thought much about and for minor things, I would just "soldier on.” So, from an early age,…

27Feb 2017 by Ronny Allan 4 Comments

It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, Treatment

5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can't get my head round why metastases from a small intestinal NET managed to get to this area but not others! Distant nodal metastasis treatment…

20Feb 2017 by Ronny Allan No Comments

25 Life Lessons From a Two-Time Cancer Survivor

Inspiration, Survivorship

Sometimes, a blog post comes along and it just resonates! I got chatting with the author who has given me permission to post it here. Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below. Her post "25 Life Lessons From a Two-Time Cancer Survivor" is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari's case, two). I've seen some similar quotes before but Shari has collated them into one very powerful list. I'm not suggesting they all apply to everyone but perhaps even a 'pick n mix' approach would be useful. For example, I couldn't do number 8…

02Feb 2017 by Ronny Allan 4 Comments

Things not to say to someone with cancer

Inspiration, Survivorship

[caption id="attachment_9184" align="aligncenter" width="592"] Graphics courtesy of https://emilymcdowell.com/[/caption] This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere! Personally, I don't tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never met, you don't know anything about them; and they may not even speak English as a first language (those who have tried google/twitter or Facebook translator,…

25Jan 2017 by Ronny Allan 5 Comments

Road ahead closed – Bowel Obstructions

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

OK - we've gone through diagnosis, we've gone through treatment and now we need to live with the consequences of cancer and it's treatment. Not a day goes by when I don't feel some twinge or some minor pain and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles. It's the cancer .... easy to say, sometimes not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in…

17Jan 2017 by Ronny Allan 16 Comments

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, Treatment

A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of unknown primaries as it can give them clues to the possible location(s). Read more about these issues in my article "Needle in a Haystack". How does cancer spread? In addition…

14Jan 2017 by Ronny Allan 7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email OPINION - nothing in here should be taken as advice from the author. On paper, surgery remains the only potentially 'curative' option for Neuroendocrine Tumours (NETs) but there are stage, grade and anatomical constraints to that opinion. Many people get 'twitchy' about any inference of the 'C word' (cure) but our most eminent NET specialists use the term frequently including in the major treatment guidelines. I use the word 'curative' with some reservations because for many who are diagnosed at an advanced stage, surgery will not cure but will debulk or cytoreduce as much tumour as possible in order to palliate symptoms and improve quality of life. This is a…

18Dec 2016 by Ronny Allan 6 Comments

Keep your lights burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday. And 'Bravado' is not only acceptable, it's mandatory! A week later, I received a very nice Christmas card from my old friend with a message which included "...... the old light is still burning brightly". It was a metaphor but something I…

18Nov 2016 by Ronny Allan 11 Comments

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example. Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared as a death sentence is now an illness in which…

16Nov 2016 by Ronny Allan 16 Comments

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain…

05Nov 2016 by Ronny Allan 8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

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 BackgroundScanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer.When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan might resolve this' and I always suggest people should try to get one. Even in the…

02Nov 2016 by Ronny Allan 9 Comments

Neuroendocrine Cancer – Exciting Times Ahead!

Inspiration, Survivorship, Treatment

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc. Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time. There's even more in the pipeline and I'm hoping to continue to bring you news of new stuff as I have been doing for the last year. Some of these new diagnostics and treatments will benefit eligible patients who are…

26Oct 2016 by Ronny Allan 7 Comments

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched on NET Cancer Day 2016 and is very aptly named 'Living with NETs'. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018. I'm quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site…

21Oct 2016 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Hurry up and wait

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

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal. My expectations of speed turned out to be wildly inaccurate and in hindsight, I was also wildly naïve. You see, with Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan. I'm quite happy and content they took their time, rather than rush into the wrong…

18Oct 2016 by Ronny Allan 19 Comments

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment

[caption id="attachment_7646" align="aligncenter" width="591"] did you hear the one about the constipated NET Patient?[/caption] In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to find myself with feelings of constipation from around 4-5 years after my treatment and I set…