Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community. Some ‘get it’ but many don’t. Most understand ‘Cancer’, they have real difficultly understanding ‘Neuroendocrine‘. Despite how hard I try, I can see that some of them just don’t get it!
One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It’s a heterogeneous grouping of cancers ranging from some quite indolent versions through to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex description, in addition to creating a disadvantage of awareness opportunities – basically many doctors and media organisations don’t ‘get it’ either!
Add in the symptoms caused by Neuroendocrine Tumours and their associated ‘Syndromes‘ and ‘Hormones‘, the external audience is now falling asleep or lost interest. Trying to explain why these diseases cannot be diagnosed earlier is also very complex. “How can it be so difficult” many of them ask.
If you have managed to keep their interest and get onto the subject of living with the disease, it gets even more mind-blowing. Non-stop surveillance, lifetime surveillance, permanent side effects of treatment. “No way” many of them remark. The problem is that many people have a really simple outlook on cancer; something goes wrong, you get diagnosed, you get treated, you either die or live. Simple isn’t it?
One group that normally ‘gets it’ is those who have currently got it, i.e. Neuroendocrine Cancer patients and their close families and supporters. They may not ‘get it’ before someone is diagnosed and they may still not ‘get it’ once someone is diagnosed, but they eventually will ‘get it’. I have many people who ‘get it’ in my private group and on my main campaign sites.
Despite the difficulties, I’ll continue talking to those who have not yet ‘got it’ hoping to make them understand the disease. I also intend to continue to help with the undiagnosed (some of these guys probably do ‘get it’ but just not yet formally ‘got it’). I also want to help those at and beyond diagnosis who despite having it, don’t yet quite ‘get it’.
No one gets it until they get it. It shouldn’t be that way.
I once wrote a post about patient stories, in particular the ones I receive in my private messages. The headline was “The shock effect never wears off“. But none have been more shocking than the one I received 2 weeks ago.
This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen. I was so moved by this story, I persuaded this person to let me tell it here whilst retaining their anonymity. Hence referral going forward as ‘Patient E’. I just felt that someone somewhere might learn something very important.
The Story of ‘Patient E’
In December 2018, Patient E was told ‘Stage 4 Pancreatic Cancer’ and had 10 months to live. Chemo was to be attempted in January in an effort to extend life but in the meantime was told to spend Christmas for the last time with the family, a spouse and 3 young children. On 2nd January, Patient E was then told (with apologies) it was actually a ‘Neuroendocrine Tumour with a pancreatic primary’. The only good thing about this story so far, is that they told the children nothing over Christmas. “Why worry happy little people” was the bit of the story which brought out my tears.
Initially I was quite angry this could happen to anyone but I was then calmed by Patient E who now had fresh hope and optimism, perhaps realising that there were possibilities for many more years with the family.
So why do these things happen? Apart from the serious communications lapse by the hospital, this is another example of the problems we as a community face with the anatomical approach many doctors take with cancer, with some even describing a pancreatic Neuroendocrine Tumour as a type of Pancreatic Cancer (this happens with other parts of the anatomy too).
Patient E is not alone, I once wrote a story about rock star Wilko Johnson (of Dr Feelgood fame) who was given a very similar prognosis. However, Wilko was in the later stages of his life and decided instead of undergoing gruelling chemotherapy, he would forego any treatment and tour with his band in the final 12 months of his life and …….. make an album with Roger Daltrey of The Who. It wasn’t until someone enquired why he wasn’t dead after 12 months, that they re-checked and changed the diagnosis to Neuroendocrine Tumour with a pancreatic primary. Read the whole story here.
I wonder how many other times this has happened.
Neuroendocrine Tumours with a pancreatic primary (pNET) is a totally different cancer to Pancreatic Cancer. With Pancreatic Cancer, most people die, quite the opposite with pNETs where most people live. Read more about the main differences here.
I’m grateful to Patient E for contacting me to let me know that my blog and my other support sites have been helpful in the transition from despair to hope since finding out the correct diagnosis on 2nd January. I do hope Patient E will keep me updated.
I’ve always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving ‘paper’ mail. Other than birthday cards, I personally don’t tend to see many handwritten letters nowadays. In today’s internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA.
Now ….. for those around the same age as me, you might have been attracted by the article header and have remembered the famous radio show entitled “Letter from America”. This was a weekly fifteen minute speech radio series broadcast on BBC Radio 4 and across the world through the BBC World Service. Throughout its history, it was presented by Alistair Cooke, who would speak of a topical issue in the US, tying together different strands of observation and anecdote and often ending on a humorous or poignant note. The series ran from 24 March 1946 to 20 February 2004, making it the longest-running speech radio programme hosted by one individual in history! The BBC has archived many episodes on their website and you can actually now listen to these – click here if you fancy a trip back in time. For me, the memories of the programme were around the deep bond of friendship and shared values that the two great countries share, thus why the radio programme was so special and so relevant to listeners this side of the pond.
Some of you possibly thought about the Scottish duo composed of twin brothers Charlie and Craig Reid – ‘The Proclaimers’. I guess many people in North America and the Southern Hemisphere will be aware of this group who are probably more famous for their anthem song ‘I’m gonna be (500 miles)’ but their song ‘Letter from America’ was actually their most successful. I have a theory that when people from America tell me they like my quaint British accent, what they actually mean is my Scottish ‘twang’, just like ‘The Proclaimers’ who were born and raised not far from my home town of Dundee. Their singing style is with a Scottish ‘twang’ – always worth a listen (click here).
Anyway, back to the actual letter. The person who sent me the letter placed their name and address on the front of the envelope but it was not a name I recognised. However, he left a clue inside indicating a mutual connection (WEGO Health). What a boost this letter gave me!
It should also be a boost for all those who read my stuff and follow me on social media because ‘Josh’ is not a Neuroendocrine Cancer patient but he made some really awesome comments which I wanted to share with you. I also wanted you to know first hand that others are being made aware of Neuroendocrine Cancer and our fight for more awareness.
In case you can’t read the handwritten words or wanted to translate, I’ve extracted below:
“Dear Ronny, I just wanted to send a quick “Hello” and “thank you” for everything you do. I’ve become familiar with your advocacy work over the past couple of years and it is hard to find the quality of content and mix of science, lifestyle and hope that you consistently show the world. It is refreshing and inspiring to say the least. I hope you realize the positive impact you have on real people. Thank you again and I look forward to your future work. Sincerely……… Josh”
Letter from America
Thanks for listening
Ronny
I’m also active on Facebook. Like my page for even more news. Please also support my other site – click here and ‘Like’
It’s no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. It’s also no secret that certain cancers are difficult to diagnose (NETs is one) and there are a number of reasons why this happens, including but not limited to: – they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.
I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established – this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and most detailed staging declaration – this drives treatment plans and surveillance regimes that need to be put into place.
Hunting Tumours – Primary vs Secondary
It’s really important to determine which tumours are primary and which are secondary (metastasis). There’s a number of ways to help work this out and knowledge of NETs epidemiology studies can help.
Specialist Knowledge – certain things are known about the behaviour of NETs
Specialists and in particular NET specialists will be aware of the vagaries of NETs in terms of what tumours are normally a primary and which are normally secondary and many of the pitfalls involved in working that out. Many NETs will have metastasized to the liver at diagnosis, so whilst it is not impossible to have a primary liver NET, the vast majority of liver tumours found will be secondary (metastases). NET Specialists are more likely to have the experience than generalists. They know that the varying metastatic potential depending on the primary site clearly indicates differing biology and genetics across sites and they know that NETs are indeed a heterogeneous group of tumours. The differences cannot be explained by whether the NET is situated in the foregut, midgut, or hindgut. For example, Appendiceal NET is known to be less prone to metastasis. This may be due to the high rate of incidental findings during appendectomies, or because the appendix is an immunological organ where malignant cells can therefore be expected to be frequently recognized by the immune system.
The majority of the digestive tract is drained by the portal venous system, explaining the dominance of liver metastases in this group of tumours. This also explains our finding that many nervous system and bone metastases originate from NETs in the lungs. Disseminated tumour cells may directly reach the systemic circulation from the lungs, whereas if originating from the midgut region, they need to first pass both the liver and the lungs.
As an example of this heuristic knowledge, one Swedish study indicated that two-thirds of peritoneal metastases will be attributed to Small Intestine NETs (SI NETs). SI NETs and Pancreatic NETs (pNETs) are the most likely to metastasize. The least likely sites to metastasize are the Appendix and Rectum. The same study indicated that in addition to the common metastatic locations of lymph nodes and liver, Lung NETs are more likely to metastasize to the brain and bone than other types. I believe the findings from this study more or less correlates to other information I’ve had access to and also confirms the technical behaviour paragraph above.
There are many other clues open to those involved in diagnosing a NET:
Patient. Very often the patient plays a big part of determining where the primary and other tumours might be by carefully describing symptoms.
Incidental Finds. NETs are very often found incidentally during trips to the ER/A&E and also during tests for something else. This is particularly the case with Appendiceal NETs and might explain why the average age of a patient is significantly lower in this type of NET.
Blood tests and Hormone Markers. We are not yet in a position where these types of tests can diagnose (but we are moving in that direction). In the case of unknown primaries (CUP), sometimes test results can help to find where some of these cancers started. With NETs, symptomatic patients can often test to confirm an elevated hormone marker which may narrow it down to a specific organ or gland. Read more here.
Scans and Endoscopies. Most cancers of a certain size may show up on conventional scanning such as CT, MRI and Ultrasound. Nuclear scans are now playing a bigger part in finding tumours which betray their location through functional behaviour by lighting up or glowing on these imaging devices. Endoscopies (e.g. gastroscopies, colonoscopies, even gastro intestinal pill cameras can be used) can help but like scans are not foolproof). Generally with NETs, if you can see it, you can detect it. Read more here.
Hereditary Conditions. Around 5-10% of NETs are hereditary in nature, mostly involving the MEN group of syndromes. Many of those people will know they are at risk of developing NETs and their doctors should know the most common locations for primary tumours associated with each gene. So a declared or suspected hereditary syndrome is useful in finding primary tumours if they exist and are proving difficult to find.
Biopsies. “Tissue is the issue”. Pathology can very often give really strong clues as to the type of NET and therefore the likely location of a primary tumour, for example additional tests such as immunostains. Many biopsies will come from secondary cancer (metastases), mostly the liver. Despite all the potential diagnostic routes above, the place the cancer started is sometimes still not found and this may lead to atypical diagnostic/treatment plans and in certain cases this might even include exploratory biopsies via surgery (invasive/minimally invasive), perhaps combined with opportunistic tumour removal if found during the procedure.
Staging. Simple staging can be given if locations of metastases are known. For example in the case of Liver metastases, the stage is automatically Stage 4. However, the full staging definition relies on knowing distant metastases, loco-regional metastases and the full Tumour/Node/Metastases (TNM) definition (size, spread, etc) cannot be given without a primary. Read more here.
Cancers of Unknown Primary
Cancer is always named for the place where it started, called the primary site. Sometimes doctors can’t tell where a cancer may have started. When cancer is found in one or more places where it seems to have spread, but the site where it started is not known, it is called a cancer of unknown primary (CUP) or an occult primary cancer.
When you look at the ratio of all cancers, the figure for cancers of unknown primary (CUP) is quite startling. Depending on where you look the figure is around 2-10%. That doesn’t seem a lot but when you consider the amount of people diagnosed with cancer, the total figure must be staggering. Interestingly, Cancer Research UK say that 60% of CUP cases are in the over 75s. In another interesting Swedish study, doctors claimed that the rates of metastatic cases were higher with certain NETs than they were in their anatomical counterparts, reinforcing the dangerous and sneaky nature of NETs.
Despite quite advanced scanning and diagnostic testing currently in place, and the extensive knowledge of NET specialists, there can still be reasons for not being able to find the primary tumour:
The primary is just too small to be seen and is growing quite slow. Very small cancers might not cause symptoms or be seen on scans. This is a particularly relevant point with NETs.
The primary could be hidden in tissue in between different organs causing confusion about the actual primary location.
The body’s immune system killed the primary cancer. It’s also possible (but not common) that any secondary cancer (i.e. metastases) is still growing.
The tumour has become loose from its primary location and exited the body, e.g. from a wall of the bowel and excreted out in the stool.
The primary cancer was removed during surgery for another condition and doctors didn’t know cancer had formed. For example, a uterus with cancer may be removed during a hysterectomy to treat a serious infection.
Summary
I hope this is useful for many NET patients, particularly those who are looking for a diagnosis or looking for a primary tumour.
Neuroendocrine Cancer – at times, it can really be like looking for a needle in a haystack.
1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms. My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA. I almost got to my 1 million ‘reach’ on twitter in ONE WEEK straddling NET Cancer Day (see below) – just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter. So I thought I’d mention it instead.
Mind you, every day is NET Cancer Day on my social media platforms. I push on.
2. Thanks for supporting my photo on Facebook and Twitter – it has become the most liked post on my Facebook ever with over 1000 likes. You can link directly to it by clicking here:
3. Personal NET News
My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards. You can read about my Ga68 PET/CT experience here and my fibrosis issues here. I recently has a Renal MAG3 nuclear scan to determine the efficacy of my kidney function – waiting on results but expecting good news.
Looking for Advice?
If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.
If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.
Blog Site Activity in November
Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
For most of November, my name branded facebook page was the fastest rising public Facebook page on the planet about NETs. I use this page to like and comment on other healthcare pages (it draws in interest in NETs). Some of you will also recognise it as the main ID inside my closed group. It’s also a backup to this page (NETCancerBlog) as you will not always see stuff on my main page due to Facebook gremlins.
(Don’t unlike, I need your strength in numbers to generate awareness).
There were many distractions in November 2018, I’m actually quite busy with external projects but still managed over 35,000 views, the second biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:
I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.
Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Ronny Allan’s Private Facebook Group
As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).
The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event). Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 30th November, there were almost 2200 people in the group. It’s the fastest growing group in the world for NETs.
And I’m working on a guest Gastroenterologist for a third chat. To be confirmed.
New Audiences for NET Cancer
I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world. Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.
Engagements and Invites
I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
I’m working on a video shoot next week for a Pharma company who are looking at how cancer patients live from day to day. More info later when I am at liberty to tell you.
I’m working on an association with a Pharma company to help with patient portals. Early days.
I’m working on an association with a healthcare company to help with their marketing.
I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”“Poker Face or Cancer Card”
Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 244 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 203 times by other tweeters, 2331 people looked at my profile (where it mentions NETs) and I gained 64 new followers. My weekly ‘reach’ is consistently between 400,000 and 800,000, heading for 1 million soon. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
WANT TO JOIN MY TWITTER ARMY? Just ask.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
Click the picture to watch the video of the live announcements
Social Media and Stats
Blog Milestone. At the end of last month, I accelerated past 777,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.
Facebook Milestone. Almost 7200 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Figures
Facebook: 7196. This is a key outlet for my blog – pleaseencourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
Most blog views in one day: 4453 on 16 August 2018. Why the spike? ….. “Aretha Franklin”
Most blog views in one week: 14,830 in August 2018. Why the spike? ….. mainly “Aretha Franklin”
Most blog views in one month: 38,275 in August 2018. Why the spike? …..“Aretha Franklin”
Summary
An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in last month. Onward and upwards!
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 patients and has seen this issue before. After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270 degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully). That said, the abstract papers above has led me to believe that my retroperitoneal fibrosis is clinically significant. In fact I have spent the last 3 months worrying about some of it growing into reach of important vessels and only just been given the all clear (for now).
No thanks for screwing up some of my hormones
There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved. Serotonin has caused fibrosisin my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!
No thanks for the ongoing symptoms and side effects
I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me). I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or receiving. However, I know from speaking to many patients the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.
These syndromes can be so strange and so weird, they can be very difficult for patients, nurses and doctors to treat. They can be a real ‘witch’s brew’.
Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.
No thanks for increasing my diabetes risk
No thanks for pushing me into pre-diabetes. My blood sugar is spiking, most likely due to treatment.
No thanks for making me retire early
I loved my job but not if it was going to kill me. I made my own decision based on how I could survive in a financial sense. Made easier as I was only 8 years from retirement but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.
The truth is that many people still need to work whilst struggling with side effects of the cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.
Neuroendocrine Cancer is a very expensive disease to treat.
This is fast becoming a big issue regardless of country and regardless of healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance cover. Read more about financial toxicity for cancer patients which is a growing problem worldwide.
……….. and no thanks to anyone who says it’s a “good cancer“
I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press. The two main reasons I take up these campaigns are as follows:
1. They are totally different cancers despite an anatomical relationship. Although they share some similar presentation, they have different signs, different treatments and vastly different prognostic outcomes. What that means is that anyone who is looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be (particularly with the prognostics). See more below.
2. These two different cancer types have different awareness organisations, patient support groups and patient leaders/advocates. In most cases, vastly different awareness messages. Both of these organisations and advocates need all the help they can get, they need all the resources and funding they can get.
Both Pancreatic Cancer and Neuroendocrine Cancer are diseases that need maximum publicity, both disease types have their own unique situations, thus why the awareness messages can be so vastly different. It’s really important, therefore, that publicity surrounding famous patients be attributed to the correct cancer type in order that the advocate organisations and supporters can gain maximum benefit to forward their causes. Unfortunately, thanks to doctors and media, this very often doesn’t work out in favour of Neuroendocrine Cancer due to the Human Anatomy of Neuroendocrine Cancer (this problem actually goes beyond the pancreas).
Where the press and doctors regularly get it wrong
Two famous people in particular, one in 2011 and the other this year, are regularly reported in the press as having died of Pancreatic Cancer.
Steve Jobs. One of the most famous technical innovators of his time and creator of the most valuable company in the world. He had a Neuroendocrine Cancer with a pancreatic primary. Read his story here.
Aretha Franklin. One of the most famous soul singers of her time. She had a Neuroendocrine Cancer with a pancreatic primary. Read her story here.
For me, one of the two main differences are the cell type. When people talk about Pancreatic Cancer, they really mean something known as “Pancreatic Adenocarcinoma”. It starts in the exocrine cells, which produce enzymes to support digestion. Neuroendocrine Tumors start in the endocrine cells which produce hormones.
For me, the other big difference is prognostics. Unfortunately, it is statistically proven that most people with Pancreatic Adenocarcinoma will die, whereas most people with Neuroendocrine Tumors with a pancreatic primary will live.
For a more detailed comparison, see this excellent article from NET Research Foundation.
diagram courtesy of NET Research Foundation
Pancreatic Cancer – Why I support their campaigns
Personally speaking, as a healthcare advocate online, I do support many cancer awareness campaigns, I think this is important to get similar help coming the other way (this frequently works for me). However, I very much suspect, other than Neuroendocrine Cancer, my biggest support area online is for Pancreatic Cancer. I’m drawn by their excellent campaigns where they focus on key messages of prognostics for what is essentially a silent disease (in many ways the same issue with Neuroendocrine Cancer) and they make these more compelling by focusing on people rather than gimmicks. The prognostics can be upsetting reading as they are quite shocking figures which have not changed much in the past 40 years, a key sign that more must be done for this awful disease. I frequently share this symptom graphic below because it might save a life and I ask that you do too.
1. The annual NANETS symposium took place last month and I constructed an article of several important outputs. One day I might make it there, been to ENETS twice. Would love to attend UKINETS but they don’t seem very ‘patient’ friendly.
2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com. The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses. A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new audiences rather than just share stuff between NET patients and advocates.
the best kind of story – a 2 legged one
3. I’m still reeling from winning the 2018 WEGO Blog Award and if you missed the live announcement, you can listen to the quite short video clip here.
Personal NET News
My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.
Looking for Advice?
If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.
If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.
Blog Site Activity in September
Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
Living with Cancer – Worrier or Warrior ? worry and anxiety is common with cancer patients but can you worry too much to the point it is counter productive? Even warriors can worry.
There were many distractions in October 2018, I was very busy with Ipsen speaker stuff plus a holiday in Scotland but still managed over 32,000 views, the third biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:
I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.
Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Ronny Allan’s Private Facebook Group
As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event). Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st October 2018, there were almost 2000 people in the group.
New Audiences for NET Cancer
I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world. Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.
Engagements and Invites
I spoke at the Eye for Pharma event in London alongside an important Pharma NET contact. See above.
I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”“Poker Face or Cancer Card”
Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 190 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 134 times by other tweeters, 1524 people looked at my profile (where it mentions NETs) and I gained 50 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
WANT TO JOIN MY TWITTER ARMY? Just ask.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
Click the picture to watch the video of the live announcements
Social Media and Stats
Blog Milestone. At the end of last month, I accelerated past 741,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.
Facebook Milestone. Almost 7000 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Figures
Facebook: 6981. This is a key outlet for my blog – pleaseencourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
Most blog views in one day: 4453 on 16 August 2018. Why the spike? ….. “Aretha Franklin”
Most blog views in one week: 14,830 in August 2018. Why the spike? ….. mainly “Aretha Franklin”
Most blog views in one month: 38,275 in August 2018. Why the spike? …..“Aretha Franklin”
Summary
An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in last month. Onward and upwards!
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it’s a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.
The cancer can often be uncannily quiet, but the tumours can be ‘functional’ and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it. For those looking for a diagnosis, it can be very frightening.
One or more of the NET syndromes can be a weird concoction of strange, powerful or terrifying ingredients, designed to make you very ill; and doctors will be confused.
Certain types of Neuroendocrine Cancer were once referred to by the out of date term of ‘Carcinoid‘ – now correctly referred to as a NET prefixed by its anatomical primary location. For the time being, the term Carcinoid Syndrome associated with these types of NET persists and this is known to be capable of over secreting (amongst others) the vasoactive substance called serotonin. It is commonly thought that serotonin is the cause of the flushing, but this is only partially correct, the flushing also results from secretion of kallikrein, the enzyme that catalyzes a conversion to bradykinin, one of the most powerful vasodilators known. Other components of the carcinoid syndrome are diarrhea, probably caused by the increased serotonin, which greatly increases peristalsis, leaving less time for fluid absorption, a pellagra-like syndrome, probably caused by diversion of large amounts of tryptophan from synthesis of the vitamin B3 (Niacin), which is needed for NAD production (oxidized form of B3). It also causes fibrotic lesions of the endocardium, particularly on the right side of the heart resulting in insufficiency of the tricuspid valve and, less frequently, the pulmonary valve and, uncommonly, bronchoconstriction. Other fibrosis spells include mesenteric and retroperitoneal desmoplasia which have the potential to dangerously obstruct important vessels and cause general discomfort at best.
Carcinoid Syndrome is one of the most powerful and dangerous ‘witch’s brews’.
The classic carcinoid syndrome includes flushing (80%), diarrhea (70%), abdominal pain (40%), valvular heart disease (40% to 45% but reduced to 20% since the introduction of somatostatin analogues), telangiectasia (25%), wheezing (15%), and pellagra-like skin lesions (5%). Carcinoid syndrome, first described in 1954 by Thorson and co-workers, has the following features: malignant neuroendocrine tumour of the small intestine, normally with metastases to the liver, sometimes with valvular disease of the right side of the heart (pulmonary stenosis and tricuspid insufficiency without septal defects), peripheral vasomotor symptoms, bronchial constriction, and an unusual type of cyanosis. One year later, Dr. William Bean gave the following colorful description of carcinoid syndrome:
“This witch’s brew of unlikely signs and symptoms, intriguing to the most fastidious connoisseur of clinical esoterica—the skin underwent rapid and extreme changes resembling in clinical miniature the fecal phantasmagoria of the aurora borealis.”
Other witch’s brews include the group of NET syndromes associated with over-secretions of Insulin, Glucagon, Gastrin, Vasoactive Intestinal Peptide (VIP), Pancreatic Polypeptide (PP) and Somatostatin. Read more about these and other syndromes here.
One of the most scary witch’s brews is the group of symptoms associated with one of the most uncommon types of NET, the catecholamine and metanephrine (adrenaline and noradrenaline) secreting tumours known as Pheochromocytoma and Paraganglioma. These tumours are likely to cause a barrage of symptoms such as High blood pressure, Heavy sweating, Headache, Rapid heartbeat (tachycardia), Tremors, Paleness in the face (pallor) and Shortness of breath (dyspnea).
All of the above is a diagnostic nightmare for those who have the symptoms and remain undiagnosed– no fun for the doctors either – this why we need so much more awareness and education – it’s one of the key aims of all my social media sites. Another aim of my sites is to support those who are diagnosed as these symptoms can continue following diagnosis and treatment. Many NET patients need constant surveillance and follow-up, many for life.
This is a very spooky disease, it will slowly grow without you knowing, it will mess with your body and mind, and if left alone to plot its devious and destructive course, it will kill. Some are faster growing but they have the same traits – they just kill faster. Share this post and potentially save a life.
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 I guess I’m an automatic fit, right? Believe it or not, professional ‘warriors’ also worry about stuff but they don’t like showing it (one of the reasons there are serious PTSD issues happening currently).
Despite the protests at the use of ‘war’ metaphors, many cancer patients do see themselves as ‘warriors’. People probably label me as one but …… spoiler alert, behind my positive exuding exterior, there’s a man worried about a problem which might decrease quality of life and also a man worried about potential surgery most likely needed to correct the issue. We all worry but it’s the way we handle stress that is important. Not talking about it is never a good option.
Poker Face or Cancer Card
I also think ‘Warriors’ can sometimes be complacent and for a cancer patient, this can be detrimental to their health. In a previous life, nothing was going to stop me getting on with life, nothing was going to stop me going to work, nothing was going to stop me completing my mission. One day, some of my co-workers complained about my constant sneezing, coughing and sniffing. I told them the only way I was leaving the building would be on a stretcher having lost consciousness or in a body bag. I said it whilst I continued typing up a report which was my mission for that day. I said it without any hint of joviality in order they knew that I was deadly serious. Little did I know that my ‘poker face’was just about to become seriously deadly.
We’ve all read the blogs and memes on Facebook…. ‘kicking cancer’s ass‘, etc etc. There’s even twitter handles, Facebook sites, blog names all with the word ‘warrior’ in the title. Nothing wrong with that, nothing wrong with having a positive attitude. The only thing potentially wrong with that, is becoming too complacent about the danger of cancer. Cancer will kill you whether you are a ‘warrior’ or a ‘worrier’.
Worriers
I come into contact with a lot of Neuroendocrine Cancer patients, either from a thread in my group, my blog site or my Facebook site(s). I get a substantial amount of private messages from patients including on twitter. Many of them are from people who are ‘worried’ – these can often be the toughest conversations I have.
People have many different reasons for worrying ,and there can be totally different factors involved at diagnosis than those surfacing during and after treatment. We worry about a diagnosis and what it actually means, we worry about the treatment we are given, and then we worry about the cancer coming back, this is all very natural. Some people have taken a considerable amount of time to get a diagnosis and their stress levels are already high. Some are young with a long life ahead of them, that is really tough. Some have young children and are worried about their future as well as their own, that is also really tough. There are many other scenarios adding further layers of complexity to an individual’s situation.
I have no magic answer for someone who is constantly worried except to say that they must do something about it as it’s not a good place to be. I once dabbled in this area by writing an article with 8 tips for conquering fear, this was specifically aimed at my own cancer type but I guess it could apply to many others.
Many cancers are not as ‘black and white’ as a lot of people think, i.e. you are diagnosed, it is treated, you are observed, you are cured. Neuroendocrine Cancer is quite definitely a ‘grey’ cancer, i.e. many people take some time to be diagnosed, many are diagnosed at the incurable stage, the treatment regimes differ depending on the primary, stage, grade and many other factors, you are observed for much longer periods than the average cancer patient, perhaps for life, and for many, there is no cure.
For those with incurable conditions, the stress levels can be higher and for longer, potentially leading to other illnesses. The psychological impact of long-term cancer is a developing but as yet unmet need in the Neuroendocrine world and I suspect elsewhere.
Don’t forget the carers and caregivers. I think a lot of carers/caregivers can also be under some stress and worry, I certainly see this a lot in the Neuroendocrine community.
Summary
I think there’s a fine line between being a ‘warrior’ or a ‘worrier’ and I believe many people flit between the two quite easily. I think many people might actually be in the middle ground, having accepted their diagnosis, decided it was just another chronic illness and try to live life as best they can.
Cancer can be a very individual disease, not just the different types and sub-types, but also stages, grades, pre-existing medical issues, age, gender. To add to the mix, I think it’s also true to say that how people handle the stress, how people cope is another dimension to be considered.
For those who are predominately ‘warriors’, please don’t forget to look after yourself. For those who are predominantly ‘worriers’, the lead graphic might help put things into perspective.
1. The annual NANETS symposium kicks off in a few days. I’m hoping to bring you news from the event (remotely, I won’t be there) and perhaps a summary in next month’s newsletter.
2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. Be careful where you look as many are still behind the curve on this issue. Their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course. Watch this space.
3. This very old news from 2007 has resurfaced – an autopsy on former US President Eisenhower confirmed he had a Pheochromocytoma after suffering from heart issues for some time prior to his death. Nonetheless, good publicity for Neuroendocrine Cancer. Read my Pheochromocytoma article here.
Personal NET News
My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. I think they are still consulting with London on the feasibility of trying PRRT first. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.
Looking for Advice?
If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.
If you are diagnosed and looking for a NET Specialist – this article will help and it also includes 10 questions to ask.
Blog Site Activity in September
Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
Don’t worry, it’s benign! An article about the dangers in assuming that all NETs are benign. All NETs have malignant potential.
Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits. I now have two articles with over 20,000 views.
Let’s raise our “sites” – twist on the word sights to indicate we need to keep on letting people know that a NET in a particular part of the anatomy should not be called that anatomical cancer. The change in graphic seems to have made this more popular.
There have been many distractions in September 2018, I was very busy with WEGO Health stuff but still managed 25,000 views. Here are the top 10 most read articles which contributed to last month’s figures:
I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.
Please join my 2018 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Ronny Allan’s Private Facebook Group
As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event). Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 1st October 2018, there were almost 1900 people in the group. I might cap at 2000 to maintain the integrity of the site.
New Audiences for NET Cancer
I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.
Engagements and Invites
I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support and it meets with my association criteria.
I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”“Poker Face or Cancer Card”
Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 220 times on my personal account which led to over 140,000 views of my tweets. I was mentioned 145 times by other tweeters, 1648 people looked at my profile and I gained 74 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 600 other subscribers.
WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
Click the picture to watch the video of the live announcements
Social Media and Stats
Blog Milestone. At the end of last month, I accelerated past 709,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.
Facebook Milestone. Almost 6800 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Figures
Facebook: 6797. This is a key outlet for my blog – pleaseencourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in last month. Onward and upwards!
One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by definition is malignant.
Any definition of the word ‘tumour’ will confirm it can either be benign or malignant. However, and while I’m sure there are benign NETs, the key statement to explain any slow growing or indolent NET is that they all have malignant potential – thus why surveillance and follow up is really important. This is the key factor in the changes found in the 2010 Digestive System World Health Organisation (WHO) classification system from the previous ‘flaky’ version. This reinforcement of the malignant potential of all NETs was duplicated in the recent 2017 Endocrine System equivalent, which is now proposed as a classification scheme for all NETs (see below).
“Carcinoid”
Of course we are not helped by the continued use of the term Carcinoid which decodes to ‘Cancer Like’ – that is potentially regressing the work of those specialists who are trying to undo the last 100 years of complacency in the medical world (and not really the type of awareness we need). The word is gradually being erased from NET nomenclature and the recent 2018 proposal by the International Agency for Research on Cancer (IARC) and WHO NET expert consensus panel to ditch it from the remaining versions of out of date WHO classifications (e.g. Pulmonary/Lung, Pituitary, Head & Neck, Genito-urinary, Adrenal and Paraganglia, Skin), is the final nail in the coffin for Carcinoid. RIP Carcinoid. This also supports our awareness issues with the media reporting the wrong cancer types based on anatomy of the primary tumour. Dear Doctors, Patient Advocates and Patients ….. please stop using the word!
I have lost count of the stories from Neuroendocrine Cancer patients who have been told their tumour was benign but then returned with incurable and metastatic cancer sometime downstream. Clearly there are doctors who do not understand NETs and/or are not aware of the changes in WHO classification schemes since 2010. Sure, some will prove to be ‘benign’ in nature and may not cause many issues but any Ki-67 below 3% is a formal grade of Neuroendocrine Neoplasm. I accept that it’s currently difficult to work out which cases will turn more aggressive and when, thus why surveillance and follow up are really important and also why patients should be seeing doctors who understand NETs. Worth also noting that many slow growing and indolent tumors can still often produce troublesome NET syndromes.
I’ve even heard one patient story where it was claimed a doctor called a metastatic NET case benign! Any definition of ‘benign’ on any respectable cancer site, will include the statement that they do not spread to other parts of the body. The NET Patient world is full of slow growing Grade 1 Stage 4 patients – by definition, they’re all malignant.
Read more detail in these articles as these issues are inextricably linked.
I’m sure there are scenarios in all cancers where tumours can be benign and will never harm the person but if a Doctor says you have a Neuroendocrine Tumour and not to worry because it’s benign, ask questions. Start with “how do you know it will never turn malignant” and “what will be done going forward to check”.
Thanks for listening
Ronny
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Neuroendocrine Cancer is one of a number of “difficult to diagnose” conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In some cases, many people don’t feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It’s a very sneaky type of cancer and if left too long it can be life threatening – CLICK HERE to find out why.
The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate. It’s not only a sneaky type of cancer but it’s also very complex. It’s a heterogeneous group of malignancies with a varied and confusing histology and nomenclature to match. As I said above, many people are asymptomatic for years whilst the tumor grows and some might say that it’s somewhat ‘lucky’ to have symptoms to help aid a diagnosis. Many find that a lack of knowledge of Neuroendocrine Cancer in primary care, doesn’t always produce results. Common misdiagnoses include (but not limited to), Irritable Bowel Syndrome (IBS) and other common digestive diseases, menopause, appendicitis, hypertension, gastritis, asthma. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care if a referral for ‘something’ can be achieved.
……..cue internet searches (Dr Google)
I think the rise and the power of the internet and rise of social media applications is very much helping generate awareness and knowledge of Neuroendocrine Cancer and those looking for a diagnosis may find help in this way. I suspect this instant access to information has played its part in the diagnostic improvements I mentioned above. Take my own efforts for example, I’m a wee Scottish guy with a computer and I’m already accelerating towards a million blog views – there’s clearly a market for what I produce. In terms of those looking for a diagnosis, if only one gets an earlier diagnosis due to my site, I’ll be happy.
Unfortunately, the internet can often be a minefield and in many cases, can lead to quite unnecessary worry for those looking for a solution.
Incoming Questions
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, tumour markers, hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer.
Many have already had multiple doctor’s appointments and tests. If they have not yet had a scan, I encourage them to try to get one ‘by hook or by crook’. Despite what you read on patient forums and surveys, the vast majority of Neuroendocrine diagnoses will be triggered by a conventional imaging such as CT and/or MRI. If you can see it, you can detect it.
When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again confirming the power of the internet and the savvy ‘internet patient’. This is fine if you look in the right places of course – for certain things there are more wrong places on the internet than right ones.
If I have time, I’m happy to chat with these people, some are very frustrated – in fact some are so frustrated that they just want a diagnosis of something even if that something is really bad. Some are not showing anything on any scan but in certain cases, it can be likened to finding a needle in a haystack.
What do you say to someone who is utterly convinced they have Neuroendocrine Cancer but CT/MRI/Octreoscan/Ga68 PET are all clear, Chromogranin A and 5HIAA are in range but they still say they have (say) diarrhea with its potential for literally thousands of differential diagnoses. It’s a tough gig.
Example:
My scan came back normal. That should be good news. But, if there is no tumor, how can I be suffering from all the symptoms of carcinoid syndrome? Is that diagnosis wrong? Are the urine and blood test results wrong? I’m awaiting a MRI scan to take another look to see if the doctor can find anything. I don’t know what they’ll find. I don’t want them to find anything. But I’m afraid of what will happen if they don’t.
Anon
Patient Forums
I always let the undiagnosed know that Neuroendocrine Cancer patients are some of the most friendliest and helpful people you can meet, they will treat you as one of their own. There will be a number of diagnosed people online who have gone through what the undiagnosed are going through, so they will both sympathise and emphasise. But … this can often have the adverse effect of pushing them into believing they must have Neuroendocrine Cancer. This makes for interesting discussions given the number of people who automatically assume that ‘flushing’ or ‘diarrhea’ (as described by the undiagnosed) must be Neuroendocrine Cancer without any reference to the many differential diagnoses and the context of what that actually means in Neuroendocrine Cancer terms.
10 Questions to ask your doctor/specialist for those Diagnosed with Neuroendocrine Cancer (and where to find a specialist)
I once wrote an article for DIAGNOSED NET Patients suggesting 10 Questions to ask their doctor. So I wanted to take a step back in context, using the knowledge I now have, and put myself in the shoes of someone who thinks they may have Neuroendocrine Cancer but is not yet diagnosed.
Key questions to ask your doctor/specialist for those trying to confirm or discount Neuroendocrine Cancer
Dear undiagnosed people. I totally understand your fear. There’s nothing worse than being ill and not knowing what illness you have. I’ve therefore compiled a list of 3 key questions for you to ask – think of it as a tick list of things to ask your doctor to do or check . I have linked several background articles for you to prepare your case. However, I cannot promise your doctor will agree or take any action, in fact some might be annoyed about the lack of trust. However, doing your homework really helps, including diaries and other evidence.
I also wouldn’t say that a negative to all the questions will mean you definitely do not have Neuroendocrine Cancer but at least these questions might provide your doctor and yourself with some food for thought, perhaps leading to the diagnosis of ‘something’. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose.
Questions for the UNDIAGNOSED to ask their treating physician
“I think I might have a type of cancer known as Neuroendocrine Cancer or Neuroendocrine Tumours (NET) because <<< insert your own story>>>. Would you please consider the following tests and checks:”
1. Chromogranin A (CgA) is a marker which is quite sensitive for Neuroendocrine Tumours, essentially measuring tumour bulk potentially indicating the presence of Neuroendocrine Tumours. There can be other reasons for an elevated CgA figure, including the patient’s use of proton pump inhibitors (PPI) (see the article for an alterative test where this is the case). Read more here – Neuroendocrine Cancer – Tumour and Hormone Marker tests.
2. 5HIAA is a hormone marker for the most common type of NET, particularly if the patient is presenting with flushing and diarrhea. Many NETs have associated syndromes and hormone markers can be a guide to help with diagnostics. Read more about 5HIAA and other hormone markers for different types of NET and different syndromes here Neuroendocrine Cancer – Tumour and Hormone Marker tests.
3. Scans. Most NETs can be seen on a CT scan although liver metastasis can often show more clearly on an MRI. There are also nuclear scan options to confirm conventional imaging findings. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation. In some cases, nuclear scans will find things that conventional imaging cannot because radionuclides can normally pick up oversecreting tumours. Read more in my article “If you can see it, you can detect it”.
You can hear two NET specialists talking about the issues surrounding the diagnostics here.
Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.
About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said “Pancreatic Cancer of the Neuroendocrine Type”. Her death certificate quoted “Pancreatic Neuroendocrine Cancer”. Despite this, the media outlet which published her death certificate still led the article with the headline “Pancreatic Cancer”. Exactly the same thing happened with Steve Jobs and a few others. And that’s only the ones we know about – how many other pe0ple are being labelled and documented with the wrong cancer type?
I cannot read the minds of the healthcare professionals and media when they compile their press releases and articles but I’m fairly certain they simply do not understand that Neuroendocrine Cancer is a cancer within its own right and is not a type of another cancer. They simply do not understand the term ‘Neuroendocrine’ and they think the readership won’t either, and so it’s probably easer just to leave that bit out. The result is that a person has, or dies with, is labelled with the wrong cancer type, which is then published and embedded into the annals of the internet and spreads like wildfire (fake news), and Neuroendocrine Cancer is once again robbed of much needed awareness. Our community needs to start focusing more on these types of awareness issues rather than continually flaunting pictures of black and white striped animals.
I’m even starting to think that the well known term used in Neuroendocrine Cancer circles, ‘Pancreatic Neuroendocrine Tumor’ or pNET for short, is actually working against us because of the inclusion of the organ as the first word of the term. Going forward, I will be using Neuroendocrine Cancer with a pancreatic primary, etc.
Neuroendocrine Cancer is NOT a type of another cancer PERIOD!
1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as ‘Pancreatic Cancer’ mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death certificate – I believe this is the most concrete evidence of her type of cancer. Click here for Aretha.
2. PRRT in UK took a step forward when NICE finally approved the drug (Lu-177) for use in England and there is mention of some direction for Wales in the document (I’m trying to find out what it means for Wales). Scotland had already been approved last month and I assume Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place. You can read the NICE approval document which also has a very interesting ‘Implementation’ section. Click here to read.
3, The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. However, their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course.
Personal News
My NET. I await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. The holiday season will soon be over, fortunately the issues are not classed as urgent at this stage. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.
WEGO Health Awards. I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.
Blog Site Activity in August
Due to the vagaries of Facebook inner workings, some of these articles created or updated in August 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
I wish I had another cancer – not about me but about ‘cancer Olympics’ we see online – there’s a twist to this one though.
PRRT Update – patients please read and advise on new locations. Contains the patient provided update on new locations for insurance funded PRRT in USA. PLUS news of PRRT approval in the United Kingdom
There have been many distractions in August 2018 but following the Aretha headline, I broke all records for hightest numbers of viewing in one day, in one week and in one month. I almost made 40,000 views. Here are the top 10 most read articles which contributed to August’s figures:
I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.
Please join my 2018 awareness campaign event here (select ‘Going’)
I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
Ronny Allan’s Group
As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st August 2018, there were almost 1650 people in the group. I might cap at 2000 to maintain the integrity of the site.
New Audiences for NET Cancer
I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.
Engagements and Invites
I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
Some of you will remember the invite to Berlin for a ‘Patients included’ event, This was not a NET Cancer event but I was invited due to my wider healthcare advocate work. That was a tough gig but great experience. There’s a summary file here and I have been invited back next year and my involvement is still being worked out.
Article features
Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”“Poker Face or Cancer Card”
Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 211 times on my personal account which led to over 138,000 views of my tweets. I was mentioned 109 times by other tweeters, 2012 people looked at my profile and I gained 30 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. WEGO Health Awards 2018 – I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.
Social Media and Stats
Blog Milestone. At the end of August, I accelerated past 683,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.
Facebook Milestone. Surpassed 6641 followers by the end of August but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.
Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)
These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)
I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page
Community Statistics (the measurement of my efforts on your behalf)
Figures
Facebook: ~6641. This is a key outlet for my blog – pleaseencourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.
Thanks for your great support in AUGUST. Onwards and upwards!
On 16th AUG 2018, Publicist Gwendolyn Quinn tells The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said “Franklin’s official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin’s oncologist, Dr. Philip Phillips of Karmanos Cancer Institute” in Detroit.
There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more.
Clearly he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast moving social media world, this is what has gone out with the lazier writers and editors abbreviating it to just Pancreatic Cancer, perhaps because they didn’t see the relevance of the word Neuroendocrine or they didn’t want to confuse the issue. All of these incorrect posts will now be embedded in the bowels of the internet and used for years to come by those writing about the Queen of Soul. We in the Neuroendocrine community now have a much harder task because the press releases and her doctor did not articulate the type of disease correctly. The same thing happened in 2011 with Steve Jobs. It is considerably frustrating for the Neuroendocrine Cancer community.
However, a celebrity news outlet called TMZ has managed to obtain and publish a copy of her death certificate – you can read their article and see the death certificate by clicking here. It clearly states “Pancreatic Neuroendocrine Cancer”. This is a contextually significant statement compared to the version of the original cause of death given by her physician and which went viral on the internet inferring that it was Pancreatic Cancer. Annoyingly, even though they managed to obtain a copy of the certificate, their headline still said Pancreatic Cancer (read the TMZ article here) – please feel free to comment on their site or email the TMZ contact here – eric.page@kcrg.com
I commented as follows: Wrong headline. The certificate clearly states pancreatic “Neuroendocrine Cancer” – a totally different type of cancer, different symptoms, different prognostics, different treatment, different problems. Huge error. Will you be updating it?
They did not update it.
Interestingly the press have been saying Pancreatic Cancer since 2010 despite Aretha keeping her condition private, However, she came out in 2011 by releasing a statementsaying she didn’t understand where ‘Pancreatic Cancer’ came from.
I suspect she knew then it was Neuroendocrine Cancer, obviously from the fact that her doctor told her the surgery would give her another 15-20 years of life – that is certainly not a prognosis you would get with Pancreatic Cancer.
A summary of her cancer experience since 2010 can be found here – not too detailed but useful background. She had major surgery on December 2nd 2010 (sounds like Whipples?). She wasn’t in good health at diagnosis, with media reports of years of chain smoking, alcoholism, obesity and crash-dieting. She was also diabetic for some year prior to cancer diagnosis.
In one of the better articles from Forbes, they actually stated some words which resonate with the Neuroendocrine Cancer community (see graphic below) – however, the remainder of the article then goes onto to talk about Pancreatic Cancer and not Neuroendocrine Cancer so we lost a massive awareness activity due to the fixation and assumptions with anatomy.
THE HUMAN ANATOMY PROBLEM WITH NEUROENDOCRINE CANCER STRIKES AGAIN. Read about other errors with celebrities by clicking here.
The Human Anatomy vs cancer type even confuses so called respectable and authoritative cancer organisations. Big hitter organisations such as the American Cancer Society and the US National Cancer Institute fail to list an A to Z list of cancer with Neuroendocrine Tumors / Neoplasms / Cancer / Carcinoma under the letter ‘N’. Instead you can find Gastrointestinal Carcinoid (a term now at least 8 years out of date) and pancreatic and lung NETs under Pancreatic Cancer and Lung Cancer respectively, I’m sure there are other issues. I have contacted these organisations in the past and hinted there should be a standalone and grouped entry under ‘N’ but this has been totally ignored to date. While many news outlets have reacted to the rather flimsy and misleading statement coming from the family quoting Aretha’s physician’s words “Pancreatic Cancer of the neuroendocrine type”, medical writers will also take to the internet to research and will find the two ‘big hitter’ websites above and bingo. To a certain extent I see these issues more in USA than in any other country.
But in the meantime, please note that at least one big cancer organisation looking for changes to the way they display information on NETs as a result of Aretha (read it here) and some credit is due to Chris Nashville Lozina who many of you may know. However, action speaks louder than words and I will be monitoring their website to see if they actually make the changes they used to jump on the Aretha bandwagon. It should not be left to patients to do the running here – US NET patient advocate organisations must do more and must do it publicly.
The physician who quoted the cause of death which then went viral on the internet didn’t really do Neuroendocrine Cancer any favours – although we should credit him for leaving the word Neuroendocrine in there. That said, many lazy article writers and media have omitted the word not realising the significance of its meaning, not realising they were then quoting a totally different cancer. Interestingly her death certificated stated PANCREATIC NEUROENDOCRINE CANCER – that would have been a much better press release.
Some patients are suggesting she has “Carcinoid” but not only is that way off beam, it’s using a term which has been abandoned and is not really good PR for us. In some ways, the ‘C word’ is causing these issues as many physicians make a demarcation line between ‘carcinoid’ and other types of NET associated with one part of the anatomy.
We must stop saying that Neuroendocrine Cancer with a pancreatic primary is a type of Pancreatic Cancer. I think everyone agrees they are different but the KEY POINT is saying or not saying they are a type of Pancreatic Cancer. Saying they are a type of Pancreatic Cancer is not only playing into the hands of Pancreatic Cancer organisations who want to claim the famous icons and their potential fundraising opportunities, but potentially a betrayal of Neuroendocrine Cancer awareness. Only my view though of course.
I will update this article as new information comes out n due course but in the meantime please share using “Neuroendocrine Cancer” as there is much misinformation being spread
I’m thankful to Pancreatic Cancer Action for featuring this article here.
I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, my friend Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).
Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot. It works both ways as some people perceive they have had or are having a better cancer experience than others, and that can often lead to a sense of guilt, i.e. ‘your cancer is much worse than mine, I shouldn’t really complain too much’.
It can be normal to experience these emotions, and with such wide and varying cancer experiences, different personal circumstances, even (say) the worst stages and grades cannot always be used to justify the ‘gold medal’ position in this ironic version of cancer Olympics. Take my Neuroendocrine Cancer for example, I have the highest stage but an intermediate grade, so my sub type is not particularly aggressive in comparison with other cancers or even other sub-types of my own cancer. However,in many ways it’s a deceiving and silent disease and very often people are not diagnosed until a late stage where the disease becomes incurable. Prognostics for many sub-types are good but living with the disease has many consequences. This sounds like a bad deal and for some it can be. But don’t tell me I have a ‘good’ cancer. Neuroendocrine Cancer does have aggressive types with significantly different prognostic outcomes than the more common and less aggressive variants.
So let’s turn my personal cancer Olympics analogy round the other way. Let’s say you have a very aggressive cancer with terrible and frightening prognostic statistics. I would certainly not criticise anyone or accuse them of deliberately playing a cancer Olympics ‘game’ for suggesting they wished they had another cancer in this scenario.
I want to focus an example on Pancreatic Cancer, an awful cancer with awful prognostic outcomes. Using UK statistics, less than 7% of patients survive 5 years, it has the worst survival rate of all 22 common cancers. The headline and key awareness and campaigning message is that these prognostics have not changed much in 40 years. There are similar statistics in many countries. Pancreatic Cancer organisations worldwide are therefore campaigning robustly for more resources and funding to tackle and improve these statistics through more research and clinical trials. They are also doing what they can with their own prevention and early diagnosis campaigns with limited funding. With this particular disease, given the survival statistics, awareness is vital and it can save lives, one of the reasons I regularly publish Pancreatic Cancer symptoms.
One of the most compelling, bold and disruptive (in the context of shaking things up) campaigns I’ve seen, is the ‘I wish I had another cancer’ campaign from a UK-based Pancreatic Cancer organisation. It certainly caused a storm, making it to billboards in many towns, London underground adverts, several national newspapers and appearances on national TV. One broadcaster named it the ‘Envy’ campaign.
RIP Andy Luck
Many supporters of the ‘other’ named cancers reacted as you would expect, with criticism and it came from many parts of the world. In UK, there were many complaints made but the UK Advertising Standards Authority rejected these and refused to ban the adverts. Read some of the fallout by clicking here. The UK-based Pancreatic Cancer organisation later issued a statement saying ‘no cancer advert that saves a single life can be accused of going too far‘. Two of the three patients in the controversial adverts have since died, in fact these tragic and heartbreaking events both came not long after the advertising campaign was launched.
Penny Lown
Kerry Harveywas always the face of this campaign although the other two messages are equally powerful. Kerry would have been 29 on 14th August 2018. RIP Kerry. Read her diagnosis and treatment story by clicking here and here. Neuroendocrine Cancer.
RIP Kerry Harvey
Clearly I would rather not be diagnosed with any cancer. But if I was to be brutally honest, I’m glad I wasn’t diagnosed with a more aggressive disease, otherwise I might not be here now enjoying life with my family. So I totally understand the motivations of this campaign and why I fully support the 2019 twitter message from one of its creators Ali Stunt (CEO of Pancreatic Cancer Action)
You may also be interested in this article – Pancreatic Cancer vs Neuroendocrine Cancer with a pancreatic primary. Click here to read.
Thanks for listening
Ronny
I’m also active on Facebook. Like my page for even more news. Please also support my other site – click here and ‘Like’
Another unusual month, after a bizarre June. The chest infection has gone but still awaiting results of an x-ray to confirm. July was supposed to be partly holiday but that was cancelled due to illness. The chest infection caused a 4kg weight loss and only half of this has returned to date. I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public and privately, I’m most grateful. I received my 100th Lanreotide earlier in the month and I’m still here following my 8 year ‘cancerversary’ on 26 July 2018. Many of you are still here too – thanks for the wonderful comments to this Facebook post – click here.
NET News
PRRT in UK took a step forward when both the Scottish Medicines Consortium and NICE approved the drug (Lu-177) for use in Scotland and England respectively. Wales and Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place. That said, currently there are no PRRT facilities in Scotland (that I know of) and very few in England. Watch this space.
Blog Site Activity in July
Due to the vagaries of Facebook inner workings, some of these articles created or updated in July 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.
PRRT Update – patients please read and advise on new locations. Contains the patient provided update on new locations for insurance funded PRRT in USA.
Over the years of my advocating, I’ve tried to explain Neuroendocrine Cancer to many people outside the community. Some ‘get it’ but many don’t. Most understand ‘Cancer’, they have real difficultly understanding ‘Neuroendocrine‘. Despite how hard I try, I can see that some of them just don’t get it!
Neuroendocrine Cancer: Ga68 PET Scan – a game changer?
