Neuroendocrine Cancer: Patient Power!

patient-storiesThere’s a saying that the patient is the most underused person in healthcare and I think there’s a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it’s less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors.
If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people.  However, the ratio of NET Cancer patient stories still does not seem to be right.  I’m not ‘dissing’ breast, lung, bowel and prostate cancer patients, all credit to them for pushing their cancer awareness – respect!
I truly believe that patient stories, whether they are written, presented live or recorded for mass media, are an extremely valuable tool in spreading awareness of NET Cancer.  A ‘human being’ talking is a thousand times more potent than the endless stream of ‘memes’ and cartoons that seem to pervade our community – one reason why I don’t use them on my own site. It’s also the reason why I always jump at the opportunity to tell my story, because it’s real, it’s factual and I’m sensing an increasing willingness from the medical and healthcare communities to use patients in this way.  Quite right too, patients have a lot to offer.
Ipsen presentation
I’ve been video’d several times in the past 12 months and one day you might actually get to see those, there are some contractual reasons why I cannot yet share them with you.  It’s quite a scary thing to do and I found it mentally exhausting – but very worthwhile.
I was therefore delighted to find this recently published group of videos from Cure Connect.  Within the clips, there are 2 patients stories, one Pancreatic NET (pNET) and one Carcinoid and they are interspersed and integrated by input from NET specialist Dr. Reidy-Lagunes (a very knowledgeable and enthusiastic speaker).  Each clip is only around 5 minutes long so not too taxing.  The pNET patient, Michael, is a great supporter of my blog and one of the first NET patients I met on twitter.  I’m very thankful to him for alerting me to the videos.  Dr Reidy-Lagunes is fast becoming a ‘fav’ of mine and I note she emphasises some of the things I’ve been consistently saying in my blogs; i.e. this cancer can be treated and it’s not as rare as people think.
 ccf-logo
Another bonus is the addition of Carcinoid Cancer Foundation (CCF) and my friend Grace Goldstein.  CCF is the largest and most respected NET Cancer organisation on the planet and Grace works tirelessly to spread awareness and help patients including me!  CCF was the first site I found and remains my go-to site today.
Well done Michael and Brenda.  Thanks also to Dr. Reidy-Lagunes, Grace Goldstein/CCF and Cure Connect for once again highlighting our cancer. 
Take your pick!

 

Thanks for reading and watching!

Ronny Allan

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“Trust me, I’m a Doctor”

0c56a9eOne of the most frequent posts on forums is about the Patient-Doctor relationship (or occasionally a lack of it…..).   Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010.  The vast majority of people tend to trust Doctors and I’m a bit old-fashioned in this respect.  If you have metastatic Neuroendocrine Cancer, you see medical staff a lot!  Relationships and communication can therefore become more important than ever.

However, people with less common conditions can perhaps be more difficult to satisfy.  A ‘generalist’ doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at secondary care level, certain less common conditions still need dedicated specialists and these services may not be located at every hospital. Clearly with Neuroendocrine Cancer, the optimum scenario is to be treated at a NET specialist centre or at least be overseen by them.  However, these can be thin on the ground and/or the medical system in place is not able to provide access to these experts. Geography may also be playing a part causing further anxiety and this is not helpful if you are already fighting cancer.  Communications and relationships between patients and doctors can therefore be more difficult even with the right diagnosis.

I see so many issues on forums ranging from people who are simply looking for a specialist to people who still don’t think they got the right treatment from the specialist they eventually found.  Emotions directed at physicians range from ‘god-like adulation’ to offers of violence!   If you only looked at forums, you would believe there are only a handful of NET Cancer specialists when in fact there are many more than this. Check out the most up to date lists inside this article – click here.

I know from talking to other patients that some have not had the ideal experience with their doctor(s).  Even those who found a NET specialist report the odd issue and feelings of unhappiness.  I never cite these issues publicly, in particular the hospital or the doctor, because for every one of these stories, you can find dozens of good patient experiences with the same hospital and doctor.

It’s a really complex area and it can be compounded by the health system in place but many things are common across the board.  One of the reasons making it complex is that it can be about relationships and communication – both ways!   Thus why I was interested to read an article by a physician who listed a number of tips for patients which I think are as relevant to Neuroendocrine Cancer as they are to other conditions (……in fact some more so!).  Relationships and communication will not cure or reduce your cancer; or debulk your tumours – well not directly ….. but it can help along the way.  And although the article appears to be written in a post diagnosis context, some of it is also relevant to pre-diagnosis.

The top 8 tips are:

  1. Know your own communication style and preference for informing and being informedThis is an interesting point which I hadn’t really thought about.  That said, some of the response to this tip can be addressed in some of the other tips.  I guess in hindsight, asking my doctors not to hide stuff and to just “hit me with it” is an indication that I had set my preferences early on. I wanted to know the real problems I was facing.  Additionally, my Oncologist knows I like copies of all tests and reports and he obligesI always take notes.
  2. Think about how you prefer to hear important health information such as the results of a biopsy or a scan and then convey that to your doctor or nurse.  I think this is partly addressed above.  I see my MDT face to face every 6 months but if it is for bad news, I would certainly like some notice in order that I can be accompanied by my wife. I don’t think I’ve made that clear enough so an action for me here.
  3. Prioritize your concerns, if you present your doctor with a very long list of questions or symptoms at the very end of the visit, it’s quite likely that you will both end up frustrated.  I have experienced this issue many times but gradually I’ve learned how to improve this form of communication.  It’s easy to forget your physician has other patients and only has a finite time to spend on your case.  I now send my Oncologist a summary email with my top 3 or 4 concerns and I do this around 2 weeks prior to each appointment.  I copy in the specialist nurse who is mostly already aware via frequent communications.  This not only gives them some time to read but also prevents the scenario above.  It’s starting to work better.
  4.  Make your needs known, doctors and nurses cannot read your mind.  This is an absolutely key tip as far as I’m concerned.  I believe the patient is the most underused person in healthcare.  Patients have a part to play in their own  diagnosis phase and this continues all the way through to ongoing treatment (including wary of the doctor).  Patients must have a voice and patients must use this voice to describe what’s going wrong with their body and what’s troubling their mind.  Doctors and nurses cannot read your mind but they must listen to your voice.
  5. Trust the clinicians involved in your care and think of them as partners.  I think all clinicians want us to trust them after all they’ve done the 10 years training and we have not!  However, with less than common conditions, I suspect patients probably need to be wary and advocate more. I think of myself as a partner (part of the MDT for the period of my consultation) and so by default, I already think this way.
  6. Beware of the common trap of thinking in terms of all or nothing or rushing to conclusions.  This is an interesting one for incurable but treatable cancers.  I think with incurable Neuroendocrine Cancer, you need to be prepared for a long haul and the occasional bump along the windy road.  Services and inspections will need to be done and tyres will need to be changed.  It’s not a perfect journey and don’t trust the SatNav!
  7. Share the burden of not knowing how things will ultimately work out.  This is a difficult one and I suspect each person will have their own concerns and their own way of dealing with it.  I’m thinking this might be more important for younger patients who have young families to look after.  I’m a ‘glass half full’ person so it’s an awkward one for me.  I guess as I’m feeling confident I’m not leaving anytime soon, it’s something still stuck in the back of my mind.
  8.  Find ways of being at ease, even during frightening or turbulent situations.  Easier said than done!  Again, we all have different ways of dealing with our situations but I do believe if you have addressed all the tips above, this should make it easier.  I also think that learning a lot more about your disease really helps to communicate about it better.

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I’m often shocked to hear that people ‘fire’ their doctor but I guess if you are paying out of your own pocket, it can be an apt word to use! Clearly if the service you receive is not working to your expectations, then a move might be beneficial for both parties.  It’s a big decision though and for those who have moved on, I sincerely hope the grass has been greener on the other side.

You can read the full article from Cancer Knowledge Network here: Reflections on patient-physician communication

You may enjoy my article – Diagnosed with Neuroendocrine Cancer? – 10 Questions to ask your Doctor

And this one – 7 tips for conquering fear

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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Most Popular Posts

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

 

Every Day is NET Cancer Day!

Every day is NET Cancer Day

Opinion.  In 2014, I experienced NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn’t really do that much for me.  Spookily I even woke up on 10 Nov 2010 after major surgery.  Read about this here – I even woke up on November 10th after major surgery.

The build up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, supporters and advocates.

If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness.  For me, one day doesn’t cut it.  Some cancers have a whole month but they tend to be the big most common ones.

I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time (including NET Cancer Day and all its affiliate organisations).  There’s a lot of time and effort required.  It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed.  Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again.  I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.

Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other.   I want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th.  This is what the NET Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a NET patient organisation, I know they work very hard.  This is about the out of date and incoherent strategy.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament
Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD (now Sir Desmond Swayne) MP in the UK Parliament

Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective  Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle.  In regards interactions with politicians, as another example I’m always happy to see the annual state declarations of support in USA.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I  believe that is part of their success.  

When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy. By the way, name another successful cancer strategy using an animal as their ‘cover page’.  Spoiler alert, there isn’t one. 

Because NETs is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent, effective and up to date. Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Human Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients.  It also needs to be accurate.

New audiences means new thinking ….. different thinking.  One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians.  Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards.  It’s worth it.  Here’s a statement from the CEO of WEGO Health:

Jack WEGO NETs

My animal free blog site will hit one million views next year and I’m a relative newbie.  So perhaps there is another way?

When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer. Although 10 Nov is approaching once again, for me……..

EVERY SINGLE DAY OF THE YEAR IS NET CANCER DAY

RonnyAllan strap

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!