The Carcinoid Cancer Foundation is pleased to announce that we are going to feature guest contributors to our blog during 2015. Intelligent Patients – Just What 
the Doctor Didn’t Order by Ronny Allan (pictured), a carcinoid cancer patient from the UK, is our first guest blog post. Ronny, whose own blog is Ronny Allan – Living with Neuroendocrine Cancer, is an amazing advocate for the NET cancer community. He works with Cancer Research UK, PLANETS Charity, and the NET Patient Foundation. In conjunction with NET Cancer Day 2014, Ronny took his campaign for greater awareness of NET cancers to the UK Parliament. Click here to read the newspaper coverage.
Thank you, Ronny, for all you do to raise awareness of NET cancer and for being our first guest blogger.
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Intelligent Patients — Just What the Doctor Didn’t Order
by Ronny Allan
Since a child, I’ve recognised only a few professions which appear to be universally accepted as trustworthy – one of those is a doctor. Even today, I suspect most people still implicitly trust their doctor, or in fact, any doctor they see. It doesn’t seem to matter that the vast majority of patients don’t really understand medicine, they just seem to take it all trustingly for granted. Five years ago, if a doctor had asked me to take off my clothes and stand on one leg, I most likely would have thought this to be a genuine request ….. after all, who would foolishly question their doctor?
The growth of the internet and social media has changed the way we think about ourselves and how we interact with others. It has produced ‘virtual doctors’ who can tell you what illnesses you ‘might’ have just by looking up the symptoms you input. Not forgetting those totally unqualified social media friends and associates who are very happy to diagnose you via ‘Dr Google’. ‘Information is power’……. but misleading or misinterpreted information can be dangerous in the wrong hands, particularly a sufferer’s. However, it’s true to say that the internet has also provided access to reliable sources of properly researched and quality information.
During my diagnosis with a type of Neuroendocrine Cancer, the specialist looked at my scans and then after listening to me explaining the facial flushing I had been experiencing, he told me I probably had something rare called ‘Carcinoid’. As I walked out of his office, he said “try not to search this on the internet, it’s too vague and complicated”. I ignored his advice only to find he was correct.
I’ve now lived with NET Cancer for 4½ years which has given me time to understand the basics. The experience of going through the diagnosis and the constant tests and treatment, has been a real learning opportunity. I do have an inquisitive mind and consequently I’ve been able to soak up some of the more complex aspects of my disease. Last year I decided to devote some of my time to talking about this experience in the hope that others will benefit. This was mainly channeled through some of the mainstream NET Cancer organisations to help them spread awareness of this complex and challenging cancer. However, more recently I’ve set up a Twitter account, a Blog and a Facebook site to talk about Neuroendocrine Cancer, its associated issues and other areas of cancer interest. I said above that the growth of the internet and social media could be dangerous and this is why I’m very particular about what I publish.
So what is it that drives NET Cancer patients to learn about their disease?
I suspect Doctors are probably under greater pressure to solve and cure than they were 50 years ago. People are living longer and many will be suffering from one or more chronic conditions in addition to the illness they are presenting with at appointments. I sense the public’s expectations to be much higher, so doctors are under more pressure to deliver.
In terms of Cancer, it’s unlikely any Doctor would be familiar with over 200 different types let alone the various sub-types that can exist at a lower level. NET Cancer is rare affecting less than 6 per 100,000 and despite this, has over 6 subtypes. NET Cancer is a notoriously misdiagnosed disease – in many cases for some time before a correct diagnosis is made with the average reported to be in the region of 3-7 years. The symptoms frequently manifest as a ‘syndrome’ which mimics routine or regular illnesses. Additionally, a key facet of NET Cancer is that it is not tied to a particular organ or part of the body. As I stated in a previous blog The Anatomy of NET Cancer, the primary (if found) can be located in one of a number of locations.
Many primary care doctors will not know a great deal about NET Cancer and its associated syndromes and most diagnoses will not therefore be given until secondary care is involved either through referral or following routine or emergency treatment. Many NET Cancer patients will live with their disease for the rest of their life and will need constant surveillance and treatment. Even following diagnosis and well into treatment, a patient can still exhibit routine or regular illnesses. There’s sometimes a very fine line between attributing any problem to the cancer’s side effects or treatment; or accepting the fact that even NET patients can succumb to routine or regular illnesses unconnected to their cancer.
I help myself my being positive and proactive
I believe I need to know a lot more than the average cancer patient. I attribute this to a number of reasons, mainly:
- This cancer can upset the body with vague symptoms and I need to be able to at least make my own risk assessments of whether something is or isn’t potentially connected to my condition – I can then take the necessary action.
- This type of cancer is rare and some medical professionals struggle to understand it. I want to be able to articulately explain my condition when this is apparent.
- When speaking to medical professionals or if I’m reading their letters/reports, I want to understand what they are telling me. Moreover, I want to be able to challenge them when I don’t understand – or if I don’t agree.
- My condition and its treatment comes with side effects. I want to understand what those are and how they impact on my quality of life. Using my knowledge including most recent test results, I can then manage those effects or seek further assistance.
A doctor is really interested in finding out what’s wrong with you and then implementing a referral or treatment plan but I don’t think they would be entirely happy if patients started to dictate their own diagnosis or what treatments should be prescribed. This is why I tread carefully with my own set of doctors in both primary and secondary care. I now keep a daily diary which tracks a number of key metrics and logs anything unusual. I take this to every appointment including primary care. I’d like to think I’m now a very good patient advocate for myself and that I work with my Doctors to get to the bottom of any issues in a very positive and proactive manner. I find I’m now able to articulate myself better and am also able to understand and interpret test results including scans which I always insist on seeing. All of this gives me the feeling that I’m in control of my cancer and not the other way round.
Of course patient advocacy is not just learning about your disease and spreading awareness, it’s much wider than that. For example it also includes knowing about patient rights, matters of privacy, confidentiality or informed consent, learning about the political and regulatory world, health-care providers, organisations of health-care professionals, and about medical and pharmaceutical research communities. I mainly keep tabs on these areas via twitter which can provide excellent ‘signposts’ into relevant websites and this supports my personal blog and Facebook activities. As I said above, the internet can be a dangerous place for the uninformed but if used carefully, it can provide a vehicle for those who wish to move from ‘passive patient’ to ‘active advocate’ (see my blog Passive patient or active advocate?)
The great news is that I’m not alone on the internet! Since I started my adventure, I’ve discovered numerous bloggers, dozens of tweeters and plenty of experienced patients contributing via patient support groups. All are trying to help spread awareness and provide support to newly diagnosed patients or those who are seeking answers to their strange and vague symptoms.
As for my own mission, in addition to providing help within the NET Cancer world, I’m determined to find new audiences outside NET Cancer communities which should garner more support and understanding for my fellow patients.
Hope to see you online soon!
Ronny
Twitter: @ronnyallan1
Facebook: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723
Blog Site: https://ronnyallan.wordpress.com
