Intelligent Patients — Just What the Doctor Didn’t Order by Ronny Allan

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 Ronny Allan_4the 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.

Learn More about NET Cancer

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

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  • Excellent blog Ronny and it has messages beyond the boundaries of your particular cancer. Just hope people share this and your other blogs, as it can only help to equip those who have been diagnoised with the dreadful disease and the often forgotten group of family and friends, who provide support in the background, but also need to be aware of the range of issues, to give them understanding combined with removing invalid fears they may have.

    • Hi Tony, thanks for your kind words about Ronny’s blog — we agree, he is an outstanding blogger. We’ve also posted about his blog on the CCF Facebook page and it is definitely getting shared there and through other social media platforms too!

  • Ed

    Great post! Being informed gives you your life back. You no longer sit on the edge of the doctors examining table wondering what he is talking about. You understand things. You understand what the terms mean and how they apply to your life. You can walk out of the doctor’s office and speak to your family.

    Unfortunately, not everyone is active and as informed as you. In all of the time I have been diagnosed with carcinoid cancer I have never gotten so much as a pamphlet explaining what it is. I had to take it upon myself to find out. This should change. They have pamphlets for diabetes, hearing loss, stroke and so on. We need to get our hospitals to publish or purchase pamphlets for patient education and display them in the office. I think it’s a shame that we go home with no real understanding of what we have been diagnosed with. Especially on first hearing the bad news. I still have huge holes in my knowledge. This shouldn’t be.

    • Hi Ed, we agree that awareness and education about carcinoid and other neuroendocrine tumors are critical and that’s our mission at CCF. We hope you’ve visited our website, http://www.carcinoid.org, where there are literally hundreds of pages of information. If we can be of help in any way, please give us a call at 888-722-3132, Eastern TIme.

      • Ed

        Thanks for the reply. I live on this site. 🙂 May I ask, I read about your immunotherapy news and I was wondering if I could be involved in any way. I have hind gut carcinoid cancer and it is in my bones, liver, hind gut and other places. Nobody will operate, chemo has not been working and it looks like I am almost out of options. Would you consider using me and my biopsy material in your study. I don’t think I have many options left. I am sure you get requests like this all of the time but, as the saying goes, “ask and ye shall receive”. 🙂 I am currently at Duke and I am sure my doctors would cooperate in any way they could to help me get in to the study. Feel free to forward this request to anyone you feel should see it besides yourself. Thanks for such a great website and all of the information. 🙂 Ed

  • Hi Ed, really happy to hear that you visit our site often! Regarding the immunotherapy news, the folks to be in touch with are at the Caring for Carcinoid Foundation, which has provided the funding for these new studies. Here’s a link to their website: http://www.caringforcarcinoid.org/. Many thanks for your very kind words, we’re here to help!

    • Ed

      You’re right, my mistake. Thanks anyway. 🙂

      • No worries, Ed, they’re a terrific foundation and throughout the NET community we are very appreciative of Caring for Carcinoid’s support of this important research.

  • cy

    Excellent post. I joined an online support group immediately after my (accidental) diagnosis and also read everything on the Carcinoid Cancer Foundation website. There, it was obvious that the doctors I dealt with were not at knowledgeable enough about carcinoid even though they already had several other patients with it. Determined to get the best care yet work within my insurance parameters, I educated myself and keep educating daily. By getting a second opinion from a doctor who follows the experts’ opinions, I was able to force the liver surgery that is recommended by experts.

    Recently my oncologist complained that there were no guidelines for carcinoid. I was able to point her to NANETS which has published guidelines.

    The cancer patient must be his own best advocate!

  • Joy Fisher

    Let us hope that there will be a cure some day soon. I was at my family doctor so many times, trying to figure out what was wrong with me. I have been getting care here in Fl. at the Moffitt Caner Center, having to travel 4 hrs, there and 4hrs back. One study did not work, but I am on another study as of now. Would like to know more about this terrible cancer but much goes over my head. Wrote to Dr. OZ, asking him to have the topic o his program, nobody ever answered me. Would like to have so many questions answered. Thanks for taking he time ad effort studying this topic. Joy Fisher,Jacksonville, FL

  • Lynn Price

    Appreciate the blog, and comments. Thanks a TON!
    I am wondering if I should go back to the 5 or so doctors who misdiagnosed me, and tell them my correct diagnosis? I am the typical 10 plus years of increasing symptoms, finally dx’d as IBS; after that I finally had a transit study, subsequent ileostomy, and finally a total colectomy/ ileorectal anastamosis, at which time my appendix NET was found. Very lucky. I was not having carcinoid syndrome symptoms, just gut. And now, having no colon, i am very low risk for more NETS.
    I have since met 3 other people in treatment, and know of 2 who have died, their NETs were not found until very advanced.
    I do not think NETs are as rare as the literature in med school teaches. I think the research hasn’t caught up with the true incidence, as they are now being diagnosed more reliably.
    I feel awkward to go back to my previous doctors to educate them, but I want to. Any thoughts?

  • John waring

    Hi Ronny
    I’ve read a lot of your blogs but this one really hits the mark, Dr Google is good to a point…
    The best words I have seen written were in a book I read a few years ago when no one seemed to understand me or what was happening ( prior to diagnosis ) the just of it was
    ” it’s incredibly hard to be a credible patient” The amount of times I was fobbed off or offered anti depressants over the 5 years still irks me.
    i began to feel it was me to the point I was becoming very depressed indeed, eventually I went to my daughters GP who we know reasonably well but was not my GP and asked if he could just pretend we have never met and start again from scratch, go back to basics was my argument.
    He was not overly comfortable initially but really did take action once he understood what I was trying to do, he took no history just asked a barrage of questions as he would meeting a new patient for the first time. I did not give him any information unless he specifically asked and offered nothing more, was tiring for both of us but all the bloods etc came back in normal ranges as has been typical previously. He suggested I talk to a physician as he was sure we were missing a trick and after 2 visits and 4 hours with the physician a diagnosis was given, and here we are today.
    I agree as patients we have a right to ask questions and read or obtain copies of all scans etc so we can assist the Doctors not fight them, I want to work with mine towards a solution.
    So the diary is really the ultimate weapon in being a credible patient..
    Keep doing your great work Ronny, thanks.
    Cheers
    John

  • Dal Anderson

    Wonderful blog post Ronny. Being your own patient advocate is so important with this cancer.

  • margaret ward

    hi I live in stoke on trent and was wondering if there any surport groups I could go be lovely to be able to talk to someone who as carcinoid syndrome .having a flair up at the moment just be nice not 2 feel all alone thanks x