No Fear


It’s that time again, every 6 months I need some checks. I’ve done the specialist blood test (Chromogranin A – CgA) and the 5HIAA and am waiting on my CT scan appointment. It’s also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.

I positively look forward to my tests and I cannot wait to get into that scanner! ‘Scanxiety’ isn’t in my dictionary.  Why? Because testing is one thing that’s going to keep me alive for as long as possible.  If I don’t get regularly tested, then one day I might just ‘keel over’ because something wasn’t spotted early enough.  Even in the event of ‘not so good news’, I still see that as a positive because it means the testing is working and an investigation or further testing can be put into place to find the problem – and the sooner the better.  Where’s that scanner, get me in it!

One of the most common posts on NET forum sites is to express personal concerns or worries about upcoming appointments or waiting on the test results. Thinking back to my own countless appointments either for testing, treatment or for receiving results, my approach has been that the test results will be what the test results will be. Worrying about them is not going to change those results.

Bring it on!

You may enjoy my article “Living with Neuroendocrine Cancer – 8 tips for conquering fear”.  Read here

This article was written in 2015 and since then, I have moved to 12-month surveillance periods. 

Thanks for reading.


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19 thoughts on “No Fear

  • Kelly


    I just want to say thank you for your brave words and your insight regarding NETs. Although I have battled with Multiple Endocrine Neoplasia Type 1 (MEN Type1) for the past 28 years, it is only recently that I have had to really face the fact that my disease is actually a cancer. I have a mass in my lung that couldn’t be biopsied during a bronchoscopy and I will be having a surgery to remove it. At this point the doctors and I are assuming that it is a carcinoid, which ironically I would welcome over any of the other frightening things it could be. I haven’t really shared this news with very many people because I still can’t grasp the thought of worrying them about yet another potentially (I have a hard time writing this word) fatal diagnosis.

    Now that I’ve spilled the beans to you, in print, perhaps I will be able to say it out loud as strong and as confident as you do.

    I appreciate all of your blogs and all of the hard work you do on behalf of all who are touched by NET Cancer.

    Sincerely, Kelly 🙂

      • Kelly

        Anything you need. I would love to help you spread the word. Carcinoids are prominent in people with MEN Type 1. I don’t know much about MEN Type 2, but I’m sure some of your followers are familiar with it.

  • Jean Borden

    Everything you said is so true. I had the Gallium 68 Scan. Very impressive. All good. There is some info on the internet about mind-preparedness for scans and other mental coping things. It helps me to get very spiritual in these things. You sure can’t do much else. But “taking yourself” another place and another focus sure beats listening to the clicking and ticking and worrying about scan results while you are inside “the tube”. It also gives you more lead time on “the next step”. And the confidence that you are doing the most and best of what is available at this time of our lives. It really is more about living with chronic cancer and being vigilant, diligent and becoming educated about all the tests and newest and best options.(and of course good doctors) We are still here in the US in the infancy stage of becoming more aware about neuroendocrine cancer. As a nurse, that is frustrating. Dr Eric Liu has been a crusader trying to reach out to the medical community about this disease. So is Dr O’Dorisio as they speak at conventions to get the word out to the public. It is still considered not a major player in the cancer world and is considered a more rare cancer. Although, if correct tests were performed with knowledgeable radiologists reviewing, it might not be. I guess that is where the frustration lies. I had at least 13 years of chest xrays before it grew “large enough” (2cm) to do some intense study, vocalness on my part, and a great primary physician who strenghtened my resolve before a bronchoscopy was done. Again thanks for your blog. I am enjoying your insight, wisdom and knowledge about how you have taken control of your life and have such great medical professionals to back you up. Good luck on results. I guess I am going to get spiritual for you. Think of me in “the tube”!! God love you, Ronny!!

    • Christine Craig

      They no longer do the 24hr urine up here in Newcastle. Not found out what they do instead any one know? I lie back and pretend I am floating in a nice tropical sea on the scanners and get up again nicely relaxed. A quickie break! No point in worrying relaxation is better for our hormones.

      • I’ll be interested to know Christine. I know in USA there is a plasma version of 5HIAA which is preferred and said to be more accurate. Good attitude on testing!

    • Thank you for your kind words Jean, please help to spread the word. Dr Liu is a wonderful advocate and I have a planned Facebook post about him this week.

  • Right On! I totally agree that the scans and tests are the things keeping us alive and feeling better than we could otherwise. I look forward to them also.

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