I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away – it was titled “If you don’t suspect it, you can’t detect it”. I didn’t really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it’s one of the primary aims of my blog. I’m thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad as that event was) but because the title is a phrase well known to Neuroendocrine Cancer patients, many of whom are readers.
In the past week, the newspapers have published several follow up articles on the Stephen Sutton story providing examples of patients who had been misdiagnosed only to end up finding they have a cancer which is not now curable. Neuroendocrine tumours can present complex challenges to diagnosis and treatment. Even in the case of metastatic spread, there are some important differences in the nature of these tumours compared to other cancers found in the same part of the anatomy (e.g. the pancreas). If you were to search Neuroendocrine tumour support organisations’ forum groups and websites, you will find numerous stories of people of all ages being diagnosed with a whole bunch of ailments before they were finally diagnosed with some form of Neuroendocrine disease.
Some people with Neuroendocrine cancer can be diagnosed by accident during invasive procedures for something more common (e.g. appendicitis – you may remember me saying this was a common site for primary neuroendocrine tumours) – these discoveries would be a surprise if the person was asymptomatic (as is often the case). It can also be found during diagnosis of something which the cancer would not otherwise be able to be seen, for example a scan – and even then it may not lead to diagnosis of the correct cancer until further downstream. This scenario might even be the end of a long chain of vague problems (perhaps over years).
When I look at my own experience, I would appear to be somewhere in the middle and the way in which my cancer was eventually diagnosed leads me to think I had a bit of luck but following a period of ignorance on my part. If you remember, I nonchalantly told my asthma nurse I had lost a ‘wee bit of weight’. That could have gone two ways ………… fortunately she sent me for a blood test and here I am now 🙂 If you want to read or hear about my cancer diagnosis experience, check this blog: Diagnosis
However, 18 months prior to that I did go and see my GP saying that I had noticed a darkening of my stool. After a quick ‘rummage’ nothing untoward was reported in the ‘extremities’ but I was sent to see a specialist as a precaution and probably because of my age. I eventually had a colonoscopy and for good luck, an endoscopy. Again nothing untoward reported other than a mild case of diverticular disease which apparently 50% of people over 50 have (filed!). In any case, the stool had returned to normal by this stage. I now know that my primary tumour, even if it was visible, was beyond the range of the colonoscopy procedure and I also now know that my tumours had been slowly growing inside me for some years. However, given the nature of Neuroendocrine tumours, I wonder what might have transpired had I been given a CT scan at that point? But there was no clinical evidence to support such an expensive procedure. After all, I didn’t look ill, I didn’t feel ill.
So what is my bottom line on this story? Cancer diagnosis can be complex, some cancers more complex than others. I often think the whole population should be regularly scanned and have blood tests but that would be cost prohibitive not to mention logistically challenging. I’m sure there are mistakes being made and lessons learned are very important. However, I do believe these cases are in the minority. Putting prevention and research into cures to one side, AWARENESS is key and I mean awareness by the population as well as medical staff. One way to increase awareness is for people to talk about their experiences.
Don’t forget – ‘If you don’t suspect it, you can’t detect it’ – see related blog: If you don’t supect it, you won’t detect it
Nearly on the XYZ meaning it must soon be time to go and walk Hadrian’s Wall 🙂
Tomorrow I’m off down the hospital to collect my 2 litre urine sample bottle. I need to pee inside this bottle for 24 hours (not literally of course!). The technical name for the test is ‘5-hydroxyindoleacetic acid’ or ‘5HIAA’. This is a breakdown product of Serotonin that is excreted in the urine. You may remember from blog post http://wp.me/p4AplF-9R that Serotonin is a hormone found at high levels in many body tissues. Serotonin and therefore 5-HIAA are produced in excess amounts by carcinoid tumors, and levels of these substances may be measured in the urine to test for carcinoid tumors.
Video capsule/Wireless Capsule Endoscopy
I didn’t actually get one of these but it was discussed as a possibility whilst I was being assessed for surgery. I remember being absolutely amazed they had this technology and thought it was the height of all ‘geekery’. This is basically a method to monitor and/or discover gastrointestinal diseases. It’s a type of video-telemetry capsule that is swallowed and journeys down the gastrointestinal tract while transmitting images. The capsule is about the size of a large vitamin pill and provides an ‘ inside view’ at a rate of two frames per second. Its video images are transmitted using UHF-band telemetry to aerials taped to the body and captured on a recording device about the size of a portable Walkman which is worn about the patient’s waist. After the exam, the patient returns to the doctor’s office and the recording device is removed. The stored images are transferred to a computer PC workstation where they are transformed into a digital movie which the doctor can later examine on the computer monitor. Patients are not required to retrieve and return the video capsule to the physician. It is disposable and expelled normally and effortlessly with the next bowel movement. Wicked!
Hope you enjoyed it? Just a reminder that these are my own views and whilst I’m happy to comment or clarify anything I’ve said, any questions on your own condition or the condition of someone you know are best left to the experts.
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