ORIGINAL POST (20th May 2014)

I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.   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 issues he faced are 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 young 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 own 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.  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. It can lead to speedier diagnoses and save lives. 

One way to increase awareness is for people to talk about their experiences. 

Edit:  Our awareness remains impaired because the community keeps talking about rare stuff when we should be talking about less common or even common.  It’s the 10th most common cancer type in UK and the 7th in Australia.  US doctors are also making noises about changing the message although some are also guilty of pushing the rare message.  If first line doctors were told it isn’t rare, they might look for it more, just saying. 

Thanks for reading

Ronny