If you suspect it, you can detect it

I thought long and hard about today’s post because no matter what I say, it will pale into insignificance when put alongside the words of Stephen Sutton who sadly died today at the tender age of 19.  The words used by his mother are particularly powerful. He was certainly a courageous, selfless and inspiring man.   

However, although he successfully raised £3.2million for Teenage Cancer Trust – a phenomenal amount for a very worthy charity, I believe Stephen also leaves behind many other very valuable legacies and lessons.  I’d like to focus on two in particular.

Social media.  

  • This is one of the key technical innovations of the last 20 years and has changed the way in which society lives and communicates and it’s still evolving.   It has altered the way ideas change hands and how fast those ideas spread – seconds rather than days or weeks.  It’s a very powerful tool which can send messages to those who lead and govern us.  In my opinion, this has actually been good for democracy (people power) – which is why certain countries (no names no pack drill) fear the rise of social media because it removes their ability to control information and views.
  • However, it can also be abused by those who take advantage of these freedoms for their own selfish, uncaring and nasty minded purposes.  Stephen was abused ‘electronically’ when he entered a short period of better health and certain people with very narrow minds decided to cowardly suggest (without checking the facts) that they had been duped.  


  • When I published my ‘A’ letter blog, Chris reminded me that I had originally listed ‘Awareness’ as a candidate for blogging – after all, this is one of the two aims of our sponsored activity.  I knew there would be an opportunity downstream and having just read Stephen’s whole story, I decided to raise it today.  
  • Stephen was diagnosed with metastatic bowel cancer at the age of 15.  He had been suffering sickness, stomach pains, weight loss and a loss of appetite but was repeatedly told by doctors he had constipation. Tragically, it was six months before Stephen’s cancer was finally discovered.  It was only picked up after an emergency CT scan when he became so ill he couldn’t keep down any food or fluids and he couldn’t sleep because of the pain. He believed that if he had been diagnosed sooner, his prognosis might have been very different although he went on to say ‘But even saying that, I’m not one to dwell on the past. It is what it is.’   I’m in no way having a ‘pop’ at Stephen’s doctors as I think there is a lot of detail behind the scenes and nobody knows the full facts.   I actually think medical staff are on a ‘hiding to nothing’ nowadays.
  • Awareness is also germane to Neuroendocrine Cancer which is infamous for being misdiagnosed due to the vagueness of some of the symptoms it can cause and produce.   So my message to you is this – if you feel unwell, make sure you divulge all the facts to your GP or attending physician.  If you end up being diagnosed with something minor but you still feel there might be something seriously wrong, go back and then go back again – or ask for a second opinion. 

I leave you with a listing of a couple of  ‘O’ words which are significant for Neuroendocrine Cancer. 


One of the major advances in the treatment of Neuroendocrine Cancer in the past 10 years is the introduction of ‘Somatostatin Analogues’.  These are synthetic (man-made) drugs which mimic the behaviour of somatostatin, a naturally occurring inhibitory hormone which blocks the release of several other hormones, which in excess, can cause unwanted side effects and in particular scenarios, can potentially be damaging and life threatening.  I’m actually treated by a variant of this drug called Lanreotide. I’ve referred to this on a number of occasions – see:

Does my flush beat yours‘             http://wp.me/p4AplF-2w

My treatment is a pain in the butt‘       http://wp.me/p4AplF-6c

The long acting versions of this type of drug (normally 4 week intervals) now have an established place in the medical treatment of patients with neuroendocrine tumours.  These drugs have made a significant difference to the outcomes for Neuroendocrine Cancer patients in terms of quality and extent of life.  There is some build up of evidence to suggest these drugs also have an ‘anti-tumour’ effect (i.e. they stunt or reverse tumour growth) but I do not believe there are any widely recognised scientific claims yet published.

Octreotide Scan

This is a gamma camera type scan where Octreotide is mixed (radio labelled) with a very low dose radioactive material (normally Indium-111).  Somatostatin analogues will ‘bind’ to neuroendocrine tumours releasing excess hormones.  If you then combine the drug with radioactivity and take a picture using a gamma camera, this can detect functioning tumours that might not otherwise be spotted.  Seemples!   This is actually how they found the tumours in my left armpit (axillary lymph nodes) and left collar-bone (supraclavicular fossa lymph nodes).

They inject the drug/radioactive mix on the morning of day 1 and then they scan you each day for 3 days (day 1, 2 and 3).  The bench you lie face up on is quite narrow and you need to remain still.  The gamma camera rotates around your body in a circle moving up or down after each trip.   The radiographers will also try to overlay the scan output onto CT scan pictures to compare and cross reference potential tumour sites. For the patient, it’s the most boring scan ever……but very clever and very important.

Sorry it’s a bit lengthy today.  However, if you like it, please feel free to share.  As usual comments also welcome.


4 thoughts on “If you suspect it, you can detect it

  • Mitchell Berger

    Ronny, “If you don’t suspect it, you can’t detect it” is the slogan I developed more than 15 years ago. Years back I used to make buttons with that slogan which was used by my local support group and by the Carcinoid Cancer Foundation to raise awareness. I’m quite happy that it has been used internationally. However, I gifted all my ownership rights in that phrase to the Carcinoid Cancer Foundation some years ago.

    For decades the CCF was the only organization that patients could turn to for crucial, reliable information. In the US, the Foundation provided initial funding and logistical assistance to establish live, in-person support groups, some of which are still meeting regularly today (including CACS the group I attend). Our support groups are the backbone of patient activism in the US. The CCF is still the best single source of information about NETs, particularly for US based patients. For that reason, I ask that that when people use “If you don’t suspect it, you can’t detect it” that they mention the Carcinoid Cancer Foundation. They’re the organization I entrusted it to.

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