OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain – I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn’t feel ill enough to see a doctor.  To cut a long story short, you can read about me here.

“The cancer has been growing for years”

One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I’m fairly certain my surgeon once said something similar.  Clearly doctors are ‘guesstimating’ so these comments must be considered anecdotal rather than scientific fact – there’s simply no surveillance records to prove it in individual cases.  However, doctors know stuff based on epidemiology over a period of time, i.e. they understand the behaviour of most NETs.  Take a look at the diagram below from the Inter Science Institute’s (ISI) publication ‘Neuroendocrine Tumor, A Comprehensive Guide to Diagnosis and Management (Fifth Edition)‘ Woltering, Vinik, O’Dorisio, et al. This is the only evidence I can find of such assertions of growth periods prior to diagnosis of NETs.  This publication remains one of my go to sources but I sense I’m using it less and less nowadays. In my opinion, the NET overview content is now out of date having not kept up with nomenclature changes. Furthermore (again in my opinion) it’s an example of something which started as a book about ‘carcinoid‘ and was then updated to be called ‘Neuroendocrine Tumors’ but essentially retained its ‘carcinoid’ imprint.  Nonetheless, I thought the graphic fitted the title.  Many other types of NETs are also slow growing so I guess the growth periods might be similar.  However, please note this graphic is clearly related to the type of NETs once known as ‘carcinoid‘ and which potentially oversecrete specific hormones (predominantly serotonin) leading to carcinoid syndrome. 

I wrote an article very early on in my blogging entitled “Early signs of a Late Diagnosis” and received many plaudits for the very apt title.  The article was focused on the various NET hormonal syndromes which can make this cancer noisy and lead to diagnosis (albeit late) and this is really an addendum to that post.

Earlier diagnosis of any cancer is great and with NETs, even an earlier diagnosis at a later stage (including stage 4) might give the person a better chance of getting treatment and turning it into a chronic disease. Grade remains a differentiator though. For those who might be frightened by this graphic, I say don’t be – it’s very ‘broad brush’ and old and as I hinted above, it has a ‘carcinoid’ imprint and is really aimed at midgut NETs.

Clues in flushing?

Another interesting find is included in my article on flushing.  Did you know there are 4 types of flush according to mega NET expert Dr. Kjell Öberg, Professor of Endocrine Oncology at the Medical Faculty of Uppsala University, Sweden.  You can read the full article here but I found it interesting that one of the four flush type descriptions “The first type is the diffuse, erythematous flush, usually affecting the face, neck, and upper chest (i.e., normal flushing area). This flush is commonly of short duration, lasting from 1 to 5 minutes, and is related to early stages of malignant midgut NETs“.  I would personally put my flush in that category and when I look back, I only remember the flushing for around 7-8 months prior to diagnosis.   I haven’t had a flushing experience since cleaning my teeth in hospital after major surgery Nov 2010.

Summary

Clearly I’d rather not be diagnosed with cancer, I’d love no-one to be diagnosed with cancer.  But that is something we won’t achieve for some time in my opinion.  Some cancers are quiet, some are difficult to diagnose even when noisy but the earlier the better, even at stage 4.  My cancer is incurable but treatable.

We need better ways to detect cancer earlier, we need more screening programmes but before that we need better screening tools and science needs to find highly sensitive (accurate) ways of testing – there is some hope in current molecular studies going on and I’m hoping to write about that soon in the case of Neuroendocrine Neoplasms.

I’m also thankful for the treatments we have now and for the teams of NET professionals who keep us under surveillance via their guidelines and best practice methods.