Early diagnosis of late stage cancer

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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, one person mentioned 20 and even counts that as how long since this person has been  living with the cancer (I don’t necessarily agree with that method as it is a very non-scientific approach and cannot be proven!).  Crystal balls are not a scientific instrument either! Some might say the same about cancer prognostics!

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.

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. Worth nothing that Neuroendocrine Tumours are not all about carcinoid syndrome – read the bigger picture by clicking here!

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..

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.

Heterogeneity

One thing that worries me is the automatic assumption in the community chat groups that everyone gets everything the same when in actual fact, there is considerable heterogeneity in Neuroendocrine Neoplasms.  Click here or on the graphic below:

Check out my spotlight series – if you do not see your type listed, let me know.  Click here or on the graphic below:

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 strage 4 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.

P.S. Ignore the ‘rare’ hype

Disclaimer

I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.

Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted.  Please check any references attached.

Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.

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Thanks for reading.

Ronny

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