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Neuroendocrine Tumours – not an exact Science

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I’ve been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn’t on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more ‘modern’ and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study.  Different teaching methods? different teachers?  Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge.

I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer).  Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient.  For me, this can be attributed to a number of reasons including (but not limited to):

  • This cancer arrives and goes on to upset the body with vague symptoms and there can be signs, suspicions and perhaps just plain coincidences. I need to be able to at least assess if something is or isn’t potentially connected to my condition.  Not easy.
  • This type of cancer is uncommon and even some medical staff struggle to understand it. I want to be able to articulately explain my condition when this happens.
  • When speaking to those who do understand it, I want to understand what they are telling me.  Moreover, I want to challenge them when I don’t understand (or don’t agree with) what they are telling me.
  • My condition and its treatment comes with side effects and I want to understand what these are and how they might impact on my quality of life so I can manage that and/or seek assistance.
  • ……. I suspect I’m still a control freak!

I’ve gained my recent medical knowledge by carefully studying well respected websites and publications but I’m always very selective about which sites to trust – see blog Google is not a synonym for research.  Through this process, you also learn who the specialists are and seek out their articles and publications.  That’s not to say I fully understand everything I read or interpret in the right context!  However, if you want to become your own ‘advocate’ or be a ‘proactive patient’, then knowledge is one of the things that can empower you.

Dr. Gene Woltering

Dr. Gene Woltering

One of my most recent ‘educational discoveries’ was a 12 year old (but still relevant) paper found on the Carcinoid Cancer Foundation’s website.  It comprises the text of a presentation by Dr Gene Woltering entitled “Introduction to the Basic Science of Carcinoid”. Dr Woltering is a well known NET Cancer ‘guru’ from USA.  As an Endocrine expert, he certainly knows about hormones.  I found his paper fascinating even without the accompanying slides. What Dr Woltering has been able to do is to bring the science of carcinoid (Neuroendocrine Tumours in general) to the level where it could be understood by patients – he certainly had the motivation as it was directed at 200 carcinoid patients who can be very inquisitive types 🙂

Dr Woltering is ‘direct and to the point’ which I really appreciate from medical staff.  Not only is this paper informative to the point of being extremely useful to inquisitive patients, but there is some really interesting history in it too. For example the first use of Octreotide in USA and its first use in the treatment of ‘Carcinoid Crisis’.  The ‘plain language’ description of the role of ‘somatostatin’ and ‘somatostatin analogues’ (a man-made version) is more understandable than other versions of these processes I have read previously.  I strongly recommend this paper (CLICK HERE) to NET Cancer patients with a thirst for a deeper understanding of their disease.

Thanks for reading

Ronny Allan

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1 Comment

  1. Ed says:

    I will look into this paper. Have you read my blog post “Have they found a cure for cancer”?
    It’s about anti cd47 antibodies. It’s very interesting. Tell me what you think. 🙂
    http://www.carcinoid-cancer.com/have-they-found-a-cure-for-cancer/

    Like

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