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One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don’t always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date.
I attempted to pin this down in my much read “10 questions to ask your specialist” but perhaps this post will supplement this list extending it to any doctor at any type of appointment, not just diagnosis.
If your doctor or pathology report says you have a grade 3 (high grade)
If the doctor does not add whether it is a well differentiated or poorly differentiated type, then do not leave the office/call without finding out. This is an extremely important clarification as it affects many things.
Similar problem – if your pathology report says “Neuroendocrine Carcinoma” but then goes on to state grade 1 or 2 or a Ki67 figure less than 21%, then your pathologist is out of date or has made a typo – challenge it.
Read more here why.
If your doctor tells you have carcinoid syndrome
When you look at many medical documents or websites including on patient advocate sites, you might imagine there is only one single hormonal syndrome related to NETs. This can lead to great confusion. Some of this confusion is caused by use of the antiquated misnomer term ‘carcinoid’.
So, if you doctor says you have carcinoid syndrome and your 5HIAA is normal, you are not metastatic stage IV to the liver, and your NET primary is not in the small intestine or lung, then you should question that. While it is possible to have carcinoid syndrome without liver metastases or in tumours outside of the small intestine or lung, it is an unusual scenario, and it is worth asking for checks of the offending hormones related to your primary tumour location if you are unusually symptomatic (e.g. for pancreatic NET, there are several functional variations such as Gastrinoma, Insulinoma, Glucagonoma, VIPoma, Somatostatinoma). Read more here:
If your doctor tells you that you will be getting chemotherapy and you have a grade 1 or 2 NET
For some this will be accurate, particularly those with grade 2 in the higher ki67 levels, particularly for pancreatic NETs. A combo of capecitabine combined with temozolomide (CAPTEM). However, for most, this may be a misleading term. Healthcare professionals often use chemotherapy as an overarching term without realising the anxiety that a patient may feel when hearing the term. Somatostatin analogues (octreotide or lanreotide) and targeted therapies such as everolimus (Afinitor) and sunitinib (Sutent) are not cytotoxic chemotherapy.
If your doctor tells you that you will be getting Chemotherapy, ask for the drug name as a point of clarification.
Read more about chemotherapy for Neuroendocrine Cancer by clicking here.
The heading of this section is a word which is extremely important in Neuroendocrine Neoplasm terminology. What it means in the most basic of terms is that other than the cell of origin of a tumor, everything else is different.
Not every patient will be incurable or metastatic
Not every patient will need regular surveillance checks
Not every patient will have functional tumours (have a hormonal syndrome)
Not every patient will get surgery
Not every patient will get chemotherapy
You’re allowed to ask questions. If you don’t understand the answer, ask for clarification. If you still need further information beyond that, you should ask for confirmation of what was said and agreed. Joining my group (see green box below) can help you understand which questions to ask, help you formulate your own questions, help you to understand answers you receive (but context remains important and only the author of the question can really understand that).
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.
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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