A blog by Ronny Allan

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Continuing with the output of updated clinical guidelines from ENETS, this paper is unlike the others so far in 2022/23/24 where the guidelines were set against several clinical questions for particular scenarios (presumably common in the NET patient population).  So far, the clinical guidelines have centred on Gastroenteropancreatic Neuroendocrine Neoplasms (GEP NENs) (Neuroendocrine Carcinoma (NEC) and Neuroendocrine Tumours (NET)).

The latest output comes in a different format than the GEP NEN output but is based on Lung NETs, i.e. well differentiated Lung NETs. I’m hoping it is a precursor to a set of updated Lung NEN guidelines.  Although, as you will see there is no well differentiated grade 3 but a special category of well differentiated Lung NET with aggressive features.  The Lung WHO 2021 classification of tumours (see Spotlight on Lung NENs) covered this special category (putting it into the large cell Lung NEC category as a placeholder).  The same reference also failed to remove the ‘carcinoid‘ misnomer word, so my apologies for the use of this term in the attached reference link and in this post. However, still good to see output for Lung NETs.  Worth pointing out that many Lung NEC are handled by Lung Multidisciplinary Teams (MDT), a slightly controversial point, particularly when the statistics for these Neuroendocrine Carcinomas (particularly small cell lung cancer (SCLC) are not included in overall NEN statistical data.

The format is based on a survey completed by thirty-four experts from 20 centres specialising in lung NET (I will in due course update my ‘Find a NET expert‘ section to incorporate this useful data).

Clinical questions

Q1 and Q2 collected information about the medical specialist responding to the survey, who is the first point of contact for the patient, and the structure of the centre (type of structure, lung NET dedicated MDTB, number of lung NET dealing per year, and number of new lung NET dealing per year; details are shown in Table 1).
Q3 and Q4 focused on the diagnostic investigations for specific clinical cases with potentially resectable disease (a peripheral or a centrally located lung NET lesion).

Clinical case scenarios (Q5–11).

Adjuvant treatment (Q12–15)

Feasibility of conducting an adjuvant clinical trial (Q16–17)

Follow-up protocols (Q18–20)

Clinical cases (21, 22)

Now read the reference material below if you are interested in the output from this survey and the summarising information.

Reference

Click on the blue link below see read the discussion and the recommendations for each of those questions.

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Anna KoumarianouPier Luigi FilossoLisa BodeiJusto P. CastanoLynnette Fernandez-CuestaChristophe M. DerooseMatthieu FollClarisse DromainNicholas Simon ReedMartyn CaplinJaume CapdevilaJenny FalkerbyAntongiulio FaggianoAndrea FrillingEnrique GrandeRodney J. HicksAtsuko KasajimaBeata Kos-KudlaB. A. KrishnaEric LimAnja RinkeSimron SinghChrissie ThirlwellMarco VolanteThomas Walter

First published: 16 May 2024https://doi.org/10.1111/jne.13412

More Guidelines


Read guidelines published so far – click picture to browse


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.

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.


Click here and answer all questions to join my private Facebook group



Thanks for reading.

Ronny

 

Check out my WEGO Health Awards

Check out my Glossary of Terms – click here

 

Please Share this post for Neuroendocrine Cancer awareness and to help another patient

 


Discover more from Ronny Allan - Living with Neuroendocrine Cancer

Subscribe to get the latest posts sent to your email.

By Ronny Allan

Ronny Allan is a 3 x award-winning accredited patient leader advocating internationally for Neuroendocrine Cancer and all other cancer patients generally. Check out his Social Media accounts including Facebook, BlueSky, WhatsApp, Instagram and and X.

I love comments - feel free!

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Related Posts

Discover more from Ronny Allan - Living with Neuroendocrine Cancer

Subscribe now to keep reading and get access to the full archive.

Continue reading

Our website use cookies to improve and personalize your experience and to display advertisements(if any). Our website may also include cookies from third parties like Google Adsense, Google Analytics, Youtube. By using the website, you consent to the use of cookies. We have updated our Privacy Policy. Please click on the button to check our Privacy Policy.