Kate 💙 #LetsTalkAboutNETs

PROs (Lung NETs) Neuroendocrine Cancer UK Patient Support. INCA Research Committee Member. @TheChristieNHS Ask: - if not, why not?

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@OncoThor We run a UK patient Helpline covering Lung NETs - the confusion around hearing TC and AC is huge. And not only for the patient. Remains such an unhelpful classification. @ncukcharity

[Thor Halfdanarson @OncoThor]

Twice today already at ASCO I have heard presenters say “patients failed treatment”.

Can we please, please stop that?

Treatments fail patients, not the other way around…

[Thor Halfdanarson @OncoThor]

Images from the NET clinic...

Working in the NET clinic is often humbling... Tumors do not read textbooks and sometimes, things just do not make sense but yet are happening right in front of you. As I often say, every patient with NET is unique (of course, every patient with cancer regardless of cancer type is unique...) with their own clinical presentation.

This patient below has metastatic lung NET, indolent, producing very large amounts of serotonin but with no diarrhea or flushing (serotonin does not cause flushing by the way but does cause diarrhea) so essentially asymptomatic in terms of typical carcinoid syndrome. This patient however has carcinoid heart disease with severe tricuspid and pulmonary valve regurgitation. Interestingly, there is no lower extremity edema but there is pulsatile hepatomegaly (a classic finding), both systolic and diastolic murmur, elevated JVP but not a trace of lower extremity edema.

Below you can see evidence of hepatic venous congestion in the venous phase of the CT with what sometimes is called nutmeg liver. That lobular pattern is not seen on the arterial phase or on the recent gadoxetate enhanced delayed MRI imaging.

I just thought I should share that carcinoid syndrome can present in very atypical ways without the cardinal symptoms of diarrhea and flushing. In this case, carcinoid heart disease is the only manifestation of the syndrome.

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@OncoThor Lung NETS just keep on giving @TheChristieNHS @MatthewEvison1 @UKINETS

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate @ncukcharity Congratulations! Well done you x

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@BTOGORG @emmalodowd @MatthewEvison1 @OncoThor UK also trying to ‘stop calling them carcinoids’ in great podcast here

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate @ncukcharity Amazing lady, thank you!

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate Your training has been a marathon in itself! Thank you for all that you’re doing to raise awareness of #neuroendocrine cancer 🙏🏻

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate @ncukcharity Wow!

[Thor Halfdanarson @OncoThor]

Want to know more about the intersection of endocrinology and oncology when it comes to diabetes...?

Things like:
1) Glucose control problems with systemic therapy like mTOR inhibitors, ICIs, somatostatin analog and others?
2) Secondary cause of diabetes as an early manifestation of malignant

Look no further. @TheLancetEndo has this and much more covered in this excellent review

https://t.co/uwLu2WtNLo

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate We did just that today!

[Mark Lewis, MD, FASCO @marklewismd]

Much of the eye-opening @BenSasse interview is instructive as to how NOT to communicate as an oncologist

1) get to the point quickly (before the “tinnitus of terror” sets in) and 2) make it clear that the primary & metastatic sites are the SAME cancer

https://t.co/Ig8SV7TKms

[Sinéad Kay @waihekemum]

@OncoThor @Ja_Capdevila @ENETS_ORG And this is why I don’t leave X.
Thanks for sharing, from a patient perspective it can feel like a dearth of information on lung NETs, so new papers are precious!

[Thor Halfdanarson @OncoThor]

Much welcomed @ENETS_ORG guidance paper on management of patients with lung and thymic NETs (soon we will stop calling them carcinoids...).

As always from ENETS, this is quality stuff! If you see patients with this malignancy, you SHOULD read this paper!

Thanks ENETS and team including @Ja_Capdevila @deroose_c @GCarboneroLab!

https://t.co/DSojMVwYUa

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@OncoThor @ENETS_ORG Thanks, Thor. We still need so much more for Lung NETs patients. This (deep breath) ‘carcinoid’ @BTOGORG podcast is a step in the right direction too: https://t.co/4vEmXpVvNE

[Thor Halfdanarson @OncoThor]

More on treatment related myeloid neoplasms (t-MN) following radioligand therapy (PRRT) in patients with NETs. 4.2% of patients develop t-MN after a median time of 48.3 months. Nine of 13 patients with t-MN received radiosensitizing chemotherapy, almost exclusively capecitabine (not standard practice in the U.S. ). As expected, survival after t-MN and diagnosis was short. 10.4 months.

This is a very valuable addition to the literature from @DrDavidLChan and team!

https://t.co/8AylMesHAE

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@KatydearKate @ncukcharity And my goodness me, you’ve put in some personal effort for Neuroendocrine Cancer UK patients! Thank you. 🙏🏻

[BTOG @BTOGORG]

Podcast - BTOG Does Lung Neuroendocrine Tumours: Changing the Conversation.

What is PRRT?

Hosted by @emmalodowd, @MatthewEvison1 and Prof Was Mansoor explain why we should move beyond “carcinoid,” how diagnosis and staging pathways differ from standard lung cancer, and what is needed to improve access, follow-up, and treatment options.

Watch, listen or download the full podcast at Apple Podcasts, Spotify, Amazon or our website https://t.co/dRwTV5uW4z

https://t.co/sEmS3KBcaD

https://t.co/uUTvnlls12

https://t.co/DrcTUE0bZV

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@BTOGORG @emmalodowd @MatthewEvison1 Excellent podcast for all those treating (or diagnosed with) lung NETs patients @netcancerday @UKINETS

[Kate 💙 #LetsTalkAboutNETs @KateNCUK]

@amy_reast @SWNS Congratulations! Be great to feature this one sometime please https://t.co/ywYokqTCR5

[BTOG @BTOGORG]

Podcast - BTOG Does Lung Neuroendocrine Tumours: Changing the Conversation.

Follow-up: 15 years (and why)

Hosted by @emmalodowd, @MatthewEvison1 and Prof Was Mansoor explain why we should move beyond “carcinoid,” how diagnosis and staging pathways differ from standard lung cancer, and what is needed to improve access, follow-up, and treatment options.

Watch, listen or download the full podcast at Apple Podcasts, Spotify or our website https://t.co/dRwTV5uW4z