UPDATED 22 Apr 2020 – COVID-19 and MEN patients. See article 7 below.

UPDATED 5 Apr 2020 – excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article 6 below.

UPDATED 28 Mar 2020 – see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general summary of the effects of treatment in regard risk, second is a video from the Chair of UKINETS about NET patient concerns and the effects on treatment and surveillance. See Article 5 below. Also see COVID-19 pandemic strategy for the interim management of patients with Neuroendocrine Tumours/Neuroendocrine Cancer prepared by the Executive Committee of UKINETS (applicable to UK and Ireland patients) – find the link in Article 5 alongside the video.

UPDATED 24 Mar 2020– some questions specifically related to NETs were added – output from Dr Pamela Kunz Oncology and NET Specialist) and Dr. Janice (Wes) Brown (Infectious Disease). At least one question answered by Dr James Howe (Surgeon). See Article 4 below.

UPDATED 21 Mar 2020 – excellent Q&A from ASCO on cancer patients generally – see Article 1 below.

UPDATED 13 Mar 2020 – added a discussion from our own Dr Mark Lewis, an Oncologist who is also a NET patient with MEN1 (he’s had a Whipple procedure to remove a pancreatic tumour) – see Article 3 below.

Hi People, I’ve been receiving many messages asking about NETs and the coronavirus. Please note I’m unable to answer these questions. Also, there have been several posts in my private group but in a more general context. Again, no-one in my private group can answer on specifics in relation to your individual situation with Neuroendocrine Cancer.

I’m aware that people with cancer and cancer survivors, particularly those with compromised immune systems, are likely worried about the potential impact of coronavirus on their health. The best suggestion I have for patients or their primary supporter is to talk with their specialists and health care teams to discuss their options to protect themselves from infection. In terms of keeping up to date, I also suggest to listen to your national disease control agencies (NHS/CDC/etc etc), they are leading on the best information and threats applicable to the general population and it’s mostly based on the advice coming from the World Health Organisation (WHO). The WHO are updating that advice frequently based on data from areas controlling the infection but also from scientists currently undergoing research, there’s still a lot we don’t really know about coronavirus. Listen to these guys and not what you see anecdotally on social media.

WHO – Click here.
UK NHS – Click here.
US CDC – Click here. (see this link from US CDC for people who are at higher risk for severe illness)
(other countries – please check with your national disease control agencies).

I know many of you heard about the lady with NET who was stuck on the Grand Princess cruise ship off California – I understand she is leaving the boat today (9 Mar) and being transported to her US state facility in North Dakota for quarantine and from there, any NET treatment and surveillance will be considered. The fact that she has NETs, was on that cruise ship, and the cruise ship had 21 cases of coronavirus is a complete coincidence – there is no medical connection between her or NETs and coronavirus. I wish the lady well going forward. For those who missed this story – see the CBS News clip.