NEW CONTENT added 14th June 2020.

For US patients – see the recently produced NANETS guidelines which provides guidance on the following:

How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?

What should providers do to prepare their clinic for patients?

Should octreotide or lanreotide be delayed or stopped in NET?

Surgery: Can/should surgery be canceled or delayed?

Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?

Lutetium Lu177 DOTATATE PRRT: Should PRRT be delayed if not yet started? Should the next treatment plan be postponed if in the middle of the planned PRRT course?

Iobenguane I 131: Should iobenguane I 131 therapy be delayed if not yet started? Should the next treatment be postponed if in the middle of the planned course of iobenguane I 131 therapy?

Focal radiation: Should the initiation of radiation be delayed? Can radiation be interrupted or postponed if already in progress?

Chemotherapy: Should chemotherapy potentially be stopped, delayed, or interrupted?

Everolimus and sunitinib: Should everolimus or sunitinib be stopped or interrupted during the COVID outbreak?

Imaging: Should imaging be postponed?

Management of ongoing therapy in COVID-19–positive patients

And another from the European Endocrinologist Society – excellent article and covers some of the NEN types away from GEPNENs – click here



NEW CONTENT added 2nd April 2020:

See below for UK NET Specialist video and text regarding all issues with treatment and surveillance 

OPINION. My third article on the COVID-19 issue and based on the top topic currently in my private group – treatment and surveillance concerns over the period of COVID-19 restrictions.  I have no answers, sorry.  My only piece of advice is to join my private group and hear from others in your area/healthcare system.  However, it’s really important that patients should deal direct with their own specialists/hospitals who have started to issue guidance, particularly on routine surgery due to the emergency planned needs for ICU beds. 

Wash your hands and read on

For many cancer patients, it’s enough stress when you have been diagnosed with the disease, but even when this ‘medical stability’ is threatened it can add to a patient’s worry level.  Enter, coronavirus. What now? This is the difficult question that oncologists from all over the world are grappling with: how can they best care for cancer patients in an uncertain and dangerous healthcare environment.  Having read a few articles, I can tell you there is no easy answer. I will post two articles below that you can read views from doctors. 

For Neuroendocrine Cancer patients who are on long term surveillance and treatment this can be a worry. However, it can also be just as much a worry for those just diagnosed and waiting to start treatment.  There’s no one size all suggestions as everyone has different stages/grades (therefore different surveillance periods and therapies) but I intend to cover the most common issues facing us currently and am looking for feedback from across the globe. The big worry for cancer patients (and survivors) is that they may find themselves at a level of increased risk from the current or previous therapies.  There is great Q&A from ASCO for further information of what this actually means and where the risks are.  Click here. 

As for my own situation, I’m currently in self isolation due to a “new and continuous cough” and a history of chest infections/asthma – read my self isolation diary – click here. From a NET surveillance angle, I’m lucky that I’m relatively stable and not due any major therapy other than my 28 day injection of Lanreotide.  Last year, my specialist moved me from 6 month to 12 month surveillance, meaning that my next CT scan is not due until November 2020.  I was due to get 6 monthly blood checks, NET Nurse specialist led surveillance, but to be honest, I’m not too concerned at missing these tests at this point.  These tests are due in Apr/May when the UK is expected to be at “peak COVID-19” – perhaps ‘medical distancing’ is probably safer in my situation.  In my case, this is very low risk and the hospital will probably be very busy.  I’m posting daily updates on my self isolation on this Facebook page. 

Routine Appointments including scans and blood tests.  Personally I would be very happy to have my specialist appointment over the phone or even by video call.  It may even be possible to view scan pictures via video links for those who have the technology (notwithstanding data protection restrictions).  I’m also aware that certain healthcare systems allow patients to download their results although I do believe these should also be discussed with their specialists who can add context.  Pre-diagnostic and diagnostic appointments for cancer patients might be a scheduling issue over the COVID-19 period and it’s a question of how hospitals are going to cope.  Ditto on scans. 

Surgery.  I guess this is a big worry, particularly newly diagnosed and recurrent patients who are operable.  An example I can offer you is from Royal Free London, a massive NET Centre of Excellence. They have suspended some of their elective (planned) surgery from 15th April. They also stated that some procedures will also be cancelled before this date so they can train their staff to support colleagues in other areas of our hospitals.  I very much suspect this will be a common theme throughout the world and I have read about certain hospitals putting themselves on lockdown, only accepting serious cases through their door.  The issue with surgery is further risks of infection and so only the most urgent life threatening surgeries will be considered. Phone ahead if you intend travelling to a hospital. I’d like to think where this affects NET patients, the NET team has already been in contact and would love to hear from anyone with feedback. 

Somatostatin Analogues.  I know many people will be worried about getting their injection. Those who have the “at home” service will see this as an advantage at this time, providing the service is maintained by the providers going forward.  My own nurse phoned ahead last week before coming to administer mine. The fallback plan for some using Lanreotide night be self-inject.  I realise some healthcare systems do not offer Lanreotide self inject.  For those opting for local GP/PCP administration, I suspect most of you will be happy to continue along these lines.  Travelling to a hospital for your injection is going to attract some risk. In UK, if your hospital does not currently offer “at home” services for Lanreotide or Octreotide, this is the time to ask your specialist why not instigate this now and it your hospital does offer at home services but you have opted to use the hospital service, perhaps this is now the time to re-think this?   In USA, you may be able to get at home services for both Lanreotide and Octreotide LAR but this is insurance dependant.  Call Ipsen offers a home injection program for lanreotide, through its IPSEN CARES® program at (866) 435-5677.  Novartis offers a mobile administration program for long-acting octreotide through its Patient Assistance Now Oncology (PANO) program at 1-800-282-7630. 

Targeted Therapy (Everolimus, Sunitinib etc).  I guess people get their prescription in the normal way and so this is less of an issue. I’ve not yet heard of any disruption here. 

Peptide Receptor Radionuclide Therapy (PRRT). I’m hearing of some cases where planned PRRT is being deferred until later- including those already in the middle of treatment  Again, I’d like to hear from people who have had feedback. 

Chemotherapy. This is a tricky one which might effect the higher grade patients but I’m sure in the more aggressive cases, this will be prioritised.  We have already been made aware that those in “active chemotherapy” have an increased risk level. The experts are indicating this is not directly because of the cancer but because this treatment can reduce your immune system. With CAPTEM (oral chemo), I guess people get their prescription in the normal way and so this is less of an issue. I did hear from one patient whose doctor had changed from CAPTEM to Everolimus to reduce the immunity risk.  This may be a ‘one off’ but shows that some doctors are thinking about the risks posed by COVID-19.  I suspect this patients has a well differentiated rather than poorly differentiated tumour, i.e. there is less NET risk. 

Cancer is a serious condition that requires treatment. Regardless of the type of treatment, the best advice is to talk with your cancer care team about whether or not any modifications to your cancer treatment regimen are necessary. In the absence of any symptoms or signs of COVID-19 infection, continuing your cancer treatment is likely to be the best course of action.

Clinical Trials.  This is an area that could be affected but there’s little news yet. I did pick up on this NBC report from USA which mentioned an issue with Clinical Trials.  If you have any questions about your clinical trial, you should make contact with the person with whom you normally deal. I have heard from a few people that their clinical trial has been postponed. 

Finally, the two oncologist articles I promised you above are here:

Article 1 – “Coronavirus means difficult, life-changing decisions for me and my cancer patient” – click here to read. 
Article 2 – “The One-Two punch: Cancer and Coronavirus” – click here to read. 

I’m thankful to Neuroendocrine Cancer UK (formerly NET Patient Foundation) and Professor John Newell-Price for answering questions from the Neuroendocrine Cancer and Multiple Endocrine Neoplasia Community Thanks for reading – stay safe, stay indoors, wash your hands.  Watch this video here:

See a textual version of this advice in UK by clicking here.