Neuroendocrine Cancer specific advice

Your Health 

COVID-19 – National Health Advice – on risks, symptoms, shielding, testing and further information:

NHS England : https://www.nhs.uk/conditions/coronavirus-covid-19/ 

NHS Scotland : https://www.scot.nhs.uk/coronavirus-covid-19/ 

NHS Wales : https://phw.nhs.wales/topics/latest-information-on-novel-coronavirus-covid-19/

HSCNorthern Ireland : https://www.publichealth.hscni.net/news/covid-19-what-situation-northern-ireland 

Neuroendocrine Cancer Expert Advice: 

The following includes information on specialist care – including potential for increasing risk of vulnerability to COVID19 infection – and available specialist care services.

There’s still time to tell us about your experience of care during this time – deadline 31st May – Click here to complete the survey

Referrals & Specialist Teams

All specialist Centres and Clinics have continued to receive referrals, throughout the pandemic, and continue to do so.

Some specialist teams have had members of the team re-deployed to other ares, in response to the crisis – however, many are now returning to their usual role and place in their team. This is a gradual process and may depend on local circumstances. 

  • We are happy to assist in any queries but would advise that any urgent clinical concerns are raised with your team or local urgent care services. NHS emergency care is available 24/7.
  • If your query is health related but non-urgent and you are having difficulty in contacting your team, you can contact us and we will try to help – please bear in mind that we do not have access to hospital IT systems so cannot view appointments or personal care records.

You can call NCUK on 0800 434 6476 – Monday-Friday 9am-5pm

Consultations:

Many consultations have now been transferred to telephone or video call clinics – however, if you need to be seen in person, there are precautionary measures in place to ensure you can safely attend. Your specialist team will confirm your appointments and whether they will be by phone, video-call or in person.

Scans, blood tests and further investigations:

Services are resuming and there are precautionary measures in place to ensure your safety, should you need to have a scan, blood test or other investigation.

Some appointments may still be postponed to a later date – but all decisions will be based on clinical need and potential risk assessment.

If you have difficulty in attending hospital due to transport difficulties – let your team know. 

We do have a Compassionate Travel Grant that offers financial assistance for economy class travel – the form needs to be completed by a member of your specialist care team.

Treatments: please always discuss individual arrangements with your specialist care team

If you have difficulty in attending hospital due to transport difficulties – let your team know. 

We do have a Compassionate Travel Grant that offers financial assistance for economy class travel – the form needs to be completed by a member of your specialist care team (link)

a.    Somatostatin Analogues : Sandostatin LAR (Octreotide) & Somatuline Autogel (Lanreotide) – there is no known increased risk of contracting COVID19 with these medications (low – no extra risk). 

Services are available to ensure continuing care with this treatment.

b.    PRRT treatments like Lutathera and / or Yttrium – there is limited evidence of risks but the side effect profile would be concerning as these treatments can cause bone marrow suppression (possible – recommend shielding during and for 12 weeks after treatment). 

Where services had been halted, these are now resuming – with precautionary measures in place to ensure you can have this treatment – and follow up blood test – done safely. 

Your specialist team will confirm arrangements with you.

c.     Chemotherapy, Immunotherapy, Everolimus and Sunitinib – these therapies do hold a higher risk due to their potential side effects – which include reduced immunity, and fall under the ‘Vulenrable’ guidance published by the NHS (high – recommend shielding during and for a minimum of 12 weeks after treatment). 

Some chemotherapy treatments have been altered, depending on clinical need and risk assessment, however, oral (tablet) treatment has been continued – with arrangements in place to ensure safe delivery, monitoring and review.

d.    Surgery, Embolisation, Ablation, treatments given in hospital – You will be given strict advice on self-care and shielding before being sent home, along with medications and contact numbers should you need them. (Risk varies according to procedure – please follow specific advice given by your care team) 

Pre-admission testing for COVID19  is being carried out – usually 24-72 hours before admission date. 

Precautionary measures are in place to ensure safe delivery of care during admission – and across the UK, Cancer Alliances have worked hard with their hospitals to ensure urgent cancer care can continue / resume. This may mean admission to a different hospital than expected,  however arrangements will have been made to ensure the right level of expertise and skill mix to proceed with your care is in place.

e.     Trial therapies – Risk varies according to procedure – please follow specific advice given by your care team. However, many trial therapies have been interrupted or halted. Your specialist care team and trial link nurse/coordinator will be able to give you further information about your particular trial therapy.  

f.      Bone strengthening therapies –- most of these such as Bisphosphonates (e.g. Zolendronic Acid), have been halted and can be safely postponed as they can still be effective over many months in between doses – but please discuss arrangements with your specialist team.

Links for those with additional Long-term (Underlying) Medical Conditions:

Diabetes UK https://www.diabetes.org.uk/about_us/news/coronavirus 

British Heart Foundation  https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health

British Lung Foundation https://www.blf.org.uk/support-for-you/coronavirus/people-living-with-lung-condition

NCUK:

Nurse Advice-line – for health-related queries – 0800 434 6476 

or use the nurse contact form on our website (link)

NCUK Counselling Service (link)

Zoom Natter Meetings – contact Nikie

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