Advice on coronavirus for people with cancer, update 2

This guidance has been produced by the One Cancer Voice* charities in partnership with NHS England on 25 March 2020

This guidance relates to cancer in general. Please see our page on COVID-19 and lymphoma for information specifically for people affected by lymphoma.

One cancer voice - Covid-19

Please note: The most recent update from One Cancer Voice is version 6, dated 4 June 2020

Please refer in the first instance to wider Government guidance on:

The Government also have a wide range of information to help people at this time, including on employment, financial support, school closures and childcare. See: https://www.gov.uk/coronavirus

This document contains:

  • Cancer patient specific Q&A:
    • People living with cancer now 
    • People who have had cancer in the past 
    • Family/friends/carers of people living with cancer
    • The future 
    • For people worried they have cancer
  • Detailed questions about the categorisation of extremely vulnerable people

People living with cancer now 

Q1 Do I need to do anything differently as someone who is being treated/in remission from cancer/living with a chronic cancer?

People with certain cancers and those who have received or are receiving certain treatments are at risk of severe illness if they catch coronavirus (COVID-19). This includes:

  • people with cancer who are undergoing active chemotherapy
  • people with cancer who are undergoing radical radiotherapy for lung cancer
  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • people having immunotherapy or other continuing antibody treatments for cancer
  • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs.

The Government has published guidance for these people, and strongly advises them to rigorously follow shielding measures in order to keep themselves safe:

  1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
  2. Do not leave your house, except to attend essential medical appointments (please speak to your hospital team to determine which appointments are absolutely essential).
  3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces for example family homes, weddings and religious services.
  4. Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
  5. Keep in touch using remote technology such as phone, internet, and social media.

The NHS is writing to people in these groups with advice and information about what to do during this time, and where to access support.  If you are affected, and have a scheduled hospital or other medical appointment during this period, talk to your clinical team to ensure you continue to receive the care you need and determine which of these are absolutely essential.

For others with cancer, not in one of the groups outlined above, the Government is advising you should be particularly stringent in following social distancing measures. They are:

  1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
  2. Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible. 
  3. Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information.
  4. Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs.
  5. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media.
  6. Use telephone or online services to contact your GP or other essential services.

The detailed advice can be found here

Q2 I think I should be considered as extremely vulnerable, but I haven’t received a letter. What should I do?

The criteria for cancer patients were carefully defined, based on those with greatest clinical risk.  If you are unsure of your risk and what measures you should be taking, you should speak with your hospital specialist.  If this is not possible, you should contact your GP.

Q3 I don’t think I should be considered as extremely vulnerable, but I have received a letter saying I am. What should I do?

The criteria for cancer patients were carefully defined, based on those with greatest clinical risk.  Some cancer patients may receive a letter because they have other conditions that place them in the highest risk cohort.

If you are unsure of your risk and what measures you should be taking, you should speak with your hospital specialist.  If this is not possible, you should contact your GP.

Q4 I have received the letter more than once. Why?

Some people may receive the letter more than once because they have more than one condition that places them in the highest risk cohort.

Q5 Will this categorisation of people be used to determine prioritisation for treatment?

Absolutely not. This is about identifying those people most at risk so they can take measures to protect themselves from developing serious illness from COVID-19.  It is also about making sure they can access care and support during this time, including social care and help with practical needs such as getting medicines.

Q6 What will happen to my cancer treatment?

For example:  

  • Will it be postponed?
  • Should I still go to hospital appointments? 
  • How will my hospital decide whether I am a priority for treatment? Will there be national rules?
  • If treatment, including stem cell transplants, are deferred and I begin to relapse will this limit my eligibility for future lines of treatment?
  • Should I start chemotherapy treatment (particularly if it is a 2nd/3rd line for "mop up" ) or postpone? 
  • As a stage 4 patient will I be given life support if I have breathing difficulties due to the virus?
  • If I get the virus and recover, will this affect my cancer treatment and outlook?

Clinicians will always make decisions to prioritise treatment for those most in need and in consultation with patients.

Most hospitals have started to use more telephone consultations as a way of helping people to avoid long waits in clinics and for treatment. You may be called to arrange your treatments in this way, and planned treatments may need to be moved to help with running a smooth service. 

Your clinical team are best placed to talk with you about the effect on your treatment and appointments. They will work with you to determine the best course of action in each individual situation. If you have any concerns or questions about your treatment, please speak to your clinical team.

Q7 I am on chemotherapy. If I experience sweats/cough/shivering should I call NHS 111 or the chemotherapy care line? 

You should call the chemotherapy care line. If the chemotherapy care line is not available in your area, please speak to your clinical team about who you should call in this situation. 

Q8 If I need to shield/self-isolate for more than seven days, what will happen in relation to treatment that has to be done weekly?

Your clinical team are best placed to talk with you about the effect on your treatment and appointments.  They will work with you to determine the best course of action in each individual situation.

There is guidance on staying at home if you or someone in your household think you have coronavirus: https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance/stay-at-home-guidance-for-households-with-possible-coronavirus-covid-19-infection

Q9 How can I maintain my mental health during this time?

We understand that this may be a worrying time and you may find staying at home and having limited contact frustrating. At times like these, it can be easy to fall into unhealthy patterns of behaviour, which can make you feel worse.

Simple things you can do to stay mentally and physically active during this time include:

  • look for ideas for exercises to do at home on the NHS website
  • spend time doing things you enjoy – reading, cooking and other indoor hobbies
  • try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and recreational drugs
  • try spending time with the windows open to let in fresh air, arranging space to sit and see a nice view (if possible) and get some natural sunlight. Get out into the garden or sit on your doorstep if you can, keeping a distance of at least 2 metres from others.

You can find additional advice and support from Every Mind Matters and the NHS mental health and wellbeing advice website.

Q10 What are the symptoms likely to be?/Will the symptoms be different because I have cancer?/What should I look out for?  

The NHS outlines the common symptoms of coronavirus on its website.

Q11 Can you catch this virus more than once?

It is not yet known whether reinfection is possible, although many experts think it is unlikely.

Q12 What should I do if my clinician is diagnosed with coronavirus? 

If your clinician is diagnosed with coronavirus and you have not seen them recently, then you are unlikely to have been exposed to coronavirus.

Health professionals are working to contact anyone who has been in close contact with people who have coronavirus.  If you are concerned about the impact this will have on your treatment, contact your hospital for advice.

Q13 Should I go to work /not see friends?

Please see answer to Q1.

People who have had cancer in the past 

Q14 Does having had cancer treatment in the past (for example, stem cell transplants, chemotherapy, radiotherapy) in the past – even if I am now in remission – increase my risk if I get the virus?  

This depends on the type of cancer and the treatment you have had. Most people make a full recovery after cancer treatment and their immune system either recovers fully or is not affected.  (see Q1 response)

Family/friends/carers of people living with cancer 

Q15 I have been exposed to the virus and am a carer for someone with cancer. What should I do? Who will look after the person I care for if I am unable to?

The Government is currently advising that if you have symptoms and you live with a vulnerable person, you should try to find somewhere else for them to stay for 14 days.

If you provide essential care (such as help with washing, dressing, or preparing meals), you may find this guidance on Home care provision useful.

It is also a good idea to think about what happens if you become unwell. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help, you can contact your local council who should be able to help you.  Carers UK have also produced advice for those currently caring for others: https://www.carersuk.org/help-and-advice/health/looking-after-your-health/coronavirus-covid-19

Q16 I share a house with a person who needs to be shielded, but I am unable to follow the stringent social isolation guidelines (e.g. because of the size of the property or because I am a key worker). What should I do?

It is important that that the extremely vulnerable person follows the measures to shield themselves. You should consider all other arrangements for yourself (eg living arrangements etc) to enable them to.

Any essential carers or visitors who support you with your everyday needs can continue to visit, unless they have any of the symptoms of coronavirus. All visitors should wash their hands with soap and water for 20 seconds, on arrival and often.

Q17 I am a carer to someone with cancer. Should I be doing anything differently? 

If you provide essential care (such as help with washing, dressing, or preparing meals), you may find this guidance on Home care provision useful.

Q18 Should I consider not sending my child with cancer/sibling of a child with cancer to school?

The Government has asked parents to keep their children at home, wherever possible, and for schools to remain open only for those children who absolutely need to attend. Please see the Government guidance on school closures: https://www.gov.uk/coronavirus

If your child with cancer falls into any of the extremely vulnerable groups outlined in Q1, they should follow the measures to ‘shield’ themselves.  Siblings, family members and/or others living in the same household as the child should stringently follow guidance on social distancing.

If your child with cancer is not in one of the extremely vulnerable groups and you feel you need to send them to school (e.g. you are a key worker), please seek advice from the clinical team overseeing your child’s care.

The future 

Q19 Will cancer patients be a priority for the vaccine if/when it is developed? 

There is currently no vaccine for this form of coronavirus. Research is being done to develop a vaccine, but this will take many months. 

Q20 If the pressure on the NHS grows, will my treatment be delayed? 

See Q6.

Q21 Will there be problems accessing my cancer drugs? 

There are currently no medicine shortages as a result of COVID-19. The country is well prepared to deal with any impacts of the coronavirus and we have stockpiles of generic drugs like paracetamol in the event of any supply issues. 

The Department of Health and Social Care is working closely with industry, the NHS and others in the supply chain to ensure patients can access the medicines they need and precautions are in place to prevent future shortages. 

There is no need for patients to change the way they order prescriptions or take their medicines. Patients should always follow the advice of doctors, pharmacists or other prescribers who prescribe and dispense their medicines and medical products. The NHS has tried-and-tested ways of making sure patients receive their medicines and medical products, even under difficult circumstances. If patients order extra prescriptions, or stockpile, it will put pressure on stocks, meaning that some patients may not get the medicines or medical products they need.

For people worried they have cancer

Q22 I am worried that I have symptoms of cancer. Should I still go to my GP?

It is important that you seek clinical advice if you have a worrying symptom.  GP surgeries have been advised to offer online consultations and remote triage so that people do not have to attend in person unnecessarily. Please contact your GP surgery directly if you are worried about a possible cancer symptom.

Q23 I have just been referred by my GP with suspected cancer. Should I attend my diagnostic appointment? 

Please discuss with the clinical team at the hospital. 

In the event of any disruption, hospitals will always make decisions to prioritise tests for those most in need. 

Detailed questions about the categorisation of extremely vulnerable people

Q24 Does the extremely vulnerable people category include:

Only patients undergoing active chemotherapy for lung cancer?

No. Everyone undergoing active chemotherapy is included.

Patients with blood disorders who are immunocompromised but not receiving chemotherapy?

Yes. These patients are included within ‘people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment’.

Patients having radiotherapy for metastatic lung tumours?

Yes.  These patients are included within ‘people with cancer who are undergoing radical radiotherapy for lung cancer’.

Patients having any targeted treatments (more than just antibody treatments)?  Would anti-angiogenesis targeted drugs fit into that?

Yes, all these treatments carry excess risk and therefore people receiving these treatments would be included.  These patients are included within ‘people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors’.

Transplant patients?

Yes, if they have had a transplant within the last 6 months, and if they are taking any immunosuppression. These patients are included within ‘people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs’.

Patients autologous as well as allogeneic transplants in the last 6 months? 

Yes.

All patients with rare diseases?

No, how rare the disease is not relevant. The issue is whether the disease significantly increases the risk of infection. If a patient has a rare disease and that disease significantly increases their risk of infection, they will be included in the category of extremely vulnerable people.

Q25 In previous versions of the Q&A, ‘patients who have undergone chemotherapy in the last 3 months’ were included in the list of extremely vulnerable people.  Why are they not included now?

Because of the level of social restriction now advised by the guidance for extremely vulnerable people, the criteria for cancer patients were carefully defined, based on those with greatest clinical risk.

Hospital Trusts have however been advised that where they identify other patients who they consider to be at the very highest risk, they should write to them and, in each case, inform their GP that they have done so, so their records can be updated.

If someone has finished chemotherapy within the last 3 months, is unsure of their risk and what measures they should be taking, they should speak with their hospital specialist.  If this is not possible, they should contact their GP.

 

*The following charities have developed this guidance in partnership with NHS England:
Anthony Nolan, Bloodwise, Bowel Cancer UK, The Brain Tumour Charity, Brain Tumour Research, Brains Trust, Breast Cancer Now, Cancer 52, Cancer Research UK, Jo’s Cervical Cancer Trust, Leukaemia Care, Leukaemia UK, Lymphoma Action, Macmillan Cancer Support, Myeloma UK, NCRI, Ovarian Cancer Action, Pancreatic Cancer UK, Prostate Cancer UK, Roy Castle Lung Cancer Foundation, Sarcoma UK, Target Ovarian Cancer and Teenage Cancer Trust. 

You can find out more about lymphoma and COVID-19 on the Lymphoma Action website.

25 March 2020