Covid-19 advice for sarcoma patients
UPDATE 10 February 2021. If you are clinically extremely vulnerable (CEV) and have not received an invitation to have your #Covid19 vaccine, you can book an appointment directly through the NHS website now.
UPDATE 5 January 2021 - England: This guidance has been updated to support the clinically extremely vulnerable in protecting themselves from exposure to coronavirus (Covid-19). It replaces previous guidance on shielding that was in place during the 4-week period of national restrictions.
We will update this advice when we learn about any changes.
- England (updated 05 January)
- Northern Ireland (updated 26 December)
- Scotland (updated 4 December)
- Wales (updated 23 December)
If you have any questions, the Sarcoma UK Support Line is here to help.
Summary of Government Advice
The Government is advising everybody to:
- Stay alert
- Stay at home as much as possible
- Work from home if you can
- Limit contact with other people
- Keep your distance if you go out (2 metres apart where possible)
- Wash your hands regularly
Do not leave home if you or anyone in the household has symptoms of coronavirus.
In the first instance, please refer to wider Government guidance on:
- Staying at home if you think you have coronavirus (self-isolating)
- Staying alert and safe (social distancing)
- Staying alert: what you can and cannot do
- Staying safe outside your home
- How to protect clinically extremely vulnerable people (shielding)
Cancer services during the restoration and recovery from COVID-19
The NHS is currently moving into the next phase of its response to the COVID-19 outbreak: to restore and recover all services for patients. If you need to access care or treatment for suspected or diagnosed cancer, arrangements have been put in place to keep you safe from COVID-19.
If you have a worrying symptom, and you think it might be cancer, please contact your GP surgery straight away. GP surgeries are offering online consultations and/or remote triage so that people do not have to attend in person unnecessarily.
If you have been asked to go to hospital for further investigation or for treatment if you are diagnosed with cancer, it is important that you attend. The NHS is reorganising the way that it delivers services to keep you safe:
- COVID protected hubs have been established for cancer surgery across the country to keep patients safe. These are in COVID protected areas of a hospital or on separate hospital sites. The model is now being expanded to cover diagnostics too.
- Wider measures are also being taken by all hospitals treating COVID patients to ensure that COVID and non-COVID patients are kept separate. This may include using separate entrances for COVID and non-COVID patients, ensuring staff and patients do not move between different parts of the hospital, and making sure that, as far as possible, staff are social distancing both inside and outside clinical areas.
- The staff caring for cancer patients will be vigilant for any symptoms that they or their families are showing and are required to self-isolate in line with government guidance. Staff will be tested for the virus if they are displaying symptoms. Hospitals are also introducing testing for staff not displaying symptoms where there is testing capacity to do so.
- All patients can support NHS staff to maintain COVID-protected environments by being aware of any symptoms they or their family may be displaying, and by following the advice of the clinical teams working with them. If a patient is uncertain whether they should come into the hospital, they should discuss this with their clinical team.
For people worried they have cancer
Q1 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 do contact your GP surgery directly if you are worried about a possible cancer symptom, for example, if you have any of the following symptoms for no explainable reason:
- Bleeding that doesn’t come from an obvious injury
- A lump
- Weight loss
- Or any type of pain that won’t go away.
You can find a fuller list of the symptoms to look out for on the Be Clear on Cancer website.
Q2 I have just been referred by my GP with suspected cancer. Should I attend my diagnostic appointment?
If you have been asked to go to the hospital for further investigation, it is important that you attend. The NHS is reorganising the way that cancer diagnosis is delivered so that you can undergo diagnostic tests in places protected from the coronavirus. Because of that, you may be asked to self-isolate for seven days before any diagnostic procedures, even if you do not have coronavirus symptoms. You should discuss with the clinical team at the hospital if you have any concerns about attending.
Most people who go to their GP with symptoms do not have cancer. However, if you do have cancer, earlier diagnosis can mean more effective treatment and improved chances of survival.
If you have been asked to attend hospital, the only reason you should not go is if you have any symptoms of coronavirus. In this case, you should tell the hospital, cancel your appointment and self-isolate. The clinical team will discuss with you about when your appointment can be safely rescheduled.
People living with cancer now
Q3 Do I need to do anything differently as someone who is being treated / in remission from cancer/living with 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 updated their guidance for these people on 31 December and advises them to continue to take precautions in order to keep themselves safe:
- If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
- If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
- You should stay alert when leaving home: washing your hands regularly, maintaining social distance and avoiding gatherings of any size.
- You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
- You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).
The NHS has written to people in these groups with advice and information about what to do during this time, and where to access support.
Please visit the Government website for more information regarding shielding advice.
If you are affected and have a scheduled hospital or another 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.
Q4 What support is available to me if I have been advised to shield?
Everyone who has received a letter advising that they are clinically extremely vulnerable should register online if you need any extra support. This may include having essential groceries delivered to your home or setting up regular calls with an NHS volunteer if you are experiencing feelings of isolation.
Information on the support available to people who are shielding can be found here.
Q6 I think I should be considered as clinically 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.
Q7 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?
The NHS is currently moving into the next phase of its response to the COVID-19 outbreak: to restore and recover NHS services so that they start to operate as they did before the pandemic. This means that cancer diagnosis, treatment and care are continuing, and the NHS is working to ensure that these services return to operating as they did before.
Changes are being made to the way services are delivered to keep patients and staff safe. For example:
- COVID-protected hubs have been established across the country to ensure that cancer treatment continues. The hubs support hospitals across the NHS and independent sector to work together to maximise capacity and ensure that people receive the treatment that they need. Some patients may start to see their treatment move to a different hospital as these hubs are set up. You will remain under the care of your treating hospital and clinical specialist team and should contact them with any questions about your treatment and care.
- 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.
- Some patients may have their chemotherapy at home or have fewer radiotherapy appointments, to reduce visits to hospital while continuing with their treatment.
- For some people, it may be safer to delay surgery. Your doctor may suggest a different treatment in the meantime, such as chemotherapy or hormonal therapy.
Wider measures are also being taken by all hospitals that are treating COVID patients to ensure that COVID and non-COVID patients are kept separate. For example, there may be separate entrances for COVID and non-COVID patients, all patients admitted to hospital as an emergency will be tested for COVID, and patients going into hospital for surgery or another elective procedure will be asked to isolate for 14 days and be offered a COVID test wherever possible.
Your clinical team are best placed to talk with you about 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.
Q13 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.
Q14 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 if you think you or someone in your household 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
Q15 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.
Q16 What are the symptoms likely to be?/Will the symptoms be different because I have cancer?/What should I look out for? / What should I do?
The NHS outlines the common symptoms of coronavirus on its website.
If you are experiencing symptoms of any infection or illness, including coronavirus, you should contact your cancer team know as you would normally. You can do this as well as calling 111 for advice about coronavirus symptoms.
Q17 Can you catch this virus more than once?
It is not yet known whether reinfection is possible, although many experts think it is unlikely.
Q18 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.
Q19 Will my clinical trial continue? / Why has my trial been stopped?
You should contact your clinical team with questions about your individual treatment including any trials you are part of.
The National Institute for Health Research (NIHR) issued guidance earlier during the pandemic response which recognised that much research would need to pause, not least because many clinical research teams were asked to redeploy to help with providing patient care. The NIHR has now published a framework to support work towards the restoration of research that they fund and/or support.
People who have had cancer in the past
Q20 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 Q3 for further information.
Family/friends/carers of people living with cancer
Please refer to the wider Government advice to protect yourselves and family/friends:
- Full guidance on staying alert and safe (social distancing)
- Staying at home if you think you have coronavirus (self-isolating)
- How to protect clinically extremely vulnerable people (shielding)
Q21 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.
Q22 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.
Detailed questions about the categorisation of clinically extremely vulnerable people
Please look at the Government guidance on shielding in the first instance for more information, including the process for contacting people who are highest risk, how to access support, and what to do if you are living with someone who is shielding.
Q23 Does the clinically extremely vulnerable people category include:
- Only patients undergoing active chemotherapy for lung cancer?
No. Everyone undergoing active chemotherapy is included.
- Patients who have received chemotherapy in the past three months?
People’s immunity remains compromised for some time after finishing chemotherapy and clinical teams will be aware of this when considering their highest clinical risk patient lists.
If you have completed chemotherapy in the last 3 months, please contact your care team to discuss your specific circumstances. In the meantime, you should follow the Public Health England guidance on ‘shielding’ - in summary, stay at home and avoid face-to-face contact until at least the end of June.
- 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 with metastatic cancer in the lungs who are not currently receiving treatment?
People with metastatic cancer in the lungs could be more vulnerable and therefore at highest clinical risk from Covid-19. Vulnerability will depend on the type of cancer and treatments that you have had.
If you have not received a letter, please contact your care team to discuss your specific circumstances. In the meantime, you should follow the Public Health England guidance on ‘shielding’ – in summary, stay at home and avoid face-to-face contact until at least the end of June.
Are 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?
- 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 clinically extremely vulnerable people.