Coronavirus and cancer – guidance for young people aged 19+
Getting your head around cancer is difficult. Add to that the challenges of coronavirus and suddenly you’ve got a whole lot more guidance to get to grips with. We’ve reviewed the Government advice to help you understand what it means for young adults with cancer.
Last reviewed: 22 December 2021
(Updated information is highlighted in red)
The rapid increase in cases of the new Omicron variant has led to the UK Covid Alert Level being increased from Level 3 to Level 4 as of 12 December 2021. The latest data suggests Omicron is extremely transmissible and will become the dominant variant by mid-December. We understand that this will be causing concern for families with children and young people with cancer.
Cancer and avoiding infection
Before anyone had ever heard of COVID-19 or terms like ‘shielding’ or ‘extremely clinically vulnerable’, people with cancer whose immune systems were affected (lowered) by cancer treatments always had to take steps to reduce their risks of catching bacterial and viral infections. It continues to be really important to maintain your ‘normal’ cancer care and infection prevention, which is a higher level of infection prevention and awareness than the general public may have.
Following these steps will help you avoid infection:
- Regular and thorough handwashing
- Limiting contact with anyone who has obvious signs of infections (such as coughs, colds, diarrhoea and vomiting, fevers, skin infections, chicken pox, measles, or unwell with unknown cause)
- Maintaining good standards of general health through hygiene, eating a healthy diet, keeping well hydrated and getting enough sleep and exercise
- Contacting your cancer team for advice if you feel unwell especially if you have a fever
- Avoiding very crowded places and close contact with non-family members when your blood counts are extremely low (defined by your local cancer team)
- Considering how to minimise infection risks with sexual partners (ask your clinical team for advice).
And because of the ongoing presence of coronavirus:
- Follow government recommendations on wearing face coverings, meeting outdoors when possible or in well ventilated indoor spaces, and follow guidance on vaccination and testing
- Your local hospitals and healthcare providers may continue to have local rules on COVID-19 testing, social distancing, visiting and face coverings. See our #Hand2Hold campaign for information on your rights to visitors
- You may want to consider asking visitors to your home to wear face coverings or to take a lateral flow test before visiting
- As a general guide, most people take about 6-12 months to recover a more normal immune system after cancer treatment ends and about 12-24 months after a bone marrow transplant. However, there are individual and treatment related variations, and your cancer team will give you guidance specific to you, including how long you need to take extra precautions for.
As a general guide, most people take about 6-12 months to recover a more normal immune system after cancer treatment ends, and about 12-24 months after a bone marrow transplant. However, there are individual and treatment related variations, and your cancer team will give you guidance specific to you, including how long you need to take extra precautions for.
England has moved to plan B in responses to the risks of the Omicron variant.
- Get vaccinated and get your booster dose (we have additional information below for young adults with cancer about vaccines and boosters).
- Wear a face covering in most indoor public places and on public transport.
- Work from home, if you can.
- Let fresh air in if you meet indoors. Meeting outdoors is safer.
- Get tested and self-isolate if required.
Read the latest advice from the Government and the NHS:
New restrictions will be introduced in Scotland after 25 December.
From 26 December:
- capacity limits will be in place for larger events (excluding places of worship). This means a maximum of:
- 100 people at indoor standing events
- 200 people at indoor seated events
- 500 people at outdoor events (whether seated or standing).
- adult non-professional contact sports are not allowed in indoor spaces.
From 27 December:
- you must keep one metre physical distance between groups of up to three households in all indoor and outdoor hospitality and leisure settings like bars, restaurants, theatres, music venues, cinemas and gyms.
- table service will be needed where alcohol is served for consumption on the premises.
- night clubs must close – they have the option of staying open without dancing but table service and 1 metre physical distancing between groups must be in place.
You should also:
- stay home as much as possible to limit the number of contacts you have – if you meet others, gather in small groups of no more than three households.
- avoid crowded places – shop at quieter times where possible and follow the enhanced precautions in shops and hospitality venues, which may include controlled entrances and exits to limit customer numbers, and signs and floor markings to help people keep a safe distance from others.
- work from home if you can.
- take a lateral flow test before you visit someone in hospital or a care home or to accompany someone to medical appointments.
Read the latest advice from the Government and the NHS:
Wales is currently at alert level 0. From 26 December 2021, new restrictions will be introduced. This will mean:
- No spectators allowed at any indoor, outdoor, professional or community sports event.
- 2 metre social distancing will be required in offices and all public premises.
- A maximum of six people can meet in public premises.
- Licenced premises will need to take additional reasonable measures to protect customers and staff.
- A maximum of 30 people can attend indoor events and a maximum of 50 people at outdoor events.
- People attending weddings or civil partnership receptions or wakes should take a lateral flow test before attending.
- Nightclubs will close.
Read the latest advice from the Government:
Following an increase in Covid cases, additional restrictions are being introduced in Northern Ireland from 26 December.
From 26 December
From 6am on 26 December the following legal requirements will apply:
- Nightclubs will be required to close and dancing will be prohibited in hospitality settings. This requirement does not apply to weddings and civil partnerships.
- Indoor standing events will not be permitted.
From 27 December
From 6am on 27 December the following legal requirements will apply:
- A maximum of six people will be permitted to be seated together in hospitality settings. More than six will be permitted if they all belong to a single household, as long as it is not more than 10. Children aged 12 and under are not counted in the total. This requirement does not apply to weddings and civil partnerships.
- Table service will be required. Apart from entering and leaving the premises, the only movement allowed indoors is to access toilet facilities, to select food from a buffet or to pay.
- Retail businesses must take reasonable measures to reduce the risk of COVID-19 transmission. Retail businesses vary significantly in terms of size, layout and capacity, however consideration must be given to social distancing, one-way systems, screens, barriers and capacity management.
- Two metre social distancing will be required in office settings.
- There will be a statutory duty on businesses to take reasonable measures to promote compliance with face coverings requirements, with a grace period until 7 January before enforcement is implemented.
- The exemption of wearing a face covering where it causes severe stress will be removed and the onus of proving an exemption on medical grounds will be on the individual, with a grace period until 7 January before enforcement is implemented.
You are also strongly advised to:
- limit the number of contacts you have – if you meet others, gather in small groups of no more than three households;
- take a lateral flow test before you meet others – this includes before attending an indoor or outdoor event or gathering;
- wear a face covering; and
- avoid crowded places – shop at quieter times where possible and follow the enhanced precautions in shops and hospitality venues, which may include controlled entrances and exits to limit customer numbers, signs and floor markings to help people keep a safe distance from others.
Read the latest advice from the Government and the NHS:
Advice for young people with cancer
With restrictions lifting across the UK, it can be difficult to know if you should be taking extra precautions. If you’re unsure, make sure you talk to your clinical team – they know your individual circumstances and will advise on what is right for you.
Whether you’re in the clinically extremely vulnerable group or not, if you’re undergoing cancer treatment you are still likely to be advised to take extra precautions to protect you from all types of infections, not just COVID-19. If your immune system is severely affected (lowered) by your cancer treatment your local clinical team may still advise you to avoid crowds, not attend university, college or work, and distance yourself if household members are unwell with things like flu, diarrhoea and vomiting, chickenpox, shingles or cold sores, and certainly if they have any COVID-19 symptoms.
What about the third primary vaccine dose for people over 12 years old?
The JCVI recommends that a third Pfizer BioNTech vaccine dose be offered to individuals aged 12 years and over who had severe immunosuppression at the time of their first or second COVID-19 doses, including those with leukaemia.
These people may not mount a full response to vaccination and therefore may be less protected than the wider population. The third primary dose is an extra ‘top-up’ dose for those who may not have generated a full immune response to the first 2 doses. In contrast, a booster dose is a later dose to extend the duration of protection from the primary course of vaccinations.
The decision on the timing of the third dose should be made by your treating team. As a general guide, the third dose should usually be at least 8 weeks after the second dose but with flexibility to adjust the timing so that, where possible, immunosuppression is at a minimum when the vaccine dose is given.
What about booster vaccine doses for young people over 16 years old?
Those aged 16 years and above will also require a booster dose to extend protection from their primary course. Following the recognition of the Omicron variant in South Africa, JCVI has now advised that a reinforcing dose should be offered from three months after the third dose. Those who have not yet received their third dose may be given their third dose now to avoid further delay. A further booster dose can be given in three months, in line with the clinical advice on optimal timing.
What if I’m undergoing treatment for cancer and have a healthy sibling between 12 and 17 years old? Should the sibling receive the vaccine?
The recommendation is now that all healthy young people aged over 12 years can receive their first dose of COVID-19 vaccine. The JCVI recommends that children and young people aged 12 years and over who are household contacts of people who are immunosuppressed should be offered two doses of Pfizer-BNT162b2 vaccine eight weeks apart.
This is to indirectly protect their immunosuppressed household contacts, who are at higher risk of serious disease from COVID-19 and may not generate a full immune response to vaccination. Healthy siblings of children or young people undergoing treatment for cancer are now eligible to receive the vaccine.
Should adult household contacts of immunosuppressed children and young people receive a booster vaccine?
Yes. All adult household contacts of immunosuppressed individuals should receive a booster vaccine as soon as possible. Following the emergence of the Omicron variant, JCVI have now advised accelerating the booster deployment in order of age and risk status. Reinforcing doses should not be given within three months of completion of the primary course.
Should people 12 years and over who are immunosuppressed receive new treatments (monoclonal antibodies) for COVID-19 infection?
Casirivimab and imdevimab is a neutralising monoclonal antibody (nMAB) combination that binds specifically to two different sites on the spike protein of the SARS-CoV-2 virus particle, blocking its entry into the host cell and therefore inhibiting its replication. This treatment has been recommended following the results of the adult RECOVERY trial that showed this nMAB combination reduced the relative risk of death in hospitalised patients with COVID-19 who had not mounted an antibody response of their own to the virus at the time of treatment.
This treatment has been approved for use for immunocompromised patients over 12 years old who have been hospitalised for the management of acute symptoms of COVID-19 and do not have their own antibodies against SARS-CoV-2.
As evidence to date has shown that most young people with cancer tend to have a mild course of COVID-19, your treating team will decide whether this nMAB treatment is likely to benefit you.
The casirivimab and imdevimab nMAB combination is not intended to be used as a substitute for vaccination against COVID-19.
Most young people who catch coronavirus are not getting severe forms of the illness, but a few young adults with certain cancers are more at risk of getting a more severe illness if they catch it. This is also the case if you’re having, or have had, certain cancer treatments. The government calls this being clinically extremely vulnerable. This applies to you if you’ve:
- Had a solid organ transplant – such as kidney, liver, pancreas, heart or lung
- People with some types of cancer who:
- Are on active chemotherapy
- Are on radical radiotherapy for lung cancer
- Are at any stage of treatment for a blood or bone marrow cancer such as leukaemia, lymphoma or myeloma
- Are on immunotherapy or other continuing antibody treatments for cancer
- Are having other targeted cancer treatments which can affect the immune system such as protein kinase inhibitors or PARP inhibitors
- Have had a bone marrow or stem cell transplant in the last six months
- Are on medication that ‘significantly’ compromises your immune system – most cancer treatment causes some level of lowered immune function so your local cancer team will help you understand if your treatment is at this level of significance, and clarify if you are in the clinically extremely vulnerable group.
- Have severe long-term lung disease, for example cystic fibrosis or severe asthma
- Have a rare disease that increases your chance of infection
- Have problems with your spleen or have had your spleen removed
- Are an adult with Down’s Syndrome
- Are an adult with chronic kidney disease or having dialysis
- Are pregnant and have significant heart disease.
In addition, the Government adds that if a clinician or GP deems you to be in the highest risk group because in their clinical judgement and knowing your personal circumstances they feel you are at higher risk, they can add you to the clinically extremely vulnerable list, even if none of the above criteria apply. For example, some people are just unfortunate and have a pattern of reacting more severely to things, or always get more side effects than others in similar circumstances.
The Government’s support and maintenance of a list has now closed, but people who need additional support can still register with their local council for extra support.
People who are clinically extremely vulnerable are no longer advised to shield, but they should still be careful to prevent infection.
Your local cancer team is responsible for letting you know how at risk you are of becoming seriously ill if you get COVID-19. They should tell you if your risk level changes. Get in touch with them if you’re not sure.
You should follow the coronavirus guidance for the general population in addition to the normal infection prevention measures related to your cancer treatment, and adhere to any temporary national lockdown measures.
Letters were also sent out to people who had other conditions that put them in the ‘extremely vulnerable’ category as well. If you have one of these conditions you may have had a letter for that. If you are at all unsure, speak with your clinical team so they can advise you.
People who are considered clinically extremely vulnerable are no longer advised to shield, but should still be careful to avoid infection. Your clinical team can advise you on measures you can take.
If you have a hospital appointment, it’s important that you attend unless your clinical team advise you not to, or you have symptoms of coronavirus. If you’re not sure whether to attend your appointment, contact your clinical team.
Cancer treatment is continuing, but some changes are being made to the way services are delivered. This is to keep patients and hospital staff safe.
Hubs have been set up across the country to support hospitals to make sure that people receive the treatment that they need. You will still be under the care of your main hospital if your treatment moves to one of these hubs. You should contact your usual clinical team if you have any questions about your treatment.
Most hospitals have started to use telephone consultations to help people avoid long waits in clinics and for treatment. You may get a phone call to arrange your treatment this way.
Some patients may have their chemotherapy at home. In some areas mobile units have been set up to deliver chemotherapy, so you may be asked to go to one of these. If you’re on radiotherapy you may have fewer appointments. This cuts down the number of visits to hospital but allows treatment to continue.
Speak to your clinical team if you have any concerns or questions about your treatment.
There are currently no medicine shortages as a result of COVID-19. This means your treatment centre doesn’t have any problems getting the cancer drugs needed to treat you.
If you have difficulty collecting medicines, you can ask your social care worker to refer you to the NHS Volunteer Responders scheme to have medicines collected.
A national group called Healthwatch working with National Voices, an NHS service user advisory group, have completed some research on digital outpatient appointments during the coronavirus lockdown. They produced a report and a good practice guide for patients and professionals. This advice is from their report:
- Ask for a timeslot for when your remote consultation will take place
- Let your health care provider know how you prefer to talk – by phone, video or in person
- Find somewhere quiet and confidential and, if this isn’t possible or is tricky, make this clear when you are making your appointment
- Start with a phone call if you’re not confident with video technology
- Ask for help if you need it and, if possible, do a practice run with a friend
- Take some time to prepare in advance- consider what you want to say and key questions you would like to ask
- Ask your healthcare provider to summarise the next steps at the end of the appointment
- Remote consultations can be useful for routine appointments or ongoing care with a health care practitioner
- Not all appointments are suitable for remote consultations- if you would like to see someone in person please say so.
All hospitals are taking extra steps to ensure patients, staff and the public are protected from coronavirus and other infections that could be picked up in a hospital environment. You will see hand washing, hand sanitisers, surgical masks, gloves and sometimes gowns and visors being used by hospital staff. More space will be allocated between patients and a visitor to manage social distancing as far as is possible in hospital. You may also be screened for COVID-19 when you arrive.
Cancer care teams know that your treatments make you vulnerable to infection and have been managing prevention techniques for decades before any of us had heard of coronavirus, so you can expect your cancer team to know how to keep you safe. If you do see someone not following government guidance, tell a healthcare professional you trust, or if you feel confident enough, tell the person you noticed they forgot something – we’re all human and in a busy day they may appreciate the reminder.
Travel to appointments and treatment by car if you can, either driving yourself, or with someone who lives in the same house as you. If driving isn’t an option, use the form of transport that brings you into the least contact with other people as possible.
If you think someone in your household might have coronavirus, you should follow the government guidance. Let your clinical team know before you attend your appointment.
If you have symptoms of any infection or illness, including coronavirus, you should contact your cancer team as you would normally do.
You should do this as well as following the Government’s advice about testing and self-isolating.
This really depends on the type of cancer and the treatment you had. Most people make a full recovery after cancer treatment and their immune system either recovers fully or isn’t affected. Unless you fall into the clinically extremely vulnerable category, you’re not at more risk of serious illness if you get COVID-19.