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.
Update: 19 July 2021
Although most legal restrictions have been lifted at step 4, and many people have been vaccinated, it is still possible to catch and spread COVID-19, even if you are fully vaccinated, and we are still in the third wave of this pandemic in the UK.
While many restrictions are lifting for the general public and some things like face coverings are moving from mandatory to recommended, we know that for people with a cancer diagnosis and family members, there are additional things to think about. It is still recommended that we limit the close contact we have with people outside our households, meet outside where possible, and wear face coverings in crowded places like on trains or buses, but not everyone is choosing to follow these general recommendations.
We understand that this could be a really worrying time for people with cancer. We’ve written this page to help you understand the latest guidance and stay safe.
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. We are now at the stage where you will be returning to ‘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.
Most restrictions in England were lifted on 19 July 2021, including social distancing, wearing face coverings in public places like shops and restaurants, and only meeting with up to five other people. However, you should still be careful to prevent infection, especially if you’re clinically extremely vulnerable.
Read the latest advice from the Government and the NHS:
Scotland is currently at level 0. This means that most restrictions have been lifted, but there are still some rules in place about social distancing and how many people you can meet with.
The remaining restrictions are due to be lifted on 9 August 2021. However, you should still be careful to prevent infection, especially if you’re clinically extremely vulnerable. Read the latest advice from the Government and the NHS:
Wales is currently at alert level 1. This means that most restrictions have been lifted, but there are still rules around social distancing with people outside your household, wearing a face covering in indoor public places, and not meeting with more than five other people indoors.
The country is due to move to level 0 on 7 August 2021. You should still be careful to prevent infection, especially if you’re clinically extremely vulnerable. Read the latest advice from the Government and the NHS:
Some coronavirus restrictions still apply in Northern Ireland, including rules about working from home, wearing face coverings in indoor public places, and not meeting with more than five other people indoors.
You should be careful to prevent infection, especially if you’re clinically extremely vulnerable. 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.
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.