During the coronavirus pandemic, doctors have been making changes to how people have cancer treatments. This might include having treatment as tablets instead of a drip. Many people have also been having treatment in a different centre and, for some, it has been delayed.
You might be worried about how these changes will affect your cancer treatment, care and support. Cancer services are an absolute priority for the NHS. COVID-19 infections and hospitalisations put more pressures on hospitals, but staff are working hard to ensure that cancer diagnosis and treatment can continue safely.
If your treatment is less urgent, it may be rescheduled, but it will go ahead as soon as it is possible and safe to do so. If you have hospital appointments scheduled, continue to attend these.
How have cancer services changed?
Cancer specialists have been working together to coordinate cancer services. They have set up specialist ‘cancer hubs' across the country.
These hubs coordinate cancer services in the different hospitals in that area. The hubs support both NHS hospitals and private hospitals to work together to help hospitals deliver as much cancer treatment as possible. This might mean you go to a different hospital for part of your treatment such as your surgery. But your current cancer specialist will remain in charge of your overall care and you should contact them or your specialist nurse if you have any questions about your care.
The National Institute for Health and Care Excellence (NICE) has issued guidelines for cancer specialists. These aim to keep people with cancer as safe as possible and make the best use of NHS resources and protect staff. The guidelines are also there to help doctors make treatment decisions and prioritise some treatments over others, should they need to.
How do doctors decide about my treatment plan?
Treatment risks and benefits
When you start cancer treatment, your doctors weigh up the risks and benefits of treatment and discuss these with you. This will include how coronavirus affects the treatments you should have.
Treatment risks relating to coronavirus include:
- how your cancer treatments affect your immune system - you're more at risk of becoming seriously ill from COVID-19 if your immune system is weak after treatment
- other medical conditions, male sex, ethnicity, cancer symptoms and vaccination status may affect your risk of becoming severely ill with COVID-19
- exposure to the virus during hospital visits – your team might look at how you have your treatment to reduce your hospital visits
Treatment benefits usually refer to the aim of your treatment.
Your treatment might aim to:
- cure your cancer
- lower the chance of your cancer coming back
- help you live longer with your cancer
- control symptoms so you are more comfortable
Your doctors will carefully weigh up the treatment benefit with the risks of treatment. They will discuss this with you.
Your doctors will also consider how urgent is your treatment.
Although doctors usually treat cancer urgently, some treatments are more urgent than others. In some emergency situations, delaying treatment could be life threatening or result in long term damage. But in other situations, delaying treatment might not make a big difference to the outcome.
Is it safe to go to the hospital?
Healthcare teams are taking care to reduce any risk to make it as safe as possible. They are following strict infection control measures to keep you and themselves safe.
They might reduce the number of times you need to go to hospital and lower the amount of time you spend in the hospital. Ways they are doing this include:
- asking you to come to your appointments on your own to lower the risk of spreading the infection
- texting you when they're ready to see you so you don't have to wait around inside the hospital
- offering you appointments over the telephone
- delivering medicines to your home, or finding other places for you to pick up medicines
Having cancer treatment during the coronavirus pandemic
Doctors have been trying to continue cancer treatments wherever possible.
Some cancer drugs affect the immune system more than others. Your doctor can tell you whether your treatment increases your risk of complications from COVID-19.
They might plan your cancer drug treatment so you have fewer visits to the hospital. This will lower your risk of being exposed to and catching the coronavirus.
They might look at how you have your treatment. For example, you can have some chemotherapy drugs as a tablet or injection under the skin. You might be able to have this at home instead of coming to the hospital.
For some targeted cancer drugs or immunotherapies, you might be able to have a longer break between treatment cycles.
In parts of England, some people having chemotherapy might have treatment at home or in 'chemo buses'. The buses can be either directly outside the hospital or more local to where you live.
This is so you don't need to go into hospital to have treatment. Having chemotherapy this way will help to reduce the chances of you being exposed to coronavirus. Your medical team will tell you where you will have treatment.
What do I do if I am on treatment and develop symptoms of COVID-19?
Some of the symptoms of coronavirus can be similar to the side effects of cancer treatment. This can make it hard to know what is causing them. The symptoms of coronavirus include:
- a high temperature of above 37.8C and, or
- a new continuous cough - this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
- a loss of, or change in, your normal sense of taste or smell (you can't smell or taste anything, or things smell or taste different to normal)
If you have symptoms of coronavirus or you feel unwell, and you are having cancer treatment or cancer that affects your immune system, you should first contact:
- your chemotherapy helpline
- the Acute Oncology Service at your hospital
Your healthcare team will assess you over the phone and might ask you to stay at home.
Your doctor will weigh up the benefit and urgency of your treatment against your risk of being exposed to the coronavirus at your hospital visits. But for most people radiotherapy treatment has been continuing as normal.
There are guidelines to help doctors decide about your treatment plan. They will consider factors such as:
- your type and stage of cancer, and other factors such as how fast your cancer is growing
- what other treatment you've had so far, and what alternative treatment options there are
- what is the aim of your treatment
To lower the risk of spreading the coronavirus, your team will ask you to come to your appointments on your own. They will also try to reduce the amount of time you spend in the radiotherapy department. For example, they might text you when they're ready to start the treatment so you don't have to wait around inside the hospital.
Stereotactic radiotherapy (SABR)
NHS England has been bringing forward the use of stereotactic radiotherapy (SABR) due to the coronavirus. SABR is a treatment for some cancers. This type of radiotherapy uses fewer doses than conventional radiotherapy.
So, your visits to the hospital will be less. You might have about 5 visits instead of 20 to 30. Fewer visits will help to reduce the chances of you being exposed to coronavirus. Talk to your medical team to hear if you can have this treatment and whether it is available at your hospital.
Can I continue radiotherapy if I have COVID-19?
You might be able to continue with your radiotherapy treatment even if you have confirmed or suspected COVID-19. This will depend on your situation. The radiotherapy team will follow strict guidance on infection control to protect themselves and other radiotherapy patients.
Cancer teams have been trying to continue with cancer surgery wherever possible during the coronavirus pandemic.
They will discuss with you the risks of catching COVID-19 during your hospital stay. For example, having a big operation increases your risk of getting an infection, including coronavirus. With some operations, this risk is greater than the benefit of having surgery. This might mean that your surgery is delayed or that they suggest another type of treatment.
They will contact you to talk about how your risks may affect your surgery.
The specialist surgical associations in the UK have developed a guide for the prioritisation of cancer surgery during the COVID-19 pandemic. They are experts in treating your cancer. The guide splits patients into 4 priority levels. Your team will consider how risky it would be in your situation to delay surgery and then decide your surgery’s priority level. The priority levels are:
- Priority 1a - you need emergency surgery within 24 hours because you have life threatening complications caused by your cancer.
- Priority 1b - you need urgent surgery within 72 hours because your cancer is about to cause life threatening complications.
- Priority 2 - your cancer is at a stage and/or of a type where you can have surgery within 4 weeks without affecting your overall outlook (prognosis).
- Priority 3 - your cancer is at a stage and/or of a type where you can have surgery in up to 12 weeks without affecting your overall outlook (prognosis).
- Priority 4 - your cancer is at a stage and/or of a type where you can have surgery after 12 weeks without affecting your overall outlook (prognosis). Having to wait 12 weeks or more for surgery might sound worrying, but your cancer multidisciplinary team (MDT) will review you regularly. They will move you to a higher priority if the results from tests or examinations show it is necessary.
Where will I have my surgery?
Cancer specialists and hospitals have been working together to coordinate cancer treatments and minimise disruptions to cancer treatment. You might have your surgery at your local treatment centre. But you might go to a different hospital for your surgery.
This might be because in your area certain hospitals have been identified to treat people with COVID-19 while other hospitals treat people without COVID-19. This is to minimise the risk of spreading the infection
If you have surgery at a different centre, your current cancer specialist will remain in charge of your overall care. You should contact them or your specialist nurse if you have any questions about your care.
After a stem cell transplant, you're more at risk of becoming seriously ill from COVID-19.
You have a stem cell transplant after very high doses of chemotherapy. The chemotherapy stops your bone marrow from making enough white blood cells. White blood cells are part of your immune system which protects the body against illness and infection caused by viruses like coronavirus.
If you're due to have a stem cell transplant
Your doctors will look at your individual situation to decide whether your transplant should go ahead as planned. They will carefully weigh up the risks of delaying your transplant against the risks of becoming seriously ill from COVID-19. They will also consider all of your treatment options.
Earlier during the pandemic doctors delayed transplants for some people, but in most places, they are going ahead.
Before your transplant
If you are going to have a stem cell transplant, your doctors will:
- tell you how to lower your risk of getting COVID-19 infection and other types of infections for the two weeks before your transplant
- test you for COVID-19 and other airway infections - 7 days before and on the day of your admission to hospital
Your medical team might delay your stem cell treatment for 2 weeks if you have been in touch with someone who has coronavirus in the week before your admission.
If your test comes back as positive, they will delay your transplant. You need to have 3 negative tests before you can have the transplant. Each test needs to be a week apart.
If you have moderate or severe symptoms of COVID-19 your transplant might be delayed for at least 3 months.
You will also need to have some of the tests you have already had. This includes a chest x-ray, heart test (ECG) and lung function tests.
How soon you can have your transplant depends on your cancer.
If you've had a stem cell transplant
While you’re in hospital for a stem cell transplant, the healthcare team looks after you in protective isolation. They follow strict guidance on infection control to try and protect you from infection.
After a stem cell transplant, your medical team might ask you to follow the government shielding advice for extremely vulnerable people if you:
- had a transplant using your own stem cells (an autologous stem cell transplant) in the last year
- had a transplant using donor stem cells (an allogeneic transplant) in the last 2 years
- are on drugs that suppress your immune system (immunosuppressants) after a transplant
- have graft versus host disease (GVHD) or an ongoing weak immune system after a transplant
Contact your health care team if you are uncertain or you're concerned that you might be in the extremely vulnerable group.
Your cancer treatment might be part of a clinical trial. Earlier during the coronavirus outbreak, some clinical trials for cancer patients stopped recruiting new patients. This was so that time and money could be redirected towards:
- looking after those affected by the virus
- research into the prevention and treatment of coronavirus
More recently most clinical trials have started again. Your healthcare team will continue to support and monitor you if you are part of a clinical trial. Talk to your team if you have questions or concerns about a trial you are taking part in.
Do I need to isolate or have a test for coronavirus before or during my treatment?
Your hospital will have specific guidelines in place to protect you and others from getting or spreading the coronavirus during treatment. How you need to prepare for tests or treatment may vary between hospitals.
Before tests or scans
Follow the advice from your hospital. Some hospitals might ask you to isolate before your appointment.
Follow the advice from your hospital about what you need to do before you have surgery. The team caring for you might ask you to:
- isolate for 14 days before a planned hospital admission - including day surgery or any other procedure under sedation or under a general anaesthetic
- isolate for 14 days after surgery to help reduce the risk of complications
- have a coronavirus (COVID-19) swab test a few days before a planned hospital admission or on admission if it's an emergency
At most hospitals, you have a COVID-19 swab test 48 to 72 hours (up to 3 days) before going for your treatment in the chemotherapy unit.
This means you might have the swab test on the same day that you visit the hospital for blood tests and your doctor's clinic appointment. If you have treatment weekly or more often, some hospitals will ask you to have the swab test on the day of treatment.
Check with your team about when you'll have the test as there are some differences between hospitals.
Follow the advice from your hospital. Your medical team will assess you before your treatment to see if you might have COVID-19 or have been exposed to COVID-19. They will also do a COVID-19 swab test. Your team might ask you to isolate if you are having chemoradiotherapy or treatment for lung cancer.
COVID-19 swab test
To have the COVID-19 swab test your nurse takes a sample from the inside of your nose and the back of your throat. They use a long cotton bud to take the sample. Or the sample might be saliva. Depending on which test your hospital uses, it can take from 90 minutes to a few days to get a result.
Some hospitals might ask you to do a home COVID-test a few days before attending for a procedure. They will send you a home test kit with instructions on what to do.
Coping with waiting to get a diagnosis or to start treatment
There have been several reports in the media about delays in getting a diagnosis of cancer or starting treatment. In most cases, delays happen because the NHS is trying to catch up with the changes caused by coronavirus. But hearing this is bound to add to your anxiety around your diagnosis and needing treatment.
Apart from feeling anxious, it is understandable that you might also feel let down or disappointed by the health service. All this can add to your anger of having to deal with cancer. There is no right or wrong way to feel during this time.
It might help to remember that NHS staff are working around the clock to clear the backlog and teams are working hard to make sure you get the best treatment as soon and as safely as possible. This includes setting up COVID-19 protected areas. Cancer Research UK is also continuing to campaign the government and NHS on cancer services.
What you can do
To help support yourself and to feel more in control of your health during this period of waiting, try to focus on three aspects of your health:
- eat a balanced diet
- stay physically active
- look after your mental wellbeing
This advice might feel like the last thing you’d like to do if you’re feeling very anxious, but it can help you to feel more in control of your physical and mental health. By feeling more in control, you can cope better during treatment and recover better.
Getting the most out of your telephone appointment
You're likely to have some telephone appointments with your specialist doctor, rather than seeing them in the hospital.
When you speak to the doctor, it can be difficult to remember everything you want to say. And it can be difficult to remember everything they say, especially on the phone.
There are things that you can do to make it easier:
Before your appointment
- Let your medical team know if you prefer a telephone or video call, or would like a face to face appointment.
- Let your team know in advance if you're hard of hearing or need an interpreter.
- Ask for a timeslot when your doctor will call you.
- Find a quiet part of the house to take the call.
- Start with a phone call if you’re not confident with a video call.
- Ask for help if you need it and, if possible, practise a video call with a friend.
- Write down a list of questions before the call, and think about what you want to find out from the doctor (see ‘Questions you might want to ask your GP’)
- Ask someone to listen in for support.
During your appointment
- Do make sure you are close to your phone or computer around the time of your appointment as people often miss telephone calls from their doctor. Your doctor's call might not always be at the exact time of your appointment due to delays in their clinic.
- If you have someone listening in for support, put your phone on loudspeaker to do this. They could also ask questions and help you remember what the doctor says.
- Tell your doctor if you are worried about anything in particular.
- Ask the doctor who you can call if you have any further questions after your phone appointment.
- Ask them to explain anything you don't understand.
- Ask your doctor to summarise what the next steps are.
What to ask your doctor
You will probably have some questions about your cancer treatment and COVID-19. Here are some suggestions for questions you might want to ask your doctor:
- What are the risks to me if I catch COVID-19?
- How does my cancer treatment affect my risk of becoming seriously ill from COVID-19?
- Are there any changes you can make to my treatment to lower the risk of getting COVID-19 or becoming seriously ill if I do get it?
- What should I do if I, or someone I live with, gets COVID-19?
- Will my treatment continue if I have confirmed or suspected COVID-19?
- My treatment has been delayed - how long will this be for, and when can I expect to have the treatment?
- Will a delay to my treatment affect how well my treatment will work (the prognosis)?
- My treatment is now at a different hospital - will you still treat me or will I see another doctor?
- Can you explain the reasons for making changes to my treatment plan?
Travelling to hospital
Whether you're shielding or not, there are some things you can do to lower your risk of catching coronavirus:
- Try to avoid public transport and travel to hospital by car where possible
- Ask a friend or family member to drive you if you can't drive. They won't be able to go into the appointment with you and will need to wait in the car for you.
- Try to practise social distancing with the person driving you if they are not part of your 'support bubble' or extended household group. Sit as far away as possible from them.
- Wear a face covering.
- Avoid touching your mouth, nose and eyes.
- Wash your hands where possible or use a hand sanitiser gel before, during and after the journey.
Your hospital might be able to provide hospital transport if you are unable to travel by yourself or find someone to drive you. The transport service will have safety and cleaning procedures in place to try to protect you from coronavirus. Talk to your medical team or contact the transport service at your hospital for more information.
You can read more on what to expect when visiting the hospital for an appointment.