Covid-19: Advice for people with a high genetic risk of cancer

Page updated on 21st July

The current situation in the UK is worrying for many people, and we appreciate that for those at high risk of cancer, due to a genetic mutation like BRCA1, BRCA2 or Lynch syndrome, this may be an anxious time as risk-reducing surgery and other medical appointments are delayed. 

We want to make sure everyone has the information they need to stay up-to-date with any changes being made to their regular appointments (such as routine screenings) and planned surgeries, and aware of the new advice for patients to help them manage their cancer risk at this time. Here’s what you need to know and where to go for support if you’re managing your increased risk of cancer in the coronavirus outbreak.

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Are people at risk of cancer because of a genetic mutation considered to be vulnerable?

The government has set out which groups of people have a greater risk of severe illness from coronavirus because of an underlying health condition. A person with a genetic mutation like BRCA1/BRCA2 or Lynch syndrome is not considered more vulnerable than average to coronavirus, so long as they haven’t had a cancer diagnosis. You can find government guidance on protecting vulnerable people (shielding), and who this means, here

Anyone undergoing treatment for any type of cancer is advised to follow the latest advice from the NHS and One Cancer Voice, which can be found here.

What’s changed and how will this impact my current risk-reducing options?

In order to free up NHS staff to help treat coronavirus patients, many services considered to be not absolutely vital are being scaled back. This will also help non-emergency patients to avoid catching or potentially spreading the virus, by keeping them away from hospitals and other clinical settings. The non-essential services being postponed will include planned risk-reducing surgery and routine screenings.

Planned risk-reducing surgery

Although these surgeries are not things we would choose for ourselves if we weren’t at high risk of cancer, they are non-urgent and are classed as “elective”. The NHS has decided that all non-urgent elective surgeries will be postponed from mid-April at the latest. Hospitals will wind down elective services in the meantime as they think best. This means if you have a date in the coming months for a surgery, such a risk-reducing double mastectomy, this will not be going ahead. Similarly, consultations to discuss options for these surgeries will also not be happening face-to-face. These appointments will either be postponed, or continue as telephone consultations. You should hear this confirmed from your medical team. Emergency hospital admissions, cancer treatment and urgent care should continue.

Routine screenings UPDATED

There are certain screening tests that are offered to high-risk men and women to help detect cancer at the earliest possible state. These include:

  • Breast screening for women with a BRCA mutation 

  • Colonoscopies for men and women with Lynch syndrome

Whilst in England the official guidance at this time is to continue routine screenings where possible, on a local level we know that there are issues keeping these going, so you may find your appointments cancelled or postponed based on your local hospital’s capacity. NHS England is issuing centres with advice on how best to reschedule these screenings safely.  

In the rest of the UK, these screenings will not be going ahead as usual at the current time. Scotland has paused all screening activity and Northern Ireland will continue breast screening for high risk women only. 

There are some signs of change, however, as Wales recently announced that it will gradually restart its breast cancer screening programme from July, prioritising women at highest risk (please see the update below for more details). 

Colonoscopy units have been advised to prioritise urgent cases only - urgent cancer diagnosis and treatment is still a priority. Screening practitioners will triage people who have been referred on the phone for urgent referrals. In non-urgent cases, the screening services will explain to those people who have been referred on for a screening colonoscopy why their appointment has been postponed. 

The public are also being asked not to complete and not to return their bowel screening kits until the situation with coronavirus has settled. 

The NHS will be doing its best to ensure that any results of screenings that have already happened will still be processed. 

21 JULY UPDATE: Breast screening programme restarts in Wales

Public Health Wales is now gradually restarting the breast cancer screening programme in Wales (Breast Test Wales) after it was paused due to the Coronavirus pandemic. 

Breast Test Wales will resume its service in priority stages, and start by sending out screening invitations to women at higher risk in July. These are women who are usually seen more often because of a specific family history or previous findings. They plan to invite women who are due and overdue routine invitations towards the end of the summer. 

It will take some time for the service to get back up to speed. Breast Test Wales is restarting its programme gradually, with fewer appointments available than normal so they can make sure their mobile units are safe for everyone and remain Covid-free – for example, by maintaining social distancing at all times during the appointment, and giving time to clean the area between appointments. 

We understand that waiting for screening can be a frustrating and anxious time. Public Health Wales are working hard to get their programme back up and running so women can be seen quickly and referred on easily if necessary. 

In the meantime, if you’re experiencing any worrying symptoms or notice any changes in your breasts, please contact your doctor straight away. You don’t have to wait for your screening invitation – it’s better to get signs and symptoms checked out as soon as you can. 

Visit Breast Test Wales for the latest information.

What will happen to my appointment if postponed? Will my appointment be rescheduled?

Changes to appointments will undoubtedly cause anxiety to many of us. It’s important to know that the NHS is putting measures in place to make sure that, once the situation is getting back to normal, your screening appointments will be picked up again and treatment plans resumed. In the meantime, we would suggest putting a reminder in your diary for three months’ time to chase any cancelled appointments. 

How long will these things be on hold for? UPDATED

At this point it is unclear when NHS services will be back to normal. It is likely that the priority for the next few months will be directing any non-urgent resource towards treating and preventing the spread of Covid-19. 

For all parts of the UK, postponed activity will be reviewed on an ongoing basis but it is expected that these changes will last for approximately three months, with activity returning to normal as soon and as safely as possible. 

21 JULY UPDATE: Wales planning to restart screening

Public Health Wales is now planning how to restart their screening programmes after they were paused following the Coronavirus outbreak. The breast cancer screening programme (Breast Test Wales) will resume in stages using a prioritised approach. Breast Test Wales will start to send out screening invitations to women at higher risk (due to specific family history or previous findings) in July, and plan to invite women who are due and overdue routine appointments towards the end of the summer. 

Should I be worried about these delays?

It is understandable that delays to your screening or risk-reducing procedures will cause anxiety. Even the process of deciding to have a procedure, which procedure, and when is difficult and comes with challenges at the best of times. You may have been building up to and preparing for a procedure for months, and the disappointment and anxiety these cancellations have is not something many of your friends and family can understand, particularly at a time when there is a global health crisis. It may be helpful to reach out to people in a similar situation to you to share your feelings and realise you are not alone. You can find suggestions of where to find support here.

We asked Adam Rosenthal, Consultant Gynaecologist at University College London Hospital for his thoughts on delays to risk reducing surgery: "We understand that women who were due risk-reducing gynae surgery may be anxious about their operations being postponed and concerned that they might develop cancer before their operation has taken place. They should be reassured that even if they fall into the very highest risk group, the chance of them developing cancer in the next 6 months is well under 1 in 100".

We often concentrate on lifetime cancer risk figures during our decision-making relating to genetic testing and surgery, but you may find it helpful in the current situation to re-examine what your current risk of cancer is right now. Some people find this data help calm their anxiety about waiting for surgery or screening, some people will not find this helpful so please be mindful of this when you decide whether or not to look at this in more depth. 

The table below shows figures from a study by Antoniou et al (2003). You can use this to look at the average risk of a woman with either a BRCA1 or BRCA2 mutation developing either breast or ovarian cancer is per year, based on their current age. As an example, our Cancer Prevention Officer, Jo Stanford, who carries a BRCA1 mutation, has been planning her risk reducing surgery to have her ovaries and fallopian tubes removed, and this is now on hold due to the coronavirus. Jo said: “When I look at this table, I look at my age band on the left hand side (35-39 years) and under the mutation I carry (BRCA1) I can see that my risk of getting ovarian cancer this year is 0.28%. I know this is only an average but it helps to reassure me that although I am classed as high risk, my current risk is actually very low while I wait a few extra months for my surgery. Looking at this data helps me manage my anxiety around these delays.” 

High genetic risk advice 1

If you have Lynch syndrome, you can take a look at the Prospective Lynch Syndrome Database. Here, you can select your specific mutation and current age and see the risk of developing each type of cancer by five and 10 year increments.

What if I experience worrying symptoms relating to cancer?

The clear message from the NHS is that if you experience any worrying symptoms, you should seek advice. You should follow the same course of action as normal, which is to speak to your GP, as the services to diagnose and treat any serious issues are still in place. Your GP will still be able to discuss your symptoms with you and make a referral to the relevant team should they feel this is needed. GPs are being asked to increase their use of video and phone consultations so how your appointment takes place will depend on your local practice. Please don’t delay raising these symptoms with your doctor because you think they are not important - they are, and you are justified in seeking medical attention. 

Our advice is to continue to be aware of any changes in your body, and particularly the signs and symptoms of the types of cancer you are at greater risk of. 

Be symptom aware

For details on the signs and symptoms of these cancers, see here:

Ovarian cancer

There is no national screening service for ovarian cancer so it’s even more important for high-risk women to know what symptoms to look out for. The four main symptoms of ovarian cancer are: 

  • Persistent stomach pain

  • Persistent bloating

  • Difficulty eating/feeling full more quickly

  • Needing to wee more frequently

If you are concerned you are are experiencing some of these symptoms, you can use our symptoms diary to keep track of them which will help any future discussions with your GP.

To find out more about ovarian cancer, click here.

Ovarian cancer symptoms

Breast cancer

A woman with a BRCA1 or BRCA2 mutation would ordinarily be eligible for regular breast MRI from the age of 30 and mammograms from 40. These will not be going ahead (apart from in Northern Ireland). 

It is always important for men and women to check their breasts and at this time we suggest reminding yourself of the advice on how to do so. Why not sign up to get a regular boob check reminder from Coppafeel?

Bowel cancer

Men and women with Lynch syndrome are usually offered screenings for bowel and stomach cancers, which will be on hold for the foreseeable future. 

People with Lynch syndrome will be offered a colonoscopy every 1-2 years from age 25. Make sure you’re aware of the symptoms of bowel cancer.

High genetic risk advice 2

Stomach cancer

Men and women with Lynch syndrome ordinarily may be able to access a test to check for a bacteria called H. Pylori which can lead to stomach cancer. 

Some of the most obvious signs of stomach cancer to be aware of include:

  • losing weight without trying to
  • feeling or being sick
  • having problems swallowing (dysphagia)
  • a lump at the top of your tummy

Others might be harder to spot, such as:

  • heartburn or acid reflux
  • loss of appetite
  • symptoms of indigestion, such as burping a lot
  • feeling full very quickly when eating
  • pain at the top of your tummy
  • feeling tired or having no energy

If you have any questions about this topic, please contact