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

The government has set out which groups of people have a greater risk of serious illness from coronavirus, because of their age or an underlying health condition for example. 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 national guidance for clinically extremely vulnerable people, which you can find on our regional Covid information pages:

• Advice for patients in England
• Advice for patients in Wales
• Advice for patients in Scotland 

Many services have had to change and adapt over the course of the pandemic, in order to free up NHS staff to help treat coronavirus patients and reduce risk to patients. Those considered to be not absolutely vital were scaled back, and consultations have been conducted over a phone or video call where possible. This helps non-emergency patients to avoid catching or potentially spreading the virus, by keeping them away from hospitals and other clinical settings. Some of the services that were postponed have included planned risk-reducing surgery and routing screenings. 

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”. At the beginning of the pandemic, the NHS decided to postpone all non-urgent elective surgeries, which includes surgeries such as risk-reducing mastectomy (removing your breasts) and salpingo-oophorectomy (having your fallopian tubes and ovaries removed). Gradually as the situation eased, these surgeries started to go ahead, with fewer operations happening each day due to increased cleaning and sterilisation efforts between patients. 

The NHS have been clear that the number of people waiting for elective surgeries has increased due to the pressures of the pandemic. The impact of this will vary from region to region, but it is likely that lists have had to be amended, and your waiting time might be increased. This means if you have a date in the coming months for a surgery, such a risk-reducing double mastectomy, you should bear in mind that services are stretched and your surgery may be postponed. If your date is very soon and you haven’t heard anything, you could check in with your medical team to find out the situation in your local hospital. 

Consultations to discuss options for these surgeries will often not be happening face-to-face, but instead via telephone or virtual consultations. You will find this information out from your medical team. Emergency hospital admissions, cancer treatment and urgent care should continue. 

In February 2022, the Government pledged additional funding to help the NHS tackle the backlog of elective treatments and provide more personalised care to patients. As part of these plans, the Government is introducing a new online platform called 'My Planned Care', which will provide support and information (including local waiting times) to patients waiting for elective surgeries. More information can be found on GOV.UK.

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 the official guidance in England throughout the pandemic was to continue routine screenings where possible, we know that on a local level some people found their appointments were cancelled or postponed based on the local hospital capacity.

In the rest of the UK, these screenings were paused for several months before they resumed in the summer of 2020.

There is a system in place to make sure any cancelled appointments are picked up, although there will be a backlog of people waiting for appointments. We know that the screening programmes are prioritising those at highest risk which includes people with BRCA and Lynch syndrome mutations.

For more information about screening in the UK:

• NHS: NHS screening (England)
• Public Health Wales: Breast Test Wales (Wales)
• Public Health Scotland: Coronavirus and screening programmes (Scotland)
• Public Health Agency: Service Development and Screening (Northern Ireland)

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 if you have not been given a new appointment date by then. 

At this point it is unclear when NHS services will be completely back to normal. The Government has committed additional funding through a national recovery plan to reduce the backlog of patients, with plans to increase capacity and reduce waiting times for planned procedures. 

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 six 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 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 former 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.” 

Source: Antoniou, A et al. “Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: a combined analysis of 22 studies.” American journal of human genetics vol. 72,5 (2003): 1117-30. doi:10.1086/375033, Link here

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.

The clear message from the NHS is that if you experience any worrying symptoms, you should seek medical 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 you are still running and measures have been put in place to ensure you’re seen quickly and safely. 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 now well versed in video and phone consultations so 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. 

Read more advice on what to do if you’re experiencing worrying symptoms during the pandemic from the British Gynaecological Cancer Society. 

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.

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). 

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.

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