Your coronavirus questions answered by experts

Coronavirus (COVID-19) continues to have a profound impact on our daily lives, especially for those in our community who are living with, or caring for someone with, a brain tumour.

We know many of you have lots of questions and concerns related to COVID-19 and how it may continue to affect you or a loved one following a brain tumour diagnosis. We recently teamed up with expert medical professionals for a virtual Q&A in our online app, BRIAN, so you could ask them your questions.

Dr Matt Williams, Consultant Clinical Oncologist, and Shivani Soni, Lead Clinical Nurse Specialist, both from Imperial College London, were joined by Anna Crofton, Advanced Nurse Practitioner, and Farouk Olubajo, Clinical Fellow in Neuro-oncology, both from The Walton Centre.

Please note, this Q&A session took place in November 2020. You can get the latest information and advice we have about brain tumours and COVID-19 by visiting our coronavirus hub.

There were lots of questions asked, which we’ve collated along with the team’s answers below.

COVID-19 procedures and safety

There are people in my life who don’t understand the importance of social distancing during COVID-19 for people with a brain tumour. Why is it so important?

Farouk: Social distancing and/or self-isolating for brain tumour patients is important as patients with brain tumours undergoing surgery or treatment are usually receiving medication such as steroids and chemotherapy. This means their immune system may be less resilient to fighting the COVID-19 infection and would therefore put them in the high-risk category. Social distancing and isolation protects brain tumour patients (particularly those undergoing treatment) and should be adhered to as much as possible.

Is it safe to go to hospital for a regular scan?

Anna: It is safe for you to go to hospital for your routine scan. All hospitals will have procedures in place to make sure their areas are COVID-19 secure, such as regular cleaning, wearing masks and ensuring social distancing.

Will I have to self-isolate before surgery, and during my treatment?

Anna: Government guidelines for surgery are to isolate for ideally 14 days prior to surgery, but most definitely three days before. Most hospitals will have local procedures in place which will also include COVID-19 testing prior to admission. It is also important to communicate with your clinical team if you have any symptoms.

Can I visit my loved one in hospital – what can I do if I can’t?

Shivani: I think this very much varies from hospital to hospital. I know at Charing Cross we aren’t allowing visitors to see loved ones just to minimise the amount of people in the hospital from a COVID-19 perspective. However, there may be exceptions to this in certain situations, i.e. people approaching end of life. Also there are always things you can do in terms of calling wards directly to get updates.

Note added – January 7 2021

Please speak to your medical team if you are unsure about whether your scan, treatment or surgery will be impacted by the latest restrictions. 

If you have any questions, you can get in touch with our Information and Support line by emailing support@thebraintumourcharity.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.

Appointments and talking to your medical team

I’m nervous about my upcoming appointment, but I can’t bring someone with me. Is there anything you can suggest to help me?

Anna: Most hospitals have their own local procedures for allowing a friend or relative to come along with you. However, if this isn’t facilitated, maybe using a phone and having a relative on speaker phone or FaceTime/Skype may be helpful.

Do you have any advice about making the most of digital appointments? What can we do if we don’t like digital appointments?

Matt: We have been using video consults for quite a long time (pre-COVID). The British Medical Journal have published some tips about making the most of an online consult, which I think are useful. I agree that they aren’t ideal for everyone. However, we’re trying to keep patients (and staff) out of hospital where we can.

I’ve been finding phone consultations after regular scans and now recurrence very hard emotionally, our team aren’t offering video consultations. Are others able to get video consults, see scans remotely and is it helpful?

Matt: I think we all understand that these are hard. We’re happy doing phone/video consults for people who are stable, but for new patients and those with recurrences, we often try and bring them into hospital. Our video consults let us see patients and share the scans with them – it isn’t as good as face-to-face, but it is better than a phone call.

I also think you should phone your clinical nurse specialist (CNS), and explain why you would prefer a face-to-face consultation.

With everything going on with COVID-19 at the moment and medical teams being really busy, I’m reluctant to contact my CNS or team with questions. Should I still call them?

Anna: If you’re concerned or have a question, then you absolutely must contact your CNS or your clinical team. The teams will want to know about any changes in your clinical situation and the CNS teams are here to provide support and information so please do get in touch.

Shivani: I totally agree with Anna – if you have concerns you should always get in touch with your CNS/clinical team. We always want to know if you’re concerned about treatment/delays and see if we can help to alleviate some of your concerns and respond to queries. We’re always here to help provide resources and guidance.

Note added – January 7 2021

In some teams Clinical Nurse Specialists (CNS) may currently be asked to support COVID-19 wards.

If you have any questions, you can get in touch with our Support & Information Team line by emailing support@thebraintumourcharity.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.

Shielding

My mum has a glioblastoma and back in April her nurse advised her to shield and wrote that ‘people in your situation will not be offered ventilators if you are seriously ill’, which was horrifying. Now that it is winter and COVID-19 is very prevalent again, what sort of precautions are you advising for people in her situation? She is keen to be out and about as much as she has completed her treatment.

Anna: Certainly with the diagnosis of glioblastoma then shielding at home is advised. Personalised care is extremely important when dealing with a brain tumour and decisions about future treatment should be taken on an individual basis. Fears around ventilation of patients have not come to fruition throughout the first or second wave.

I haven’t received a shielding letter, but think I should have done. What should I do?

Shivani: This is something I would advise you to speak to your treating team about to get clarity. I would say absolutely make sure that you are following government guidelines and advice. There are definitely factors that will influence shielding in terms of if you are on treatment that would lower your immune system. Definitely worth double checking with your team.

I’d like to ask about the impact on daily life for those having radio/chemotherapy. I’m 2.5 weeks post craniotomy and it isn’t yet clear if I will have either. I’d like to know how much I’ll have to shield, how much my contact with other people will have to be limited, what the impact might be on my family (husband and 10-year-old)?

Shivani: I think we would say that chemotherapy definitely lowers the immune system and would put you at higher risk of contracting COVID-19. Once you start treatment I would advise following guidelines and avoid anyone who may be unwell. Radiotherapy doesn’t lower the immune system in the same way so is less of a concern.

I’m currently having cyclophosphamide every three weeks for the next seven months, but have been told my 11-year-old should go to school. The hospital team say I should do what’s best for us but they have already had three positive COVID-19 cases in her year. What are your thoughts on her working at school or home?

Shivani: You are at higher risk of COVID-19 because your immune system is lowered with the chemotherapy, there is an argument for your 11-year-old staying at home – equally, this is definitely something to think about in terms of the social aspect and normality for them in terms of being able to go to school.

I noticed from the LGG (low grade glioma) Facebook group that some people were receiving isolation letters, whereas others weren’t. From chatting to them they were all in similar situations. When I contacted my GP they said I was a ‘medium risk’ – it caused some confusion in the group – was this down to the GPs to decide?

Matt: The initial decisions around shielding were made very quickly, and were done on a fairly simple basis. Low grade gliomas are in an intermediate area: some patients with a LGG for which they are having surgery/radiotherapy/chemotherapy are probably at high-risk; someone with a stable LGG who is entirely well is probably at low risk. The letters and categories were defined by (I think) the NHS and PHE.

Note added – January 7 2021

Please visit our coronavirus hub for the latest guidance on shielding.

If you have any questions, you can get in touch with our Support & Information Team line by emailing support@thebraintumourcharity.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.

Treatment and care

What types of treatment might be delayed?

Farouk: Treatments more likely to be delayed are treatment for benign (slow growing) lesions. In these instances, patients can have regular imaging follow-up as well as clinical correlation to ensure there is no progression of the disease. It is important to understand that the decision to postpone treatment is based on ensuring that patients are not put at risk unnecessarily.

I had a scan yesterday, however they couldn’t add the contrast so I need to go back. It was in a mobile scanner and it was freezing, but I was just wondering if this was anything to worry about? I know it sounds silly but it was set on this date to ensure I have my results by Christmas. I have had the first scan so only need to go back again for the contrast one – they’re trying their best to get this booked ASAP (and at an indoors MRI) but will this delay getting the results?

Matt: I think probably just difficult to give contrast because you were cold. It isn’t anything to worry about, but it does mean that the radiologists won’t have the images they need until the contrast-imaging has been done. However, if you are really keen for a result by Christmas, talk to your CNS, and ask if they can ask the radiologist to report the scan.

I had a craniotomy two years ago and have recently been advised to have Gamma Knife on another tumour. Can you tell me what the side effects may be on my immune system of having this treatment?

Matt: Gamma Knife itself has little immune effect; however, the COVID-19 related risk is probably because of the underlying disease that needs treatment, which may well put you at higher risk from COVID-19.

Are you saying that the existence of my 6mm tumour puts me at greater risk of COVID-19? Can you explain why that is?

Matt: This is difficult, because I don’t know your exact details. However, many of those having Gamma Knife are having it for metastatic cancer, and those patients are at higher risk of coming to harm if COVID-19 infected. But Gamma Knife itself should carry minimal risk.

I take it from your clarification that you are not saying that everyone with any kind of brain tumour is at increased risk of contracting COVID-19, or of incurring greater than average harm if they did.

Matt: I think patients with small meningiomas are at very small or no increased risk.

A friend recommended I use THC oil to help me sleep better and to try cocaine to reduce the localised seizures I occasionally get. I’ve heard a lot about THC but nothing about cocaine. Is it possible it can help?

Matt: THC oil might help. Cocaine is not a good idea – it is a Class A drug, and is likely to make seizures worse. I would really not recommend this.

Risks of COVID-19

Are we at greater risk of COVID causing neurological damage, such as a stroke or encephalitis, if we already have tumours/have had surgery recently?

Shivani: As far as we are aware there is no evidence to suggest that you are at higher risk of neurological damage.

Is there any higher risk with an acoustic neuroma?

Farouk: There is no evidence at present that having an acoustic neuroma places you at increased risk of being infected with COVID or a worse outcome if infected with COVID.

Is there evidence that patients on temozolomide are more at risk of severe COVID if infected?

Matt: Yes, probably. There is evidence that a range of cancer patients are at higher risk of severe COVID-19 infection, and recent chemotherapy seems to increase that risk. It is difficult to give TMZ-specific info; but TMZ reduces the WCC (white cell count), and increases the risk of infections generally, so it probably increases the risk of harm with COVID-19.

Do you know whether COVID-19 itself would increase the risk and severity of seizures? I get them more when I’m ill, but maybe it would have more of an effect than a normal virus?

Anna: If you usually have more seizures when you are unwell then it may well be that having the virus would increase the number of seizures. This is very specific to the individual and not relatively specific to the virus. It may be that you can speak to the epilepsy team at your local hospital for advice.

COVID-19 vaccine

How will a potential vaccine influence the landscape over the next 12 months or so? I know you have no crystal ball – but any insight is welcome.

Shivani: In terms of the vaccine – this will certainly help going forward. As you say, no crystal ball yet, so will depend on how it is rolled out etc.

Will brain tumour patients be in the priority group for vaccines?

Anna: This will probably depend on several things:

1. What type of brain tumour you had.

2. What treatment you were receiving.

3. Are there any underlying health issues that make you more vulnerable?

I’ve just finished my 6th and final (pending scan) course of chemo for a grade 2 astrocytoma. Should I be taking a flu jab and any of the new COVID-19 vaccines? My immune system is probably at its weakest right now.

Matt: We would recommend having a flu jab. When it becomes available, we would probably recommend the COVID-19 vaccine as well.

I had my flu jab last Saturday. Sunday I had a headache all day, had cold symptoms and kept going to fall over sideways and arms and legs were painful and I had a job to stand up straight. Are we more likely to have a bad reaction from the COVID-19 jab?

Farouk: I suppose the right answer is that different people will react to jabs in different ways, regardless of other medical conditions you may have. I, for example, have had a bad spell after a flu jab previously. So to answer your question, I do not believe that all patients with brain tumours will react badly to a vaccine. If you are undergoing chemotherapy or radiotherapy, you might be more prone to the effects of a vaccine. It is important though that if your symptoms persist and don’t improve in a few days, they may be unrelated to the vaccination and it’s worth considering other causes.

If I’m on chemo for seven months, will this mean I won’t be able to have the vaccine until treatment is finished?

Matt: You would be able to, but it may be less effective.

Is research taking place to ascertain whether any of the new vaccines will be safe for those with glioblastomas? Or is there particular evidence already included in the data now being presented to the regulatory authorities?

Anna: At this time there isn’t any specific condition-related research as focus has been on developing a general vaccine for all. However, as we begin to understand the virus more, this may be included in future research.

I have epilepsy from my tumour. Would the vaccine increase the number/severity of seizures I have, given I have more when I’m ill? And would having epilepsy or taking epilepsy medication reduce the effectiveness of the vaccine?

Matt: Any reaction to a vaccine might increase your seizures, but only for a few days. Taking the anti-seizure medication shouldn’t reduce the effectiveness of the vaccine.

Read more about vaccinations

Side-effects of treatment

I am experiencing a lot of pain after surgery on my head. The op itself went well but since radiotherapy l am left with a few problems. It’s hard to walk, speech is poor, and pain, without painkillers being able to take the edge off. I’m being referred back to Oxford, but do you have any advice?

Anna: Many people can experience pain after surgery for brain tumours. It very much depends on the type of pain you have as to what painkillers will work best for you. It’s good to hear that you have been referred on for this problem. It may be useful to try to access some physiotherapy for your mobility issues and a speech and language therapist regarding your speech difficulties. 

Exercise and therapy

Neuro-physiotherapy seems to be impossible to access and COVID-19 makes it impossible to attend any sessions personally. Can you recommend any websites that offer guided physical and mental physio, especially for those affected by brain tumours?

Shivani: Things are much harder at the moment with COVID-19. There are a few websites and apps you can access that may be helpful – however these will not be specific to brain tumour patients but will still be helpful. These include an app called ‘reps’, legs.org.uk- more interactive and offers classes for people with neurological deficits. Other apps include: CanPlan, luminosity and flow free.

I have epilepsy as a result of my tumour, which now appears to be in a stable condition after radical radiotherapy and six rounds of chemotherapy. I’m trying to get fit again but find about 30 minutes of exercise will trigger a seizure. Is this likely to change?

Matt: This is a really interesting question. My experience is that patients often find a ’pattern’ to their seizures, as you are describing here. Once that pattern is stable, it might be worth talking to your team/ your neurologist about changing anti-seizure drugs.

Are there any forms of exercise you’d recommend? I did try a couple, including yoga and weights, however after starting them I had a scan which showed growth. I know they’re most likely not related but it did worry me a lot that they were connected – I think it was just the timing.

Matt: I don’t think exercise made the tumour grow. All forms of exercise are a good idea for brain tumour patients, and what works for one person is different from another. I would strongly encourage you to continue exercising, as and when you can.

If you have any questions about COVID-19 and brain tumour treatment and care, you can get in touch with our Information and Support line by emailing support@thebraintumourcharity.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.

You’ll also find more information, advice and guidance on COVID-19 on our coronavirus hub page.

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