I was diagnosed in 2018 with an anaplastic astrocytoma and had two craniotomies, whole brain radiotherapy and a year’s chemotherapy. They were not able to remove all the tumour so I have been having quarterly MRI brain scans since then. However when I hadn’t received a date for my next scan (which was scheduled for 4 months, not 3) I was told that the Government had told King’s not to do any MRI scans because of Covid-19.
This has naturally worried me greatly. Has anyone else been told this?
Hi Pam G
I'm sorry to hear that your planned MRI has been cancelled due to Covid.
I don't have scans but do have 3 monthly check-ups following my melanoma diagnosis. I haven't had a face-to-face appointment since this time last year.
My consultant said that the guidelines they'd been given meant that they felt it was safer for me not to come to the hospital than to attend. However, I know that if I find something that I'm worried about I can make an appointment to be seen. I know this isn't ideal but I do understand their concern that I could catch Covid visiting the hospital.
Have you had a chat with your CNS to discuss your worries and to find out when your next scan will be?
x
Hello Latchbrook,
Thank you for replying to me. We last corresponded when I reported a psychotic episode following high doses of Dexamethasone and was asking whether there was any information about it in any of your leaflets.
I am sorry to learn that you have had a diagnosis of melanoma and hope your treatment is going well.
I was shocked when I was told by the MRI department at King’s that the Government had told them not to do MRI scans and immediately sent an email to the neuro-oncology team. The reply I received from the Neuro-Oncology Clinical Nurse Special was that the neuro-oncology nurses were helping on the wards, but that my review appointment would go ahead on 22 February when my symptoms would be discussed. This gave me no comfort as I have already been told that the MRI would show if the tumour was progressing, before I would know from any symptoms.
I had an appointment at Guy’s Hospital last week and the consultant I saw was shocked when I told him that I was not having a scan. They are still doing MRI scans at Guy’s.
Hi Pam,
I have an anaplastic astrocytoma as well - radio and chemo but you beat me on ops, I've only had the one back in 2010.
The cancellation seems strange. With my annual MRI it has been the reverse. I had had to cancel my scan at Charing Cross Hospital (down to me not them). They sent me a new date by email the next day. The scan will now be at St Mary's Hospital. When I asked about the change they told me that because CX was chock-a-block then other hospitals were taking some of the overload. Both hospitals have been very helpful.
Cheers,
Richard
Hi Richard,
Many thanks for taking the trouble to reply, and for you helpful comments. You are the first person I’ve come across with the same diagnosis as me.
I shall ask the oncologist when I have my next telephone appointment on 22 February if it would be possible to have the MRI at another hospital and will post her advice here.
Regards,
Pam
Hi Pam G
Thanks for asking after me. I was diagnosed 4 years ago and had all the surgery and treatment then. I'm now just on 3 monthly check-ups to make sure that it hasn't returned. Everything's okay so far, touch wood.
I can see that Richard's given you some good advice and hopefully the oncologist will be able to arrange for the MRI to be done elsewhere.
x
I have now had my telephone consultation with the oncologist (not my usual one). They were proposing to scan me in a couple of months which would be nearly 6 months after my last MRI. I said I wasn’t prepared to wait that long as I was getting more headaches than usual, and she has put in a request for an urgent scan.
How are you both doing?
That's good news that the oncologist has put in a request for an urgent scan so that you won't have to wait as long as they were proposing.
I'm fine thanks, touch wood, and have my next telephone consultation on Friday.
Wishing you all the best
x
Hi Pam G,
I have an atypical meningioma and have an MRI every 3-6 months. My last scan was a few weeks ago and I know they have a backlog of scans as they are carrying out less scans in a day. I had one scan where I was the only person in the waiting room but for my most recent one they sent me to a private imaging centre and the NHS covered the cost. I'm glad they have put in a request for an urgent MRI as we need to keep having regular scans even during a pandemic.
Hope you get a date soon as I always find that a relief.
Hi KaspianSce Sorry to be late in acknowledging your response - but I’ve only just discovered it. I have now got a date for an MRI at Guy’s on Monday 8th March which is a big relief.
I hope you continue to have your scans as yes, we do need regular scans, and I really don’t think the Government should have told King’s to stop doing MRI scans “because of Covid-19”.
Pam x
Hi Pam G,
Really glad to read that you will be having your MRI soon as that continuity is so important. It seems that every hospital has responded differently to the government advice for some reason. Hope all goes well for you on Monday.
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