Radiation Necrosis?

[BellaBe]

Hello

Has anyone had any experience of radiation necrosis in a brain met?

I am stage 4 ALK positive and on treatment with Ceritinib for the last 3 years and was diagnosed over 5 years ago. I had SRS to 4 brain mets about 13 months ago. They responded really well with 2 disappearing,1 shrinking and one stable.

My recent MRI has shown the stable one has increased in size and they are unsure if it’s due to Radiation Necrosis or the tumour becoming active again. This tumour which was only small at 12mm ( I’m not sure how much bigger it’s got yet) had a necrotic centre previously but I was led to believe that this was normal and the tumour just evolving and dying after SRS.

So it’s been a shock to find out that this may have been caused by the SRS and is an issue in its own right. The other reason is that it is the tumour becoming active again which is also not what I wanted to hear.

I know it is difficult to diagnose so I am going to be having a perfusion spectroscopy MRI to confirm. Unfortunately I have to wait 6-8 weeks for this before I even know what I’m dealing with.

Any experiences of similar situations would be gratefully received. Many thanks.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear BellaBe

So sorry to hear what has been happening to you and the wait you have for your perfusion spectroscopy MRI.

I hope you hear from others in the forum who may have experienced similar. If it is radiation necrosis, then this is sometimes treated with steroids, however as you know, they will need to wait and confirm this with your MRI.

It is understandably a stressful time for you and your loved ones, when you have already been on the cancer journey for so many years. Hope you continue to keep well whilst you wait and perhaps they will be able to fit you in sooner if there is a cancellation.

If you are interested in one to one telephone support or online group support, you can register through this link: roycastle.org/help-and-supp...

If you would like to discuss anything you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All the very best

The Roy Castle Support Team

[Elt79]

I was told prior to SRS it was a possibility this could happen. I’ve had SRS twice and whilst mets treated there is slight damage at the points where mets were, which has affected me, but not necrosis. Wishing best of luck x