Brain Mets

[Mommyworld]

Hi all mom was diagnosed with NSCLC cancer stage 3B in September 2020. She had radiotherapy chemotherapy and immunotherapy and seem to be doing well. Cancer has been under control and we've had not too many issues. We recently found out that has three large tumours on her brain which arranging from 3 cm to 2 cm. They cannot do treatment and instead have done full brain radiation because of the size and location. She has now completed this treatment. Her symptoms seem to have worsened and we are being told this is only natural a couple of weeks after the treatment. Consultant for the lungs has said there is no other treatment that they're looking at at the moment it is just this radiotherapy. I am worried sick it's breaking my heart to see my mother who is such a proud woman behaving the way she is and for this to just sneak upon us. Does anyone have any positive stories to share that have had full brain radiotherapy. We have been told that they do a scan if they have reduced then have targeted radiotherapy on the brain. She is in good health otherwise and her lungs are under control and it is now just the brain that seems to be the issue. Looking for positive stories also how will be when she comes off the steroids.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Mommyworld

So sorry to hear about your Mum, and this is understandably a very distressing and stressful time for you all. Symptoms can appear worse after brain radiotherapy, sometimes due to the swelling of the tissues from the treatment, but then symptoms improve once the swelling goes down, which can take a few weeks.

You may find this link from Cancer Research UK of use, on symptoms getting worse after treatment: cancerresearchuk.org/about-...

It can be really challenging any symptoms of brain mets as the person may sometimes not behave or act in a way they use to before, or it can present with changes in their balance or mobility. I hope your Mums symptoms improve soon and she will have a gradual reduction in her steroids, which the oncology team will manage this well.

This is our information booklet on brain metastases: roycastle.org/app/uploads/2...

It is encouraging that your mum is well otherwise and we hope that you hear positive stories from those in the forum that have experienced this.

You mentioned targeted therapy may be an option for future treatment, this is our information booklet on these: roycastle.org/app/uploads/2...

and

This is our information booklet for carers:roycastle.org/app/uploads/2...

We have an online support group for carers and you can view and register for these through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at [e-mail]

If you would like a paper copy of any of our information booklets, you can email [e-mail]

You are welcome to contact us on our ask the nurse helpline if you would like to discuss anything on 0800 385 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or email us at [e-mail]

Take good care of yourself and we hope you have plenty support around you.

Kind regards

Ask the nurse

Roy Castle Lung Cancer Support Team

[Mommyworld in reply to RoyCastleHelpline]

Thank you for your feedback.

[Rebeccaannerose]

Hi,

My partner had the same diagnosis as your Mum 18 months ago. He hasn’t had any mets to date but I wanted to share that I have regularly scoured the internet for positive stories and although I can’t recall them all here, I have certainly read of people clearing brain mets after radiation. My understanding is that they are particularly sensitive to radiation and treatment can be effective, so stay positive!

Wishing you all the best,

Rebecca

[Mommyworld in reply to Rebeccaannerose]

Thank you for your reply Rebecca and sending your partner all the best wishes and strength.