shock

[Red58]

hi everyone as you all know I got usal scan last week and due to dizziness got brain scan. Was called in on Wednesday by consultant it spread slightly in lungs but it is in brain so my treatment been stopped don’t know what to expect feel ok apart from dizziness c

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Red58

So sorry to hear of your scan results, and how disappointed you must be. We have a booklet on brain metastases that may answer some of your questions, this link will take you directly to the booklet: roycastle.org/app/uploads/2...

Sometimes they use oral steroids to reduce any symptoms you have, and you will find all the treatment options listed page 15 of our booklet linked above. Hope you hear from others in the forum of their experience.

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

Kind regards

The Roy Castle Support Team

[Red58 in reply to RoyCastleHelpline]

Thankyou I was just told treatment stopWould call me few weeks see how I am I basicly have months left I feel quite abandond x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Red58]

Dear Red58

This must be quite devastating for you to hear and understandably you feel quite isolated in this.

You could ask for a second opinion either through your GP or oncologist, or ask if there are any clinical trials that you would be eligible for.

It may be that they will assess your symptoms in a few weeks and decide on a treatment plan then, it may be helpful to speak to the LCNS and clarify exactly what they mean. If there was no consideration of treatment and nothing else they could offer, they often discharge you to a community palliative care team, and not necessarily follow you up in a few weeks. Perhaps discuss with your lung cancer nurse specialist.

We offer one to one support or online group support if this would be helpful for you, you can view the details through this link: roycastle.org/help-and-supp...

You are very welcome to contact us if you would like to chat to ask the nurse, either by email at [e-mail] or call our free phone helpline 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Elt79]

Hi - I had brain mets from lung too - steroids did help reduce swelling on my brain and went on to have high dose radiation to my brain - was ok for a year the re-occurred and fortunately has mor treatment in February 2021. I am stable at the moment originally diagnosed Stage VI NSCLC with adrenal and brain mets in 2018. Wishing you all the best for future treatment x

[Cockailschemocancer]

Hi Red - I also had Brain METS They we’re caught super early so I had one dose of cyber knife (specialist radiotherapy) and it’s remained stable 2.5yrs on. Hopefully that might also be an option for you to get rid of them! Best wishes. Xx

[Red58 in reply to Cockailschemocancer]

Hi I feelAs if I’ve just been abandoned they just say stop treatment Will phone me few weeks see how I am ?they were sorry give me coupla month x

[Nopinkforus in reply to Cockailschemocancer]

Is cybernife even offered to NHS Stage 4 lung cancer patients? Or does a person have to go private to get access to the best and/or latest treatments?

[Cockailschemocancer]

Ok that’s not on. These is always a patient liaison assistant that should help. Maybe goggle PLA for your hospital and ask them, so do you have a Macmillan nurse? I do and she’s an Angel and I can call any time. You should not feel abandoned - but you will need to control this for you unfortunately… wishing you all the best! X

[Red58 in reply to Cockailschemocancer]

No nurse there are two cancer nurses in hospital I’ve heard nothing from themI will keep you posted and thankyou for all your help ❤️

[Nopinkforus]

So sorry to hear you feel abandoned Red58.It sounds as if they were very blunt with you. That's not on.

I know what you mean about the assigned nurses. It's so difficult to get hold of them