Reposted -- I case my post did not get through -- Rejected for Stereotactic Brain Therapy

[Beatless]

Went to Addenbrookes Friday for consideration for Stereotactic Brain Therapy, unfortunately I was rejected as I can't walk well enough.

Have been put onto Steroids & am to see original Oncologist in one week.

My question, what do you think he will offer?

Will it be a different type of Brain Radiotherapy/some other treatment?

Just looking for advise so I know what questions to ask.

Think they are hopping the Steroids reduce swelling to give me better movement.

So please on what do you think treatment I will be offered & what questions to ask

Thanks

[Elt79]

Ah sorry to hear that / I had Dexamethasone to reduce swelling when mine were discovered. and did help me get my speech back. Have you read the Roy Castle Booklet Understanding Brain mets in lung cancer? It is very informative - really difficult to advise on possible options as so much depends on number, I truly hope the steroids help you and best of luck with your next appointment x

[Beatless in reply to Elt79]

Thanks to you both, yes I have read the Roy Castle book & agree that it is very good.

I agree that I should not panic, so as you suggest I will wait a few days & look out for other replies/advise

Many thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Beatless

Sorry to hear that they are not proceeding with your radiotherapy. The steroids can be very effective in improving symptoms, and it may be they will still offer the stereotactic radiotherapy.

You may wish to ask them if you are eligible for any targeted therapy or immunotherapy if radiotherapy is not an option. Hope you hear from others in the forum who will share their experience with you.

It can feel quite isolating, waiting for the next step or decision and how the treatment will be. Perhaps give yourself the week and see how your symptoms are, and lean on family and friends if they offer to help and support you.

If there is anything else you would like to discuss 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

Kind regards

The Roy Castle Support Team

[Bow-19]

It might be worth asking them what the options are for you and if they might change depending on how well you respond to the dexamethasone. You can ask them as many questions as you want to. I find it useful to write a list of questions in the days before I speak to them. Wishing you a good response with the dexamethasone

[Beatless]

Bow, Many thanks will list them

John

[JanetteR57]

Always a bit of a blow when we've almost prepared mentally for one type of treatment but they will assess you at the time to decide what's most suitable given a patient's health, other conditions, etc. The Roy Castle foundation booklet was recently updated and explains some options but as these are always general information, do ask your team what specifically might be offered to you and whether this might change if the steroids improve your overall health.... good luck. roycastle.org/about-lung-ca...

[Beatless]

Janette, My thanks for help

John

[Tike3]

Steroids helped me walk better but like I was told at the time not a permanent solution. There's so many different types of radiotherapies and there will be one for you.

I'm interested to know what caused your inability to walk, is it just one leg or both. Mine started in left leg and I'm sure it was before brain mets. Consultant called it drop foot and said she had to be honest, that I may never get the use of it back, devastated when she said that.

There are so many options available and there will be one for you. So much help and support on here too.

Pam

[Beatless in reply to Tike3]

Pam, The inability to walk came after the brain cancer, it's affecting my right leg which is totality dead. Think it was the brain met that caused it. Have now been on steroids for 3days but improvement in walking yet, I can only walk step by step using a walking frame.

See Oncologist next week & hope he has a plan.

Thanks for your input it helps I can assure you.

John

PS can you walk OK now ?