I was diagnosed with AN 4 years ago. This year the MRI shows it has grown. I want information about stereotactic surgery v fractionated

[Books8]

How to decide on treatment options

[Sarah_TBTC Partner]

Hi Books8,

I'm really sorry to hear your tumour has grown and you need to have treatment, it must be really difficult after 4 years of being stable. We have some information on our website about stereotactic radiotherapy and how it compares to other treatment that might be helpful but please do let us know if we can be of more help. thebraintumourcharity.org/b...

[Books8 in reply to Sarah_TBTC]

Thanks I’ll look on the website.

[bypass]

Hi two things - For what it is worth you can read my story here - anarchive.org/chris.htm As I was treated 22 years ago things have changed somewhat but it might still be of help. Secondly there are a range of treatments referred to as "fractionated". The Cyber Knife (CK) machine was designed specifically to allow easier fractionated treatments to minimise possible treatment side effects, and yet for some reason, in the UK it is often used for single shot treatments. If you are offered single shot CK, you might care to ask why they are not offering fractionated treatment on it?

[Books8 in reply to bypass]

Hello. Thanks for your response. I have read your very interesting story. My AN consultant recommended radiotherapy & said I could request surgery but she did not advise it.

Due to Coronavirus this consultation & the one with the oncologist were by telephone. I found it difficult making decisions in this context. I was given the choice of single SRS or fractionated. At the moment I have selected single as opposed to 30 fractionated but I’m just giving myself this time to find out more about each option.

[bypass in reply to Books8]

The 30 fractions treatment is an older protocol than the 4 to 6 session one often used these days. You might find it helpful to ask what the TOTAL dose given by each of the protocols you have been offered is? It is also not clear which machines are being offered to give the treatment. Finally ask about the track record of the teams involved - sometimes that is more important than the actual method as a very experienced team with an older machine/protocol might prove a better bet than an inexperienced team with the latest equipment!

[Books8 in reply to bypass]

Yes I’m clearer now about asking more questions having had time to think. I wasn’t expecting to have to make a choice of treatments on the telephone consultation so was a bit off guard. I’m going to speak to the hospital on Monday so will find out more then. Thanks

[handmaid]

Hi,

The Royal Hallamshire hospital Sheffield has a really good web site, well worth a look.

I was diagnosed with AN about 20 years ago at Queens Medical Centre Nottingham. I

was advised to have surgery, I didn't fancy that so I did my research & requested a referral

to RHH. The surgeon checked my MRI scans & was a good candidate for the Gamma Knife but, suggested I take a wait and see approach. I've had annual MRI's and hearing tests.

Luckily I still wait & see, my nxt appt is in a years time.

[Tabbycat]

Hi Books8

Just wondering how you are doing?

Tabbycat

[lupie-Cathy]

Hi just to say that SRS ( Gamma Knife) or cyber knife is very targeted, imagine a peach in your hand the radiation is directed straight to the middle of the peach to the stone, so less likely to hit any other structure, fractionated or Linux is directed at the outside of the peach all the way round that’s how it was explained to me. I had SRS Gamma knife at Sheffield Hallamshire in 2013 had no growth since (touch wood) having two yearly scans. Take a look on the British Accoustic Neuroma Association ( BANA) website some really good info on there. All the best with your decision