How to find a master of the cyberknife?

[whitefishbay]

Hi all you fell AN sufferers (warriors),

My vestibular schwannoma although small has protruded a bit into my porus (whatever that is - must look up) and the consultant radiologist says: offer radiotherapy. This info is on my patient notes as my apt with the ENT Dept is in June. I thought in the meantime I could try to find an excellent NHS neurosurgeon or specialist that is top of their field with radiotherapy/cyberknife.

I live in London (SW). Can anyone recommend anyone, please? I would be grateful.

Thanks in advance.

Whitefish🐟

[Alison_L]

Hi Whitefish. When I told my Skull Base Team neurosurgeon at St George's that I didn't want surgery (personal reasons), he referred me to the neuro-oncology team at the Royal Marsden, Chelsea (the Sutton branch didn't have the right machine). They booked me in for Fractionated Stereotactic Radiotherapy - 5 weeks of daily visits, Mon-Fri - for short bursts. I can't fault the team there, appointments were very quick, with full explanations about why they were suggesting this rather than cyberknife or other alternatives. I finished the RT in February and I have the 3 month MRI booked in a fortnight, and a meeting a few days later with the consultant for the results.

[Robbo2023]

Your choice, in short. Bart's cyber knife.

[Debra1963]

Hi Whitefish my consultant wanted to avoid surgery unless absolutely necessary. I am with the Skull Base Team at Addenbrookes in Cambridge who are excellent. Dr Sarah Jefferies. Had successful fractionated radiotherapy over 6 weeks and on Friday received the news my AN had reduced in size for the third year running! 😀

[whitefishbay in reply to Debra1963]

Dear Debra

Thanks very much for this info. I live in London so not sure they would send me to Addenbrookes but I will check out Dr Sarah Jeffries.

Really helpful. Thanks again.

Whitefish

[flappers]

Hi, I was very happy with the excellent planning and delivery of my radiation treatment at Guys cancer centre, who worked alongside the team at King’s, when deciding between surgery or cyberknife ( they use a LINAC). I had three blasts over 5 days, delivering 19.5 grays in total for my 25mm AN. Couldn’t fault them.

[whitefishbay in reply to flappers]

Dear Flappers

Thanks for this info. I wonder how they decide where you go? Queues? Also probably where you live. I live in Wandsworth but I used to go to the chemo village at Guys when a friend was having chemo for breast cancer. We are lucky to live in London.

Thanks again.

Whitfish.

[flappers in reply to whitefishbay]

Hi, anyone with an AN who lives in Kent is referred to a Kings, and they partner with Guys for the radiosurgery. Not sure which part of London the also cover. Hope you are able to feel confident in whatever you find. X

[whitefishbay]

Hi Alison

Thanks so much for this info. I am probably too old (66) for surgery plus the an is 'only' @ 6 mm so they will suggest radiotherapy or cyberknife. Not sure how they decide what you 'get'. Probably down to your postcode. I hope I get to go to the Royal Marsden as I live in Wandsworth.

Thanks again. AN - just what you don't need. Ever.

Whitefish.

[Maybaby61]

Hi whitefishI am in Kings as I reply due for surgery tomorrow on a 5+cm AN and I will be 62 at the weekend. It is more about the AN than age I am sure.

[whitefishbay in reply to Maybaby61]

WOW Maybaby61,

Well I shall be thinking of you. What is the name of your surgeon? I will say a prayer for you!

You may want to follow the young lady on Instagram - theelderess. She had her AN surgery in the USA and talks about it online and answers questions. She is doing very well. Sure you will too.

Whitefish xx

[flappers in reply to Maybaby61]

Will be thinking of you. That will be a birthday to remember! The team at Kings will look after you and hopefully you will feel up to a bit of birthday cake by the weekend. Let us know how you get on. We know everyone recovers at their own pace, just be super patient with yourself and know that you're in safe hands and for you, it is better out than in! x Lin

[Snips1960 in reply to Maybaby61]

Thinking of you Maybaby61, wishing you all the best.

[Oilslick3k]

Hi, I underwent cyber knife treatment in May 2022 for a 14mm x 8mm AN which was watched for 6 months prior and was described as growing moderately by my consultant. Had my 1st MRI early May this year and saw my consultant last week. He said its no longer on its moderate growth trajectory and the measurements showed the AN had shrunk by a little over 1mm in both directions. I need annual MRI's for the next 2 year and if its still shown to have stopped growing or even better shrunk some more then the future scans will be 3 years apart thereafter upto 10 years. My cyberknife treatment was at the QE Birmingham and a single 35 minute session under Paul Sanghera. My ENT consultant is Richard Irving both of whom I very highly regard and I'm very pleased and relieved by the initial outcome and ongoing prognosis. I hope you get the care you need and wish you all the best.