Radiotherapy

[Debra1963]

Hi I have an AN and was told yesterday it had grown and that watch and wait was no longer an option. The hospital have suggested a 6 week daily course of radiotherapy. This will involve a 3 hour round trip as well as hopefully continuing to go to work. I just wondered if anyone had had the radiotherapy and how it made them feel.

[Peta2407]

Hi Debra I had Cyberknife 18mths ago and my last MRI showed that it had shrunk away from brain stem and decreased in size mine was a one only treatment was very tired afterwards for about a month .Have you looked into Cyberknife treatment l live in Australia and we only have one machine in the whole country am always happy to answer any questions gook luck with you're treatment .

[Debra1963 in reply to Peta2407]

Thank you Peta2407. I hadn't heard of Cyberknife treatment and had a quick look on the internet after your post. I will do some more research but the initial look I had indicates its an expensive option and so am not sure if this is available on the BAG.

Thank you for taking the time to reply to me.

[anan88]

Hello Debra-I had Gamma Knife treatment (one single c.45-minute session) 6 years ago, following surgery that couldn't remove all of my 3 cm. AN. No doubt there are many reasons why your consultant prefers a course of radiotherapy, but perhaps you could ask why a single Gamma session may not be an option for you? There are several centres in the UK.

It's difficult to tell from inside your own head what side effects may be related to either surgery or radiotherapy/Gamma/Cyberknife. Several years on, while I feel much more on top of my balance issues, and have become accustomed to the hearing loss, the tiredness/memory slowness/"brain fuzziness" esp. when tired are noticeable, but I don't know whether that is from the tumour itself, scar tissue from surgery, or radio treatment. However, at this stage, if the AN is growing, stopping it is the immediate aim. Don't be afraid to ask your consultant WHY s/he considers this the best therapy for you. I feel they get so used to patients not demanding information they often don't give enough unless pushed.

Best of luck, and you'll be absolutely fine!

[Debra1963 in reply to anan88]

Thank you. The single dose was also mentioned and I would have to travel to London or Sheffield but there is a possibility I may lose my hearing. I do have some hearing loss and usually wear a hearing aid but found this doesn't help much. I'm not very good at asking questions and normally follow the advice of the experts. Have never joined a forum either but the responses I have had are helpful and its clear I need to research more.

[anan88 in reply to Debra1963]

I forgot to mention-I still have some hearing (and tinnitus) on the AN side, despite having had both surgery and Gammaknife, so it goes to show that, despite our perfectly understandable fears, sometimes the outcome is better than expected in some respects!

[bypass]

Hi Debra, I had a for of FSR (which is what you are being offered) 19 years ago, It had NO side effects at all. I could have continued working throughout but I had to go to New York to get it so I had a nice holiday instead! Rather than retell my story here, you can read it at anarchive.org/chris.htm Also you can learn a lot about the various options by reading the stuff on this site. anworld.com/ If you read my story and have any questions do please contact me. Best wishes Chris.

[Debra1963 in reply to bypass]

Thank you for your reply - you certainly had a journey. I will visit the anworld site.

Thank you again.

[GABennett]

Hi Debra

I had single dose stereotactic radiosurgery on the Linac machine at Liverpool in December last year. I was offered the choice of the single treatment or six weeks of daily treatment. Although I am retired (64) I still felt that the six weeks of treatment would be too stressful as I live on the coast in North West Wales which would have meant a Daily six hour round trip or staying in a hotel. The only advantage in the six week fractionated treatment would have been a slightly lower risk of facial nerve damage and slightly better chance of preservation of hearing. My hearing in the affected ear is very poor anyway so, for me, it was more important to get it 'over and done with' in one go. My tumour, although growing quite quickly, was still quite small at 1.5cm, which is probably a significant factor.

Having the mask made is interesting and the pre treatment scans are lengthy but the actual treatment was pain free, and you get to keep your mask. Post treatment I have suffered some headaches and pain in and behind the ear and tiredness but nothing too awful. I am now coming up to my first post treatment scan so fingers crossed that it has worked.

You may have been advised to have the six week treatment because you are younger, you may have better hearing in your affected ear or your tumour may be larger or in a different position. I would say don't be afraid to ask the reasons why and then weigh up for yourself whether single dose or fractionated treatment is best for you.

What ever you decide, good luck, I am sure you will be well looked after.

Best wishes

Georgina B

[Debra1963 in reply to GABennett]

Hi Georgina

I just wondered how your first post treatment scan went? X

[GABennett in reply to Debra1963]

Hi Debra

Thank you for asking! My first scan was fairly positive, there was no growth and even, possibly, slight reduction in size of the AN. I am feeling much better, not getting the pain that I was pre treatment and not getting the extreme tiredness (that I had post treatment) anymore. So feeling very positive . Next scan will be 12months.

I hope your treatment went as well, did you have single or fractionated? Frame or mask?

Kind regards

Georgina x

[Debra1963 in reply to GABennett]

Hi Georgina

That is positive news fingers crossed for your next scan.

I had the fractionated treatment with mask. I had some tiredness towards the end of the 6 weeks but am feeling pretty good now. I took your advice and have booked a long weekend away ☺. Think you need something to look forward to during treatment.

Take care xx

[Debra1963]

Hi Georgina - that's how I feel I just want it done and over with for my sake and my family's and be able to get back to work. I am 54 and do have some hearing loss but it's a gamble having the one dose as I may lose it totally. I was also put off a bit by having a "cage" screwed to my head. As I have mentioned in my other replies I have some research to do. It has been really helpful reading about other people's experiences.

I hope that your scan goes well and that your AN has significantly reduced.

[GABennett]

Thank you for your good wishes. Like you, it was the thought of having a frame screwed to my head that worried me most but, with the Linac (linear accelerator) that they use at the Walton Centre in Liverpool, they do not use the frames. You have a plastic mould made to fit your head and it is this that is secured to the bed of the machine, so no Screws! Much nicer and you get to keep the mask. I am not sure how many centres use this type of stereotactic radiosurgery, you may be worrying unnecessarily, as I was.

Whatever method, I think the thought of it is always worse than the actuality. I wish you the very best for your treatment. My advice, book yourself a lovely holiday for when it's all finished, then you have something to look forward to.😎.

Georgina x

[bypass]

For me Radiosurgery was no problem - You can read my story here and ask any questions you like afterwards anarchive.org/chris.htm

[EdSheeran]

Hi I have just had radiotherapy after a regrowth. I was hoping to carry on working but it made me quite sick and my balance has gone worse. Good luck with your treatment.