Hello Beepa

I've had a look through the forum and we do have quite a few posts where people have talked about their experiences with proton beam therapy for different cancer diagnoses. You read through some of these by entering the term "proton" in the forum search function at the top of the page. 

We do have some information on our website about proton beam therapy which you may find of interest. If it would help to talk things through with one of our nurses ahead of your appointment next week you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and offer any advice, information, and support they can. 

I hope that things go smoothly for you over the coming weeks. Do keep in touch and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thanks Jenn I'll search the forum as you suggested. Didn't think of it! 

Hi Jenn, I couldn't find much information relevant to me re proton beam therapy, so I thought I'd carry on with this thread as it might be useful for someone else in the future.

Had my consultation in London last Wednesday and I'm definitely having proton beam therapy at Hospital. Next week I'll get fitted for a mask and get another MRI and my treatment begins 3 weeks later. I discovered they're giving me proton beam therapy not just because the tumour is at my skull base and standard radiotherapy could affect my brain, but because it's also near the optic nerve of my left eye (it has to be zapped so vision loss highly likely in the future) and standard radiotherapy could affect my right eye too. I also discovered that the tumour has grown back after surgery and I need chemo as well as the proton beam therapy. It was a mad day. We left home at 7.45am to get a bus to London (4hours), then tube to the hospital (extortionate prices!) my consultation then blood test took a couple of hours, we had an hour for food then back to Victoria for bus at 6pm finally home by 11pm. Plus all the extra information to process...:/

Re the logistics of getting the treatment - we have been given a one bedroom flat in Camden for the duration of my treatment (7 weeks). We have to pay a deposit of £450 but that's in case of damage, so it will be returned when we leave. I've seen photos of the inside and it's lovely. It gets cleaned weekly and towels, toilet roll, washing powder etc are provided. There's even a gym on site! If I'm going to be feeling bad, at leat I'll feel bad in comfort! Apparently it's right next to the canal. It's a 30 minute walk or 15 minute bus ride to the hospital from the flat. I don't plan to use the tube again!!

As far as the hospital visit went, everyone was friendly and helpful. The consultant was direct, but kind and positive about curing me. Her colleague gave me all the information on side effects etc and was lovely. I didn't have to wait too long. I have a contact there for any treatment questions and a member of admin staff phoned me to relay all the information I needed about the accommodation and my next appointment. I have no complaints. I'm scared, but I feel supported and confident (as much as any of us can be!) of a positive outcome and being cancer free at the end of it all.