proton therapy

Hi toby12 , sorry to hear of your diagnosis and hope you are managing okay over these last few weeks. I was diagnosed in June and found the first month or so of processing the diagnosis and working out the options the hardest.

My story is different to yours (stage 2 salivary gland cancer, had operation before other treatment), but just wanted to say that I just completed 33 rounds of proton beam therapy 2 weeks ago, so if there's anything you'd like to know about proton itself do feel free to ask!

Best wishes 

Philippa 

The number of 60 year olds (myself included) being diagnosed with this is both worrying and uncanny. I was diagnosed back in March with a 5cm tumour at the GOJ junction. I too asked for the most minimal type of surgery and was advised that it would be keyhole/robotic for the first stage (stomach) and then a larger incision at the right side of my chest going towards my back. This is mostly not carried out by keyhole /robotically and is the longest part of the operation. 

Good luck with your journey

Anthony 

Hi. Thank you for you feedback. Did you choose proton therapy ?  Was this your given option or did you have other anything  to compare it to I suppose you do not know if it any better than normal radio therapy ? The treatment I have been suggested is to get onto a proton trial and have chemo/proton and then operation. As I have heart failure my thoughts is proton would not be as aggresive to other organs ? As it is a trial there is a 50-50 chance I will be allocated proton therapy or have to have normal radio therapy. Over 5 weeks, it would 2 weeks chemo 5 days a week followed by 2 weeks chemo and proton 5 times a week

I still think my biggest fear is the op and long recovery. thank you and hope you are on road to recovery Thanks.

I was given the choice of radiotherapy or proton. Obviously I can only speak from my experience and the information which was shared with me, so take what is useful and leave/question the rest.

My understanding was in terms of effectiveness, for my cancer it is thought to be the same level of effectiveness, but of course as it's relatively new in comparison there is a lot less data on it. 

From a scientific standpoint, standard radiotherapy uses photon beams which my oncologist explained "enter your body and keep going until they leave your body". Whereas proton beams go to a specific depth (which is planned with your treatment) and so stop at that point and don't go further into your body. This means that, as you say, less potential damage to surrounding tissues/organs. The splash zone was similar (so imagine a circle drawn around the area it's targeting) - e.g. although mine was targeted near my ear, my whole cheek was inflamed etc. But the impact is not as deep in the body. For me, this was the key decider as it reduces long term risk of the radiotherapy causing other cancers further down the line, as less of the body has been affected. For some this may or may not be a deciding factor, I'm in my 30s and so wanted to consider the risks that might appear in 20/30 years. 

Because of the reduced area, I believe short term side effects can be less as well. I of course have no comparison of how I'd have coped with usual radiotherapy but I found the side effects more manageable than I expected. The daily hospital trips were exhausting, but 2 weeks on from finishing I am starting to feel improvements every day so feel more positive reflecting on it. 

I've been lucky not to have chemo so don't know about the interaction. It's so difficult to make decisions, I just wanted someone to give me black and white answers as to what to do but of course that's not how it works. That's understandable that your biggest fear is the op and recovery. One day at a time, and I found once a decision was made I felt a lot more positive knowing we were actively doing something. 

Sorry for the long reply, as I said, take what is useful and ignore the rest! I'm not an expert but happy to share my experience.

Take care,

Philippa

Thanks for your experience. The explanation was great and it is what my understanding is. I have decided to request to be on the trail for proton and hope I am chosen to be on that part of trail as the other part of trial is the comparison to chemo/ standard radio and then op. As you say if you given the opportunity for proton I feel it is a no brainer!  Best wishes and good luck with your treatment.  Jean

Best wishes to you too, one day at a time. 

Hi there, I have just been diagnosed with head and neck cancer, still waiting for CT & MRI - can I ask whereabouts you are, I'm interested in Proton therapy. I'm in Derbyshire and I can't see there are any trial near me....

Hi MGWass , so sorry to hear about your diagnosis. I'm not sure where the trials are based, but I believe the only proton beam equipment in the UK is at The Christie in Manchester, and UCLH in London. Best wishes.

Hi. Sorry to hear about your diagnoses. I am in merseyside and proton trail is in manchester christie or london. After having CT and PET scan i attended clatterbidge on the wirral where I was told about the new trial and invited to take part. As it is so expensive the technoligy  is only currently in 2 places. I think I have just been lucky where I live. I have just had the call today to say I one of the lucky patients who have been randomised to have proton therapy. With the trail there  was a 50/50 chance of normal radio therapy or proton. Wishing you good luck in your journey