Proton therapy

Hi W dog 

Proton therapy is supposed to protect areas near the tumour from damage , the beam only goes onto the tumour but not surrounding tissue like EB.

I don't think that there are long term success rates for Proton.

Looks good but it's expensive so something to consider.

You could look online to see if any NHS hospitals are offering it.

I had External beam RT 5 years ago and don't have any side effects.

Steve

It's early days for proton beam in prostate cancer, so no long term results for a long term disease.

Additionally, because the therapy is being sold, you need to be careful that you are reading a scientific paper, not an advertisement - they are careful to use 'neutral sounding' names like Rutherford and proton beam therapy.

This reference is for a trustworthy site - prostate cancer UK

While we don't know how useful this therapy will be, one of the generally agreed strengths of proton beam is that it tends to reduce side effects, so while a longer life isn't so much on the cards (98% of men who have standard RT survive for at least 10 years), fewer bowel and bladder problems down the line might be a possibility.

Thanks Steve, we are in a quandry as I doubt the medical insurance will cover it but equally my husband's tumour location will not permit use of spaceoar so there could be damage to bowel and incontinence and he's only 56.

Hence curious to hear from anyone who has actually had proton beam for Prostrate cancer.

Best wishes to you.

W dog

Hi Heinous

Thanks for your reply.

Thats the problem - we want longer life above all else but equally as I have mentioned to Steve above husband's tumour will not permit space oar and we are worried about the damage to the bowel with standard radiotherapy.

Very best wishes

Wispmydog

Unless he has a pre existing bowel condition Radiotherapy shouldn't pose a problem  although u mention tumour location , is it in some awkward spot?

Yes the margins suggest ( as it is in seminal vesicles - both) if they are to do external radiotherapy it will damage the bowel ( potentially). Will see what the insurers think- they have been pretty fair to date so can't fault.

Grundo said:

Unless he has a pre existing bowel condition Radiotherapy shouldn't pose a problem

Sorry, but that's not quite right. While short-term problems are unusual unless there's a pre existing bowel condition (other than some looseness, which isn't uncommon), the site of the prostate is close to the rectum, and long-term issues are not rare - up to 5% in some studies, though more often quoted as 2-3% having severe bowel dysfunction symptoms, including rectal bleeding, requiring intervention.

Hi Wdog

I agree it's doubtful that medical insurance would cover proton. They will say it is experimental. The best you can hope for is a partial contribution.

I was offered proton treatment recently in the UK. It would have been 7 factions over 3 weeks, no HT, no markers but a space oar. Total cost nearly £30k.

I decided to stay on active surveillance for now, but I would be very interested to hear from anyone who has had proton.   

Best wishes

Hi David,

Thanks for your reply.

We do need to send all notes to 'experimental team'. 

Will up date you.

Seems a more targeted regime? 

Keep safe

Wispmydog

Thank you for your reply Heinous