Radiotherapy

 Coltrane ,  I think you have almost answered your own question in that the number of sessions multiplied by the strength give an amount of radiation dosage.  I had 37 sessions of 2 Gy (Gray units), so 74Gy which 7 years ago was the standard treatment as far as I can see.  Research over the years has changed the standard approach plus the amazing advances in Radiotherapy and more advanced (directed) delivery of radiation.  In the UK, the normal standard now seems to be 20 sessions.  I don’t know what strength but others will probably supply that.

I dont think Space Oar is Nice approved, so isn’t standard in the UK, but seems to be norm in the US.  I guess that is financial more than anything else.  David

 Coltrane , it appears that the Space Oar may be available for those with a specific need if radiotherapy would not be available without it.

https://www.clatterbridgecc.nhs.uk/about-us/news/innovative-rectal-spacer-will-allow-more-patients-benefit-radiotherapy-porstate

I know we have one member whose husband chose to have it privately in the UK.

The 20 sessions are usually 3 Gy per session. The advantage is that this can still leave room for further radiotherapy in the same area if necessary at a later date.

Yes, I understand that 20 sessions will have a greater individual strength than the 37 treatment model. What i don’t understand is why we have moved to 20 sessions and in the USA they’ve stuck with 37.  The “amazing advances in Radiotherapy” that you mention surely applies there as well. 
Is it that the reduction in treatments (hence higher individual dose) is more to do with cost? 

What I’m interested in is do higher individual doses result to more potential side effects, e.g damage to bowels. My bother had no side effects from his 38 sessions whilst my 20 sessions have had a major effect. Was I just unlucky?

Hi Coltrane .

I think you were unlucky. New treatments will only be recommended if they have been fully tested but are only as good as the experts performing them and the machines that they use. Cost benefit does form part of the equation long term but initially there is a very large outlay for the newer machines and the training of the radio oncologist, physicist and technicians. Have a read of this and it might explain the difference between hypofractionated Vs conventional fractionated radiotherapy. There is a move now to go to ultrahypofractionation for some men which is over even less sessions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10529045/

I've had 5 radio sessions, but am nowhere close to being anywhere that could be considered 'normal'. I'm suffering from horrendous night sweats, but no-one seems to care. For close to 2 years I have complained about night sweats but no-one seems to care - last month I WENT TO MY GP and accompanied by my partner, I laid out the facts - EVERY night I had between 5 -11 hot  flushes, I awoke with visual distortion, I just needed sleep and was told - I'll just refer you to endocrinology. Fine, but they aren't living what my life is.

I've had it - nothing seems to be going my way. My partner won't let me touch her, so why sleep together? I've tried a pump, viagra and, after our last joint GP meeting, I was offered Cialis - which she conclusively declined. Why am I even bothering...

Hi AndyK 

So sorry to read your post - help is available - you are half way there with your post - please give our "support Line" a ring tomorrow (0800 808 00 00) - (8am to 8pm 7 days a week) and they will be able to help.

All is not lost - it's just a 'phone call but it will be worth it!!

PM me is you are still struggling - I do have some further resources.

Best wishes - Brian.

The plan put together for me includes 7 weeks of radiotherapy.

This will give a total of 74 Gys, a higher cumulative dose than the more standard 4 weeks.

I have investigated this and have found that both forms of treatment tend to have satisfactory results, which works for me. Although the Oncologist did not say so in as many words, the drift of the conversation seemed to be that she intended to make the attack on cancer cells as complete as she possibly could. I am ok with that.

I have every sympathy with the intimacy problems being caused by the combined treatment. I am not sure whether I am fortunate or not, but my wife has gynaecological problems which means that such intimacy has been foreign to our relationship for quite a while. This was a mutual decision because I didn't want to cause her further problems, and we have found ways to be happy. This has stood us in great stead as I have been suffering from the effects of the hormone therapy currently being used. We have discussed it, and sexual intimacy is not as important as both of us beating our problems.

It has helped that we both have had something to come to terms with.

My hot flushes have been as numerous, but not as bad as yours. They do wake me up, but I chuck the bed clothes around and sleep restarts soon after. I think I may have been prepared for these, in a strange way, by my wife's menopause. She had terrible sweats the way you describe. There seemed to be no way of stopping them, and she just had to live with it.

There were ways of helping - windows open, fans on, little in the way of bedclothes or nightclothes, cold water - all these things helped, but no one of them worked alone. The ceiling fan we had installed in our bedroom was the most helpful thing.

I have noticed that I get the worst one (still nothing like yours) when my body temperature might have changed anyway. Everything seems to go into overdrive. I act to cool down by drinking cold water or removing clothing (gets you funny looks in Tesco) and these things seem to reduce the effect.

There is one burst of sweating that happens at about the same time every day (07:10). I can't find any reason for that at all. Just BOOM!

I'd like to find out why that happens.

Interesting article although I admit much of it is above me. I still don’t understand why they still have 38 treatments in the USA. 

From what I’ve read there are lots of people who are “unlucky”.  The article mentions Space-Oar but this is not generally used in the NHS. It wasn’t mentioned at all to me. 
Furthermore, the dietary advice given to me was confusing and, sometimes, contradictory.  I was told I had tenusmus so was given rectal foam. I didn’t think my symptoms indicated this.

i was given no choice about my treatment and the information I was given was incomplete and poor. My nurse urologist was difficult and my oncologist was aggressive and rude. In between them my Urologist was mostly helpful.  I’m trying to put my life together again but it’s not been easy. I’ve read AndyK’s  response and I’m nowhere near feeling as he does but I do understand it. 

Hello Coltrane. From what I have read the 20 x 3 Gy protocol is recommended as the standard of treatment in both the USA and Europe now BUT it is dependent on the availability of the newer machines and the expertise of the oncologist, physicist and technicians. Other factors could come into play such as age, position of tumour...... In America perhaps the insurance system also plays a part? 

From what you have said you have not had a good experience which has made things more difficult and you must just feel as if you are on a conveyor belt which is not good. If you are dissatisfied with the level of care then there is a complaints system, plus you have the option to ask to change consultant, but understand that living in Wales makes this more difficult. I do not live in the UK now so have more input into where we are treated and by whom, but at a cost. I hope that you are recovering from your RT and getting to grips with the fatigue.

I have attached a couple of videos on which answers some questions about radiotherapy, including the space oar, which the UK seems to be late to the party in offering it on the NHS. 

https://youtu.be/H_ZasYIjfjY?si=VH0M_YNhMYpruajn

https://youtu.be/H3aNfFpInVI?si=N0SQCuP29vto_lty

I would definitely give Cialis a try. The 5mg daily version means its effect is 24/7 so sex can be spontaneous rather than planned around a tablet.

Its cheap well tolerated and helps maintain penis health by improving blood flow as well as having possible benefits for general urinary symptoms.

I would definitely revisit this with a health professional.