I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Ultra Hypofractionated Radiotherapy

User
Posted 18 Nov 2022 at 07:06

Hi, have been offered this as an alternative to surgery. Any views, exoeriences would be most welcome

Best wishes Tony 

User
Posted 18 Nov 2022 at 18:19

I had this as a 5 fraction back in May. It was a very straightforward process: lie back, breathe slowly and listen to Pink Floyd. I had just a couple of days, in the week after treatment, of not venturing too far from a loo, but otherwise experienced no problems. 

In my case the rationale for this treatment was not so much the shorter period of hospital visits, but the better targeting offered by the MRI-Linac machine. My internal plumbing meant that the local radio team could not get a sufficiently clear shot with their equipment. And my T2C generated differing prognostic views on how likely it was that an op would succeed in removing all the cancer.  So it was an op, or the Top Gun machine. I went for the machine.

I had to go privately, but am now back under the monitoring care of my local oncologist. His view was that my treatment was the way to go.

As with all RT, it takes a while to know if it has been successful, but I have no regrets and would make the same choice again

 

 

User
Posted 19 Nov 2022 at 20:32

Hi Tony,

 I am the same age as you, and my diagnosis was similar to yours- Gleason 3+4, T2 (although mine was a T2C, which influenced my choices a bit). Starting PSA was just under 18

My pathway was not particularly straightforward. I had opted for RT after diagnosis for a mix of reasons- some purely subjective ( I didn't fancy the op and its attendant risks) and some a bit more objective ( I felt RT might cast its net a bit wider to deal with the measurable possibility that my cancer had begun to edge outwards). 

 I was started on Prostap, with a brief  blast of Bicalutamide to overcome PSA flare, but this failed after a few months, so I was switched to Zoladex. It took a few months, and another blast of Bical, to get my PSA down below 4, but when they began to measure me up for the RT it became obvious that there were too many loops of bowel too close to the action. So a rethink was needed. To cut a long story short , a second and third opinion led me to the MR Linac option.  

All in all, I was on HT for 2 years before treatment was finally started, but that was largely unplanned. Other than this lengthy period on HT no additional procedures were involved- no extra medication and no gold seeds. The point about the MR Linac is that the machine is recalibrated to you at every session ( so no need for tattoos and the like) and is monitored in real time during the treatment sessions. In fact one session was paused mid-flight while a bubble of gas worked its way round.....    I experienced no discomfort.

You'll need to work out what works best for you, but I'd say there's no reason to be worried about the higher dose treatment. Although I chose it for the enhanced accuracy, the research I did suggested that there was no downside risk to the higher dose rate, and if anything a slight upside.

Best of luck

User
Posted 19 Nov 2022 at 22:08

Originally Posted by: Online Community Member
The point about the MR Linac is that the machine is recalibrated to you at every session ( so no need for tattoos and the like) and is monitored in real time during the treatment sessions. In fact one session was paused mid-flight while a bubble of gas worked its way round..... I experienced no discomfort.

There's no doubt that RT is advancing in both its accuracy and the quantitative way it's delivered. I had both gold seeds and tatts with the MR Linac being re-calibrated before and during treatment. In the background there's a massive computer that takes up a large room. There's also radiographers monitoring screens showing what's going on inside you. I was lucky enough to get a guided tour [well worth it if they'll let you have a look].

RT is being delivered in different ways, in different parts of the world, so if you go that way it would be useful to know how up to date your oncology department is. The advances in RT shouldl lead to less HT after the RT treatment.

Jules

 

Show Most Thanked Posts
User
Posted 18 Nov 2022 at 18:19

I had this as a 5 fraction back in May. It was a very straightforward process: lie back, breathe slowly and listen to Pink Floyd. I had just a couple of days, in the week after treatment, of not venturing too far from a loo, but otherwise experienced no problems. 

In my case the rationale for this treatment was not so much the shorter period of hospital visits, but the better targeting offered by the MRI-Linac machine. My internal plumbing meant that the local radio team could not get a sufficiently clear shot with their equipment. And my T2C generated differing prognostic views on how likely it was that an op would succeed in removing all the cancer.  So it was an op, or the Top Gun machine. I went for the machine.

I had to go privately, but am now back under the monitoring care of my local oncologist. His view was that my treatment was the way to go.

As with all RT, it takes a while to know if it has been successful, but I have no regrets and would make the same choice again

 

 

User
Posted 18 Nov 2022 at 22:09

Thanks so much for your reply old fogey, that is really interesting. Up to now Ive been favouring the op option, but this shows there is a genuine alternative for me. 

Did you have gold seeds implanted or any other pre treatment done? Was it painful etc? Did you have hormone treatment beforehand? Any further info gratefully received. 

Naturally I will be doing a lot of research and asking around. Have emailed specialist nurse on here for example re UHR, but maybe this is the way to go. 

Edited by member 18 Nov 2022 at 23:09  | Reason: Not specified

User
Posted 19 Nov 2022 at 20:32

Hi Tony,

 I am the same age as you, and my diagnosis was similar to yours- Gleason 3+4, T2 (although mine was a T2C, which influenced my choices a bit). Starting PSA was just under 18

My pathway was not particularly straightforward. I had opted for RT after diagnosis for a mix of reasons- some purely subjective ( I didn't fancy the op and its attendant risks) and some a bit more objective ( I felt RT might cast its net a bit wider to deal with the measurable possibility that my cancer had begun to edge outwards). 

 I was started on Prostap, with a brief  blast of Bicalutamide to overcome PSA flare, but this failed after a few months, so I was switched to Zoladex. It took a few months, and another blast of Bical, to get my PSA down below 4, but when they began to measure me up for the RT it became obvious that there were too many loops of bowel too close to the action. So a rethink was needed. To cut a long story short , a second and third opinion led me to the MR Linac option.  

All in all, I was on HT for 2 years before treatment was finally started, but that was largely unplanned. Other than this lengthy period on HT no additional procedures were involved- no extra medication and no gold seeds. The point about the MR Linac is that the machine is recalibrated to you at every session ( so no need for tattoos and the like) and is monitored in real time during the treatment sessions. In fact one session was paused mid-flight while a bubble of gas worked its way round.....    I experienced no discomfort.

You'll need to work out what works best for you, but I'd say there's no reason to be worried about the higher dose treatment. Although I chose it for the enhanced accuracy, the research I did suggested that there was no downside risk to the higher dose rate, and if anything a slight upside.

Best of luck

User
Posted 19 Nov 2022 at 21:59

Thanks so much for your replies, now have a much better idea of what is involved

Am going to write to the RT doctor to ask some of the questions that have arisen since I originally met him. 

Still undecided what to do, a lot depends on the hormone therapy angle. He didnt mention it at the original meeting, IIRC. At the time I was pretty sure I was going down the op route, so didnt ask some questions I should have. 

Thanks again for all your help and the very best of luck to yourself as well, Tony

 

Edited by member 19 Nov 2022 at 22:01  | Reason: Not specified

User
Posted 19 Nov 2022 at 22:08

Originally Posted by: Online Community Member
The point about the MR Linac is that the machine is recalibrated to you at every session ( so no need for tattoos and the like) and is monitored in real time during the treatment sessions. In fact one session was paused mid-flight while a bubble of gas worked its way round..... I experienced no discomfort.

There's no doubt that RT is advancing in both its accuracy and the quantitative way it's delivered. I had both gold seeds and tatts with the MR Linac being re-calibrated before and during treatment. In the background there's a massive computer that takes up a large room. There's also radiographers monitoring screens showing what's going on inside you. I was lucky enough to get a guided tour [well worth it if they'll let you have a look].

RT is being delivered in different ways, in different parts of the world, so if you go that way it would be useful to know how up to date your oncology department is. The advances in RT shouldl lead to less HT after the RT treatment.

Jules

 

User
Posted 19 Nov 2022 at 22:40

Hi Jules, thanks very much for reply.

For sure whatever option I choose, I'll post about it. I live in Sweden these days, but born and bred in England.

I'll be using Swedish NHS equivalent, I guess it'll be pretty much up to date. The op will be Da Vinci, will find out more the UHR machine if I take that route. 

User
Posted 23 Nov 2022 at 10:29

Went for third opinion today very good doctor. Said it was 50 50 between op and UHR, he is a surgeon so that was interesting in itself.

He said I wouldn't need hormone therapy which is a huge plus for me.

I think I am going to go for UHR, but of course will sleep on it. 

User
Posted 09 Dec 2022 at 23:01

The journey begins, gold seeds inserted.

Very good doctor again, both biopsy and gold seeds insert went so smoothly and painlessly 

Going to measure my flow, once I buy a measuring jug πŸ˜…πŸŒŠ Am not too nervous about that. The flow that is, not buying the  jug, am so blasé about that you wouldn't believe ☺️

Am going to have a CT, MRI scan before UHRT begins. Hopefully that will go well, but also if there any red flags will pick them up.

I haven't got a clue if I made the right choice, hopefully either choice would have been a great one, and this one will see me fit and functioning for twenty years or more

Edited by member 09 Dec 2022 at 23:41  | Reason: Not specified

 
Forum Jump  
©2024 Prostate Cancer UK