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Where could I get HIFU?

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User
Posted 14 Oct 2026 at 22:23

Hi,

I've very recently been diagnosed (Gleason 4+4, CPG5) and am being lined up for open beam radiotherapy in Glasgow. A long-standing eye condition makes inflammation, even in my lower body cavity, dangerous to my remaining eyesight. I've been frantically reading for the last few days and I think HIFU might be a safer option for me - assuming it's suitable in my case. Is there anywhere I could get it without needing to be on a clinical trial? I'm told there are a few specialist centres but I can only find ones in London and Oxford. 

Any thoughts would be much appreciated. It would be good to be forearmed before meeting my oncologist.

 

 

User
Posted 15 Oct 2026 at 23:28

Originally Posted by: Online Community Member
My problem is that it looks like open beam radiotherapy will create so much inflammation in my body that it will seriously damage my reduced and delicately-balanced vision. I'd prefer a shorter life being able to see, rather than a longer one being blind. Currently I'm thinking I might take just the hormone therapy (which starts tomorrow), letting Stage 3b become stage 4, and hoping I'll be lucky managing the metastases.

Hi again, Bret.

As I said earlier, mate, I'm not medically trained, but I'm sure there must be curative treatments available for your T3b prostate cancer which will not risk worsening your eye condition.

In your other conversation you mentioned:

Originally Posted by: Online Community Member
An MDT that met this morning has taken RALP off the table. They seem to have reached the same conclusion I was rapidly getting to: that my eyesight would be lucky to survive the operation, let alone the recovery. So it's hormone treatment on Friday, followed by external beam radiotherapy, if I think it's safe enough.

It's rare, but not unknown, to have surgery on T3b disease. Even when surgery is used in cases of T3b, it's usually backed up with radiotherapy and HT. In that conversation they appear to have considered RALP, and only ruled it out because it's done in the Trendelenburg position, where you're lying tilted with your head tilted below your feet. I can understand why that might put additional pressure on your eyes, and why it might not be a suitable treatment option.  However, if that's their only concern, why aren't they considering open surgery where your body is level during the operation. 

It seems they are happy to proceed with EBRT and HT, which is the standard way of treating T3b PCa.

If that's the case, who has warned you that your scheduled external beam radiotherapy may affect your eyesight?

Please don't get me wrong, Bret. I don't know all the facts, but from what you've said, I am simply questioning what you've apparently been advised. 

Of course there are risks in all treatments. I know EBRT can cause urinary, bowel, and other problems. However, because it's a  treatment directed at specific areas these problems are usually confined to those areas.

I'm just a bloke who's had PCa and took an interest in the disease. However, I've never heard of EBRT causing or exacerbating eyesight problems. I would at least double check the further lose of vision concern, before rejecting curative treatments and increasing the risk of prostate cancer metastasis.

Edited by member 16 Oct 2026 at 08:57  | Reason: Additional text

User
Posted 16 Oct 2026 at 10:21

Adrian,

I really appreciate the thought you're putting into this. I hadn't thought of the open surgery option but it's definitely worth considering.

You deserve a bit of background. I've had congenital glaucoma all my life and my one remaining eye is battered, fragile and contains bits that normal eyes don't. For the last 20 years my major vision loss has been from a condition called cystoid macular oedema (CMO or CME in the US), which is where fluid pools within the layers of the retina. In the short term it makes vision very fuzzy. In the longer term it usually resolves, but in my case the vision never quite gets back to what it was. The longer the attack lasts, the greater the vision loss is likely to be.

The Trendelenburg position is a no-go for my eye since it can cause catastrophic vision loss even in normal healthy eyes. It causes the intraocular pressure to rise, sometimes by quite a lot. My eye wouldn't stand a chance, and I could end up with optic nerve damage, a lot of CMO, and a detached retina.

But that's not all. It's not very well researched, but a strong inflammatory response in the body can trigger an attack of CMO. (I think it's the cytokine surge.) Radiotherapy is pretty much designed to generate inflammation, and the effects can go on for months. I really think it would finish my vision off, though I am seeing my ophthalmologist next week and can go over the ground with him again.

I'm also very iffy about surgery. Surgery causes inflammation too, particularly if there's any whiff of infection. As I said, I had a routine hernia op last year and the resulting CMO produced long-term vision loss. It might be manageable for a short period if we jumped on the CMO pre-emptively with steroids and NSAIDs.

So I'd really rather go for something less likely to cause inflammation, if at all possible, or just go for hormone therapy alone and settle for a much shorter life. I have feared blindness all my life and I'm too old now to cope with all the adaptations I'd need to make. Even my wife - who is pretty cut up generally about all this - agrees with me on that point.

Many thanks again,

Bret

Edited by member 16 Oct 2026 at 10:23  | Reason: improve clarity

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User
Posted 15 Oct 2026 at 10:54

Hi, again Bret

I'm not medically trained and you have not given a full diagnosis of your prostate cancer, however, I believe it is rare for HIFU to be used on Gleason 8(4+4) disease. The reasons being it is aggressive and high risk. As far as I'm aware, HIFU is deemed more suitable for low and intermediate disease.

Edited by member 15 Oct 2026 at 15:58  | Reason: Brett to Bret. 🙂

User
Posted 15 Oct 2026 at 11:04

Hi Bret,

You have 3 hurdles to jump if you want to be considered for Focal Treatment, be it HIFU, Cryotherapy or Nanoknife (Irreversible Electroporation). You must be assessed as being a suitable candidate, be prepared to travel to London or one of the other centres in Southern England as I don't think they do Focal in Scotland. Also, I don't know that Scottish patients would be treated by NHS England so you would have to check. You could be treated privately in England or abroad if suitable but the procedure is not cheap and with HIFU a second application is often necessary as was in my case.

Edited by member 16 Oct 2026 at 16:43  | Reason: spelling

Barry
User
Posted 15 Oct 2026 at 21:55

Thanks to you both, Adrian and Barry, for quick and helpful responses. I'm on a very steep learning curve here but what you both say chimes with what I am finding out for myself. It's helpful to know that I'm not missing anything obvious.

My problem is that it looks like open beam radiotherapy will create so much inflammation in my body that it will seriously damage my reduced and delicately-balanced vision. I'd prefer a shorter life being able to see, rather than a longer one being blind. Currently I'm thinking I might take just the hormone therapy (which starts tomorrow), letting Stage 3b become stage 4, and hoping I'll be lucky managing the metastases.

As John Lennon said, "Life is what happens to you while you're busy making other plans."

Bret

User
Posted 15 Oct 2026 at 23:28

Originally Posted by: Online Community Member
My problem is that it looks like open beam radiotherapy will create so much inflammation in my body that it will seriously damage my reduced and delicately-balanced vision. I'd prefer a shorter life being able to see, rather than a longer one being blind. Currently I'm thinking I might take just the hormone therapy (which starts tomorrow), letting Stage 3b become stage 4, and hoping I'll be lucky managing the metastases.

Hi again, Bret.

As I said earlier, mate, I'm not medically trained, but I'm sure there must be curative treatments available for your T3b prostate cancer which will not risk worsening your eye condition.

In your other conversation you mentioned:

Originally Posted by: Online Community Member
An MDT that met this morning has taken RALP off the table. They seem to have reached the same conclusion I was rapidly getting to: that my eyesight would be lucky to survive the operation, let alone the recovery. So it's hormone treatment on Friday, followed by external beam radiotherapy, if I think it's safe enough.

It's rare, but not unknown, to have surgery on T3b disease. Even when surgery is used in cases of T3b, it's usually backed up with radiotherapy and HT. In that conversation they appear to have considered RALP, and only ruled it out because it's done in the Trendelenburg position, where you're lying tilted with your head tilted below your feet. I can understand why that might put additional pressure on your eyes, and why it might not be a suitable treatment option.  However, if that's their only concern, why aren't they considering open surgery where your body is level during the operation. 

It seems they are happy to proceed with EBRT and HT, which is the standard way of treating T3b PCa.

If that's the case, who has warned you that your scheduled external beam radiotherapy may affect your eyesight?

Please don't get me wrong, Bret. I don't know all the facts, but from what you've said, I am simply questioning what you've apparently been advised. 

Of course there are risks in all treatments. I know EBRT can cause urinary, bowel, and other problems. However, because it's a  treatment directed at specific areas these problems are usually confined to those areas.

I'm just a bloke who's had PCa and took an interest in the disease. However, I've never heard of EBRT causing or exacerbating eyesight problems. I would at least double check the further lose of vision concern, before rejecting curative treatments and increasing the risk of prostate cancer metastasis.

Edited by member 16 Oct 2026 at 08:57  | Reason: Additional text

User
Posted 16 Oct 2026 at 10:21

Adrian,

I really appreciate the thought you're putting into this. I hadn't thought of the open surgery option but it's definitely worth considering.

You deserve a bit of background. I've had congenital glaucoma all my life and my one remaining eye is battered, fragile and contains bits that normal eyes don't. For the last 20 years my major vision loss has been from a condition called cystoid macular oedema (CMO or CME in the US), which is where fluid pools within the layers of the retina. In the short term it makes vision very fuzzy. In the longer term it usually resolves, but in my case the vision never quite gets back to what it was. The longer the attack lasts, the greater the vision loss is likely to be.

The Trendelenburg position is a no-go for my eye since it can cause catastrophic vision loss even in normal healthy eyes. It causes the intraocular pressure to rise, sometimes by quite a lot. My eye wouldn't stand a chance, and I could end up with optic nerve damage, a lot of CMO, and a detached retina.

But that's not all. It's not very well researched, but a strong inflammatory response in the body can trigger an attack of CMO. (I think it's the cytokine surge.) Radiotherapy is pretty much designed to generate inflammation, and the effects can go on for months. I really think it would finish my vision off, though I am seeing my ophthalmologist next week and can go over the ground with him again.

I'm also very iffy about surgery. Surgery causes inflammation too, particularly if there's any whiff of infection. As I said, I had a routine hernia op last year and the resulting CMO produced long-term vision loss. It might be manageable for a short period if we jumped on the CMO pre-emptively with steroids and NSAIDs.

So I'd really rather go for something less likely to cause inflammation, if at all possible, or just go for hormone therapy alone and settle for a much shorter life. I have feared blindness all my life and I'm too old now to cope with all the adaptations I'd need to make. Even my wife - who is pretty cut up generally about all this - agrees with me on that point.

Many thanks again,

Bret

Edited by member 16 Oct 2026 at 10:23  | Reason: improve clarity

User
Posted 16 Oct 2026 at 11:32

Bret, thanks for your very thorough and enlightening reply. I am empathetic to you and the situation you find yourself in. I had/have ischemic heart disease which complicated my PCa treatment. Dealing with our disease is very difficult. Dealing with it when you've got comorbidities can make things even worse.

I had to prompt liaison between my urologist and a cardiologist to agree on a suitable PCa treatment for me. 

I'm sure that getting some sort of discussion going between your cancer consultants and your ophthalmologist might prove worthwhile.

Being 'cancer free' and maintaining your eyesight would be ideal. I hope it's somehow achievable. 

Best wishes to your wife, I know how difficult things were for mine whilst we were trying to sort out my treatment plan.

Good luck to you both.👍

Edited by member 16 Oct 2026 at 11:58  | Reason: Typo

User
Posted 16 Oct 2026 at 13:18

Thank you. Why aren't well people this nice to each other?  Bret

User
Posted 16 Oct 2026 at 17:13

Adrian,

I asked about open surgery and was told they also used the Trendelenburg position for that. She thought it was pretty standard. Thanks again for the thought, though. It was worth checking.

Bret

 
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