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Salvage options after radiotherapy

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User
Posted 15 Mar 2025 at 14:58

Hi - I'm wondering if anyone on here has had experience with HIFU or Cryo or nanoknife as a salvage treatment ?

I was diagnosed PC in 2017 (PSA 26.9) - it was contained with a gleason of 4+3  T2.

At that time I looked at my options and opted for Radiotherapy. Since then I have had 7 years of of fairly stable PSA results (less than 1.0) and very little in the way of side effects. However my PSA started rising about six months ago and is presently around 3.9 but with no other effects. MRI and PET scans have confirmed probable cancer return to the prostate without spread - (increased prostate avidity on left side, no lymphadenopathy).

I am scheduled in for a biopsy to confirm this.

Where I live in Wales my options for salvage treatment are basically only surgery. My oncologist has explained if I was older they might offer hormone treatment but because I am 67 its not really a viable option for long term treatment.

I have investigated a lot on the internet and have read about using Cryo, HIFU, and nanoknife treatments as salvage options for cancer returning to the prostate after radiotherapy.  Because none of these treatments are available in my area the medical professionals are very reticent to even discuss these treatments as an option so I am left relying on DR GOOGLE.

My main concern is that salvage surgery after radiotherapy is much riskier and usually comes with a very high risk of bladder incontinence and the almost certain loss of sexual function. There is also some risk of rectal damage. All treatments including surgery seem to offer a 50% chance of re-occurrence so if one of the focal treatments could be used instead of surgery to treat me with a much reduced risk of major side effects I feel I should definitely investigate this.

So with this in mind does anyone on here have any experience of using these focal treatments as a salvage option.

 

User
Posted 16 Mar 2025 at 10:28

I don't know what NHS Wales allows in terms of referrals to England, but I would try to get a referral to UCLH or Imperial with a view to assessing suitability for salvage focal therapy.

If you do end up going salvage prostatectomy, Guys has a chap who specialises in it.

User
Posted 16 Mar 2025 at 22:26

Agree with Andy. UCLH get a lot of referrals as they have the most experience of Focal Treatment in the UK and would be able to advise which treatment, if any you were most suited for.. However, I don't know whether they would consider you as a NHS patient as you are in Wales, so you would have to establish this first. They would consider you as a private patient if referred but this would be expensive for many men unless you have private Insurance.for any Prostate procedure.

I have to warn you that from my experience of UCLH and with other cases I know of, that the admin side was and may still be very slow to respond, maybe in part due to the large number of referrals made to them.

In short, I had RT in 2008 but with a very slow and persistantly rising PSA over the years was referred by my monitoring hospital for possible treatment within a Focal Treatment Trial at UCLH where the position of my tumour favourerd HIFU which I had in 2015. This reduced my PSA but it then began to increase again and UCLH eventually gave me a second application of HIFU in 2021. This resulted in my PSA dropping further and settling between 0.05 and 0.06, Subsequent MRI's have been clear (last being in December 2024) and I have been told that I am still in remission but am still monitored 6 monthly for PSA by my local surgery nurse and go to London every other year for a high quality MRI.

So in my case it took two applications to achieve the desired result. If it had not worked I would be on HT now or had an RP, neither of which I wanted.

Men can respond differently to treatment of any kind both in terms of it being successful and experiencing various and differing side effects. Certainly, in my case, and I think this is often the case with HIFU, I found it easy with quick recovery and no further side effects beyond what RT had caused years before. If my tumour had not been reachable with the HIFU probe I would have been given Cryotheraphy. Nanoknife is now another option UCLH do.

Edited by member 17 Mar 2025 at 14:53  | Reason: Wrong letter typed

Barry
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User
Posted 15 Mar 2025 at 20:30
Check out Old Barry. He had focal treatment successfully after radiotherapy.
User
Posted 16 Mar 2025 at 10:28

I don't know what NHS Wales allows in terms of referrals to England, but I would try to get a referral to UCLH or Imperial with a view to assessing suitability for salvage focal therapy.

If you do end up going salvage prostatectomy, Guys has a chap who specialises in it.

User
Posted 16 Mar 2025 at 21:27

Many thanks for your reply - if I do opt for surgery my consultant will do it here in wales - surprisingly they now do salvage surgery robotically whereas a few years ago they preferred to do traditional surgery for salvage after radiotherapy.

I think my oncologist was putting in some sort of outside area funding application for me but I think they would prefer if I do the leg work in terms of finding a consultant who can advise me if focal treatment is a viable option.  My urologist and oncologist are both excellent but seem very reticent to talk about the focal therapy options as a possible alternative- it’s understandable I suppose if it’s not treatment they are familiar with but it kind of makes me feel like I’m being disrespectful them by seeking out an outside expert.

User
Posted 16 Mar 2025 at 22:26

Agree with Andy. UCLH get a lot of referrals as they have the most experience of Focal Treatment in the UK and would be able to advise which treatment, if any you were most suited for.. However, I don't know whether they would consider you as a NHS patient as you are in Wales, so you would have to establish this first. They would consider you as a private patient if referred but this would be expensive for many men unless you have private Insurance.for any Prostate procedure.

I have to warn you that from my experience of UCLH and with other cases I know of, that the admin side was and may still be very slow to respond, maybe in part due to the large number of referrals made to them.

In short, I had RT in 2008 but with a very slow and persistantly rising PSA over the years was referred by my monitoring hospital for possible treatment within a Focal Treatment Trial at UCLH where the position of my tumour favourerd HIFU which I had in 2015. This reduced my PSA but it then began to increase again and UCLH eventually gave me a second application of HIFU in 2021. This resulted in my PSA dropping further and settling between 0.05 and 0.06, Subsequent MRI's have been clear (last being in December 2024) and I have been told that I am still in remission but am still monitored 6 monthly for PSA by my local surgery nurse and go to London every other year for a high quality MRI.

So in my case it took two applications to achieve the desired result. If it had not worked I would be on HT now or had an RP, neither of which I wanted.

Men can respond differently to treatment of any kind both in terms of it being successful and experiencing various and differing side effects. Certainly, in my case, and I think this is often the case with HIFU, I found it easy with quick recovery and no further side effects beyond what RT had caused years before. If my tumour had not been reachable with the HIFU probe I would have been given Cryotheraphy. Nanoknife is now another option UCLH do.

Edited by member 17 Mar 2025 at 14:53  | Reason: Wrong letter typed

Barry
 
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