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User
Posted 11 Jun 2020 at 16:03

Hi, Just wondering if anyone has had HIFU treatment with regards a T2 upper or Gleason 4+3 score? Would appreciate any information as regards problems such as re-occurrence of the cancer etc. Also whether you needed hormone treatment?

Many thanks!

User
Posted 14 Jun 2020 at 14:21

Good points made by both Peter and Dave.

For my husband choosing focal treatment in his 50’s following a G6 (3+3) diagnosis has definitely been about choosing Quality of Life in his 50’s . Clearly with a high risk diagnosis decisions would be different. Lyn makes a valuable point too about needing resources to see through your choices or being fully aware of impact of not going fully ‘NHS’.

For my husband the lack of side effects in these 2.5 years has been really important with no interruption to a career he loves, size and use of penis and no incontinence ( however mild) to impact on  his life.

The side effects of a radical treatment being simply pushed back ( if indeed it comes to a radical treatment ) have allowed full enjoyment of life to continue; our sons weekend wedding in France last year, the road trip we took after, the joy of his career and lazy Sunday afternoons having sex . without these things ( or them being impacted by worry about incontinence pads and leaks, a libido but ED ) his mental health could be very different to how it is today.

He has a prostate, a history of prostate cancer in the family, a history of PCa tumours  so I understand why some would think it crazy not to have it removed immediately. 

However if we had gone for removal in 2017 life in the last 2.5 years could have been very different and things have already progressed ( ie NeuroSafe was not on the table in 2017 but it is now)

His PSA is down to 1.31 post January HIFU with zoom consult with his monitoring professor tomorrow.  She is a full NHS employed professor of urology and doesn’t seem to think this path is crazy for a man in his 50s. 

I have absolutely nothing to benefit from other people and their choices but when we first  got a diagnosis this forum was the best source of information especially about the reality of ED for many and potential incontinence for some. The pioneers on this site ( especially Barry and Chris) have been invaluable in keeping people informed that it is OK to question and be involved in your own  choice of path. The personal threads such as Lyns ‘ED’ thread added reality to the quoted stats given by our diagnostic surgeon. 

Overall I don’t think people should be discouraged from telling their stories, or sharing their knowledge. For us it’s true we may have chosen an ‘under treatment’ but it has been a very well considered decision with full medical support. 

Clare

 

 

User
Posted 13 Jun 2020 at 14:10
Andrew,

The men I referred to on YANA are mentors not on Chatrooms.

Have you ever had any discussions with leading focal urologists?

Did you watch the videos on Andy's Blog I linked to or have heard lectures on the subject?

Show me where I have suggested any man should have have ANY particular treatment including HIFU. I haven't and have even written previously that people here should NOT recommend a treatment to a man because nobody on this forum is qualified to do so and even if they were they still should not do so without knowing the individual's histology and possible contraindications. I have merely drawn attention to treatments that are possibilities. My thread about Lutinium 177 and several others treatments that not all men or even some consultants are aware of illustrates this. As I have said on many occasions, the treatment a man opts for is up to him provided he is suitable.

Conversely, have you considered that by trying to knock HIFU (and implicitly other focal therapies), you could be encouraging men to have more radical treatments instead, with inherent adverse side effects because they feel they need treatment which in some cases might not be necessary and might be less life changing if a focal therapy was used instead?

When after reading about the development of Hadron Therapy and published papers on results from Japan, I tracked down one of the advocates for it who was an expert on radiation. When I told the Marsden, whose care I was under at the time, that I was having my RT treatment in Germany which would be more intense and boosted with carbon ions, I was cautioned that I would be wasting my money. I mentioned the name of my second opinion and was told that he was out there on his own. Since that time further Hadron facilities have been built in Germany, Italy and many other countries. In typical British fashion we now at last have one Hadron facility at The Christie in Manchester to be followed by the one being constructed at UCLH in London. Both of these only have a cyclotron rather than a synchrotron so will only be available to treat with protons rather than carbon ions and other ions. And guess what, they are also treating PCa with proton beam according to Professor M E, so my doubted second opinion has been proved right!

By the way, when a vaccine is found for Covid 19, I take it that you will want to wait for over 5+ years to show it has no long term adverse effects before having it?

Barry
User
Posted 13 Jun 2020 at 18:36

I view all prostate Cancer treatments as fundamentally buying you time as one has to be mindful that at any stage it’s still a metastatic disease which is slowly teasing itself out of the extracellular matrix. If a degree of luck is on our side it will delay things until death from natural causes occurs. 


I steered away from focal therapy as in my case the cancer was multifocal but generally  prostate cancer tends to be a multifocal disease. A friend of mine had 9 areas treated with proton beam and has had a fantastic outcome two years down the line. Given what we know about prostate cancer pathology I think it’s reasonable to predict there will be further tumours at some point on the time line. 

in my case with full gland removal the clinical predictions are cure as good negative margins but I would still expect a slap in the face at some point. My gamble is this will be sufficient enough to put me in the reaches of new/breakthrough/enhanced treatments such as immunotherapy. We roll the dice and hope our gamble will pay off with something near normality en route 🥴🍻

Edited by member 13 Jun 2020 at 18:39  | Reason: Not specified

User
Posted 13 Jun 2020 at 00:31

Where to start? Everybody is entitled to an opinion but it makes sense to have a more detailed knowledge of HIFU, what it sets out to do and it's appropriate applications before trying to cast aspersions and suggest men have a different treatment, which was one of the suggestions by a poster here and a charge that can be levelled at some urologists and radiologists even.

So let's start with Peter's comment about the largest HIFU study to date and carried out in 6 centres not being peer reviewed. The authors of this study include the most highly regarded and respected focal orientated urologists in the UK and indeed who are known Internationally, so I think the results of the study would not be contested. I am not an expert but first started to look at HIFU in 2007 and have personally discussed aspects of HIFU with 3 of the authors of that study and indeed had my HIFU administered by one of them. This is in addition to watching many lectures on the subject, so my opinion is not superficial. I wouldn't have had HIFU without carefully considering it and I see it is now supported by The Royal Marsden as well as UCLH so that's the UK's top two cancer hospitals.

Of course one has to consider old cases because that's the only way to check how successful treatment has been and is proving because HIFU is a treatment for early and not advanced PCa, Gleason 6 and 7 patients with early staging will be the majority of patients treated. It's only classed as experimental because it lacks long term assessment that only time can provide.

It is acknowledged that many men have radical treatment with associated side effects unnecessarily (overtreatment). This is because if left untreated their PCa would not have developed in their natural lifetime to the point that it would have impacted them. (This is one of the reasons given for not having a national screening programme). HIFU is a niche treatment for suitable men between AS and and radical treatment. It means they have treatment with relatively minor side effects that may provide a cure or at least beat back the cancer for some time with the possibility of repeat HIFU or more radical treatment subsequently if required. So some men will be spared from the debilitating effects of radical treatment.

As regards HIFU not being a proven cure Andrew, I did suggest that you check the YANA site where men had not experienced a recurrence for over 8 years and I am sure that some of the focal urologists could relate cases for longer than this. But what period would you consider necessary for a treatment to be considered a cure? We know of men who have gone 10 years after RT and were even told they had been cured and then had a recurrence. So it can happen years later. Radiotherapy eradicated the cancer in my Prostate and I had much stronger RT than you get in the UK, yet a tumour subsequently grew in it. HIFU burnt this out but another is growing so this may need further focal treatment. Let's agree you see it differently to me but there are a growing number that see it like me. A considerable number of men who have Prostatectomy also need RT and HIFU or other salvage treatment after failed RT so why not accept that HIFU like other treatments will have some failures.

Incidentally, HIFU costs less than surgery as mentioned by Professor M E in the webcast link Lyn. I think those considering HIFU or commenting on it, would do well to view these two videos, (the other one being tagged 2) even though they are a few years old and learn more about the treatment.

See next post as this rotten forum format will not allow me to paste in the link here!!!

Edited by member 13 Jun 2020 at 01:27  | Reason: Not specified

Barry
User
Posted 14 Jun 2020 at 06:37
Dave, the only point I would make is that age is a factor in how you cope with surgery, at the very least, so it's not necessarily "all good" batting the ball down the road for 10 years. Of course, against that, there's the possibility that medical science advances and new treatments are available. I don't think there's any guaranteed 'winning strategy'.
User
Posted 14 Jun 2020 at 21:33

Hi Clare,

Excellent post. It just shows how the person is more important than the cancer. None of us wants to be dealt this s**t card, but once the hand is dealt you've just got to play it as best as you can. Treatment is as much about one's attitude to risk as the actual statistics, and what one wants out of life. No wonder we have such a wide range of opinions when it comes to treatment.

Dave

User
Posted 11 Jun 2020 at 23:02

Chris,

I have been a regular member of this forum since 2008 and believe that in this time fewer than 5 members have had or reported on their HIFU as a Primary treatment, so only a small number on which to judge effectiveness of the treatment. Certainly, HIFU lacks long term assessment because it is a comparatively new therapy compared to surgery and radiotherapy. So it's incorrect to say surgery and RT have enormously better long-term success rates when only time can establish whether this is the case. As regards the short to medium term success, the latest major study in 2016 suggested that HIFU for suitable men gave comparable results to surgery and RT but also with significantly less side effects. Here is a link - https://www.imperial.ac.uk/news/187086/prostate-cancer-ultrasound-treatment-effective-surgery/#:~:text=The%20cancer%20survival%20rate%20from%20surgery%20and%20radiotherapy%20is,per%20cent%20at%20five%20years.&textThe%20research%20also%20showed%20the,and%2015%20per%20cent%20respectively.

 

Some eligible men may feel the milder side effects of HIFU (which can be readily repeated if needed), or followed by more radical treatment if called for, outweigh long term uncertainty of long term results.

Edited by member 11 Jun 2020 at 23:03  | Reason: to highlight link

Barry
User
Posted 13 Jun 2020 at 01:00

http://andrewhamm.co.uk/prostate/blogdetails.htm

 

Edited by member 13 Jun 2020 at 01:00  | Reason: Not specified

Barry
User
Posted 13 Jun 2020 at 06:26
Great post Barry.
User
Posted 13 Jun 2020 at 23:02

Hi thanks for all your contributions. Hifu is irrelevant to me I have already had treatment, I guess there is a possibility I may need it in the future as a salvage treatment. So the following are just my thoughts. 

If we accepted that hifu didn't cure but merely delayed the disease by five years, would it still not be a valid early treatment?  The side effects of standard treatment are not pleasant. If the side effects from hifu are not too troublesome and if it does not preclude later more aggresive treatment then as long as surveillance was kept up after treatment it could give many more years of good QOL before a more aggressive treatment was needed. It may not be cost effective as people may need two treatments.

There's a lot of 'ifs' in the above paragraph. It would probably be riskier than going for the aggressive treatment straight away, but it may be curative, and it may give longer QOL.

 

Dave

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User
Posted 11 Jun 2020 at 20:28
HIFU doesn't have great results as a primary treatment, Ian. I've been on this forum for a while now, and I can think of nobody who's had HIFU who hasn't had a recurrence and required subsequent treatment. It seems to be a delaying action at best rather than a permanent fix. If I were you I'd go for surgery or RT - they have enormously better (and roughly similar) long-term success rates.

Best wishes,

Chris

User
Posted 11 Jun 2020 at 23:02

Chris,

I have been a regular member of this forum since 2008 and believe that in this time fewer than 5 members have had or reported on their HIFU as a Primary treatment, so only a small number on which to judge effectiveness of the treatment. Certainly, HIFU lacks long term assessment because it is a comparatively new therapy compared to surgery and radiotherapy. So it's incorrect to say surgery and RT have enormously better long-term success rates when only time can establish whether this is the case. As regards the short to medium term success, the latest major study in 2016 suggested that HIFU for suitable men gave comparable results to surgery and RT but also with significantly less side effects. Here is a link - https://www.imperial.ac.uk/news/187086/prostate-cancer-ultrasound-treatment-effective-surgery/#:~:text=The%20cancer%20survival%20rate%20from%20surgery%20and%20radiotherapy%20is,per%20cent%20at%20five%20years.&textThe%20research%20also%20showed%20the,and%2015%20per%20cent%20respectively.

 

Some eligible men may feel the milder side effects of HIFU (which can be readily repeated if needed), or followed by more radical treatment if called for, outweigh long term uncertainty of long term results.

Edited by member 11 Jun 2020 at 23:03  | Reason: to highlight link

Barry
User
Posted 12 Jun 2020 at 00:35
I think one of the key considerations is that, if paying for it privately, there is enough money to have it repeated at a later date if needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jun 2020 at 06:08

Barry, I had a look at that study:

1. I cannot find any note that it has been peer reviewed and it seems to be the only study;
2. It is a small sample (as the author admits in the discussion section) and is somewhat slewed as it includes Gleason 6 cases from earlier years;
3. Perhaps most importantly, this is at 5 years only.

It's also not certain that the study is comparing like with like when discussing outcomes vs RT & RP - are the patients for the 3 sets of treatments roughly the same (a problem when you have such a small sample)?

I'd therefore suggest that the results should be treated with some caution.

Edited by member 12 Jun 2020 at 09:39  | Reason: Not specified

User
Posted 12 Jun 2020 at 07:33

Morning Chris and Others, This is a very difficult call. Chris, I take on board your point of view that the men you have known on here have all had reoccurrence problems but then that is slightly countered by Barry having said there have only been five but then five out of five is still not very encouraging. However, it was the study of 2016 reported in 2018 (perhaps a little rough around the edges) that seemed very positive and encouraging. 625 men and producing results - it would appear - that match other forms of treatment without too many side effects! 

I have been offered brachytherapy and, luckily due to where I live, I was able to discuss the procedure with a leading professor in the field - via the NHS. He certainly wasn't keen on HIFU! However, he did say that I would, with brachytherapy have 6 months of incontinence and would have impotency problems! These side effects would be minimalized through HIFU. He did urge the need for hormone treatment which I noticed through his handbook he gave me ( a little outdated ) that hormone treatment years ago was only been used with men whose cancer had spread outside the prostate. The HIFU trial I am being offered, which you are randomised in, has three routes 1. HIFU only 2. HIFU with one type of hormone 3.HIFU with a different hormone. I can't see any mention of hormone treatment being used in the 2016 HIFU study and wondering how important hormone treatment might be?

I am aware, although the treatment machinery has not changed that much in the last ten years, that the scanning of the prostate apparently has, which may now give better results. I am hopeful of being able to speak to the professor leading the trials.

Any further thoughts are most welcome!

Ian

Edited by moderator 12 Jun 2020 at 20:05  | Reason: Medical Professionals name removed.

User
Posted 12 Jun 2020 at 10:12

Hi Ian

Have you considered a nerve sparing prostectomy? At T2 I assume that would be a viable option for you?

Edited by member 12 Jun 2020 at 10:27  | Reason: Not specified

User
Posted 12 Jun 2020 at 10:25

Hi Chris, Many thanks for the suggestion but through my local NHS hospital they don't appear to offer it. When I spoke with a consultant as regards surgery and I mentioned nerve sparing he said they didn't use that technique. I might have another look. 

Kind regards,

Ian

User
Posted 12 Jun 2020 at 10:29

Someone like Lyn can advise better than me but I would of thought it was a very viable option for you. Certainly that was the way i went and am happy so far with how things went

User
Posted 12 Jun 2020 at 14:49

It would be interesting to know where in the country you are based, Ian, but I suspect there has been some misunderstanding or miscommunication:

- nerve sparing surgery is available at all hospitals with a urological surgery provision - whether or not a patient can have nerve sparing is determined by where in the prostate the cancer is thought to be. Open surgery, keyhole (LRP) and robotic (Da Vinci) all allow for nerve sparing when clinically appropriate

- key hole RP is available in all areas - if the local hospital doesn't have a surgical theatre provision, the urologists will usually work out of a large 'hub' hospital in the region

- robotic RP is not available in all areas but the man has a right to ask to be referred to another hospital where it is offered

It will be useful to clarify whether your specialist meant that robotic / da vinci RP isn't offered at your hospital because it is too small, but is offered at a larger hospital somewhere in the same NHS trust or that they have decided that nerve sparing is not available to you because they believe the tumour(s) is / are close to the nerve bundles.

2. I am surprised that the specialist said brachy leads to 6 months of incontinence and ED - that's not the case for most men. The main attraction of brachy for many men is that there are fewer side effects than external radiotherapy or surgery. Did he actually say that there was a potential for some incontinence problems for a few months? Generally speaking, ED caused by brachy develops over a long period of time (sometimes years later) rather than immediately.

3. People's approach to HIFU - someone paying huge amounts of money for what is still an experimental treatment in the belief that it is a magic cure risks being very, very disappointed as the recurrence rate does still seem to be quite high. The research quoted above is small scale data but at the moment it is the best we have in Europe. Having said that, with a low rate of side effects some men will be happy to go for HIFU in the hope that it is enough and knowing that it can be repeated if necessary (something that can't be said of most other treatments). There is a whole other set of people who, perhaps altruistically, agree to be part of a trial knowing that HIFU is looking exciting, has fewer side effects than their other options, might not lead to full remission but is no more likely to lead to recurrence than the well established treatments, and understand that if no-one is prepared to take part in trials like these we will never get better data than the 2016 project.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jun 2020 at 00:14

If you haven’t read this it is worth a read:

https://prostatecanceruk.org/prostate-information/treatments/hifu

From the main site here. HIFU is not just for older men. My husband had it in February ( aged 56) and the professor who did it is a high volume HIFU specialist.

if he hadn’t had options to go with a focal treatment  he would have picked Brachytherapy as reduced risk of side effects was main driver and over treatment of low risk cancers has been a well reported problem on the UK.

Everyone is different but the full recovery with no  side effects from the HIFU is firmly in the pros column in big black highlighted letters

 

PSA is 1.31 as of last week and we have finally got a zoom consult slot booked on Monday so will see what she thinks.

 

Pre HIFU we consulted with a specialist surgeon  ( specialist in removing treated prostates using Neurosafe also) who reassured their was no rush to take it out and that option is firmly on the table still should it be needed. 

Not sure what your full diagnosis is as of course that impacts decisions massively.

Good luck with your decision, it’s a tricky one, clearly if anyone could have guaranteed  an RP with no ED or incontinence that would be fab  but not even the top surgeons with the best conditions can guarantee that. 

I would recommend investigating NeuroSafe to anyone considering a nerve sparing RP as it seems a no-brainer to me. 

Clare

 

User
Posted 13 Jun 2020 at 00:31

Where to start? Everybody is entitled to an opinion but it makes sense to have a more detailed knowledge of HIFU, what it sets out to do and it's appropriate applications before trying to cast aspersions and suggest men have a different treatment, which was one of the suggestions by a poster here and a charge that can be levelled at some urologists and radiologists even.

So let's start with Peter's comment about the largest HIFU study to date and carried out in 6 centres not being peer reviewed. The authors of this study include the most highly regarded and respected focal orientated urologists in the UK and indeed who are known Internationally, so I think the results of the study would not be contested. I am not an expert but first started to look at HIFU in 2007 and have personally discussed aspects of HIFU with 3 of the authors of that study and indeed had my HIFU administered by one of them. This is in addition to watching many lectures on the subject, so my opinion is not superficial. I wouldn't have had HIFU without carefully considering it and I see it is now supported by The Royal Marsden as well as UCLH so that's the UK's top two cancer hospitals.

Of course one has to consider old cases because that's the only way to check how successful treatment has been and is proving because HIFU is a treatment for early and not advanced PCa, Gleason 6 and 7 patients with early staging will be the majority of patients treated. It's only classed as experimental because it lacks long term assessment that only time can provide.

It is acknowledged that many men have radical treatment with associated side effects unnecessarily (overtreatment). This is because if left untreated their PCa would not have developed in their natural lifetime to the point that it would have impacted them. (This is one of the reasons given for not having a national screening programme). HIFU is a niche treatment for suitable men between AS and and radical treatment. It means they have treatment with relatively minor side effects that may provide a cure or at least beat back the cancer for some time with the possibility of repeat HIFU or more radical treatment subsequently if required. So some men will be spared from the debilitating effects of radical treatment.

As regards HIFU not being a proven cure Andrew, I did suggest that you check the YANA site where men had not experienced a recurrence for over 8 years and I am sure that some of the focal urologists could relate cases for longer than this. But what period would you consider necessary for a treatment to be considered a cure? We know of men who have gone 10 years after RT and were even told they had been cured and then had a recurrence. So it can happen years later. Radiotherapy eradicated the cancer in my Prostate and I had much stronger RT than you get in the UK, yet a tumour subsequently grew in it. HIFU burnt this out but another is growing so this may need further focal treatment. Let's agree you see it differently to me but there are a growing number that see it like me. A considerable number of men who have Prostatectomy also need RT and HIFU or other salvage treatment after failed RT so why not accept that HIFU like other treatments will have some failures.

Incidentally, HIFU costs less than surgery as mentioned by Professor M E in the webcast link Lyn. I think those considering HIFU or commenting on it, would do well to view these two videos, (the other one being tagged 2) even though they are a few years old and learn more about the treatment.

See next post as this rotten forum format will not allow me to paste in the link here!!!

Edited by member 13 Jun 2020 at 01:27  | Reason: Not specified

Barry
User
Posted 13 Jun 2020 at 01:00

http://andrewhamm.co.uk/prostate/blogdetails.htm

 

Edited by member 13 Jun 2020 at 01:00  | Reason: Not specified

Barry
User
Posted 13 Jun 2020 at 06:26
Great post Barry.
User
Posted 13 Jun 2020 at 09:13
Ian, since HIFU is now available in a couple of places on the NHS and this trial seems to have been passed by the ethics panel, it is reasonable to assume the experts don't feel as strongly as Heenan.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jun 2020 at 14:10
Andrew,

The men I referred to on YANA are mentors not on Chatrooms.

Have you ever had any discussions with leading focal urologists?

Did you watch the videos on Andy's Blog I linked to or have heard lectures on the subject?

Show me where I have suggested any man should have have ANY particular treatment including HIFU. I haven't and have even written previously that people here should NOT recommend a treatment to a man because nobody on this forum is qualified to do so and even if they were they still should not do so without knowing the individual's histology and possible contraindications. I have merely drawn attention to treatments that are possibilities. My thread about Lutinium 177 and several others treatments that not all men or even some consultants are aware of illustrates this. As I have said on many occasions, the treatment a man opts for is up to him provided he is suitable.

Conversely, have you considered that by trying to knock HIFU (and implicitly other focal therapies), you could be encouraging men to have more radical treatments instead, with inherent adverse side effects because they feel they need treatment which in some cases might not be necessary and might be less life changing if a focal therapy was used instead?

When after reading about the development of Hadron Therapy and published papers on results from Japan, I tracked down one of the advocates for it who was an expert on radiation. When I told the Marsden, whose care I was under at the time, that I was having my RT treatment in Germany which would be more intense and boosted with carbon ions, I was cautioned that I would be wasting my money. I mentioned the name of my second opinion and was told that he was out there on his own. Since that time further Hadron facilities have been built in Germany, Italy and many other countries. In typical British fashion we now at last have one Hadron facility at The Christie in Manchester to be followed by the one being constructed at UCLH in London. Both of these only have a cyclotron rather than a synchrotron so will only be available to treat with protons rather than carbon ions and other ions. And guess what, they are also treating PCa with proton beam according to Professor M E, so my doubted second opinion has been proved right!

By the way, when a vaccine is found for Covid 19, I take it that you will want to wait for over 5+ years to show it has no long term adverse effects before having it?

Barry
User
Posted 13 Jun 2020 at 18:36

I view all prostate Cancer treatments as fundamentally buying you time as one has to be mindful that at any stage it’s still a metastatic disease which is slowly teasing itself out of the extracellular matrix. If a degree of luck is on our side it will delay things until death from natural causes occurs. 


I steered away from focal therapy as in my case the cancer was multifocal but generally  prostate cancer tends to be a multifocal disease. A friend of mine had 9 areas treated with proton beam and has had a fantastic outcome two years down the line. Given what we know about prostate cancer pathology I think it’s reasonable to predict there will be further tumours at some point on the time line. 

in my case with full gland removal the clinical predictions are cure as good negative margins but I would still expect a slap in the face at some point. My gamble is this will be sufficient enough to put me in the reaches of new/breakthrough/enhanced treatments such as immunotherapy. We roll the dice and hope our gamble will pay off with something near normality en route 🥴🍻

Edited by member 13 Jun 2020 at 18:39  | Reason: Not specified

User
Posted 13 Jun 2020 at 23:02

Hi thanks for all your contributions. Hifu is irrelevant to me I have already had treatment, I guess there is a possibility I may need it in the future as a salvage treatment. So the following are just my thoughts. 

If we accepted that hifu didn't cure but merely delayed the disease by five years, would it still not be a valid early treatment?  The side effects of standard treatment are not pleasant. If the side effects from hifu are not too troublesome and if it does not preclude later more aggresive treatment then as long as surveillance was kept up after treatment it could give many more years of good QOL before a more aggressive treatment was needed. It may not be cost effective as people may need two treatments.

There's a lot of 'ifs' in the above paragraph. It would probably be riskier than going for the aggressive treatment straight away, but it may be curative, and it may give longer QOL.

 

Dave

User
Posted 14 Jun 2020 at 06:37
Dave, the only point I would make is that age is a factor in how you cope with surgery, at the very least, so it's not necessarily "all good" batting the ball down the road for 10 years. Of course, against that, there's the possibility that medical science advances and new treatments are available. I don't think there's any guaranteed 'winning strategy'.
User
Posted 14 Jun 2020 at 13:04

Thanks Peter two really good points about advancing age and advancing technology. I just wanted to get my thoughts together, it's not relevant to me but it may inform others. 

Dave

User
Posted 14 Jun 2020 at 14:21

Good points made by both Peter and Dave.

For my husband choosing focal treatment in his 50’s following a G6 (3+3) diagnosis has definitely been about choosing Quality of Life in his 50’s . Clearly with a high risk diagnosis decisions would be different. Lyn makes a valuable point too about needing resources to see through your choices or being fully aware of impact of not going fully ‘NHS’.

For my husband the lack of side effects in these 2.5 years has been really important with no interruption to a career he loves, size and use of penis and no incontinence ( however mild) to impact on  his life.

The side effects of a radical treatment being simply pushed back ( if indeed it comes to a radical treatment ) have allowed full enjoyment of life to continue; our sons weekend wedding in France last year, the road trip we took after, the joy of his career and lazy Sunday afternoons having sex . without these things ( or them being impacted by worry about incontinence pads and leaks, a libido but ED ) his mental health could be very different to how it is today.

He has a prostate, a history of prostate cancer in the family, a history of PCa tumours  so I understand why some would think it crazy not to have it removed immediately. 

However if we had gone for removal in 2017 life in the last 2.5 years could have been very different and things have already progressed ( ie NeuroSafe was not on the table in 2017 but it is now)

His PSA is down to 1.31 post January HIFU with zoom consult with his monitoring professor tomorrow.  She is a full NHS employed professor of urology and doesn’t seem to think this path is crazy for a man in his 50s. 

I have absolutely nothing to benefit from other people and their choices but when we first  got a diagnosis this forum was the best source of information especially about the reality of ED for many and potential incontinence for some. The pioneers on this site ( especially Barry and Chris) have been invaluable in keeping people informed that it is OK to question and be involved in your own  choice of path. The personal threads such as Lyns ‘ED’ thread added reality to the quoted stats given by our diagnostic surgeon. 

Overall I don’t think people should be discouraged from telling their stories, or sharing their knowledge. For us it’s true we may have chosen an ‘under treatment’ but it has been a very well considered decision with full medical support. 

Clare

 

 

User
Posted 14 Jun 2020 at 21:33

Hi Clare,

Excellent post. It just shows how the person is more important than the cancer. None of us wants to be dealt this s**t card, but once the hand is dealt you've just got to play it as best as you can. Treatment is as much about one's attitude to risk as the actual statistics, and what one wants out of life. No wonder we have such a wide range of opinions when it comes to treatment.

Dave

 
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