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User
Posted 30 Sep 2024 at 21:32

Hi Everyone,

Davey here, Hope everyone is ok, or as good as can be.

I was diagnosed last year with Prostate Cancer (57 yro) This diagnosis was 3 + 4 with 80 percent of the growth a 3 and 20% a 4.

They recommended Active Surveillance with Biopsies and Blood tests. I agreed, but recently my PSA went from 6 to 7, so I'm pushing for treatment.

I was originally looking at Brachytherapy, but after speaking with the Urologist recently, he said I could be a candidate for HIFU Focal therapy. The upside is less side effects, the downside being longer periods of monitoring with those horrible biopsies. Along with the possibility of re-occurrence.

I think this is something i could live with, I was wondering if anyone in the group has had Focal Therapy, and if they have had positive results, any info at all will be helpful.

Thanks

 

 

 

User
Posted 01 Oct 2024 at 09:43

Hello Davey.

I'm afraid I can't help, but if you put HIFU into the search box, you'll find a few conversations on this treatment.

Best of luck mate.

Edited by member 01 Oct 2024 at 09:45  | Reason: Typo

User
Posted 02 Oct 2024 at 05:45

In our support group, we've had a few men on AS, and in the last year, 2 of them tipped past the point where they needed to switch to active treatment. Both were looking at seed brachytherapy and were candidates. However, the oncologist also offered them the new treatment of just 5 SABR external beam radiotherapy sessions with no hormone therapy, and they took that. Both seem very pleased with the results so far. The treatment is given over 5 consecutive weekdays, often straddling a weekend. A small number of the centres did it every other day instead. One significant advantage is that because side effects of radiotherapy lag a couple of weeks behind the treatment, you don't get the side effects until after finishing the treatment, so you don't have to cope with both at the same time.

This treatment ran as a trial which was successful, and has been adopted. The Centres are still waiting for the official NHS England commissioning for it to come through, but the sites involved in the trial have simply continued offering it anyway.

I suspect this treatment protocol will quickly replace seed brachytherapy once it's rolled out in more centres.

Edited by member 02 Oct 2024 at 05:47  | Reason: Not specified

User
Posted 02 Oct 2024 at 19:41
Further Radiotherapy as salvage treatment could depend on the paths of the original RT.

To revert to the original Focal Treatment referred to by the OP, I had HIFU twice for failed RT. Focal Treatment for treatment can be given to suitable men ass a primary or salvage treatment. A small proportion of men have this compared with Surgery or one of the forms of Radiotherapy. In the UK most men who have Focal treatment have HIFU with a lesser number having Cryotherapy, much depending on the location of the tumour(s).

It is correct that the thinking behind Focal is to eradicate only significant tumour thereby preserving as much function as possible. This can mean that a further treatment is necessary as it was in my case. My last MRI was clear and I have a low and stable PSA so was told I am in remission. After 2 years without one, I am due for another MRI this coming December.

So as it stands, I am happy with HIFU and the fact that was an easy procedure that gave me no side effects. (I should mention that long term side effects of RT stopped my having erections, so I cannot say how HIFU would have affected me in this regard if it had been my primary treatment. However, HIFU is said to be less onerous than Surgery or Radiotherapy in this respect.) Where necessary Surgery or RT can follow Focal Treatment. As with any form of medical intervention there can be failures and a need for further treatment, so a man needs to do his research before making his decision.

Barry
User
Posted 06 Oct 2024 at 12:07

So, I’m currently on AS, have been since diagnosis in January, I was given a Gleason 3+4 T2 with only 10% graded Gleason 4 all localised & contained.
Before diagnosis when I was first being looked at my PSa was 7.40, afterwards went to 6.42 6.50, 6.50. After going on AS my first PSa in March was 6.98, then in June was 6.39 most recent one in September went to 8.22.  I contacted the team and they were happy with that slight increase as my PSa has been relatively stable, they said if it had doubled to around 13 then they would have actioned a response. next psa is December so we’ll see what happens then, but I’m actually happy staying on AS & avoiding any radical treatment at the moment, good possibility that I can stay on it for many years. Plenty of guys been on AS for 8/10 years or more with no major changes in their original results 

User
Posted 06 Oct 2024 at 14:27

Hi Richard.

As you are probably aware many things can cause your PSA to flucuate. Good luck with your blood test in December. Hopefully, it may drop back again.

Always remember mate, keep your active surveillance active, this includes further MRIs and if applicable biopsies. 

Edited by member 07 Oct 2024 at 05:33  | Reason: Redirected to the right poster.🙈

User
Posted 07 Oct 2024 at 23:50

Originally Posted by: Online Community Member

...With Brachytherapy the seeds which stay in,will give some more assurance, not 100 percent but better....

No the seeds will have no radiation after about a year so they will not offer any protection against future cancer.

I think Brachy is an excellent treatment, but I wouldn't want your decision to be influenced by something which is not correct.

Dave

User
Posted 16 Dec 2024 at 16:12

Hi,

I had brachytherapy at the age of 70 with PSA 2.19 Gleason 3+4=7 and 5 cores out of 20 Positive T2 .I think i was very lucky with no real side affects and 8 years on all ok and signed off a couple of years ago.If you click on my Avatar you can see my journey, but you have to scroll down a bit as i messed the gap up😂😂.

If you need any other details i am very happy to help.

Regards John.

 

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User
Posted 01 Oct 2024 at 09:43

Hello Davey.

I'm afraid I can't help, but if you put HIFU into the search box, you'll find a few conversations on this treatment.

Best of luck mate.

Edited by member 01 Oct 2024 at 09:45  | Reason: Typo

User
Posted 01 Oct 2024 at 22:35

Thanks Adrian, much appreciated mate.

After posting, I searched some posts, and as you said once you type HIFU it does bring up some older posts.

The benefits of HIFU is, it targets that particular part of the Prostate, my concern which was realised last night by someone's experience, is going for a PSA test and finding it's come back somewhere else.

I'm still looking at it but also looking back at the Brachytherapy, which is what i was originally looking at. It's a real minefield, trying to preserve your most vital parts as a man.

Hey thanks again

 

 

 

User
Posted 02 Oct 2024 at 05:45

In our support group, we've had a few men on AS, and in the last year, 2 of them tipped past the point where they needed to switch to active treatment. Both were looking at seed brachytherapy and were candidates. However, the oncologist also offered them the new treatment of just 5 SABR external beam radiotherapy sessions with no hormone therapy, and they took that. Both seem very pleased with the results so far. The treatment is given over 5 consecutive weekdays, often straddling a weekend. A small number of the centres did it every other day instead. One significant advantage is that because side effects of radiotherapy lag a couple of weeks behind the treatment, you don't get the side effects until after finishing the treatment, so you don't have to cope with both at the same time.

This treatment ran as a trial which was successful, and has been adopted. The Centres are still waiting for the official NHS England commissioning for it to come through, but the sites involved in the trial have simply continued offering it anyway.

I suspect this treatment protocol will quickly replace seed brachytherapy once it's rolled out in more centres.

Edited by member 02 Oct 2024 at 05:47  | Reason: Not specified

User
Posted 02 Oct 2024 at 08:27

That's very interesting Andy. Thanks for posting. Had I been suitable and been offered that treatment I'd have taken it. It does seem to be taking ages to roll it out which seems ridiculous as it's been reported as being much less costly.

Do you think it could ever been used in salvage treatment?

 

User
Posted 02 Oct 2024 at 12:25

It would depend what the previous treatment was.

It guess it might be used after failed focal therapy.

Something similar has been used for salvage distant mets for around 5 years.

I can't see it being used in any other salvage setting, although we've been talking in another thread about salvage radiotherapy to the prostate following failed prostate radiotherapy if there's a long time since the original treatment, and then a variation might be suitable.

User
Posted 02 Oct 2024 at 19:41
Further Radiotherapy as salvage treatment could depend on the paths of the original RT.

To revert to the original Focal Treatment referred to by the OP, I had HIFU twice for failed RT. Focal Treatment for treatment can be given to suitable men ass a primary or salvage treatment. A small proportion of men have this compared with Surgery or one of the forms of Radiotherapy. In the UK most men who have Focal treatment have HIFU with a lesser number having Cryotherapy, much depending on the location of the tumour(s).

It is correct that the thinking behind Focal is to eradicate only significant tumour thereby preserving as much function as possible. This can mean that a further treatment is necessary as it was in my case. My last MRI was clear and I have a low and stable PSA so was told I am in remission. After 2 years without one, I am due for another MRI this coming December.

So as it stands, I am happy with HIFU and the fact that was an easy procedure that gave me no side effects. (I should mention that long term side effects of RT stopped my having erections, so I cannot say how HIFU would have affected me in this regard if it had been my primary treatment. However, HIFU is said to be less onerous than Surgery or Radiotherapy in this respect.) Where necessary Surgery or RT can follow Focal Treatment. As with any form of medical intervention there can be failures and a need for further treatment, so a man needs to do his research before making his decision.

Barry
User
Posted 03 Oct 2024 at 00:17

Thanks Andy,

This is good to know, as I'm exploring options, I'll look into those you have posted.

Cheers

 

User
Posted 03 Oct 2024 at 00:21

Wow this is totally a minefield, Thanks Barry

User
Posted 06 Oct 2024 at 12:07

So, I’m currently on AS, have been since diagnosis in January, I was given a Gleason 3+4 T2 with only 10% graded Gleason 4 all localised & contained.
Before diagnosis when I was first being looked at my PSa was 7.40, afterwards went to 6.42 6.50, 6.50. After going on AS my first PSa in March was 6.98, then in June was 6.39 most recent one in September went to 8.22.  I contacted the team and they were happy with that slight increase as my PSa has been relatively stable, they said if it had doubled to around 13 then they would have actioned a response. next psa is December so we’ll see what happens then, but I’m actually happy staying on AS & avoiding any radical treatment at the moment, good possibility that I can stay on it for many years. Plenty of guys been on AS for 8/10 years or more with no major changes in their original results 

User
Posted 06 Oct 2024 at 14:27

Hi Richard.

As you are probably aware many things can cause your PSA to flucuate. Good luck with your blood test in December. Hopefully, it may drop back again.

Always remember mate, keep your active surveillance active, this includes further MRIs and if applicable biopsies. 

Edited by member 07 Oct 2024 at 05:33  | Reason: Redirected to the right poster.🙈

User
Posted 07 Oct 2024 at 00:25

Hi Richard,

Thanks for sharing, it all helps. My case is very similar to yours, but with 20% on the 4.

My very first thought was, get rid by surgery, but after speaking with the oncologist, she convinced me AS was the best option. As you said, so long as it's stable, you could be on AS for many years, avoiding surgery and those dreaded side effects.

My PSA was 5.5 early this year, then 6, at which point I called to see if this was a concern, being last year it was 4.5.

I was told, a 6 is nothing to worry about, so i relaxed, but my last blood test was 7.1, which I must admit, weather they are happy or not, my decision was to treat this with surgery.

Mainly because the the risk of spread is a major concern, this group is a godsend, and I've seen the huge difference in treatment when outside the prostate (still good positive and effective)  but i would feel better if i take the lead and treat it. I also think if it is in an area which they can access and not too much growth, maybe they'll be less side effects, something I'll speak to the surgeon about.

I originally looked at the HIFU type of treatment, which is far less intrusive on other nerves and tissue damage, and far less chance of Incontinence and ED. However, when I read up on this and researched, it's still fairly new and the figures can only go back so far. So I think, (if i'm accepted) will go for Brachytherapy.

Also with HIFU types you stay on AS for life, which means regular Biopsies etc 

But the main reason for my decision was HIFU types of treatment will only treat that section of the Prostate, leaving the possibility of re-occurrence at a later date.

With Brachytherapy the seeds which stay in,will give some more assurance, not 100 percent but better. The idea of being Radioactive does fill me with a slight horror, but hey, got to get to grips with it.

Looks like it may be a while as there's a process, but I'll keep you posted

 

 

 

 

 

 

 

 

   

Edited by member 07 Oct 2024 at 10:51  | Reason: spelt name incorrectly

User
Posted 07 Oct 2024 at 05:24

Originally Posted by: Online Community Member

In our support group, we've had a few men on AS, and in the last year, 2 of them tipped past the point where they needed to switch to active treatment. Both were looking at seed brachytherapy and were candidates. However, the oncologist also offered them the new treatment of just 5 SABR external beam radiotherapy sessions with no hormone therapy, and they took that. Both seem very pleased with the results so far. The treatment is given over 5 consecutive weekdays, often straddling a weekend. A small number of the centres did it every other day instead. One significant advantage is that because side effects of radiotherapy lag a couple of weeks behind the treatment, you don't get the side effects until after finishing the treatment, so you don't have to cope with both at the same time.

This treatment ran as a trial which was successful, and has been adopted. The Centres are still waiting for the official NHS England commissioning for it to come through, but the sites involved in the trial have simply continued offering it anyway.

I suspect this treatment protocol will quickly replace seed brachytherapy once it's rolled out in more centres.

Hi Davey.

Andy is very knowlegeable, his advice is sound.

If, when I was first diagnosed, the five SABR treatment was available, I'd have taken it. It would be worth seriously considering, if it is available to you. 

Best of luck mate.

Edited by member 07 Oct 2024 at 05:25  | Reason: Additional text

User
Posted 07 Oct 2024 at 11:57

Thanks pal

User
Posted 07 Oct 2024 at 23:50

Originally Posted by: Online Community Member

...With Brachytherapy the seeds which stay in,will give some more assurance, not 100 percent but better....

No the seeds will have no radiation after about a year so they will not offer any protection against future cancer.

I think Brachy is an excellent treatment, but I wouldn't want your decision to be influenced by something which is not correct.

Dave

User
Posted 08 Oct 2024 at 21:42

Thank Dave, very helpful will mention this when talking with oncologist

User
Posted 15 Dec 2024 at 00:04

I went down a similar route, but was found to be not suitable for hifu.

I am 61 and was advised to go down the RP route after a year on AS.

I had surgery with nerve sparing 3 weeks ago.

As soon as the catheter was removed this week I had full/normal bladder control and no ED issues.

I was very concerned about both and I may just have been lucky, but with hindsight RP was the correct option for me. I did make an effort to get as healthy as possible before the op

My surgeon used a Da Vinci robot, an incredible bit of kit....

 

User
Posted 15 Dec 2024 at 08:49

Originally Posted by: Online Community Member
As soon as the catheter was removed this week I had full/normal bladder control and no ED issues.

Although I'm very envious of your full and speedy recovery, thanks for posting.

It's great to get very good news on here.👍

 

User
Posted 16 Dec 2024 at 15:36

Hey thanks for posting,

I've done quite a lot of reading, and you have done brilliantly! To have both sets of function 3 week after an op like R.P, is amazing,

I'll note this method if needed in future

Cheers

Dave

 

 

User
Posted 16 Dec 2024 at 16:12

Hi,

I had brachytherapy at the age of 70 with PSA 2.19 Gleason 3+4=7 and 5 cores out of 20 Positive T2 .I think i was very lucky with no real side affects and 8 years on all ok and signed off a couple of years ago.If you click on my Avatar you can see my journey, but you have to scroll down a bit as i messed the gap up😂😂.

If you need any other details i am very happy to help.

Regards John.

 

User
Posted 16 Dec 2024 at 22:34

Hi John,

You're a star, very positive words at the start of my journey toward the up coming op.

I'll take a look at your avatar

Cheers

Dave

 

 
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