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User
Posted 28 Sep 2019 at 09:16

I have a 3 year PSA which went up and down below 10, a 2mm tumour on mfMRI, a Gleason 3+4 with the 4 being 10% on multifocal TP biopsy within capsule and no perineural spread. I have been offered AS, HIFU and I am going for another opinion where brachytherapy and RT is their thing. What would you suggest? Im 77 and my grandfather died of PCa at 94. Father KIA. Prostate vol 70ml so will probably be offered hormones. What are they like? Im sort of OK with AS, but feel treatment now when fit might be better than waiting until Im older and less fit. Everyone lived into their 90s! Comments?

User
Posted 28 Sep 2019 at 13:39

Interesting that you have been offered HIFU. I believe it to be the mildest option for suitable candidates as you appear to be, particularly with a small tumour on one side. I walked around London in the afternoon having had the procedure in the morning. The side effects for most people are less than surgery or radiation. It can be repeated if necessary (depending on location of tumour) or RT or surgery can be done if later treatment is required. It is still one of the treatments that is regarded as experimental, only because there have been insufficient years to establish long term effects. I would look into this possibility carefully as indeed you should also for other options that are open to you. Ultimately it is your decision because each type of treatment has its pros and cons.

PS You might care to look at this interview with the widely acknowledged top man in the UK (and further afield) on Focal Therapy https://www.canceractive.com/article/professor-mark-emberton-on-high-intensity-focussed-ultrasound-or-hifu Since this interview MRI has been increasingly rolled out and advances in scan are ongoing. Also, more recently https://www.sciencedaily.com/releases/2018/07/180705114140.htm

Edited by member 28 Sep 2019 at 14:37  | Reason: Link

Barry
User
Posted 28 Sep 2019 at 14:22

Hi Doc,

I had a choice of Robotic removal but asked about Brachytherapy and was it suitable for my Gleason 4+3 =7 and PSA 2.19 and decided after reading all the pros and cons I had the Brachytherapy in September 2016 and so far three year on with my PSA down to 0.22 in January 2019 and next blood test in January 2020 I have been very lucky.

Click on my Avatar for more details and if you have any other questions please ask.

John.

User
Posted 28 Sep 2019 at 14:30
Some cancer centres offer onsite accommodation Monday-Friday for people with lengthy journeys to get there. That may perhaps be an option considering your potential 5h daily journey.

Best wishes,

Chris

User
Posted 28 Sep 2019 at 14:50
Had my HIFU at UCLH in London. as this and the Transperineal Template biopsy that preceded it, I was accommodated in their nearby 'Cotton Rooms' and a Hotel respectively overnight. Also, on a subsequent Template biopsy 3 years later I was accommodated in a ward overnight at you mustn't drive within 24 hours of the anesthetic.
Barry
User
Posted 28 Sep 2019 at 15:37
Hi doctor doolittle... Please access my profile for details of my treatment. I had to have hormone treatment prior to seed Brachytherapy

Regards Tom

User
Posted 28 Sep 2019 at 15:54

Thanks for Mark Emberton’s article. I still have the option to go back to UCLH, just thought a second opinion no bad thing. The US papers do show a significant recurrence after HIFU, but then, as you say, you can always have more, or something different! Thanks for sharing your experience. We have a good train service to Kings Cross too.

User
Posted 01 Oct 2019 at 14:25

The general view is that there is not a lot of difference between the effectiveness of various radical treatments for which men are suitable. However there are of of course major differences in the way the treatment is applied and it's potential and varying side effects. There is so much information about about surgery and various forms of radiation that I referred more to HIFU which is less well known, because I researched it and had it (following failed RT), not because I believe it is better than other treatments other than having milder side effects and being repeatable. I wouldn't be swayed by the early American results because HIFU now stands comparison with other treatments for suitable men. TULSA PRO is a similar procedure that may prove even better (I leave you to investigate it).https://community.prostatecanceruk.org/posts/t21556-TULSA-PRO-V-HIFU

UCLH provides excellent treatment but from my experience and others who have commented on here, their admin has been shown to be poor on a number of occasions - so needs patients to check everything very carefully.

Edited by member 01 Oct 2019 at 14:34  | Reason: Not specified

Barry
User
Posted 26 Jun 2020 at 22:19
It will be really useful if you can keep updating your thread leading up to and after you have had HIFU - going into it knowing that it might need to be repeated is a risk but at 78 and with the challenges of a long round trip for normal radiotherapy, I can see why you are taking the HIFU route. Very exciting for those who will follow in the future as there is so little data to support it as a primary treatment at the minute.

Best of luck to you.

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

User
Posted 27 Jun 2020 at 14:14

I found the Bars Statlock really useful post op. I out the 2nd on my other thigh so I could ‘load balance’ the wear and tear on my poor urethra opening. Worked well and didn’t budge. http://www.bardmedical.co.uk/STATLOCKFoleyStabilisationDevice

User
Posted 27 Jun 2020 at 16:49

Doctor D

Good advice from TechGuy about Bard statlock device, remove them after 7 days ,they can burn / irritate the skin. Not all catheters fit the statlocks you will need to check. I also use thigh straps, and leg sleeves. At night I attach the night bag to the leg bag and attach the night bag tube to a thigh strap around my ankle, you could wear PJ bottoms, but a bit hot at present.  Make sure all connections are tight even the ones the nurses do. Ask for some instilagel or hydrocaine, some trusts have stopped using it in catheter care due to adverse reactions. Oddly their protocol says do not use it unless the patient insists ??

Wear snug, but not tight underwear and perhaps a light pad in case of by passing or leaking.

Hope all goes well.

Thanks Chris

 

 

Edited by member 27 Jun 2020 at 17:55  | Reason: Not specified

User
Posted 27 Jun 2020 at 17:23
If you have HIFU at UCLH like me you will wake up with your catheter fitted and will have it removed about a week.later. It was to have been done by a nurse but my GP removed it in the morning and said if I had not passed water by that afternoon, I was to go to A&E. Fortunately, I beat the deadline time he stipulated.
Barry
User
Posted 27 Jun 2020 at 17:26

Hi there

My husband had a HIFU pre lockdown (which meant we could stay over). I documented the experience of procedure and catheter here:

https://community.prostatecanceruk.org/posts/t23095-Focal-HIFU

It was a BUPA job but Mrs Prostate all the same.

 

Good Luck

 

Clare

 

 

User
Posted 30 Jul 2020 at 14:45
Thank you for detailing your experience. You rightly say that that another man may have a different experience to you in certain respects but broadly speaking I think most men would find it similar in most respects and less taxing than they anticipated. In my case I had no leakage of blood or urine. I was uncomfortable, particularly a day or two after the procedure when the bruising became more evident for a few days. During this time I slept in an armchair with adjustable fold down back which helped. About a week after the HIFU my GP removed the catheter and I immediately felt much more comfortable. As you say, only the tumour was removed that was really thought necessary and should another develop to the extent that it should be treated, further HIFU can be delivered, assuming it can be reached with the wand and focused on and that there is not too much calcification.

A few years ago there was a risk of a fistula developing but with improvements in techniques this is now a very rare possibility. In fact the lady surgeon who did my procedure and had done hundreds of others had not had a patient of her's develop one.

So for now all seems to be promising. We should be very interested to learn how things go for you.

Barry
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User
Posted 28 Sep 2019 at 13:00
Do you have any flow issues at all? Brachytherapy makes the prostate swell up and can cause issues for older men and men with larger prostates.

I've been down the HT/RT treatment route myself and have found it relatively plain sailing with no major side-effects.

Best wishes,

Chris

User
Posted 28 Sep 2019 at 13:35

Thanks! No flow issues, but after reading research papers see its likely to require HT before treatment to shrink from 70ml. RT is a 5 hour round trip each day.....

User
Posted 28 Sep 2019 at 13:39

Interesting that you have been offered HIFU. I believe it to be the mildest option for suitable candidates as you appear to be, particularly with a small tumour on one side. I walked around London in the afternoon having had the procedure in the morning. The side effects for most people are less than surgery or radiation. It can be repeated if necessary (depending on location of tumour) or RT or surgery can be done if later treatment is required. It is still one of the treatments that is regarded as experimental, only because there have been insufficient years to establish long term effects. I would look into this possibility carefully as indeed you should also for other options that are open to you. Ultimately it is your decision because each type of treatment has its pros and cons.

PS You might care to look at this interview with the widely acknowledged top man in the UK (and further afield) on Focal Therapy https://www.canceractive.com/article/professor-mark-emberton-on-high-intensity-focussed-ultrasound-or-hifu Since this interview MRI has been increasingly rolled out and advances in scan are ongoing. Also, more recently https://www.sciencedaily.com/releases/2018/07/180705114140.htm

Edited by member 28 Sep 2019 at 14:37  | Reason: Link

Barry
User
Posted 28 Sep 2019 at 14:22

Hi Doc,

I had a choice of Robotic removal but asked about Brachytherapy and was it suitable for my Gleason 4+3 =7 and PSA 2.19 and decided after reading all the pros and cons I had the Brachytherapy in September 2016 and so far three year on with my PSA down to 0.22 in January 2019 and next blood test in January 2020 I have been very lucky.

Click on my Avatar for more details and if you have any other questions please ask.

John.

User
Posted 28 Sep 2019 at 14:30
Some cancer centres offer onsite accommodation Monday-Friday for people with lengthy journeys to get there. That may perhaps be an option considering your potential 5h daily journey.

Best wishes,

Chris

User
Posted 28 Sep 2019 at 14:50
Had my HIFU at UCLH in London. as this and the Transperineal Template biopsy that preceded it, I was accommodated in their nearby 'Cotton Rooms' and a Hotel respectively overnight. Also, on a subsequent Template biopsy 3 years later I was accommodated in a ward overnight at you mustn't drive within 24 hours of the anesthetic.
Barry
User
Posted 28 Sep 2019 at 15:37
Hi doctor doolittle... Please access my profile for details of my treatment. I had to have hormone treatment prior to seed Brachytherapy

Regards Tom

User
Posted 28 Sep 2019 at 15:54

Thanks for Mark Emberton’s article. I still have the option to go back to UCLH, just thought a second opinion no bad thing. The US papers do show a significant recurrence after HIFU, but then, as you say, you can always have more, or something different! Thanks for sharing your experience. We have a good train service to Kings Cross too.

User
Posted 28 Sep 2019 at 16:05

Thanks for your bio tp, sounds like plenty of side effects from brachytherapy. And recurrence in your case. Making decisions on uncontrolled trials of one person probably not helpful!

User
Posted 01 Oct 2019 at 11:18

Thank you to the nurse who talked with me for nearly an hour. Extremely knowledgable, particularly about which centre do what and side effects of different treatments. Really helpful and reassuring, and phone answered at once! What a great service.

User
Posted 01 Oct 2019 at 14:25

The general view is that there is not a lot of difference between the effectiveness of various radical treatments for which men are suitable. However there are of of course major differences in the way the treatment is applied and it's potential and varying side effects. There is so much information about about surgery and various forms of radiation that I referred more to HIFU which is less well known, because I researched it and had it (following failed RT), not because I believe it is better than other treatments other than having milder side effects and being repeatable. I wouldn't be swayed by the early American results because HIFU now stands comparison with other treatments for suitable men. TULSA PRO is a similar procedure that may prove even better (I leave you to investigate it).https://community.prostatecanceruk.org/posts/t21556-TULSA-PRO-V-HIFU

UCLH provides excellent treatment but from my experience and others who have commented on here, their admin has been shown to be poor on a number of occasions - so needs patients to check everything very carefully.

Edited by member 01 Oct 2019 at 14:34  | Reason: Not specified

Barry
User
Posted 26 Jun 2020 at 22:07

PSA risen in 4 stages to 15.9 
1.5 year fMRI shows no change at all. Nevertheless going for HIFU even though 4 mm from urethral sphincter and to get a margin ‘quite challenging’. Mrs Prostate says 1:4 chance that more HIFU needed after 5 years. Seems good odds to me, and RT still available. Noone will do a robotic removal because of incontinence issue at 78. I am NOT 78! really

Edited by member 27 Jun 2020 at 07:54  | Reason: Not specified

User
Posted 26 Jun 2020 at 22:19
It will be really useful if you can keep updating your thread leading up to and after you have had HIFU - going into it knowing that it might need to be repeated is a risk but at 78 and with the challenges of a long round trip for normal radiotherapy, I can see why you are taking the HIFU route. Very exciting for those who will follow in the future as there is so little data to support it as a primary treatment at the minute.

Best of luck to you.

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

User
Posted 27 Jun 2020 at 07:52

Yes, 6 hour round trip by car for HIFU, plus 2 hour GA means driver (family volunteer) has a 15 hour day confined to car as I clearly cant drive home. Overnight facilities presently closed. Covid rules, mean total isolation for 2 weeks before and an additional trip to London 2 days before for Covid test etc. Threats that local preop testing results do not materialise (quite possible) and proceedure cancelled. Both of us have isolated for 4 months and probably had Covid in Feb returning from France. Covid testing is obvious to protect isolated urological unit of UCLH which is Covid free, but also anaesthetic risks with Covid patients significantly increased. Other options were further Active Surveillance (until what? Only option then is RT with 4 hour round trip for 4-6 weeks). HIFU for me now is a single though somewhat exhausting day plus a catheter for a week, which can be repeated if necessary. Any advice about catheters? Turning in bed etc! My least looked forward-to element. The thought that a blog of my intimate experience might be of help to someone else has cheered me up!

User
Posted 27 Jun 2020 at 13:17
They pay particular care about pre op testing before HIFU or even Template Biopsy at UCLH. as it involves general anesthetic .Last time I had the latter they found a level slightly low and deferred procedure. I put this down to my breathing shallowly during the test. So I got the test repeated by my GP who clipped a small device on my finger. Somebody else had given me a tip to take some deep breaths before the test and not to breath shallowly during it. I did this and there was no problem. I think the test was to establish the oxygen percentage if I remember correctly.

The catheter is more uncomfortable than difficult to manage but I found if so much more comfortable after it had been removed. As I said in a thread about my HIFU experience, try not to sit upright for a few days after HIFU to help avoid placing extra pressure where not wanted.

Keep us posted!

Barry
User
Posted 27 Jun 2020 at 13:25
Yup testing oxygen saturation in the blood. We have a pulse oxymeter at home (about £20 from amazon) in case of Covid. I’m 99% at rest so should be OK! Thanks for info. Hope they dont cancel, it’s a 6 hour round trip at best.
User
Posted 27 Jun 2020 at 14:14

I found the Bars Statlock really useful post op. I out the 2nd on my other thigh so I could ‘load balance’ the wear and tear on my poor urethra opening. Worked well and didn’t budge. http://www.bardmedical.co.uk/STATLOCKFoleyStabilisationDevice

User
Posted 27 Jun 2020 at 16:49

Doctor D

Good advice from TechGuy about Bard statlock device, remove them after 7 days ,they can burn / irritate the skin. Not all catheters fit the statlocks you will need to check. I also use thigh straps, and leg sleeves. At night I attach the night bag to the leg bag and attach the night bag tube to a thigh strap around my ankle, you could wear PJ bottoms, but a bit hot at present.  Make sure all connections are tight even the ones the nurses do. Ask for some instilagel or hydrocaine, some trusts have stopped using it in catheter care due to adverse reactions. Oddly their protocol says do not use it unless the patient insists ??

Wear snug, but not tight underwear and perhaps a light pad in case of by passing or leaking.

Hope all goes well.

Thanks Chris

 

 

Edited by member 27 Jun 2020 at 17:55  | Reason: Not specified

User
Posted 27 Jun 2020 at 17:23
If you have HIFU at UCLH like me you will wake up with your catheter fitted and will have it removed about a week.later. It was to have been done by a nurse but my GP removed it in the morning and said if I had not passed water by that afternoon, I was to go to A&E. Fortunately, I beat the deadline time he stipulated.
Barry
 
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