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Recent diagnosis low risk localised prostate cancer

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User
Posted 15 Feb 2020 at 18:57

I have recently been diagnosed with WHO grade group 1 or Gleason score 6 low grade prostate cancer. My PSA is 6 and the stage of cancer is T2a confined within the capsule of the prostate. The risk category as been defined as low risk localised prostate cancer. Out of 10 samples taken at biopsy 7 showed cancer. I am considering my treatment options and as I am 55 have ruled out radiation at this stage due to the inability of having a prostatectomy later on if cancer returns. I am considering the surgery option however as I have a meash inserted from a hernia repair some years ago this may prove difficult. I am also concerned regarding the statistics highlighted in some of the research with incontinence and impotency (ED). I am due to see Mr **edited** consultant this week regarding the surgery option and I am also considering seeing a consultant at some stage to discuss the possibility of HIFU. Although I now feel lucky that my situation is low risk, I am slightly confused as to what route to take and I would really appreciate any advice given to assist in my decision making process. 

 

Edited by moderator 15 Feb 2020 at 19:28  | Reason: Privacy

User
Posted 15 Feb 2020 at 20:54
The inability to have surgery after RT is a bit of a red herring, Andy. The long-term success rates of surgery and RT are almost identical. Go for whichever treatment seems the lesser of the evils in terms of consequences. Unfortunately they are all life-changing in one way or another. I opted for the HT/RT route and have no regrets about that.

Best wishes,

Chris

User
Posted 16 Feb 2020 at 07:03
If your Gleason score is 3+3=6 I would seriously consider active surveillance for as long as your medics think you can get away with it.

A friend who is G3+4=7 has been on AS for five years, and has lived life to the full without any of the unfortunate side-effects that those of us who have had any kind of treatment have inevitably suffered.

Best of luck.

Cheers, John.

User
Posted 16 Feb 2020 at 09:49

Hi Andy

i was in a similar boat as you mid last year. Was advised Active Surveillance. My ex is a cancer researcher and runs clinical trials in this field so had more understanding than is probably good for me about the pathology of cancer cells. Surgery appeared a no brainier at 52 years of age. It was more a care of finding the best person to do it. Please check my posts for documented journey. After quite a bit of research I found the Prof whocannotbenamedonhere thanks to the amazing folks on here. Also hooked up with people in my town that had been under his car. Met him early November and knew that was the best path. Obviously no absolutes with cancer but I wanted to try an ensure the cards were stacked in my favour where I had control to do so. Had it out at London Bridge end of November. As Bollinge says it’s les pain than a sore throat. Epidural an eye opener and something I will remember for ever but post surgery pain was negligible apart from CO2 gas dispersing a day or so after. grant60 and me were in same ward and compared notes daily lol. Key things in my view are fine a high volume surgeon who is at the top of their game. The prof ticked all the boxes....I had the Retzius sparing robotic assisted radical prostatectomy + neurosafe. It’s relatively new ~4yrs as an approach but has strong data showing significant improvement with post op continence. Plus neurosafe gives you a fair crack at keeping your mojo. I’m happy to report pad free now (even after lashings of wine). No stress incontinence. Mojo fully returned and don’t really need my 5mg daily tadalafil...though that would be written off after the op but count myself very lucky although I very much fire blanks these days. My Gleason 6 (pre op) was upgraded to 7 (3+4) after histology and just had blood PSA back after three months <0.01. Good outcome for me and would make exactly the same decision again. active surveillance wouldn’t have worked well for me as the largest tumour was about to break free. RT wasn’t an option as such due to risks of it creating secondary primaries later in life. Ping me if you need a chat as always happy to help where I can. good luck on this journey TG

User
Posted 16 Feb 2020 at 11:38

Recommend reading Andy Hamm’s prostate website. He’s has a couple of HIFUs at UCLH by their legendary team. He a really nice guy as emailed him a few times when reviewing options. Nothing like talking to folks that have been at the ‘coal face’.

User
Posted 16 Feb 2020 at 12:44

Retzius sparing way forward. Strong data on urinary continence. I watched the procedure on YouTube (pre op) and understand that the approach avoids slicing through layers of nerves and tissue associated with bladder control. It’s quite technical and the cave of Retzius is very small...lends itself well to tiny robotic hands. Surgically very demanding so skill set and knowledge key. When I had mine the Prof found potential focal involvement in the margins. So took a partial resection of one of the neuro vascular bundles. He said he adapted the Retzius approach to 3/4 plus alt Retzius....which he has pioneered. Saw him yesterday for review and thanked him again for his magic hands. 

User
Posted 16 Feb 2020 at 13:34

Hi Andy

Totally. More data in the mix the better. explored these options too but key points put me off focal treatments HIFU/cryo/nano knife/proton etc...prostate cancer tends to be multi focal so these treatments tend to just buy time. Not a bad thing as give more time for other approaches to evolve. I’d be inclined to have a chat with the prof whocannotbenamedonhere as he pioneers laparoscopic urological surgery in the uk. I suspect he probably has exposure to your case types? But yes talk to all...UCLH, Marsden and Guys (London Bridge) and see which fits you best. By view of surgery at worse case is it buys me time for immunotherapy to evolve as my ex works in this field. TG

User
Posted 16 Feb 2020 at 17:30
I rest my case.

Go and see the aforementioned Professor Whocannotbenamedhere who looks after my mate on 5yrs Active Surveillance, or someone else as highly-esteemed.

See what they think about your condition. I wouldn’t advocate anything that would prejudice your health, bearing in mind you have a particularly benign form of cancer.

You can do a Google search for ‘Santis Prostate’

Cheers, John.

User
Posted 16 Feb 2020 at 20:22
My husband opted for a focal HIFU on 23rd January to treat a G7 (3+4) tumour. He is 56 and quality of life is very important to him. He has no incontinence and 100% strength erections (We have not yet tried without a tablet as it’s still early days post procedure).

He has been back at work for 2 weeks, does not get up at night to pee or have any other symptoms.

We did consult a surgeon who specialises in removal of a prostate after a focal treatment and he said that door is definitely not closed should this HIFU fail to control the PCa. However I don’t think many surgeons have much experience in this area.

He will get a PSA in April and constant monitoring of course even if the result is low. However whatever option you choose you will have to undergo a lifetime of monitoring I am afraid.

So far so good for my husband. Clearly he still has a prostate ( this was his second focal treatment) and we understand why many would prefer to have it removed sooner rather than later and he may well get to that point.

However for now he was worried about the risks associated with an over treatment ( incontinence, erectile dysfunction, inability to work, Depression etc).

A leading focal professor did his HIFU and said the risk of an anal fistula following a HIFU was 1/900 but it had never happened to one of her patients. A has no problem so her record lives on! I would want a very experienced HIFU specialist if I was going to opt for it therefore.

Good luck

Clare

User
Posted 16 Feb 2020 at 22:14

Hi Clare, pleased the recovery of your husband from HIFU is going well. I remember how from the outset one of your/his prime concerns in settling for focal treatment was to try to avoid the risk of over treatment by more conventional Prostatectomy or Radiation. The effects of treatment by HIFU from data so far shows it impacts men less severely and can be repeated in need. It does have it's limitations, as the cancer has to be in a position where the probe can focus the ultrasound and there can be situations where the extent of cancer is such that one of the conventional treatments may be a better alternative.

My situation is more unusual because I have already had RT and salvage HIFU, the latter by the same surgeon as your husband. She has said that if the MRI I am having next month shows the cancer has not spread to the seminal vesicles (or outside the prostate I assume), she would consider treating me again with HIFU. However, due to the small tumour seen on my last MRI being very close to my rectum, she has cautioned that there would be a greater risk of a Fistula forming. (Hopefully, I wouldn't be her first!). HIFU can be considered more of a 'niche' primary treatment for suitable men interested in minimizing side effects but aware that further focal or other treatment is more likely although not always needed in due course. It's more widely used as a salvage treatment for failed RT.

Edited by member 16 Feb 2020 at 22:42  | Reason: Not specified

Barry
User
Posted 30 Mar 2020 at 14:41

Should be fine. I was dripping on and off up to six weeks even though completely fine on day of TWOC. There is a lot of swelling plus stitches can hold the urinary sphincter open slightly under tension according to the profs post op guidelines/notes. Fingers crossed it resolves as that six week mark was spot on. Other have been dry straight away but varies I guess case by case. I wore pads daily until about week 7 or 8 just for reassurance and since then just carry one with me but not needed at all. Only mishaps I have had were week 12 at the gym I leaked a couple of drops. And after a barrel of beer wet myself while comatosed.. tend to stick with wine these days as less volume. Gym no issues at all. pelvic floor definitely very helpful to manage stress leaks but I don’t get those either now so can cough, sneeze, pass wind without issue. 😀

User
Posted 15 Feb 2020 at 20:22

Hello Andy,

Sorry you join us due to a PCa diagnosis.

A treatment decision is a difficult one because it's possible to make a case for but accepting potential side effects and other draw backs for any form of it. That includes doing nothing but with careful monitoring called Active Surveillance (AS). Making an early decision does not seem from what you have told us to be urgent. Discussing your specific diagnosis with a Prostatectomy consultant, an expert on HIFU and an Oncologist would seem to be a sensible approach. Before doing this I would suggest you download or obtain a hard copy of the 'Tool Kit' from this charity. Not only will it help you understand more about this disease and various treatments but may help you frame questions to ask the Consultants. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Edited by member 15 Feb 2020 at 20:23  | Reason: to highlight link

Barry
User
Posted 15 Feb 2020 at 21:21

I am 56 and had a robot assisted radical prostatectomy at UCLH 3 weeks ago.
I also had mesh due to keyhole hernia surgery 20 years ago.
The surgeon said that the mesh provided a sporting challenge.
3 weeks post surgery I have full continence and am pad free, and feel basically like normal.
The worst thing about surgery is having a catheter for 2 weeks (though mine was reduced to 
11 days due to good behaviour).
As you are gleason 6 (I am 9) you have far more options than me and a much better prognosis.
I would check if brachytherapy is an option.

You can afford to take your time deciding what to do. There is not a single "right" answer.
Best of luck!

User
Posted 16 Feb 2020 at 01:27
The idea 'you can't have surgery after RT' is a red herring. Even though you can have salvage RT after surgery, the reality is that if the primary treatment fails your chance of achieving full remission drops significantly - it doesn't really matter which way round it is.

We had some good advice; choose the treatment that the medics believe will give you the best chance of remission. Decide whether you can live with the potential side effects. If you can't, choose the best treatment whose side effects you could live with.

Previous abdominal surgery may or may not impact on your suitability to have keyhole RP. John had open RP (partly but not wholly because of previous surgery scars) and although the recovery is longer, outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

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

User
Posted 16 Feb 2020 at 03:52

Originally Posted by: Online Community Member
The idea 'you can't have surgery after RT' is a red herring. Even though you can have salvage RT after surgery, the reality is that if the primary treatment fails your chance of achieving full remission drops significantly

It annoys me how often the medics play down the fact that the cards are really stacked against you in this damn game.

User
Posted 16 Feb 2020 at 05:46

Originally Posted by: Online Community Member
open RP [...] outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

A few weeks ago, I heard a urology surgeon advising the exact opposite - robotics is now so much better in every respect (particularly reduced recurrence and the ability to do safer nerve sparing) that almost no one should be considering open RP today, and this is from a surgeon who does open RP, and not robotic.

User
Posted 16 Feb 2020 at 10:33

Hi Andy.  You will have read and I'm sure understood the pros and cons of AS, however had I been diagnosed with a Gleason 6 ten years ago when in my early 60's I may well have opted for surgery, on the basis that I was younger and fitter.

Like most on AS I am monitored regularly for any changes and if significant changes in my PSA occur and assuming an MRI confirms there are changes, I shall then have to make a decision on what treatment regime best suits me at that time, should it ever happen.

I wish you luck with your decision whichever option you take and if it is AS just make sure the urology team caring for you are fully committed to the protocols on AS monitoring.

Edited by member 16 Feb 2020 at 10:34  | Reason: Not specified

Roger
User
Posted 16 Feb 2020 at 12:15

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
open RP [...] outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

A few weeks ago, I heard a urology surgeon advising the exact opposite - robotics is now so much better in every respect (particularly reduced recurrence and the ability to do safer nerve sparing) that almost no one should be considering open RP today, and this is from a surgeon who does open RP, and not robotic.

 

His opinion is not supported by the statistics - it was covered again at the last national conference. The hospitals that have Da Vinci and have spent money training up their surgeons have a vested interest ... they need the robotic option to seem as good to justify the cost. The overwhelming benefit  of Da Vinci is the shorter hospital stay and recovery time and lower blood loss. The downside is still the slightly higher risk of side effects or recurrence and interestingly, all of the men on here with the worst continence problems or bladder damage had robotic RP.   

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

User
Posted 16 Feb 2020 at 14:43
Consultants can have quite widely differing views on treatment, especially when considering an application for a specific patient. Sometimes there is a difference between conclusions from studies on similar lines. It's rather like national polls where even asking the small question those conducting the polls sometimes come up with significantly different figures. Medicine and treatments are continually evolving and advancing and it takes so long to look back and analyse follow up results over a timespan of 10 years or so. Whilst it may lead to some confusion, it is not very surprising that patients may accept as 'gospel' what they may read in one survey whereas had they read a different one they may have been led to believe something different. As a generalisation clinicians tend to favour their own discipline but there may be a better method of administering it that is not available at their particular hospital.
Barry
User
Posted 16 Feb 2020 at 21:34

Hard call

for me with my knowledge of the histopathology it’s a mess. Without the RS + RP I would have maybe gambled with focal. Not easy outcome and home you can work out what best fits for you, TG 

User
Posted 17 Feb 2020 at 00:19

Oh Barry

Definitely a hard call ( as Tech Guy said above)  for you as well.

As we all know everyone’s journey varies and as you say a  slightly different position of what they are treating changes the complexity and therefore the odds.

So A has sailed through the HIFU  but it sounds like a higher risk for you ( I only knew about fistula risk from this forum - you guys have been amazing at getting the  detail out there!)

But yes since A’s original low risk diagnosis at the end of 2016 we have been attempting  (and achieving) to avoid over treatment so his QOL has not been impacted by either of his 2 focal treatments. 

However doing nothing would have been an under treatment for sure  The HIFU ‘long weekend’ has barely blipped his life. If it hasn’t done the job and something more radical needs doing then he has had time to adjust to the fact he has cancer and has tried to avoid any treatment that could change our lives. I think this will help him mentally if and when that radical door has to be opened. 

if we could guarantee the outcome Techguy got the decision would be easy, however John (Bollinge) (if I understand correctly ) had the same procedure by the same surgeon and it’s been goodbye erections (plus his amusing take on his his lost inches!).


A hard call indeed for you both. 

Clare

 

User
Posted 17 Feb 2020 at 16:40
I had Brachytherapy which so far has been successful. I asked my urologist before the brachytherapy if surgery was possible afterwards should it be needed. He told me that he does do surgery after brachy, but not all surgeons will/can do it. The risks are higher and bleeding can be a problem so it is not undertaken lightly. Hopefully I will never need surgery, anyway my urologist has changed so finding him again might be difficult!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 17 Feb 2020 at 18:42

I have reconsidered my earlier post, and I would say: take your time researching all options. Gleason 6 suggests that the Tumour is unlikely to do anything dramatic soon, and could just do nothing. There is a danger of overtreatment, and with all treatments you would need to live with the long term effects. Would active surveillance be on option over the next months/years be an option? At least until you have considered all options fully...

My own experience: similar age. Surgery surprisingly easy (for me). Mesh was a challenge for  the surgeon, but not a major problem. Continence is 100% (as predicted by the surgeon). But I will have ED going forward. For me, this was a small price to pay for a shot at a long life (I had a Gleason 9 tumour). But with a low risk tumour, then your considerations would be different.

Best of luck whatever you decide. But take your time...

Edited by member 17 Feb 2020 at 18:43  | Reason: Not specified

User
Posted 20 Feb 2020 at 22:01

Hi Andy

i’d clarify with the consultant. From way I interpret it they are saying two anterior samples show Gleason 6 disease. Basically focal areas of non-normal cells hence the comments on how they are formed. Normal cells tend to looks similar and well differentiated ie similar and connected in the cellular matrix is an ordered fashion on the eye. When the cells mutate and change over time this linear spread becomes more clumped and disorganised. Hope that makes sense. 3+3 ie Gleason 6 look very similar to normal cells (low grade). If you have some type 4 cells then some are more dispersed in the cellular matrix instead of being evenly spread out.

TG

User
Posted 20 Feb 2020 at 23:31
My reading of that is that although the majority of cancerous cells were a G3, you have two small areas where the cell pattern includes what would in the past have been considered a 3 but is now treated like it is a G4.

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

User
Posted 11 Mar 2020 at 22:11

Best of luck Andy. Hope everything goes smoothly and you can enjoy the recovery with a good outcome. Keep us posted! TG

User
Posted 14 Mar 2020 at 21:49

Good luck Andy.

If you haven't already, buy fybogel to take for several days before and after the op'. It will keep your bowels moving and prevent unnecessary straining.

Neil

User
Posted 30 Mar 2020 at 14:11

Great news and I bet that’s a relief to be on the other side in a timely manner. Plus you had a great surgeon. Hope the continence is fine (dribbles for me resolved almost spot on week 6 when the stitches started to dissolve) and ED issues resolve. I was put on low dose (Daily 5mg) tadalafil A month post op and that’s helped a lot. Onwards and upwards! 

cheers

TG

Edited by member 30 Mar 2020 at 14:13  | Reason: Not specified

User
Posted 30 May 2020 at 06:35
I don't know if this will help, but I had my op on the 9th March and was also experiency some difficulty with small leaks at the end of my walks. I found that if I concentrated I could really tighten the pelvic floor while walking and feeling the need to pee. This seems to have done the trick. Not worn a pad the last 4 days and had no leaks.
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User
Posted 15 Feb 2020 at 20:22

Hello Andy,

Sorry you join us due to a PCa diagnosis.

A treatment decision is a difficult one because it's possible to make a case for but accepting potential side effects and other draw backs for any form of it. That includes doing nothing but with careful monitoring called Active Surveillance (AS). Making an early decision does not seem from what you have told us to be urgent. Discussing your specific diagnosis with a Prostatectomy consultant, an expert on HIFU and an Oncologist would seem to be a sensible approach. Before doing this I would suggest you download or obtain a hard copy of the 'Tool Kit' from this charity. Not only will it help you understand more about this disease and various treatments but may help you frame questions to ask the Consultants. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Edited by member 15 Feb 2020 at 20:23  | Reason: to highlight link

Barry
User
Posted 15 Feb 2020 at 20:54
The inability to have surgery after RT is a bit of a red herring, Andy. The long-term success rates of surgery and RT are almost identical. Go for whichever treatment seems the lesser of the evils in terms of consequences. Unfortunately they are all life-changing in one way or another. I opted for the HT/RT route and have no regrets about that.

Best wishes,

Chris

User
Posted 15 Feb 2020 at 21:21

I am 56 and had a robot assisted radical prostatectomy at UCLH 3 weeks ago.
I also had mesh due to keyhole hernia surgery 20 years ago.
The surgeon said that the mesh provided a sporting challenge.
3 weeks post surgery I have full continence and am pad free, and feel basically like normal.
The worst thing about surgery is having a catheter for 2 weeks (though mine was reduced to 
11 days due to good behaviour).
As you are gleason 6 (I am 9) you have far more options than me and a much better prognosis.
I would check if brachytherapy is an option.

You can afford to take your time deciding what to do. There is not a single "right" answer.
Best of luck!

User
Posted 16 Feb 2020 at 01:27
The idea 'you can't have surgery after RT' is a red herring. Even though you can have salvage RT after surgery, the reality is that if the primary treatment fails your chance of achieving full remission drops significantly - it doesn't really matter which way round it is.

We had some good advice; choose the treatment that the medics believe will give you the best chance of remission. Decide whether you can live with the potential side effects. If you can't, choose the best treatment whose side effects you could live with.

Previous abdominal surgery may or may not impact on your suitability to have keyhole RP. John had open RP (partly but not wholly because of previous surgery scars) and although the recovery is longer, outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

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

User
Posted 16 Feb 2020 at 03:52

Originally Posted by: Online Community Member
The idea 'you can't have surgery after RT' is a red herring. Even though you can have salvage RT after surgery, the reality is that if the primary treatment fails your chance of achieving full remission drops significantly

It annoys me how often the medics play down the fact that the cards are really stacked against you in this damn game.

User
Posted 16 Feb 2020 at 05:46

Originally Posted by: Online Community Member
open RP [...] outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

A few weeks ago, I heard a urology surgeon advising the exact opposite - robotics is now so much better in every respect (particularly reduced recurrence and the ability to do safer nerve sparing) that almost no one should be considering open RP today, and this is from a surgeon who does open RP, and not robotic.

User
Posted 16 Feb 2020 at 07:03
If your Gleason score is 3+3=6 I would seriously consider active surveillance for as long as your medics think you can get away with it.

A friend who is G3+4=7 has been on AS for five years, and has lived life to the full without any of the unfortunate side-effects that those of us who have had any kind of treatment have inevitably suffered.

Best of luck.

Cheers, John.

User
Posted 16 Feb 2020 at 09:49

Hi Andy

i was in a similar boat as you mid last year. Was advised Active Surveillance. My ex is a cancer researcher and runs clinical trials in this field so had more understanding than is probably good for me about the pathology of cancer cells. Surgery appeared a no brainier at 52 years of age. It was more a care of finding the best person to do it. Please check my posts for documented journey. After quite a bit of research I found the Prof whocannotbenamedonhere thanks to the amazing folks on here. Also hooked up with people in my town that had been under his car. Met him early November and knew that was the best path. Obviously no absolutes with cancer but I wanted to try an ensure the cards were stacked in my favour where I had control to do so. Had it out at London Bridge end of November. As Bollinge says it’s les pain than a sore throat. Epidural an eye opener and something I will remember for ever but post surgery pain was negligible apart from CO2 gas dispersing a day or so after. grant60 and me were in same ward and compared notes daily lol. Key things in my view are fine a high volume surgeon who is at the top of their game. The prof ticked all the boxes....I had the Retzius sparing robotic assisted radical prostatectomy + neurosafe. It’s relatively new ~4yrs as an approach but has strong data showing significant improvement with post op continence. Plus neurosafe gives you a fair crack at keeping your mojo. I’m happy to report pad free now (even after lashings of wine). No stress incontinence. Mojo fully returned and don’t really need my 5mg daily tadalafil...though that would be written off after the op but count myself very lucky although I very much fire blanks these days. My Gleason 6 (pre op) was upgraded to 7 (3+4) after histology and just had blood PSA back after three months <0.01. Good outcome for me and would make exactly the same decision again. active surveillance wouldn’t have worked well for me as the largest tumour was about to break free. RT wasn’t an option as such due to risks of it creating secondary primaries later in life. Ping me if you need a chat as always happy to help where I can. good luck on this journey TG

User
Posted 16 Feb 2020 at 09:55

Wow, thank you so much for all your feedback it really is reassuring to know that I have support from people who have walked the walk. I get a sense from the consultant I have been seeing that he is in favour of RP as he has discussed my case at a multi disciplinary meeting and has sent me an NHS appointment to see a surgeon to discuss further. His view is that although I am low risk "there is a fair amount of cancer within the prostrate". From this I read that AS although an option may not be a longer term one. I asked him about HIFU and he said he was biased and felt there was not enough clinical evidence to suggest it is successful and very rarely there are complications with the rectum following procedure. He also says that there are similar risk factors with it regarding incontinence and impotency as with radiation and surgery even if less significant. He also said that although he is biased a HIFU specialist would probably say the opposite. He concluded that there is absolutely no urgency regarding me making a decision. Although I am grateful for his input so far I am going to get further medical opinions from an Oncologist, HIFU specialist and this Friday am booked in to see a RP specialist. The road is going to be a rocky one but it has to be faced with courage. Thank again. 

User
Posted 16 Feb 2020 at 10:33

Hi Andy.  You will have read and I'm sure understood the pros and cons of AS, however had I been diagnosed with a Gleason 6 ten years ago when in my early 60's I may well have opted for surgery, on the basis that I was younger and fitter.

Like most on AS I am monitored regularly for any changes and if significant changes in my PSA occur and assuming an MRI confirms there are changes, I shall then have to make a decision on what treatment regime best suits me at that time, should it ever happen.

I wish you luck with your decision whichever option you take and if it is AS just make sure the urology team caring for you are fully committed to the protocols on AS monitoring.

Edited by member 16 Feb 2020 at 10:34  | Reason: Not specified

Roger
User
Posted 16 Feb 2020 at 11:38

Recommend reading Andy Hamm’s prostate website. He’s has a couple of HIFUs at UCLH by their legendary team. He a really nice guy as emailed him a few times when reviewing options. Nothing like talking to folks that have been at the ‘coal face’.

User
Posted 16 Feb 2020 at 12:15

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
open RP [...] outcomes in terms of risk of ED, incontinence and margins is slightly better than with keyhole or robotic.

A few weeks ago, I heard a urology surgeon advising the exact opposite - robotics is now so much better in every respect (particularly reduced recurrence and the ability to do safer nerve sparing) that almost no one should be considering open RP today, and this is from a surgeon who does open RP, and not robotic.

 

His opinion is not supported by the statistics - it was covered again at the last national conference. The hospitals that have Da Vinci and have spent money training up their surgeons have a vested interest ... they need the robotic option to seem as good to justify the cost. The overwhelming benefit  of Da Vinci is the shorter hospital stay and recovery time and lower blood loss. The downside is still the slightly higher risk of side effects or recurrence and interestingly, all of the men on here with the worst continence problems or bladder damage had robotic RP.   

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

User
Posted 16 Feb 2020 at 12:20

Thank you guys. I am feeling so much better with all the comments and valuable information you are giving me.

User
Posted 16 Feb 2020 at 12:44

Retzius sparing way forward. Strong data on urinary continence. I watched the procedure on YouTube (pre op) and understand that the approach avoids slicing through layers of nerves and tissue associated with bladder control. It’s quite technical and the cave of Retzius is very small...lends itself well to tiny robotic hands. Surgically very demanding so skill set and knowledge key. When I had mine the Prof found potential focal involvement in the margins. So took a partial resection of one of the neuro vascular bundles. He said he adapted the Retzius approach to 3/4 plus alt Retzius....which he has pioneered. Saw him yesterday for review and thanked him again for his magic hands. 

User
Posted 16 Feb 2020 at 13:27

The Retzius sparing looks very interesting and one I think I will definitely expIore in more detail with London Bridge. I guess the big question in regard to RP and this procedure for me is clearly whether it is possible due to the mesh I have inserted from hernia op 15 years ago and if not possible robotically then whether open surgery is an option. (Local NHS consultant says that surgeon he has spoken to would attempt the robot but may need to change to open surgery or abort procedure if there are complications). L.B. highlight some pretty good statistics on their website "Cancer cure rate of 96.3%, PSA of less than 0.20, complete continence rate of 95.6% (pad free) and potency rate of 89.1%". They also offer HIFU so probably worth getting a 3rd opinion from them on this too.

User
Posted 16 Feb 2020 at 13:34

Hi Andy

Totally. More data in the mix the better. explored these options too but key points put me off focal treatments HIFU/cryo/nano knife/proton etc...prostate cancer tends to be multi focal so these treatments tend to just buy time. Not a bad thing as give more time for other approaches to evolve. I’d be inclined to have a chat with the prof whocannotbenamedonhere as he pioneers laparoscopic urological surgery in the uk. I suspect he probably has exposure to your case types? But yes talk to all...UCLH, Marsden and Guys (London Bridge) and see which fits you best. By view of surgery at worse case is it buys me time for immunotherapy to evolve as my ex works in this field. TG

User
Posted 16 Feb 2020 at 14:43
Consultants can have quite widely differing views on treatment, especially when considering an application for a specific patient. Sometimes there is a difference between conclusions from studies on similar lines. It's rather like national polls where even asking the small question those conducting the polls sometimes come up with significantly different figures. Medicine and treatments are continually evolving and advancing and it takes so long to look back and analyse follow up results over a timespan of 10 years or so. Whilst it may lead to some confusion, it is not very surprising that patients may accept as 'gospel' what they may read in one survey whereas had they read a different one they may have been led to believe something different. As a generalisation clinicians tend to favour their own discipline but there may be a better method of administering it that is not available at their particular hospital.
Barry
User
Posted 16 Feb 2020 at 17:30
I rest my case.

Go and see the aforementioned Professor Whocannotbenamedhere who looks after my mate on 5yrs Active Surveillance, or someone else as highly-esteemed.

See what they think about your condition. I wouldn’t advocate anything that would prejudice your health, bearing in mind you have a particularly benign form of cancer.

You can do a Google search for ‘Santis Prostate’

Cheers, John.

User
Posted 16 Feb 2020 at 20:22
My husband opted for a focal HIFU on 23rd January to treat a G7 (3+4) tumour. He is 56 and quality of life is very important to him. He has no incontinence and 100% strength erections (We have not yet tried without a tablet as it’s still early days post procedure).

He has been back at work for 2 weeks, does not get up at night to pee or have any other symptoms.

We did consult a surgeon who specialises in removal of a prostate after a focal treatment and he said that door is definitely not closed should this HIFU fail to control the PCa. However I don’t think many surgeons have much experience in this area.

He will get a PSA in April and constant monitoring of course even if the result is low. However whatever option you choose you will have to undergo a lifetime of monitoring I am afraid.

So far so good for my husband. Clearly he still has a prostate ( this was his second focal treatment) and we understand why many would prefer to have it removed sooner rather than later and he may well get to that point.

However for now he was worried about the risks associated with an over treatment ( incontinence, erectile dysfunction, inability to work, Depression etc).

A leading focal professor did his HIFU and said the risk of an anal fistula following a HIFU was 1/900 but it had never happened to one of her patients. A has no problem so her record lives on! I would want a very experienced HIFU specialist if I was going to opt for it therefore.

Good luck

Clare

User
Posted 16 Feb 2020 at 21:34

Hard call

for me with my knowledge of the histopathology it’s a mess. Without the RS + RP I would have maybe gambled with focal. Not easy outcome and home you can work out what best fits for you, TG 

User
Posted 16 Feb 2020 at 22:14

Hi Clare, pleased the recovery of your husband from HIFU is going well. I remember how from the outset one of your/his prime concerns in settling for focal treatment was to try to avoid the risk of over treatment by more conventional Prostatectomy or Radiation. The effects of treatment by HIFU from data so far shows it impacts men less severely and can be repeated in need. It does have it's limitations, as the cancer has to be in a position where the probe can focus the ultrasound and there can be situations where the extent of cancer is such that one of the conventional treatments may be a better alternative.

My situation is more unusual because I have already had RT and salvage HIFU, the latter by the same surgeon as your husband. She has said that if the MRI I am having next month shows the cancer has not spread to the seminal vesicles (or outside the prostate I assume), she would consider treating me again with HIFU. However, due to the small tumour seen on my last MRI being very close to my rectum, she has cautioned that there would be a greater risk of a Fistula forming. (Hopefully, I wouldn't be her first!). HIFU can be considered more of a 'niche' primary treatment for suitable men interested in minimizing side effects but aware that further focal or other treatment is more likely although not always needed in due course. It's more widely used as a salvage treatment for failed RT.

Edited by member 16 Feb 2020 at 22:42  | Reason: Not specified

Barry
User
Posted 17 Feb 2020 at 00:19

Oh Barry

Definitely a hard call ( as Tech Guy said above)  for you as well.

As we all know everyone’s journey varies and as you say a  slightly different position of what they are treating changes the complexity and therefore the odds.

So A has sailed through the HIFU  but it sounds like a higher risk for you ( I only knew about fistula risk from this forum - you guys have been amazing at getting the  detail out there!)

But yes since A’s original low risk diagnosis at the end of 2016 we have been attempting  (and achieving) to avoid over treatment so his QOL has not been impacted by either of his 2 focal treatments. 

However doing nothing would have been an under treatment for sure  The HIFU ‘long weekend’ has barely blipped his life. If it hasn’t done the job and something more radical needs doing then he has had time to adjust to the fact he has cancer and has tried to avoid any treatment that could change our lives. I think this will help him mentally if and when that radical door has to be opened. 

if we could guarantee the outcome Techguy got the decision would be easy, however John (Bollinge) (if I understand correctly ) had the same procedure by the same surgeon and it’s been goodbye erections (plus his amusing take on his his lost inches!).


A hard call indeed for you both. 

Clare

 

User
Posted 17 Feb 2020 at 16:40
I had Brachytherapy which so far has been successful. I asked my urologist before the brachytherapy if surgery was possible afterwards should it be needed. He told me that he does do surgery after brachy, but not all surgeons will/can do it. The risks are higher and bleeding can be a problem so it is not undertaken lightly. Hopefully I will never need surgery, anyway my urologist has changed so finding him again might be difficult!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 17 Feb 2020 at 18:42

I have reconsidered my earlier post, and I would say: take your time researching all options. Gleason 6 suggests that the Tumour is unlikely to do anything dramatic soon, and could just do nothing. There is a danger of overtreatment, and with all treatments you would need to live with the long term effects. Would active surveillance be on option over the next months/years be an option? At least until you have considered all options fully...

My own experience: similar age. Surgery surprisingly easy (for me). Mesh was a challenge for  the surgeon, but not a major problem. Continence is 100% (as predicted by the surgeon). But I will have ED going forward. For me, this was a small price to pay for a shot at a long life (I had a Gleason 9 tumour). But with a low risk tumour, then your considerations would be different.

Best of luck whatever you decide. But take your time...

Edited by member 17 Feb 2020 at 18:43  | Reason: Not specified

User
Posted 19 Feb 2020 at 18:28

Thought I would just update that I have decided against HIFU as I had a brief telephone conversation with a London Consultant who believes that due to 7 out of 10 positive cancer samples HIFU would not be the best option as it suggests the cancer is not confined to one area making HIFU less effective and less likely to get the results needed. I am seeing this consultant (who can't be named here) on Friday, he also specialises in the Retzius sparing procedure. I have picked up my histology and mri report today and notice it has been upgraded from Gleason score 3+3 (6) to 3+4 (7) as "two cores (A1 and A2) show foci of fused and small poorly formed glands, amounting to a focal pattern 6". Can anyone help me in understanding this? 

User
Posted 20 Feb 2020 at 22:01

Hi Andy

i’d clarify with the consultant. From way I interpret it they are saying two anterior samples show Gleason 6 disease. Basically focal areas of non-normal cells hence the comments on how they are formed. Normal cells tend to looks similar and well differentiated ie similar and connected in the cellular matrix is an ordered fashion on the eye. When the cells mutate and change over time this linear spread becomes more clumped and disorganised. Hope that makes sense. 3+3 ie Gleason 6 look very similar to normal cells (low grade). If you have some type 4 cells then some are more dispersed in the cellular matrix instead of being evenly spread out.

TG

User
Posted 20 Feb 2020 at 23:31
My reading of that is that although the majority of cancerous cells were a G3, you have two small areas where the cell pattern includes what would in the past have been considered a 3 but is now treated like it is a G4.

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

User
Posted 11 Mar 2020 at 19:12

Today I had pre op assessment in London and op is booked in for Wednesday 18th March. Surgeon has seen MRI pictures sent from NHS consultant and confident that he can save all nerves on one side of prostate and most on other side. Fingers crossed everything will go to plan and just hope this coronavirus situation won't affect anything. I feel I am in very good hands and will post my progress over next few weeks. 

User
Posted 11 Mar 2020 at 22:11

Best of luck Andy. Hope everything goes smoothly and you can enjoy the recovery with a good outcome. Keep us posted! TG

User
Posted 14 Mar 2020 at 21:49

Good luck Andy.

If you haven't already, buy fybogel to take for several days before and after the op'. It will keep your bowels moving and prevent unnecessary straining.

Neil

User
Posted 14 Mar 2020 at 22:19

Thanks guys. Will keep you posted and good shout re Fybogel will get some tomorrow. Am currently self isolating lol as a bit paranoid I don't get this virus. I live in Swansea and ten more cases identified with it here today!

User
Posted 30 Mar 2020 at 13:54

An update as promised: Managed to have the operation Wednesday 18th March, In fact I was very lucky as informed that Princess Grace Hospital along with other hospitals considering ceasing all operations due to the coronavirus (cv) situation. I didn't think I was going to be fortunate enough but had the call on the Tuesday to say that everthing was going ahead. The surgeon P.S. who cant be named here performed (Da Vinci) a nerve sparing, Retzius-sparing and bladder neck sparing robotic radical prostatectomy. The three and half hour procedure went without any real complications and due to CV I was discharged on the Thursday 19th. Stayed in London with my wife for the week. Managed to persevere with the catheter for the 8 days required, it was more of a nuisance than painful and required emptying on practically an hourly basis throughout the daytime.

Thursday 26th March had a follow up consultation and catheter removed with no real problems and met with consultant who gave histology which showed Gleason 3+4=7, Stage pT3a, there was a 2mm gleason 3=3=6 extraprostatic extension at the base/bladder neck margin. In a nutshell there is a 10% in 10 years or 15% in 20 years of the cancer re occurring and the risk of dying is quite low at 1% in 15 years. He also said that the risk of needing RT in the future is low.

Overall I am pleased with the result and since returning home I am practising the pelvic floor exercises given. Completely dry through the night and 95% in the day so far, a couple of dribbles if I laugh or occasionally when I bend down to pick something up. ED is expected at this stage and will hopefully improve as time goes on. PSA test will be in the next 2 months. Fingers crossed!

User
Posted 30 Mar 2020 at 14:11

Great news and I bet that’s a relief to be on the other side in a timely manner. Plus you had a great surgeon. Hope the continence is fine (dribbles for me resolved almost spot on week 6 when the stitches started to dissolve) and ED issues resolve. I was put on low dose (Daily 5mg) tadalafil A month post op and that’s helped a lot. Onwards and upwards! 

cheers

TG

Edited by member 30 Mar 2020 at 14:13  | Reason: Not specified

User
Posted 30 Mar 2020 at 14:26

Thanks TG, I'm feeling confident regarding continence as time goes on and will just persevere with pads for the time being. Onwards and upwards it is lol!

User
Posted 30 Mar 2020 at 14:41

Should be fine. I was dripping on and off up to six weeks even though completely fine on day of TWOC. There is a lot of swelling plus stitches can hold the urinary sphincter open slightly under tension according to the profs post op guidelines/notes. Fingers crossed it resolves as that six week mark was spot on. Other have been dry straight away but varies I guess case by case. I wore pads daily until about week 7 or 8 just for reassurance and since then just carry one with me but not needed at all. Only mishaps I have had were week 12 at the gym I leaked a couple of drops. And after a barrel of beer wet myself while comatosed.. tend to stick with wine these days as less volume. Gym no issues at all. pelvic floor definitely very helpful to manage stress leaks but I don’t get those either now so can cough, sneeze, pass wind without issue. 😀

User
Posted 29 May 2020 at 22:15

I thought I would update my current situation approx 2 months post RP. My psa results came back this week as <0.1 micrograms per litre which I am well pleased about. I am practically dry and wearing a safety pad on occasions (at work in the day or if out walking in the evening) best days I am completely dry and worse case in a day in past month is approx 30ml leakage. Walking for over an hour in the evening seems to be the hurdle as at that time I get sphincter muscle fatigue and can occasionally leak approx 3-5ml which is manageable and have been told by the consultant to up my pelvic floor exercises to 6 times daily to strengthen the muscle. ED is still an issue and was prescribed Tadalafil 5mg daily, however I was intolerant to this so have now been prescribed Sildenafil 25mg daily for the time being. Overall I am pleased with the progress and am always grateful to this group for their sound ongoing support on my journey. Thank you!

Edited by member 29 May 2020 at 22:22  | Reason: Not specified

User
Posted 30 May 2020 at 06:35
I don't know if this will help, but I had my op on the 9th March and was also experiency some difficulty with small leaks at the end of my walks. I found that if I concentrated I could really tighten the pelvic floor while walking and feeling the need to pee. This seems to have done the trick. Not worn a pad the last 4 days and had no leaks.
 
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