I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Prostate cancer treatment

User
Posted 03 Jan 2020 at 21:21

Hi 


I am 50 years old and have been diagnosed with prostate cancer earlier this week. It is contained within the prostate and I was told that the Gleason score was 7 (4+3) , PSA level is 4.9.


I have been offered 4 options:


1.robotic assisted laparoscopic prostatectomy 


2.brachytherapy 


3.external beam radiotherapy and hormones


4.active surveillance


 


in the report it says that I am suitable for all options favouring RALP (surgery). I would appreciate any advice or experience on the various types of treatments mentioned and it’s side effects. I need to let the hospital know by next week of my preferred treatment


Thank you 

User
Posted 03 Jan 2020 at 23:27
"There are very few people who say they regret their choice whatever it is."

Sorry Peter, I disagree with that a bit. There are plenty of men who regret their choice, particularly those whose treatment failed, those who felt that no one had explained the potential side effects and are then shocked by the aftermath of their choice, and (especially) those whose specialist had such an ego that they glossed over the potential downsides.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2020 at 10:19

Hi Andy


Sorry to hear your news Andy but there is light at the end of the tunnel hang in there and look at the options. I had the same grade cancer as you when it was upgraded to Gleason 7 (3+4) post surgery (biopsy showed 3+3).


in about 40% of cases Gleason scores are generally upgraded at least one point.


I was also offered active surveillance but felt given my knowledge of cancer and the cell pathology I felt a more proactive approach was needed.


 I reviewed focal therapies is offered at UCLH in London but felt given in my case that at least four quadrants of the prostate were affected with five tumour sites detectable via 3T mpMRI I extrapolated that it’s likely there will be more sites that aren’t detectable at this stage.


I also reviewed radiation treatment from the options of proton beam, which is very very new, and more conventional electron beam which we know as standard radiotherapy although have evolves to more targeted therapies via either guided via image data or computer in the case of say CyberKnife.


During my research I became aware of a new approach with robotic assisted radical prostatectomy using the Retzius technique which goes in under the bladder that’s avoiding a lot of the disturbances involved with traditional radical prostatectomy and significantly improving the outcome and outlook in terms of incontinence. Additionally I also requested that neuro safe was added during the surgical procedure. This is a very new technique/approach and essentially has a pathologist with a microscope on standby during the operation to take frozen sections as the surgeon removes them to check that the margins are safe and free of cancer cells. The net effect of this is to allow the surgeon to make a much more informed approach with nerve sparing graded margins.



Nerve sparing during the operation is  very key to your outcome in terms of erectile dysfunction and potential problems in that area going forwards.


The other key factor in consideration was the surgeon to be used and I was conscious that it makes sense to use a surgeon who has high volume Data and very good outcome statistics. Part of my investigation part involved talking to people on this fantastic site Plus also making contact with others more locally to get a view on their surgical experiences and more importantly to talk to people of been through surgery using these new techniques.


I was very fortunate to be able to talk to a number of people that have had the Retzius sparing robotic assisted Radical prostatectomy with the neurosafe and also found one of the top surgeons who pioneers this technique as well as teaches it to surgeons around Europe. 


Given all this information and reassurance from patients they’ve already been through this specific procedure I contacted the professor in question and had a consultation at the beginning of November last year. At the first meeting I knew I’d made the right decision given the evident depth of knowledge demonstrated during our conversation and felt it was right to move forward to surgery with a reasonable probability of a curative outcome (assuming no stray cells). So surgery was scheduled for the end of November at London Bridge using a Da Vinci Xi system. 



Surgery/post surgery was very pain free and I was out of hospital after two nights stay. I had to wear a catheter bag for 15 days following surgery which is a little uncomfortable but manageable for the short term.


Like many of the other patients that have had the new technique of surgery I’m experiencing excellent outcome in terms of incontinence. From the point of immediate catheter removal I had control albeit some leaks and drips over the following weeks which have improved dramatically. Essentially what I was experiencing were leak and stress-related leaks I coughing sneezing and passing wind which would induce some kind of liquid output but this was captured by the pad. It’s important to consider during this period especially given that I had a catheter inserted In my you urethra that this is still inflamed and it needs to settle and indeed it has over the last 2 to 3 weeks. Additionally with stitches have been made to join the bladder and the sphincter or valve where the prostate has been removed the stitches actually hold the sphincter slightly open under tension until the start to dissolve at about six weeks. So right now I’m using one pad every 24 hours mostly for reassurance but I can envision this not being needed in the next few weeks but I’m perfectly accepting of the odd stress leak on an occasional basis given that the ultimate goal of the treatment to was to remove the cancer.


in terms of the stats detailed by the professor given his data over the last few years with the Retzius approach it shows that in 80% of cases continents is achieved within a short space of time with the biggest changes being in the first six weeks of stitches dissolve. A further 19% of patients may take up to a yearTo experience continence based on the fact that the scar you formed around the sphincter and rebuilding of the bladder takes about 12 months to soften and become more pliable. In 1% of cases Some patients are left incontinent and need some intervention surgical or otherwise.


Im also happy to report that my potency is gradually returning. I noticed a tingling in the area the weekend even after surgery, which was quite surprising, and I have had semi erections in the weeks following. I’m talking 5mg tadalafil daily as this was recommended by my surgeon to aid blood flow into the area and help the nerves to repair with a view of giving improve direction function over time. I would say now I have 70 to 80% functionality and are able to have penetrative sex.


So in summary I’m very happy that I took the option of Retzius sparing robotic assisted radical prostatectomy with neuro safe and more specifically found an amazing surgeon that ticked all the boxes.


If you would like to chat about options and thoughts going forwards I’ll be very happy to help. Obviously choices are very individual and you have to select what’s right for you going forwards.


I would be mindful in making the decision within say a month given the grade of cancer and generally because it will be upgraded post surgery but also in the knowledge that the majority of cancers tend to be around the anterior anyway and you want to capture it while localised with a good margin.


Immediately after my surgery the professor discussed with me that the margins were very close indeed and initial thoughts were it had crossed the prostatic shell. However when histology reported back a week later all margins were clear and all the other areas also clear which was fantastic news and also a big relief.


Best of luck with your journey and although it’s not an easy time you’ll find excellent support here and also recommend talking to any local prostate Cancer support groups as the more information you can get, at the very least allows for a more informed decision which is right for you.


TG


(apologies for any typos as I used Apple speech dictation 🤖)

Edited by member 04 Jan 2020 at 10:30  | Reason: Not specified

User
Posted 03 Jan 2020 at 23:10
You certainly do not need to tell the hospital by next week, you should take as much time as you need to see the different specialists and get full information to help you make the right decision. Start by calling the phone number at the top of this page and ordering the toolkit, or download it. This will give you all the info about the different treatments. You should also ask to see an oncologist to find out exactly what the plan would be for radiotherapy and / or brachytherapy. And if necessary, ask to see the surgeon again to find out things like whether the op would be nerve sparing, what % chance they think there is of you needing salvage treatment, the surgeon's experience and success rates for things like incontinence and erectile dysfunction (permanent or temporary).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 23:12
Sorry that you find yourself here, Andy.

Only you can decide what treatment is right for you (although with your diagnosis I wouldn't personally choose Active Surveillance!), so my recommendation would be to download the information sheets about the different treatment options and their side-effects from the information area of this site. They are extremely comprehensive. If you have any medical questions you can phone the wonderful PCUK nurses Mon-Fri on the Freephone number at the top of the screen.

Very best wishes,

Chris
User
Posted 03 Jan 2020 at 23:21

Hi Andy,


There are quite a few threads on here with a similar question.   Everyone is different but there are some common points.


Your age and the size and location of your lesion might be factors as well as the Gleason and Stage.


For example as a younger person you might be more interested in your sex life than I was.


If it was fairly small and in the middle of the prostate you might feel more confident about having Active Surveillance.   Although I had Gleason 4+3 and was very keen to get it removed by surgery.  Largely because I was told it was near the edge of the prostate though.


Brachytherapy appears to be offered more although I don't know much about it.  It might have fewer, and lesser side effects on such as incontinence and erectile dysfunction.


Surgery and Radiotherapy seem to have very similar outcomes although my own preference is that with surgery you know a more real result very quickly and you still have a full allowance of radiotherapy capacity if needed. 


That said there is never a certainty and probabilities are all people can offer.


I was offered the same options as you, but not Brachytherapy.  I had absolutely no doubt I wanted surgery and was very keen to have it.   There are very few people who say they regret their choice whatever it is.


My own feeling was it's best to make your mind up and get things moving.


Keep in touch.
Peter


p.s.  I noticed Lyn has recommended you don't rush.  That's fair enough and what medical staff often say as they say it's slow growing.   My own feeling was with a 4+3 that it might not be so slow and you never know.  Mine was upgraded to 4+4 when they got my prostate into the lab.  There is also a theory about people's mental capacity to withstand the thought of having a tumour within them  My capacity was very low, your's might be higher.


 

Edited by member 03 Jan 2020 at 23:27  | Reason: p.s. added

User
Posted 03 Jan 2020 at 23:21
PS I am surprised that they are offering active surveillance with a G7 (4+3) so you might want to talk that through with the PCUK nurses when you phone up for the toolkit. It may be that you only had one or two very small areas of cancer but usually the prevailing element of 4 in your Gleason would mean radical treatment is needed.

Also, worth you understanding that there are some guaranteed side effects of all the treatments, like dry orgasms and infertility, so if you were planning on still having children you may want to ask about freezing some sperm. Other side effects vary between treatments:-

RP leaves most men with incontinence, a shortened penis and erectile dysfunction (ED) . The incontinence is temporary for most men (90% are using one pad or day or less by 12 months) and ED is common but can improve either naturally or with the use of tablets, vacuum pump or injections for most men.

Radiotherapy and brachy can have the same side effects but instead of being immediate like surgery, they can develop years later.

Hormone treatment causes fatigue, loss of muscle and loss of libido. Men may have HT for a few months up to 3 years, depending on the onco.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2020 at 00:42

Hi Andy, which kind of bracytherapy LDR (also known as permanent seed) or HDR? 


I don't think they will be offering hormone therapy on its own, it slows the progression of cancer, and makes RT more effective, but it won't cure cancer on its own. 


My cancer was aggressive and outside the prostate so I was told the only sensible route for me was Hdr plus Ebrt, and 2 years of Hormone therapy.


The two lots of radiotherapy were not too troublesome with no known side effects to date (but side effects of Ht are probably masking them). 


The Ht means no sexual function for the last two years, not too troublesome as I have no sexual desire because of the Ht. Orgasms are dry, when I can be bothered to have one. I will be off Ht by April 2020 then I will find out whether things will return to anything near normal (I am expecting ED will be a problem). Once I'm off Ht we will find whether the RT killed the cancer. It will then be a case of monitoring psa for the rest of my life to see if the cancer returns. 


I guess it was easier for me as I had no options, you have a few. 


If when I have been off HT for a few months I regain sexual interest and function, and the psa stays low, then I will be praising this course of treatment, at the moment it is too early to say. 


 

Dave

User
Posted 04 Jan 2020 at 10:25

Hi Andy, it's hard to write using my phone so will reply later. If you read my profile there's some there and a link to a 4 page website detailing my experience.  One page is post op. 


In a nutshell it's 50% ED plus or minus 20%.  Occasional stress leak if full. No ejaculation. Occasional small leak when aroused.  I'm not good at following prescribed exercise discipline like kegels.   6 monthly blood tests.  After 3 months I was more or less normal. I don't let the above bother me. PSA tests are the big one.

User
Posted 04 Jan 2020 at 11:20
My friend is Gleason 4+3=7 and has been on active surveillance for five years. He is under the care of Professor Whocannotbenamedhere mentioned by TechGuy above. He has regular scans and tests.

A/S may or not be appropriate for you if you ‘want it out’, but I would definitely consider it if after further discussions with your doctors and second opinions, they concur, at least for a while, and possibly forever, that it is feasible.

Our Matron here, LynEyre, very graphically and accurately lists the potential side effects above of any treatments, which are not always mentioned in the hospital blurb. I am thinking particularly about a shrunken dick, which is quaintly referred to as a ‘change in physical appearance’ in medical parlance.😂😂😂

Best of luck whichever path you choose.

Cheers, John.
User
Posted 04 Jan 2020 at 20:30
Hi Andy,
as stated here already, do not be rushed.
Be prepared to question your surgeon. Include specific questions about ongoing support after your initial treatment. This will be a very important question if you might want surgery at a different hospital.
Techguy has completed invaluable research and there are without doubt a range of abilities for those performing the surgery. I am not sure all centres are collaborative.
There might now be a longer waiting list at London Bridge...Techguy.
Very often it appears the PC can be tamed/controlled but an important consideration is: What are the consequences? (Ref Lyn’s message).
Best
Kevin
User
Posted 05 Jan 2020 at 00:05

Hi Andy


This chap has had quite a bit of Hifu at UCLH. Hope it’s ok to post his site on here. I contacting him via this mid last year to find out thoughts etc and he was really helpful. Might be useful to feed into the mix. 


http://www.ahamm.co.uk/prostate/


Cheers


TG

User
Posted 05 Jan 2020 at 08:08

Hi Andy


You have had some brilliant responses from lots of people.  TechGuy and I had our respective surgeries at the same time at London Bridge with different surgeons. TechGuy has certainly done loads of research and his summary above is pretty comprehensive.


I am 59 and had very similar background scores to you and was offered same treatments which I very quickly narrowed to the two you are considering.


After months of procrastination as to which might be best I opted for RARP and am very glad I did; although MRI scans and biopsies suggested cancer was localised some cancer cells have been identified in some of the margin the surgeon decided to take out.  Brachy may therefore not have worked for me as these cells given they were outside the capsule where the Brachy seeds are focussed.  Surgery also gave me more ‘peace of mind’ and I was worried about always thinking that the cancer could still be inside etc.  


The one real plus side of surgery for me has been the speed of recovery and the limited SE I have experienced so far: coming up for 6 weeks post op.  No inconvenience, limited change to ‘physical appearance’ and reasonable erectile function.  I know I have been fortunate when I read some of the other posts of difficulties, pain and SE others have experienced. 


I now start the process of regular PSA tests - the first this week - to monitor PSA levels and hopefully the skill of the surgeon got it all and I will have readings that support this but if not then I know I will have the beam therapy option available to me.


Please fee free to contact me - in a private conversation if you like - if you want any more information about my personal and positive experience.


Best wishes


Grant60

Show Most Thanked Posts
User
Posted 03 Jan 2020 at 23:10
You certainly do not need to tell the hospital by next week, you should take as much time as you need to see the different specialists and get full information to help you make the right decision. Start by calling the phone number at the top of this page and ordering the toolkit, or download it. This will give you all the info about the different treatments. You should also ask to see an oncologist to find out exactly what the plan would be for radiotherapy and / or brachytherapy. And if necessary, ask to see the surgeon again to find out things like whether the op would be nerve sparing, what % chance they think there is of you needing salvage treatment, the surgeon's experience and success rates for things like incontinence and erectile dysfunction (permanent or temporary).
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 23:12
Sorry that you find yourself here, Andy.

Only you can decide what treatment is right for you (although with your diagnosis I wouldn't personally choose Active Surveillance!), so my recommendation would be to download the information sheets about the different treatment options and their side-effects from the information area of this site. They are extremely comprehensive. If you have any medical questions you can phone the wonderful PCUK nurses Mon-Fri on the Freephone number at the top of the screen.

Very best wishes,

Chris
User
Posted 03 Jan 2020 at 23:21

Hi Andy,


There are quite a few threads on here with a similar question.   Everyone is different but there are some common points.


Your age and the size and location of your lesion might be factors as well as the Gleason and Stage.


For example as a younger person you might be more interested in your sex life than I was.


If it was fairly small and in the middle of the prostate you might feel more confident about having Active Surveillance.   Although I had Gleason 4+3 and was very keen to get it removed by surgery.  Largely because I was told it was near the edge of the prostate though.


Brachytherapy appears to be offered more although I don't know much about it.  It might have fewer, and lesser side effects on such as incontinence and erectile dysfunction.


Surgery and Radiotherapy seem to have very similar outcomes although my own preference is that with surgery you know a more real result very quickly and you still have a full allowance of radiotherapy capacity if needed. 


That said there is never a certainty and probabilities are all people can offer.


I was offered the same options as you, but not Brachytherapy.  I had absolutely no doubt I wanted surgery and was very keen to have it.   There are very few people who say they regret their choice whatever it is.


My own feeling was it's best to make your mind up and get things moving.


Keep in touch.
Peter


p.s.  I noticed Lyn has recommended you don't rush.  That's fair enough and what medical staff often say as they say it's slow growing.   My own feeling was with a 4+3 that it might not be so slow and you never know.  Mine was upgraded to 4+4 when they got my prostate into the lab.  There is also a theory about people's mental capacity to withstand the thought of having a tumour within them  My capacity was very low, your's might be higher.


 

Edited by member 03 Jan 2020 at 23:27  | Reason: p.s. added

User
Posted 03 Jan 2020 at 23:21
PS I am surprised that they are offering active surveillance with a G7 (4+3) so you might want to talk that through with the PCUK nurses when you phone up for the toolkit. It may be that you only had one or two very small areas of cancer but usually the prevailing element of 4 in your Gleason would mean radical treatment is needed.

Also, worth you understanding that there are some guaranteed side effects of all the treatments, like dry orgasms and infertility, so if you were planning on still having children you may want to ask about freezing some sperm. Other side effects vary between treatments:-

RP leaves most men with incontinence, a shortened penis and erectile dysfunction (ED) . The incontinence is temporary for most men (90% are using one pad or day or less by 12 months) and ED is common but can improve either naturally or with the use of tablets, vacuum pump or injections for most men.

Radiotherapy and brachy can have the same side effects but instead of being immediate like surgery, they can develop years later.

Hormone treatment causes fatigue, loss of muscle and loss of libido. Men may have HT for a few months up to 3 years, depending on the onco.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 23:27
"There are very few people who say they regret their choice whatever it is."

Sorry Peter, I disagree with that a bit. There are plenty of men who regret their choice, particularly those whose treatment failed, those who felt that no one had explained the potential side effects and are then shocked by the aftermath of their choice, and (especially) those whose specialist had such an ego that they glossed over the potential downsides.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2020 at 23:56

Thank you for all your responses guys really appreciated. Peter following your operation what side effects did you experience and are you still experiencing them?


active surveillance was an option but I have ruled it out as I know it needs to be treated. I am still abit young so I am more worried about long term side effects. Thank you once again. 

User
Posted 04 Jan 2020 at 00:42

Hi Andy, which kind of bracytherapy LDR (also known as permanent seed) or HDR? 


I don't think they will be offering hormone therapy on its own, it slows the progression of cancer, and makes RT more effective, but it won't cure cancer on its own. 


My cancer was aggressive and outside the prostate so I was told the only sensible route for me was Hdr plus Ebrt, and 2 years of Hormone therapy.


The two lots of radiotherapy were not too troublesome with no known side effects to date (but side effects of Ht are probably masking them). 


The Ht means no sexual function for the last two years, not too troublesome as I have no sexual desire because of the Ht. Orgasms are dry, when I can be bothered to have one. I will be off Ht by April 2020 then I will find out whether things will return to anything near normal (I am expecting ED will be a problem). Once I'm off Ht we will find whether the RT killed the cancer. It will then be a case of monitoring psa for the rest of my life to see if the cancer returns. 


I guess it was easier for me as I had no options, you have a few. 


If when I have been off HT for a few months I regain sexual interest and function, and the psa stays low, then I will be praising this course of treatment, at the moment it is too early to say. 


 

Dave

User
Posted 04 Jan 2020 at 10:19

Hi Andy


Sorry to hear your news Andy but there is light at the end of the tunnel hang in there and look at the options. I had the same grade cancer as you when it was upgraded to Gleason 7 (3+4) post surgery (biopsy showed 3+3).


in about 40% of cases Gleason scores are generally upgraded at least one point.


I was also offered active surveillance but felt given my knowledge of cancer and the cell pathology I felt a more proactive approach was needed.


 I reviewed focal therapies is offered at UCLH in London but felt given in my case that at least four quadrants of the prostate were affected with five tumour sites detectable via 3T mpMRI I extrapolated that it’s likely there will be more sites that aren’t detectable at this stage.


I also reviewed radiation treatment from the options of proton beam, which is very very new, and more conventional electron beam which we know as standard radiotherapy although have evolves to more targeted therapies via either guided via image data or computer in the case of say CyberKnife.


During my research I became aware of a new approach with robotic assisted radical prostatectomy using the Retzius technique which goes in under the bladder that’s avoiding a lot of the disturbances involved with traditional radical prostatectomy and significantly improving the outcome and outlook in terms of incontinence. Additionally I also requested that neuro safe was added during the surgical procedure. This is a very new technique/approach and essentially has a pathologist with a microscope on standby during the operation to take frozen sections as the surgeon removes them to check that the margins are safe and free of cancer cells. The net effect of this is to allow the surgeon to make a much more informed approach with nerve sparing graded margins.



Nerve sparing during the operation is  very key to your outcome in terms of erectile dysfunction and potential problems in that area going forwards.


The other key factor in consideration was the surgeon to be used and I was conscious that it makes sense to use a surgeon who has high volume Data and very good outcome statistics. Part of my investigation part involved talking to people on this fantastic site Plus also making contact with others more locally to get a view on their surgical experiences and more importantly to talk to people of been through surgery using these new techniques.


I was very fortunate to be able to talk to a number of people that have had the Retzius sparing robotic assisted Radical prostatectomy with the neurosafe and also found one of the top surgeons who pioneers this technique as well as teaches it to surgeons around Europe. 


Given all this information and reassurance from patients they’ve already been through this specific procedure I contacted the professor in question and had a consultation at the beginning of November last year. At the first meeting I knew I’d made the right decision given the evident depth of knowledge demonstrated during our conversation and felt it was right to move forward to surgery with a reasonable probability of a curative outcome (assuming no stray cells). So surgery was scheduled for the end of November at London Bridge using a Da Vinci Xi system. 



Surgery/post surgery was very pain free and I was out of hospital after two nights stay. I had to wear a catheter bag for 15 days following surgery which is a little uncomfortable but manageable for the short term.


Like many of the other patients that have had the new technique of surgery I’m experiencing excellent outcome in terms of incontinence. From the point of immediate catheter removal I had control albeit some leaks and drips over the following weeks which have improved dramatically. Essentially what I was experiencing were leak and stress-related leaks I coughing sneezing and passing wind which would induce some kind of liquid output but this was captured by the pad. It’s important to consider during this period especially given that I had a catheter inserted In my you urethra that this is still inflamed and it needs to settle and indeed it has over the last 2 to 3 weeks. Additionally with stitches have been made to join the bladder and the sphincter or valve where the prostate has been removed the stitches actually hold the sphincter slightly open under tension until the start to dissolve at about six weeks. So right now I’m using one pad every 24 hours mostly for reassurance but I can envision this not being needed in the next few weeks but I’m perfectly accepting of the odd stress leak on an occasional basis given that the ultimate goal of the treatment to was to remove the cancer.


in terms of the stats detailed by the professor given his data over the last few years with the Retzius approach it shows that in 80% of cases continents is achieved within a short space of time with the biggest changes being in the first six weeks of stitches dissolve. A further 19% of patients may take up to a yearTo experience continence based on the fact that the scar you formed around the sphincter and rebuilding of the bladder takes about 12 months to soften and become more pliable. In 1% of cases Some patients are left incontinent and need some intervention surgical or otherwise.


Im also happy to report that my potency is gradually returning. I noticed a tingling in the area the weekend even after surgery, which was quite surprising, and I have had semi erections in the weeks following. I’m talking 5mg tadalafil daily as this was recommended by my surgeon to aid blood flow into the area and help the nerves to repair with a view of giving improve direction function over time. I would say now I have 70 to 80% functionality and are able to have penetrative sex.


So in summary I’m very happy that I took the option of Retzius sparing robotic assisted radical prostatectomy with neuro safe and more specifically found an amazing surgeon that ticked all the boxes.


If you would like to chat about options and thoughts going forwards I’ll be very happy to help. Obviously choices are very individual and you have to select what’s right for you going forwards.


I would be mindful in making the decision within say a month given the grade of cancer and generally because it will be upgraded post surgery but also in the knowledge that the majority of cancers tend to be around the anterior anyway and you want to capture it while localised with a good margin.


Immediately after my surgery the professor discussed with me that the margins were very close indeed and initial thoughts were it had crossed the prostatic shell. However when histology reported back a week later all margins were clear and all the other areas also clear which was fantastic news and also a big relief.


Best of luck with your journey and although it’s not an easy time you’ll find excellent support here and also recommend talking to any local prostate Cancer support groups as the more information you can get, at the very least allows for a more informed decision which is right for you.


TG


(apologies for any typos as I used Apple speech dictation 🤖)

Edited by member 04 Jan 2020 at 10:30  | Reason: Not specified

User
Posted 04 Jan 2020 at 10:25

Hi Andy, it's hard to write using my phone so will reply later. If you read my profile there's some there and a link to a 4 page website detailing my experience.  One page is post op. 


In a nutshell it's 50% ED plus or minus 20%.  Occasional stress leak if full. No ejaculation. Occasional small leak when aroused.  I'm not good at following prescribed exercise discipline like kegels.   6 monthly blood tests.  After 3 months I was more or less normal. I don't let the above bother me. PSA tests are the big one.

User
Posted 04 Jan 2020 at 11:20
My friend is Gleason 4+3=7 and has been on active surveillance for five years. He is under the care of Professor Whocannotbenamedhere mentioned by TechGuy above. He has regular scans and tests.

A/S may or not be appropriate for you if you ‘want it out’, but I would definitely consider it if after further discussions with your doctors and second opinions, they concur, at least for a while, and possibly forever, that it is feasible.

Our Matron here, LynEyre, very graphically and accurately lists the potential side effects above of any treatments, which are not always mentioned in the hospital blurb. I am thinking particularly about a shrunken dick, which is quaintly referred to as a ‘change in physical appearance’ in medical parlance.😂😂😂

Best of luck whichever path you choose.

Cheers, John.
User
Posted 04 Jan 2020 at 20:30
Hi Andy,
as stated here already, do not be rushed.
Be prepared to question your surgeon. Include specific questions about ongoing support after your initial treatment. This will be a very important question if you might want surgery at a different hospital.
Techguy has completed invaluable research and there are without doubt a range of abilities for those performing the surgery. I am not sure all centres are collaborative.
There might now be a longer waiting list at London Bridge...Techguy.
Very often it appears the PC can be tamed/controlled but an important consideration is: What are the consequences? (Ref Lyn’s message).
Best
Kevin
User
Posted 04 Jan 2020 at 23:53

Thank you guys for all your replies. I can honestly say that all the information has been very informative and I really appreciate the time that all of you have put in to your replies. 


I have narrowed my options to either RALP or brachytherapy. If any of you can throw more information on the side effects and effectiveness of either of these two treatments it would be greatly appreciated. 


I have read up on alternative other treatments (HIFU and cryotherapy) have any of you guys had either one of these? And if so any information would be very useful. Also if any of you know whether any of these alternative treatments would be available on the nhs?


 


thanking you all once again.


Andy

User
Posted 05 Jan 2020 at 00:05

Hi Andy


This chap has had quite a bit of Hifu at UCLH. Hope it’s ok to post his site on here. I contacting him via this mid last year to find out thoughts etc and he was really helpful. Might be useful to feed into the mix. 


http://www.ahamm.co.uk/prostate/


Cheers


TG

User
Posted 05 Jan 2020 at 08:08

Hi Andy


You have had some brilliant responses from lots of people.  TechGuy and I had our respective surgeries at the same time at London Bridge with different surgeons. TechGuy has certainly done loads of research and his summary above is pretty comprehensive.


I am 59 and had very similar background scores to you and was offered same treatments which I very quickly narrowed to the two you are considering.


After months of procrastination as to which might be best I opted for RARP and am very glad I did; although MRI scans and biopsies suggested cancer was localised some cancer cells have been identified in some of the margin the surgeon decided to take out.  Brachy may therefore not have worked for me as these cells given they were outside the capsule where the Brachy seeds are focussed.  Surgery also gave me more ‘peace of mind’ and I was worried about always thinking that the cancer could still be inside etc.  


The one real plus side of surgery for me has been the speed of recovery and the limited SE I have experienced so far: coming up for 6 weeks post op.  No inconvenience, limited change to ‘physical appearance’ and reasonable erectile function.  I know I have been fortunate when I read some of the other posts of difficulties, pain and SE others have experienced. 


I now start the process of regular PSA tests - the first this week - to monitor PSA levels and hopefully the skill of the surgeon got it all and I will have readings that support this but if not then I know I will have the beam therapy option available to me.


Please fee free to contact me - in a private conversation if you like - if you want any more information about my personal and positive experience.


Best wishes


Grant60

User
Posted 05 Jan 2020 at 17:55
Hi Andy,

I had HIFU at UCLH performed by Prof C M as mentioned in the blog linkTechGuy posted. This is a very informative blog and updates the patient's progress. He previously had HIFU but needed it repeated. I was hoping mine could be repeated too but there is calcification in my Prostate which as Pro M E mentions in one of the videos is a reason why the procedure cannot be done and another reason is if the tumour is in a position the probe cannot be focused on or it is too close to the rectum. This is a very good procedure for suitable patients. The blog includes some very interesting videos which are not just confined to HIFU and I recommend anybody who is interested in PCa view these.
Barry
User
Posted 05 Jan 2020 at 21:01

I think you need a little longer than a week to think about it - I took 5 weeks before choosing HT & RT ! Hope things go well for you.

User
Posted 05 Jan 2020 at 21:12
HIFU has had better results as a salvage treatment than as a primary treatment; recurrence rates are quite high I think so while it is good that it can be repeated, it is not so good that it needs to be repeated. Similarly, proton beam therapy has not done well in prostate cancer trials although it is changing the world for brain tumours and ocular cancers.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2020 at 21:39

Totally agree. Knowing that PCa tends to be multifocal pushed me away from any focal therapy. At best I guess it buys time but could leave medium/high grade smaller tumours that haven’t been detected by imaging unchecked. 


plus some higher grade PCa tumours don’t always elevate PSA 🥴

User
Posted 05 Jan 2020 at 22:30

Originally Posted by: Online Community Member
plus some higher grade PCa tumours don’t always elevate PSA 🥴


 


Have you read how my father-in-law died? PSA fell inexplicably from 21 to 16 and then to 1.2 - as he was on AS, this clearly made no sense but his doctors weren't concerned. There was no way of knowing that the cancer had spread to his liver and kidneys until 24 hours before he died. I don't think it is about higher grade tumours though; it is about those rare ones that don't behave like adenocarcinoma.  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Jan 2020 at 13:25

Hi Lyn


I did and sorry to hear that.


Its the less common prostate cancers like neuroendocrine (small cell) and such like that made me shy away from AS and just bite the bullet with surgery. My ex works as a researcher and it’s something we chatted about plus I read quite a few papers on the subject. 


Hopefully new tests coming will increase detection efficiency plus also provide data on rarer types.


TG


 

User
Posted 07 Jan 2020 at 19:27
Except that usually it would be picked up in the biopsy, and men with a mix of adeno and another one would have some PSA rise to show for it. The main problem is if normal treatment is successful for the adeno but leaves the way clear for the small cell / mucinour or whatever. In Stan's case, the jury is out on whether there was an element of SCC or similar but definitely, as the cancer in situ progressed it stopped producing PSA - an extremely rare situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Jan 2020 at 19:51

Yes, so many variables that’s for sure. In my case the prof said the 3T mpMRI (very new system) has missed some tumour and TPM also missed some it would appear. Targeted  biopsy but some random samples were also taken. Smallest core was 0.5mm 3+3 and largest 9mm. I guess until histology can be done on the whole organ you never know 100%

 
Forum Jump  
©2022 Prostate Cancer UK