Hello John and welcome to the site.
It's a big decision to make and you are very young. I am sure you will get advice from members other than myself.
Mine is that bearing in mind your age and the fact that it is contained,please don't rush into anything without checking other options than Radical Prostatectomy.
Did you have a knee jerk reaction and say "Let's get it out" or are you open to other treatments?
Please go to Publications and download The Toolkit. This is information which may help you with your choice. It will also help you form questions to ask your consultant
What is your PSA by the way.
Whatever route you take, the choice has to be yours. Men on here can share their experiences, good and bad, but at the end of the day you will be the one living with your choice.
ALL of the treatments have the potential to have life changing side effects so it is important that you take the time to get it as right as you can.
Hopefully you will be advised by others.
You've come to the right place for advice and support anyway. Leaning shoulders we do in spades
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
"Just cut it out and your done". You need to check what all the treatments are that you are suitable for. You then need to think about quality of life issues as there are potentially life changing side effects to the treatments. With surgery you risk incontinence and erectile dysfunction.
Read as much valid info as you can so you can make an informed decision
All the best
Bri
User
I was 44 when I had RRP,
Gleason 7 (4+3)
PSA 8
T2(c)
Margins clear
I had zero hesitation in taking the surgeons and oncologists advice. I had incintinonce for about 6-7 weeks and ED was an issue for 7 months or so but daily cialis helped with that and 2 years later my sex life is normal again
Each to their own is true, for me I didn't fancy having the disease inside me and to have my prostrate zapped to jelly in the hope the cancer would go away
Radiotherapy is an option for me if it comes back but if I had not opted for surgery then there is no option to have it removed if I went for radiotherapy first
Some talk here about open surgery being the better option but my surgeon told me that he could only perform open (one nerve sparing) surgery as there was no local Da Vinci, but he strongly advised me to seek out Robotic Da Vinci - and I was then able to have both nerves spared - thankfully
Discuss these with the medics - they are the experts after all
User
My husband at 44 also opted for removal.
Diagnosed G6 upgraded to G7 (3+4) on removal. Clear margins apart from one biopsy site.
Da Vinci op with double nerve sparing and so far no incontinence and only very minor ED.
But we are still waiting for first PSA test to see if it has been successful.
Our surgeon did say if it was him he would have done the same.
User
Hello dodgy
I was 48 when I had it done. Click my picture and read my profile. Most folk are far luckier than I as I need ongoing treatment. It's hard to advise you but there is no easy way to treat this cancer without life changing side effects which can be quite traumatic to a young man. But you CAN work through them with a positive attitude and come out the other side ok. Best wishes
User
User
Dont forget only just recently Ben Stiller the amercian actor came out publicaly and told the world about his prostate cancer surgery he is 51, its worth reading his story just google it.
My advice listen to everything your surgeon tells you and ask lots and lots of question and discuss it with your family but the bottom line is the younger you have the surgery the better you can get back to normal.
I chose the full RP and after four months my incontenance is back to normal and now i am addressing the ED issue. Feeling great after having 36 sessions of Radiotherapy and awaiting my next blood test to check my PSA
I am glad I had the surgery, but each to their own, good luck whatever route you choose.
User
Funny that, Happy, as you had to have salvage RT so like Bri and my husband, your surgery was not successful?
Dodgy, perhaps you (and your wife) would find my thread 'one wife's story of ED' a helpful insight. My husband was 50 at diagnosis and I was 44. All is well now but he regrets rushing into the op; he feels now that he should have taken more time to understand exactly what to expect.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi LynEyre
i actually had adjuvant radiotherapy and have just managed to get my report of my treatment that the online nurse on here interpreted for me. here is what It reads
Your report indicates that when the prostate was closely examined in the Lab following surgery it was upgraded. In simple terms it appeared to have a somewhat higher grade than the original Gleason score and some cells had managed to come through the capsule.
I assume the seminal vesicles were removed at surgery. This means that radiotherapy will be needed to 'mop up' as they term it any cell which may be in the prostate 'bed and if any nodes were involved near to the prostate these will also be targeted by the radiotherapy. This is not uncommon and many men need this 'after treatment', which is disappointing but necessary.
I do think however that each person must make their own decision and consulting their family is an important part of the process.
User
Hi Dodgy,
I am rather surprised that you say your last PSA test was back in August last, notwithstanding you have since had a template biopsy. I would have thought a PSA test might have been considered as part of useful monitoring in the interim before treatment.
As regards treatment there are many consultants who still consider surgery as the 'Gold Standard' especially for younger men. My second opinion was of this opinion even though he was an expert on radiotherapy. It seems your Brachytherapy consultant is also favouring surgery in your case. However, there have been considerable advances in various forms of RT and some oncologists feel that can achieve as good a result with RT as surgery. This survey based on studies seems to bear this out. Check out according to staging etc. http://www.pctrf.org/intermediate-risk/?gclid=CP3F7P-gn9ECFagy0wodmogF2g
With regard to treatment with electricity, I wonder if it was IRE (Irreversable Electroporation) that was in mind. This treatment is also known as Nanoknife. High level electrical pulses are used to blow holes in cancer cells thereby causing them to die. The pulses are delivered via needles inserted into the prostate. It is available in Germany as here and was trialed at UCLH but ended there before July 2015 and I don't know anywhere else that uses it for PCa in the UK, although it is used for other cancers. http://prostata-center.de/index.php/en/treatment/nanoknife-ire
Barry |
User
Hi Barry great info.
Today I was at Kings College Hospital for Nanoknife consultation.
I have been given the option for Nanoknife and if that fails I can still have Prostate Removal at a later date. With the impact of having the Prostate removed I took the decision to go forward with Nanoknife. I have been so concerned with PR that once I met the team for Nanoknife today it felt just so right to try this first.
Could be as soon as May 2017.
Since I was diagnosed, today has been the first day I feel I know which direction I want to go with treatment and feel so relived and less confused, worried.
I'll post updates on how this all goes :)
Thanks for all the posts in this thread :)
User
Fantastic news about the trial, especially that you are happy with the treatment plan. I think it's great that less aggressive treatments are becoming available for the lower grade cancers. Will be good to hear updates on how it goes.
Julie
User
Hi Dodgy007,
I am now 3 weeks post RP after being told this was probably my best option - this as I have an agressive, high risk Gleason 9 strain.
I did research all the options, Hormone Therapy, Radio, Brachytherapy etc but again my Gleason 9 dictated the path I took.
Its early days and I have had some set backs with the catheter still in place after 3 weeks but I remain positive.
Cystogram booked in for tomorrow to see if I can wave goodbye to the catheter and then its just the waiting game again, until I get the pathologists results and subsequent PSA counts going forward.
Good luck on whatever path you take, but will be interesting to follow your progress through Nanoknife.
Tony.
Show Most Thanked Posts
User
Hello John and welcome to the site.
It's a big decision to make and you are very young. I am sure you will get advice from members other than myself.
Mine is that bearing in mind your age and the fact that it is contained,please don't rush into anything without checking other options than Radical Prostatectomy.
Did you have a knee jerk reaction and say "Let's get it out" or are you open to other treatments?
Please go to Publications and download The Toolkit. This is information which may help you with your choice. It will also help you form questions to ask your consultant
What is your PSA by the way.
Whatever route you take, the choice has to be yours. Men on here can share their experiences, good and bad, but at the end of the day you will be the one living with your choice.
ALL of the treatments have the potential to have life changing side effects so it is important that you take the time to get it as right as you can.
Hopefully you will be advised by others.
You've come to the right place for advice and support anyway. Leaning shoulders we do in spades
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hello dodgy
I was 48 when I had it done. Click my picture and read my profile. Most folk are far luckier than I as I need ongoing treatment. It's hard to advise you but there is no easy way to treat this cancer without life changing side effects which can be quite traumatic to a young man. But you CAN work through them with a positive attitude and come out the other side ok. Best wishes
User
User
Cheers Chris
I'm on the Road for Radical Prostatectomy but nothing set in stone.
Not met the Surgeon for that direction yet, that is in July. I did meet the Consultant for Brachytherapy who was about the same age as me and advised for removal. The Wife is saying "just cut it out and your done".
Need to lose weight for any operation so its the kick up the arse to lose weight and look after myself. Friends helping and joining the Gym tomorrow.
Got a lot of info packs from the hospital so just plodding through and reaching out for others experience, lot to take in.
User
"Just cut it out and your done". You need to check what all the treatments are that you are suitable for. You then need to think about quality of life issues as there are potentially life changing side effects to the treatments. With surgery you risk incontinence and erectile dysfunction.
Read as much valid info as you can so you can make an informed decision
All the best
Bri
User
Dont forget only just recently Ben Stiller the amercian actor came out publicaly and told the world about his prostate cancer surgery he is 51, its worth reading his story just google it.
My advice listen to everything your surgeon tells you and ask lots and lots of question and discuss it with your family but the bottom line is the younger you have the surgery the better you can get back to normal.
I chose the full RP and after four months my incontenance is back to normal and now i am addressing the ED issue. Feeling great after having 36 sessions of Radiotherapy and awaiting my next blood test to check my PSA
I am glad I had the surgery, but each to their own, good luck whatever route you choose.
User
Funny that, Happy, as you had to have salvage RT so like Bri and my husband, your surgery was not successful?
Dodgy, perhaps you (and your wife) would find my thread 'one wife's story of ED' a helpful insight. My husband was 50 at diagnosis and I was 44. All is well now but he regrets rushing into the op; he feels now that he should have taken more time to understand exactly what to expect.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi LynEyre
i actually had adjuvant radiotherapy and have just managed to get my report of my treatment that the online nurse on here interpreted for me. here is what It reads
Your report indicates that when the prostate was closely examined in the Lab following surgery it was upgraded. In simple terms it appeared to have a somewhat higher grade than the original Gleason score and some cells had managed to come through the capsule.
I assume the seminal vesicles were removed at surgery. This means that radiotherapy will be needed to 'mop up' as they term it any cell which may be in the prostate 'bed and if any nodes were involved near to the prostate these will also be targeted by the radiotherapy. This is not uncommon and many men need this 'after treatment', which is disappointing but necessary.
I do think however that each person must make their own decision and consulting their family is an important part of the process.
User
I was 44 when I had RRP,
Gleason 7 (4+3)
PSA 8
T2(c)
Margins clear
I had zero hesitation in taking the surgeons and oncologists advice. I had incintinonce for about 6-7 weeks and ED was an issue for 7 months or so but daily cialis helped with that and 2 years later my sex life is normal again
Each to their own is true, for me I didn't fancy having the disease inside me and to have my prostrate zapped to jelly in the hope the cancer would go away
Radiotherapy is an option for me if it comes back but if I had not opted for surgery then there is no option to have it removed if I went for radiotherapy first
Some talk here about open surgery being the better option but my surgeon told me that he could only perform open (one nerve sparing) surgery as there was no local Da Vinci, but he strongly advised me to seek out Robotic Da Vinci - and I was then able to have both nerves spared - thankfully
Discuss these with the medics - they are the experts after all
User
My husband at 44 also opted for removal.
Diagnosed G6 upgraded to G7 (3+4) on removal. Clear margins apart from one biopsy site.
Da Vinci op with double nerve sparing and so far no incontinence and only very minor ED.
But we are still waiting for first PSA test to see if it has been successful.
Our surgeon did say if it was him he would have done the same.
User
Thanks for all the replies.
Still not sure which way to go. Plus since my Template Biopsy I have had 2 Urine Infections and got just got back from the Doctors this morning to confirm I have another. My 3rd Infection since my Biopsy in Feb 17.
This many Infections normal ?
Got a call from Kings College Hospital last Friday asking me in for a chat about and Electric Type Therapy, anyone heard of this ?
Doctor said if I have a 4th infection to contact Kings College Hospital to investigate, on a 10 day course this time instead of 7.
Also my Urine flow since my biopsy is really weak and if I have to go pee, I HAVE TO GO lol then if I'm trying to pee into a Sample Bottle I hold the flow as hard as I can but still leak pee. This worries me if I opt for Prostate Removal even though I have been doing pelvic exercises.
User
Hi
I had Robotic Jan 4/17 at Leicester with nerve sparing and at 55 and this was my first op and a stay in hospital
I was 3+7 Gleason
Psa 3.7
The service and support and surgeon was excellent.
Catheter removed after two weeks strange sensation but you have to look at the bigger picture and it was ok don't worry about blood in urine in the early days or the blood thinning injections for a month .
I'm pretty continent and my Gentleman's Sausage is coming back !!
8 weeks later my psa is 0.1
So I may have to be zapped at some time
All the best
User
Hi Dodgy,
I am rather surprised that you say your last PSA test was back in August last, notwithstanding you have since had a template biopsy. I would have thought a PSA test might have been considered as part of useful monitoring in the interim before treatment.
As regards treatment there are many consultants who still consider surgery as the 'Gold Standard' especially for younger men. My second opinion was of this opinion even though he was an expert on radiotherapy. It seems your Brachytherapy consultant is also favouring surgery in your case. However, there have been considerable advances in various forms of RT and some oncologists feel that can achieve as good a result with RT as surgery. This survey based on studies seems to bear this out. Check out according to staging etc. http://www.pctrf.org/intermediate-risk/?gclid=CP3F7P-gn9ECFagy0wodmogF2g
With regard to treatment with electricity, I wonder if it was IRE (Irreversable Electroporation) that was in mind. This treatment is also known as Nanoknife. High level electrical pulses are used to blow holes in cancer cells thereby causing them to die. The pulses are delivered via needles inserted into the prostate. It is available in Germany as here and was trialed at UCLH but ended there before July 2015 and I don't know anywhere else that uses it for PCa in the UK, although it is used for other cancers. http://prostata-center.de/index.php/en/treatment/nanoknife-ire
Barry |
User
Hi Barry great info.
Today I was at Kings College Hospital for Nanoknife consultation.
I have been given the option for Nanoknife and if that fails I can still have Prostate Removal at a later date. With the impact of having the Prostate removed I took the decision to go forward with Nanoknife. I have been so concerned with PR that once I met the team for Nanoknife today it felt just so right to try this first.
Could be as soon as May 2017.
Since I was diagnosed, today has been the first day I feel I know which direction I want to go with treatment and feel so relived and less confused, worried.
I'll post updates on how this all goes :)
Thanks for all the posts in this thread :)
User
Fantastic news about the trial, especially that you are happy with the treatment plan. I think it's great that less aggressive treatments are becoming available for the lower grade cancers. Will be good to hear updates on how it goes.
Julie
User
great news,,i would love to follow your journey with Nanoknife, maybe when it begins you could start a new thread in treatment options.
I really hope focal treatments start to be the norm for those foe whom they are appropriate but until then the individual won't necessarily know what is happening in places like KCH.
Things do seem to be moving in the right direction,,
Very pleased you have found your path.
Clare
User
Very interesting Dodgy,
Is this indeed being done as part of a study and if so what is the study called? It may also be of interest to members to know whether this treatment, within or outside a study (trial) is now available any where else within the UK at present so if you could ask your consultant at Kings about this and post it would be appreciated.
Also, hope to learn over time it has gone well for you.
I did email Kings College about the possibility of having Nanoknife myself back in 2015 but as you will see from the following, neither Guys nor Kings were using it at the time for PCa and they didn't know who in the UK were using it for this cancer. So your information serves as an interesting update. I have deleted my name/email address and names of the consultants from an email that was copied to me in answer to my enquiry :-
From: xxxxxxxxxxx(KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST)
Sent: 03 August 2015 10:03
To: YYYYYY(KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST)
Subject: RE: Patient enquiry: FW: Nanoknife for Prostate Cancer
We currently do not have a nano knife program at Kings/Guys, to be honest I do not know who does. ........................
Kind regards
ZZZZZZZZZZZZZZ
ZZZZZZZZZZZZZZ BSc MD FRCS (Urol)
Consultant Urologist and Robotic / Laparoscopic Surgeon King's College Hospital Denmark Hill London
SE5 9RS"
________________________________________
Barry |
User
Nanoknife is on the list of procedures available privately in the London centre that our consultant works out of but we were only offered HIFU as a primary treatment there. Nano knife did not seem to be a primary treatment option, maybe KCH are leading the way here
Interesting ...
User
Apart from Mark Emberton, who was funded by the company that makes the nanoknife machinery, I haven't seen reports of any other hospitals applying to clinical governance for permission to run trials. Kings are running TOOKAD; is it possible that the two have been muddled? Did you get a new PSA test?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Well it appears Nanoknife may be becoming available now in the UK, although it is regarded very much as experimental treatment. In 2015 I also called on the Princess Grace Hospital in London because their web site mentioned Nanoknife and Prostate Cancer. However, the receptionist said they did not do it for PCa and checked with the Professor expert then and there and that was indeed the case. Heidelberg centre would have done it but not outside the Prostate and as it was an iliac node I wanted treated, I did not pursue further.
I took the opportunity of recent appointment with Prof 'E' who seems to get to trial many of the new focal therapies what he thought about Nanoknife and the Lazar triggered treatment Clare's husband is having. He intimated it was much too early to give an objective opinion.
Edited by member 20 Apr 2017 at 01:02
| Reason: Not specified
Barry |
User
Hi Dodgy007,
I am now 3 weeks post RP after being told this was probably my best option - this as I have an agressive, high risk Gleason 9 strain.
I did research all the options, Hormone Therapy, Radio, Brachytherapy etc but again my Gleason 9 dictated the path I took.
Its early days and I have had some set backs with the catheter still in place after 3 weeks but I remain positive.
Cystogram booked in for tomorrow to see if I can wave goodbye to the catheter and then its just the waiting game again, until I get the pathologists results and subsequent PSA counts going forward.
Good luck on whatever path you take, but will be interesting to follow your progress through Nanoknife.
Tony.
User
Mark Emberton practices privately out of London Urology Associates and Nanoknife iis on the website. We had our final consult there in March 2017 but were not offered the Nanoknife option - HIFU yes which we decided against I was told tTOOKAD was not available in the UK ATM and when we consulted directly with the Israeli company they said we could travel to Israel or Mexico.
The TOOKAD prof said A was not optimal anyway as A's 3+3 diagnosis was bilateral
HIFU was an option we could have gone for at the end of March at Princess Grace in London
I had researched Nano knife but not offered during consult at London Urology Associates March 2017 ( tumour may have been too big) My impression was they had not used it as a primary treatment in the UK but really that is just an impression ..
We didn't consult with KCH but I was reading clinical trail info daily ( only new 'of interest' was the imperial trial with Exablate machine) .
Blooming hard to get a complete picture of this changing landscape!
User
Study: Irreversible Electroporation (Nanoknife) in Ablation of Prostate Cancer
Purpose of Study: This is a research study looking at a new minimally invasive treatment for Prostate Cancer.
Why have I been Chosen: You have been invited to take part since you have a low to intermediate risk locally confined Prostate Cancer
Nanoknife Procedure: Using the same technique as a Template Biopsy. The delivery pulses high voltage electricity across the Cancer.
Research Organized by: in the UK Mr Muir Consultant Urologist and sponsored by Clinical Research Office of the Endourological Society (CROES) The study is being monitored by CROES, Urology of Guy's, Kings and St. Thomas on behalf of NHS Research Authority.
Further Information: Kings Urology Clinical Research
Just posted some info from my Patient Info Sheet. Once I get a date of the Operation I will start a new thread. Hope this works and can help others :)
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Not had a PSA test since last August last year
User
Fantastic .. this is great news Dodgy
Good on KCH for pioneering this.
A minimally invasive solution for low to intermedia risk is so needed!
Very exciting
Thanks for the update
Regards
Clare
User
I find that mind-boggling and frightening in equal measure - you would think a) your urologist would be monitoring you and b) the trial team would want to check that your cancer hasn't progressed beyond their parameters.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Originally Posted by: Online Community MemberI find that mind-boggling and frightening in equal measure - you would think a) your urologist would be monitoring you and b) the trial team would want to check that your cancer hasn't progressed beyond their parameters.
Yes ! I'm having the Pre-Admission checks today for Wednesday's Nanoknife operation so I'm going to mention that I've had no PSA in 2017 so far.
Started a New Thread on my Nanoknife Treatment: HERE
Edited by member 08 May 2017 at 09:35
| Reason: Not specified
User
Just read thiis.
http://www.kingshealthpartners.org/latest/1174-clinical-trial-for-cancer-patients
I assume this is the trial Dodgy007 participated in back in May.