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Choices for the newly diagnosed ?

User
Posted 14 Dec 2021 at 10:30

Hi there. I’m a newby in the club that no one wants to be in. Fit 66 year old, recently diagnosed with local advanced PCa. The pathway getting there has been a bit stuttering and uncommunicative at times, but things are now thankfully moving along.  PSA 37, Gleason score (4 + 3) = 7 [Right 9/11 and Left 1/7], Stage T3b. It has spread to the seminal vesicles but there is no evidence of it anywhere else. The urologist recommends radical prostatectomy, along with local lymph node removal but he is currently leaving the door open to HT & RT if I don’t want surgery. Since diagnosis I’ve been doing a crash course in prostrate cancer (and all its acronyms 😬) but I’m still just scratching the surface, which is my reason for post.

I have more or less decided on the recommended surgery option, although it looks like my sex life is probably going to be kicked into touch either way. My local NHS Trust, where I’m currently attending, will only do open surgery. I guess the best outcome is more about the skill of the surgeon than whether its open surgery, laparoscopic or robot assisted. However, from what I’m reading there is a much longer recovery with open surgery. Two local private clinics in the West Midlands offer laparoscopic or robot assisted but I don’t want to jump down the private route unless I have to. In view of the advanced state of my cancer I do feel time to surgery is going to be an important factor. Currently I have no date or even a timescale but that might become clearer at my next urology appointment 5 Jan). Any thoughts/experiences would be greatly appreciated. Thanks, Chris.

By the way, I think the forum is brilliant. I’ve learnt a heck of a lot in just 24 hours (my wife is complaining she can't get on the computer).

User
Posted 14 Dec 2021 at 12:04
My husband chose open RP for a number of reasons. Yes the recovery is longer and you have to stay in hospital for an extra couple of nights but open RP still has slightly better results in terms of positive margins and biochemical recurrence.

BUT I am wondering why you would have RP with your stats? Will the op be non nerve sparing? Have you seen an oncologist to discuss external beam RT, possibly with brachytherapy boost?

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

User
Posted 14 Dec 2021 at 13:56

Totally agree. I would be looking down the RT route as you may very well need salvage RT after a RP whether it be Robot Assisted or Open

User
Posted 14 Dec 2021 at 19:09

Why don’t you ring prostate ca uk and speak to people via the specialist nurses on the one to one support  link that have been through similar treatments,it’s much better to have a personal chat rather than text conversations imo

User
Posted 15 Dec 2021 at 04:43

I think your intention to consider your treatment decision following discussions with an Oncologist rather than just a Urologist is a good one. These will have access to your scans and histology and which type of PCa you have, all information that the specialist nurses will not have. Even so, consultants of both disciplines may feel they can offer you comperable results in terms of eradicating your cancer. However, potential side effects can be different between surgery and a form of RT, the latter mostly compounded by the those of HT. which usually recommended as an adjunt to RT.

As regards the types of surgery, a case my be made for each but one type may be a better option for a particular individual. Clearly, your trust cannot offer methods that they don't have the equipment or expertise to administer. Also, they may contend that they would not pay for Robotic surgery available at another trust. However, several years ago we did have a member whose trust said the same thing when he wanted Robotic surgery but he contacted NHS England and got what he wanted. Whether this would be wise to contest with some cancer ops being cancelled due to Covid prioity at the present time is questionable

If you have not yet done so, I recommend you obtain the 'Tool Kit' from this charity. This provides information about PCa and treatments complied from very reliable sources https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

 

Edited by member 15 Dec 2021 at 04:48  | Reason: to highlight link

Barry
User
Posted 15 Dec 2021 at 05:19

Hello Chris,

With a slightly less serious diagnosis than yours, I decided that the chances of a RP curing were too low and the chances of ED too high to go with surgery. Even the surgeons thought I'd probably need RT afterwards, and both treatments gets you both sets of side effects. I went with RT + HT, and I'm just coming out of the other end now with everything still working, but too soon to say how curative it's likely to be. (Much more detail in my profile.)

Wishing you he best of luck.

User
Posted 15 Dec 2021 at 22:44

Hi Chris,   I was keen on RP because I was told it was near the edge, the Gleason was 4+3, and I didn't like the thought of the big growth in me.  Surgery seemed the best chance to get it done quickly.

After reading on here for some 5 years I'm not that sure I'd now be so single minded.  Although at the time I really didn't want to waste a second talking to other consultants which might have taken several weeks as it was over Christmas.    I was also thinking robotic would be better but was told it would be at a hospital over 30 miles away in the Pennines in deepest winter which seemed to add more potential complications.

I now think that if it had been outside the prostate I might have chosen RT.   Easy to say in retrospect as at the time the thought of it possibly being out was driving my wish for speed.

After the op I found it was 4+4 with clear margins which made me think it was a good choice.   I wasn't over concerned about side effects and there is quite a bit of ED.  Last week my psa became just detectable which isn't good but I need to wait another few months to know if it's a one off or what.  RT is still a possibility.

As you say Covid is another factor and any potential delays, that makes it easy to want to grab the first one.

I hope that works out for you.

All the best, Peter

Edited by member 15 Dec 2021 at 22:49  | Reason: Not specified

User
Posted 16 Dec 2021 at 08:02

Hi Chris, You have a right under the NHS Patient Choice Charter to choose whichever NHS Trust or consultant you want to be treated by...
https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

So you are well within your rights to request treatment (open or RARP) anywhere, for example The Royal Marsden (which has an excellent reputation). There will also be excellent surgeons in the Midlands. Start with this which gives a list of some of the most high volume surgeons through the UK ...

https://prostatematters.co.uk/prostate-cancer/where-to-access-robotic-prostatectomy/

We did exactly this. Our local Trust is in "special measures". There's been a damning report published on our local Trust's Urology Dept. We weren't happy with the quality of care there so we asked to be referred to Christies (a centre of excellence) and they did that no questions asked. Husband had RARP at Christies a week ago.

Good luck!

User
Posted 17 Dec 2021 at 11:13

I’ve had the QE in Birmingham recommended to me. It’s only 15 miles away. They have three surgeons listed and a choice of procedures, although I see from your link that the main one, Alan Doherty has now retired from NHS work. However, I can see I have a lot more options within reasonable striking distance which I need to look into. Thank you for this.

I hope your husband makes a good recovery. Please let me know how he progresses.

Chris

User
Posted 17 Dec 2021 at 14:11

Hi Chris,

my vital statistics are very similar to yours, PSA 47 T3a.N0m0, (4+5) aged 64. I wasn't given a choice, it's HT?RT which I am glad about, 3 month into HT which I find OK, yes I get the hot flushes and lack of interest in other departments.  I have just returned from a TURP operation in preparation for starting RT in Spring. I think you must need to be comfortable with your decision and go with it, we don't know what after effects of any of the treatments might be, I am not worrying about the 'might be' and wait and see how I get on.

 

User
Posted 17 Dec 2021 at 16:38
Chris

I think you need to get the Jan 5 appointment out of the way. I'd hope that after that you would be referred to the MDT so that a more collegiate view might be taken. Only then should you start considering which route you may want to go down.

I had RARP in Aug 2020. I live in Brum and had surgery @ Royal Marsden so I can give you a perspective on that experience if you want ( by PM of course). My brother had open surgery in Brum as well so I have an insight into that also.

Chris

User
Posted 17 Dec 2021 at 17:06
Regardless of whether you go for surgery or RT/HT you should be fine hiking next July!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Dec 2021 at 21:17

Originally Posted by: Online Community Member

Thanks Chris. The MDT discussed my results just before my diagnosis appointment (where surgery was recommended). I was assuming that was the recommendation of the MDT. Would it be referred back to the MDT? 

I would welcome hearing about particular experiences and that of your brother's. I also have a younger brother who, as a result of my diagnosis, is having a PSA test.

Chris

it seems from what you have already posted that the MDT decided you were suitable for surgery or radiotherapy. As you said above, it is the surgeon’s recommendation that you have surgery. The onco will either say ‘if I was you, I would have surgery’ or will talk you through whichever treatments s/he thinks you would be suitable for. Then you choose. It is unlikely to go back to MDT. 

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

User
Posted 06 Jan 2022 at 01:14

Some might throw their hands up in horror but I am with you in spirit. J also chose to have open RP on the advice of his very laparascopic-experienced surgeon for more or less the same reason (he could get his hands in and feel to maximise the nerve sparing) but also because J had previously had abdominal surgery and there was a concern that the old scarring would be in the way. 

If there is going to be a significant delay before the op, you could ask about hormone therapy to keep it under control in the meantime?

By the way, there is a typo in your post ... you want negative margins, not positive ones!

Edited by member 06 Jan 2022 at 01:16  | Reason: Not specified

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

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User
Posted 14 Dec 2021 at 12:04
My husband chose open RP for a number of reasons. Yes the recovery is longer and you have to stay in hospital for an extra couple of nights but open RP still has slightly better results in terms of positive margins and biochemical recurrence.

BUT I am wondering why you would have RP with your stats? Will the op be non nerve sparing? Have you seen an oncologist to discuss external beam RT, possibly with brachytherapy boost?

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

User
Posted 14 Dec 2021 at 13:56

Totally agree. I would be looking down the RT route as you may very well need salvage RT after a RP whether it be Robot Assisted or Open

User
Posted 14 Dec 2021 at 16:47

Thanks for for response Lyn. I understand the cancer is fairly extensive on the RHS, although I haven't seen the full lab report yet. I am seeing the Oncologist next Wednesday, so it will be interesting to see what he says. I'm told it will be nerve sparing procedure but there seems to be some doubt how successful it will be.

User
Posted 14 Dec 2021 at 16:54

I've been told salvage RT after the RP is a possibility. Hopefully I will have a more balanced view after seeing the oncologist. To be honest I don't fancy the 3 months of HT before the RT. My dad got PCa late in life and he was on it for about three years.

User
Posted 14 Dec 2021 at 19:09

Why don’t you ring prostate ca uk and speak to people via the specialist nurses on the one to one support  link that have been through similar treatments,it’s much better to have a personal chat rather than text conversations imo

User
Posted 15 Dec 2021 at 04:43

I think your intention to consider your treatment decision following discussions with an Oncologist rather than just a Urologist is a good one. These will have access to your scans and histology and which type of PCa you have, all information that the specialist nurses will not have. Even so, consultants of both disciplines may feel they can offer you comperable results in terms of eradicating your cancer. However, potential side effects can be different between surgery and a form of RT, the latter mostly compounded by the those of HT. which usually recommended as an adjunt to RT.

As regards the types of surgery, a case my be made for each but one type may be a better option for a particular individual. Clearly, your trust cannot offer methods that they don't have the equipment or expertise to administer. Also, they may contend that they would not pay for Robotic surgery available at another trust. However, several years ago we did have a member whose trust said the same thing when he wanted Robotic surgery but he contacted NHS England and got what he wanted. Whether this would be wise to contest with some cancer ops being cancelled due to Covid prioity at the present time is questionable

If you have not yet done so, I recommend you obtain the 'Tool Kit' from this charity. This provides information about PCa and treatments complied from very reliable sources https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

 

 

Edited by member 15 Dec 2021 at 04:48  | Reason: to highlight link

Barry
User
Posted 15 Dec 2021 at 05:19

Hello Chris,

With a slightly less serious diagnosis than yours, I decided that the chances of a RP curing were too low and the chances of ED too high to go with surgery. Even the surgeons thought I'd probably need RT afterwards, and both treatments gets you both sets of side effects. I went with RT + HT, and I'm just coming out of the other end now with everything still working, but too soon to say how curative it's likely to be. (Much more detail in my profile.)

Wishing you he best of luck.

User
Posted 15 Dec 2021 at 07:35

Thanks Barry, that's very helpful.

The Covid factor is certainly another consideration, particularly how it is going to affect NHS resources in the coming months.

I've had a quick look at the Tool Kit publications. I was handed a copy of the prostate cancer guide at my diagnosis appointment. That has been very very useful. I'll have a look at the guides.

Chris

User
Posted 15 Dec 2021 at 22:44

Hi Chris,   I was keen on RP because I was told it was near the edge, the Gleason was 4+3, and I didn't like the thought of the big growth in me.  Surgery seemed the best chance to get it done quickly.

After reading on here for some 5 years I'm not that sure I'd now be so single minded.  Although at the time I really didn't want to waste a second talking to other consultants which might have taken several weeks as it was over Christmas.    I was also thinking robotic would be better but was told it would be at a hospital over 30 miles away in the Pennines in deepest winter which seemed to add more potential complications.

I now think that if it had been outside the prostate I might have chosen RT.   Easy to say in retrospect as at the time the thought of it possibly being out was driving my wish for speed.

After the op I found it was 4+4 with clear margins which made me think it was a good choice.   I wasn't over concerned about side effects and there is quite a bit of ED.  Last week my psa became just detectable which isn't good but I need to wait another few months to know if it's a one off or what.  RT is still a possibility.

As you say Covid is another factor and any potential delays, that makes it easy to want to grab the first one.

I hope that works out for you.

All the best, Peter

Edited by member 15 Dec 2021 at 22:49  | Reason: Not specified

User
Posted 16 Dec 2021 at 08:02

Hi Chris, You have a right under the NHS Patient Choice Charter to choose whichever NHS Trust or consultant you want to be treated by...
https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

So you are well within your rights to request treatment (open or RARP) anywhere, for example The Royal Marsden (which has an excellent reputation). There will also be excellent surgeons in the Midlands. Start with this which gives a list of some of the most high volume surgeons through the UK ...

https://prostatematters.co.uk/prostate-cancer/where-to-access-robotic-prostatectomy/

We did exactly this. Our local Trust is in "special measures". There's been a damning report published on our local Trust's Urology Dept. We weren't happy with the quality of care there so we asked to be referred to Christies (a centre of excellence) and they did that no questions asked. Husband had RARP at Christies a week ago.

Good luck!

User
Posted 17 Dec 2021 at 10:53

Hi Peter,

Your situation was so very similar to my own, including the time of year. I feel very much the way you have described.

The way the tests were going I was preparing myself for a cancer diagnosis but hearing that it was in an advanced state flawed me a bit. During the diagnosis appointment it was more a case of processing what I was being told than formulating any pertinent questions. My instinctive reaction was just to get this cancer out of me as quickly as possible. Now, following the diagnosis I’ve done a lot of reading and also received some very helpful advice from members of this forum. The treatment decision is not a straightforward one but hopefully things will become clearer when I’ve had my oncologist appointment and second appointment with the urologist.

My initial aspiration was to get the treatment over with and recover my health and fitness in time for an Austrian hiking holiday I have booked in July next year. I know now that I need to be more realistic.

I hope your detectable PSA reading turns out to be nothing of concern. Thanks for sharing your experience with me.

Chris

User
Posted 17 Dec 2021 at 11:13

I’ve had the QE in Birmingham recommended to me. It’s only 15 miles away. They have three surgeons listed and a choice of procedures, although I see from your link that the main one, Alan Doherty has now retired from NHS work. However, I can see I have a lot more options within reasonable striking distance which I need to look into. Thank you for this.

I hope your husband makes a good recovery. Please let me know how he progresses.

Chris

User
Posted 17 Dec 2021 at 14:11

Hi Chris,

my vital statistics are very similar to yours, PSA 47 T3a.N0m0, (4+5) aged 64. I wasn't given a choice, it's HT?RT which I am glad about, 3 month into HT which I find OK, yes I get the hot flushes and lack of interest in other departments.  I have just returned from a TURP operation in preparation for starting RT in Spring. I think you must need to be comfortable with your decision and go with it, we don't know what after effects of any of the treatments might be, I am not worrying about the 'might be' and wait and see how I get on.

 

User
Posted 17 Dec 2021 at 16:38
Chris

I think you need to get the Jan 5 appointment out of the way. I'd hope that after that you would be referred to the MDT so that a more collegiate view might be taken. Only then should you start considering which route you may want to go down.

I had RARP in Aug 2020. I live in Brum and had surgery @ Royal Marsden so I can give you a perspective on that experience if you want ( by PM of course). My brother had open surgery in Brum as well so I have an insight into that also.

Chris

User
Posted 17 Dec 2021 at 17:06
Regardless of whether you go for surgery or RT/HT you should be fine hiking next July!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Dec 2021 at 19:45

Thanks Chris. The MDT discussed my results just before my diagnosis appointment (where surgery was recommended). I was assuming that was the recommendation of the MDT. Would it be referred back to the MDT? 

I would welcome hearing about particular experiences and that of your brother's. I also have a younger brother who, as a result of my diagnosis, is having a PSA test.

Chris

User
Posted 17 Dec 2021 at 19:49
Chris

PM sent.

User
Posted 17 Dec 2021 at 20:03

Got the message but as I'm a new member I'm still on probation and barred from a PM reply at the moment🤐

User
Posted 17 Dec 2021 at 21:17

Originally Posted by: Online Community Member

Thanks Chris. The MDT discussed my results just before my diagnosis appointment (where surgery was recommended). I was assuming that was the recommendation of the MDT. Would it be referred back to the MDT? 

I would welcome hearing about particular experiences and that of your brother's. I also have a younger brother who, as a result of my diagnosis, is having a PSA test.

Chris

it seems from what you have already posted that the MDT decided you were suitable for surgery or radiotherapy. As you said above, it is the surgeon’s recommendation that you have surgery. The onco will either say ‘if I was you, I would have surgery’ or will talk you through whichever treatments s/he thinks you would be suitable for. Then you choose. It is unlikely to go back to MDT. 

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

User
Posted 05 Jan 2022 at 19:34

I had my telephone consultation with the urologist today. This was the follow up from my appointment with the oncologist just before Christmas. It is decision time for me and I have opted to go for radical prostatectomy (open surgery). It will include local lymph node removal and salvage RT further down the line. I must admit the one night in hospital with a laparoscopic procedure is more appealing than the five nights with open surgery. The surgeon is in his mid-fifties with a long experience of prostatectomies. He says with advanced local PCa he can get improved (reduced) positive margins (apparently by feeling the prostate) compared to laparoscopy. I’m going to need mop up RT whatever, but I guess the less dodgy cells left in there the better. I forgot to ask what the time period is between surgery and salvage RT but I’m sure many of you will be able to enlighten me. The only bad news coming from the appointment is when I asked what the timescale to surgery would be, he said with the NHS on its knees at the moment (his words) he had no idea.

Edited by member 06 Jan 2022 at 08:00  | Reason: Not specified

User
Posted 06 Jan 2022 at 01:14

Some might throw their hands up in horror but I am with you in spirit. J also chose to have open RP on the advice of his very laparascopic-experienced surgeon for more or less the same reason (he could get his hands in and feel to maximise the nerve sparing) but also because J had previously had abdominal surgery and there was a concern that the old scarring would be in the way. 

If there is going to be a significant delay before the op, you could ask about hormone therapy to keep it under control in the meantime?

By the way, there is a typo in your post ... you want negative margins, not positive ones!

Edited by member 06 Jan 2022 at 01:16  | Reason: Not specified

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

User
Posted 06 Jan 2022 at 12:10

Thanks Lyn. I know what I meant to say about positive margins but didn't make it particularly clear, did I. I'm hoping I made the right decision. The oncologist said my PCa was quite treatable with the HT/RT route but wouldn't be drawn on what was the better option for me. He did indicate the extent of the cancer growth would entail a fair old dose of radiation. It also seems from what he said that targeting the lymph nodes is a bit hit and miss and they are quite close to vital organs. I am not yet on any HT but I will certainly need to be if I'm waiting for surgery on NHS. A friend of mine has a similar diagnosis to me and is being treated by the same consultant. He had his prostatectomy earlier this week with the same surgeon but privately. He emailed yesterday me to say everything went well. This is not an option that is available to everyone but I am giving it some serious thought. It's not like you can spend your money on exotic holidays at the moment. Chris

 
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