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Really Worried

User
Posted 28 May 2014 at 14:47
Hi, my husband Paul (62) has just been diagnosed with PC. His PSA was 5.7 and on his first biopsy of 10 they all came back negative, however his consultant was not happy when he examined him and requested he wanted to do another biopsy. This time he did 5 and he concentrated on a particular area, 1 was negative but 4 proved positive. As you can imagine it was an awful shock for us and the family.

Paul then had MRI which showed cancer contained and lymph glands not affected. He was given a Gleeson score of 7 (3+4)

Today we have had the results of his bone scan which thank goodness is clear. Now here we have a problem, Paul wants to have surgery done robotically as we have read that you have a far better chance of not having Incontinence problems and erectile problems. If anyone on this forum can give us any information on this I would be grateful. Our consultant has told us that as we live in Wales this type of surgery is not available and if we wanted to go ahead we would have to go to Bristol and pay the NHS £10.000 to say we were flabbergasted is an understatement! It seems Wales does have 3 robotic machines but haven't the specialists here that can use them so we have to go to England and pay, seems very unfair and what's very worrying is the fact that a lot of people do not have the means of getting their hands on 10k!

I would like to ask men who have had the surgery done by laparoscope how quickly did they recover etc also incontinence issues and were they able to have erections. I know both of these problems is worrying my husband very much. If anyone can help we would be very grateful.

Many thanks

Wendy

User
Posted 28 May 2014 at 15:24

Wendy('s man)

It is not true that robotics provides significant (or any) improvement in side effects. Open, or traditional surgery, can be as good or better than any other type. The key point here is that the experience and quality of the surgeon is uppermost in the outcomes. The method used less so. It is the archer and not the arrow.

Conventional laparoscopic surgery is a difficult method to master and the robot makes this technique easier, though with a learning curve of 200 or more surgeries to approach mastery. A surgeon who has years of experience, who removes prostates weekly (or more often) and who has done hundreds with the chosen technique is the starting point of consideration.

I agree with the poster above that there are other approaches such as radiation or even active surveillance available. I assume that his diagnosis was by psa and not DRE.

User
Posted 29 May 2014 at 12:08
Hi Wendy,

Although not having had a RP (RT many years ago) I do have incontinence problems so I can understand the concerns your husband has. I also can't empty my bladder and consequently am often caught short sometimes just by the act of standing up. HOWEVER all is not lost and I have learnt to live with it and moreover it has not restricted mine or my wife's life style one bit. If I am going out I wear a pair of "M savers normal incontinence pads" from Asda, these are a fully absorbent pair of pants that I wear under a normal pair of pants. Can I also point out that sometimes I have a bowel problem when again I can be caught short...believe me this is far worse. Only last week on a cruise (living life to the full) I was caught short and couldn't get to a toilet. Having got back to our cabin these pants had held everything with nothing even coming through to my normal underwear. Obviously not something that you want to happen on a regular basis but it does show you how good these things are.

Finally you can get a "Just can't wait" card that says "The holder of this card has a medical condition which requires the urgent use of a toilet".......PLEASE HELP

You can get this through www.incontact.org

So my message is, Yes it's not the best thing since sliced bread but it's not the end of the world.

Life is for living

Barry (alias Barrington )

Edited by member 29 May 2014 at 14:32  | Reason: Not specified

User
Posted 28 May 2014 at 15:10

Hi Wendy

it is outrageous that living in Wales reduces your options, just a thought but has anyone talked to you about the alternative to RP, Brachytherapy. If your Husband's cancer in contained and his PSA is at that relatively low level I would have thought it might be an option. My understanding is that there are far fewer side effects and it is much less invasive than an RP.

Basically Radioactive seeds are inserted in the prostate and they kill the cancer from within, they stay active for quite some time and have been very successfully used for quite some time now.

Surgery was never an option for my Husband so I know there are many more people on here that can tell you all about Robotic and Laproscopic  surgery.

I do hope that you can get some more positive answers and guidance

xx

Mo

User
Posted 28 May 2014 at 15:52

Hi Wendy,

 

It's not so much the difference in types of operation that one considers regarding incontinence & erections.

The two main points are;

1) Does the diagnosis prove accurate in that there is no spread found during surgery and therefore the erectile nerves can be spared from surgery. In other words, if the surgeon finds unexpected spread during either type of surgery, he may see fit to remove nerve bundles. This might be on one side only though. You should of course request nerve sparing surgery if possible.  It sounds as though it is likely nerve sparing  from what we know .

 

2) Incontinence usually boils down to surgeon skill and perhaps a bit of luck. Remember, under either method that regaining continence can take months in some cases. Either way, there is a risk albeit low.

 

Open surgery usually means a bit longer in hospital as the incision is larger. With the  robotic,  one is usually discharged the next day. But you still have the journey home which needs planning if a distance.

 

With four positive cores I'm more doubtful your consultant would be happy with Active Surveillance.

User
Posted 28 May 2014 at 16:07

Hi Wendy,just shows what a lottery the health service is,these Robotic machines don't come cheap and to have then stood idle beggars belief.

I am one who went down the robotic route so can't give any incite into open or laproscopic,but either way if its possible to have the nerve sparing then with a fair wind erections will come back either naturally like mine or with the aid of viagra/ cialis. Some men recover their continence quickly,some are not so lucky in that it is an ever present problem,as can be seen each of us is different,I was pad free at the 7 months mark.

With the results I'm sure they are not pushing for a decision right away,do research on the other treatments,its not easy but the best of luck to you both.keep us informed and keep asking what ever you'd like to know.

User
Posted 28 May 2014 at 16:25

Hi Wendy I had robotic surgery on 31/03/14, similar score to your husband I had PSA 5.8 gleason score 3+4 = 7 on day of OP surgeon advised if he could save nerves he would, but advised would take all nerves to get rid of cancer. After OP he said all went well was pleased with way OP went, he advised he had to take right side of nerves along with right lymph nodes as he thought 6% chance of cancer in nodes. I had catheter out 10 days after OP very concerned at time as incontinence was quite bad, I am now 8 weeks post OP incontinence has improved greatly only wear 1 pad a day now so have good control, also starting to get erections which is a relief. But as others have already advised the skill of the surgeon is paramount to success of OP.  I am going for follow up on OP next wednesday 4/06/14 to see how successful OP was, so will be worrying time will keep community informed, if I can help in any way just ask. Good luck in days to come know how stressful it is when first diagnosed.

All the best

Frank

User
Posted 28 May 2014 at 16:33
Wendy

I had robotic surgery 7 weeks ago with a G7 (4+3). The cancer was contained, my PSA (only just found out) after 5 weeks was <0.01, so I'm jumping for joy. The incontinence and ED for me are well worth putting up with than what could have happened if I wasn't diagnosed. However, that's personal to me. I hope you are able to make the right decision and get the treatment you want when you want it.

Paul

Stay Calm And Carry On.
User
Posted 28 May 2014 at 16:47
Hi Wendy,

as others have said, the data suggests that outcomes are the same for keyhole and open RP in terms of continence, impotence and recurrence. The big difference is in inpatient time and recovery time from the actual op. There are other things to consider as well as the expertise of the surgeon - even though robotic surgery was available to him my husband chose to have open RP for a number of reasons:

- at our hospital the lymph nodes are not removed in keyhole RP and he had a suspect node which we wanted on a petrie dish just in case

- he had scarring from previous surgery (had his appendix out a few years ago) which makes keyhole RP more difficult

- the data at our particular hospital indicated that more men were impotent for longer after robotic than after open

- the surgeon felt that in John's case, he had a better chance of avoiding nerve damage if he could get his hands in properly!

Four years on, John is continent and there is no physical impotence although there is still some emotional baggage which is helped by tablets.

In your situation (not ideal, I know) I would think very carefully about the implications of having to travel a long way for treatment - clarify who will pick up the aftercare, consider the fact that he will continue to need PSA tests for many many years and that keeping contact with the surgeon who did the op is invaluable reassurance, will you have access to ED treatment in Wales even though you have opted for surgery in England, and so on.

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

User
Posted 28 May 2014 at 16:49
My only concern was getting rid of the cancer asap. Don't worry about the side effects - get rid of the cancer in the way that's best for you. Deal with what you have to deal with later. As you read the experiences of others, you realize how much easier it is to deal with if the cancer hasn't spread.

paul

Stay Calm And Carry On.
User
Posted 28 May 2014 at 22:25
Hi Wendy,

I had my Open RP 8 years ago, in fact it's exactly 8 years this Saturday. Robotic surgery at the time wasn't an option, in fact I'd didn't even know that it existed, so having to make such a decision wasn't something that could play on my mind. But saying that I never suffered a single day of incontinence. The ED side in my case is another issue, but given that the Cancer was not contained I'm happy to live with that small price to pay and still be here today. The ED can be over come by a little help through various means, if your into that sort of thing.

I think the key, as others have said is the skill of the surgeon. I know I was very lucky in that respect.

Cheers,

Stu

User
Posted 29 May 2014 at 02:29
Hi Wendy,

As others have said, it is the experience and skill of the surgeon that is of paramount importance rather than the type of surgery. One advantage of surgery is that if it is found during the op or afterwards that all the cancer has not not been removed, it is usually the case that RT, often combined with HT, can be given to help attack the cancer that escaped the knife. If RT is chosen instead as the primary treatment, it is much more difficult to then remove the prostate due to the damage caused by the radiation and there are not many surgeons who will do it.

Barry
User
Posted 29 May 2014 at 09:55
Originally Posted by: Online Community Member
Thanks to everyone for their quick replies.

My husband is so worried about the incontenent issues, erectile dysfunction etc I am doing all I can to help him by saying we will go through this together and take one step at a time. It's far more important to me to have my husband then anything else!

When he was diagnosed he asked the consultant what he would do in the same situation and he replied almost immediately "I would have it removed robotically" him saying this I feel has blinkered Paul in a way as he really hasn't looked at any of the other treatments. I have just listened to the videos of men with PC on here and I have to say I found it very enlightening.

I think we have to look at all the options now and then hopefully Paul will decide if it's definitely surgery for him, and which type to have.

Wendy, if it helps your husband to clarify his thoughts tell him about my father in law. He was diagnosed with similar stats to your OH but decided to decline any of the radical treatments because he was not willing to risk ED and incontinence and he refused HT because he didn't like the idea of man boobs, loss of muscle and lack of libido. He lived for only 4 years.

Now, in his case it was the right decision (not for us who miss him terribly but right for him) and he crammed an awful lot of adventure & memories into that time - but for your OH? Would he be happy with only another 4 years if he could instead get rid of the cancer and live for another 20 years with a tiny bit of a dribble when he sneezes?

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

User
Posted 29 May 2014 at 12:41

Hi Wendy,

First of all I just wanted to say how gutting it must be to be told that you can't have this op in Wales without paying £10,000 !! Ludicrous !

Like all the other wives here I fully understand what you're going through.

My husband had RALP on 21st March of this year. He had only been diagnosed a few weeks earlier in January, so in his case things had moved along very quickly. Thankfully after MRI's, blood tests , biopsy's etc the results came back showing a very low PSA count of just 1:2.... of the 21 core samples taken only 4 showed signs of cancer and a Gleason score of 6.

His specialist nurse gave us various different options to consider, but he decided there and then he wanted it out !! quick sharp !!

Our local hospital didn't have the facilities for RALP so he was referred to UCH in London. From being diagnosed to having the op was just a matter of weeks, which in one way was good, less time to dwell on things, but in another way it meant he had little time to start PF exercises.

We didn't even stop to think of the after effects re. incontienece. etc.    Thankfully the operation was a complete success and he was home the very next day with catheter insitu. The catheter drove him nuts I have to say, not because it was painful , it was just uncomfortable for him and he said ( in his words ) it made him feel like an old man...I had to remind him he was an old man , being as he is 66 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif..anyways long story short.....the catheter was removed after 10 days at our local hospital and at first things were very good. After about a week or so he seemed to use a lot more pads although he'd been completely dry of a night and whilst sitting since having the TWOC.

I won't lie to you, it did get him down, but now, some 9 weeks on we are seeing light at the end of the tunnel. For the past week he's been more or less dry with just the occasional leak, but things look so much better than they did a few weeks ago.

On the erections issue ( I'm blushing here as I'm old school ) well I really don't know, as we haven't gone down that route yet ( as far as I know ).

If any of our experience can help, please just give us a shout.

Best Wishes

Jane

 

User
Posted 31 May 2014 at 15:40
We used to live in Wales, so we understand the problem all too well. I wanted to have my babies in Bristol and had to pay £4000 each for NHS services....but back on to the PCa. My OH had a failed RP at Cardiff because they found during the op that it had spread to the nodes. The care we received at that particular hospital was far from satisfactory.

However the RT that we had at Velindre was very different and a very caring supportive service. In hindsight we wished that we had gone to a London Private Clinic for the op, afterall if you are going to pay for it, might as well have the best. Of course it depends on your financial circumstances, but if you could co-ordinate you op in Bristol or London and your aftercare in Wales that would be best.

My understanding is that it is possible to do this if you speak to the Consultant (and co-ordinate things through his secretary and your GP). Good Luck.

User
Posted 09 Jun 2014 at 16:38

dont know if this will help my husband also paul was due to have his prostate removed by robot but they were unable to do it as his pelvic region was too small so he had a open surgery

this was done on the 9th may he had is catheter removed 28th may and is recovering well

stress incontinence during day dry at night

 

User
Posted 16 Oct 2014 at 22:10

Hi Paul,

The purpose of the trial is to consider whether there is benefit from from early follow up RT after RP. Until the trial is concluded it is not possible to make an assessment. If your husband is keen to have RT fairly soon, the only way he stands a chance of getting this from what your consultant has told you would be if he is draw into the RT arm of the trial or after his PSA begins to rise, should this be the case. RT following RP is thought to improve the outcome of RP in some cases but it has to be established whether it is better to have the RT soon after RP or wait until PSA rises (if that happens). RP does the job for some men who may not need RT so they might be having radiotherapy they don't need in a bid to improve their overall chances of ending their cancer. Rather depends on how a man sees it.

Barry
Show Most Thanked Posts
User
Posted 28 May 2014 at 15:10

Hi Wendy

it is outrageous that living in Wales reduces your options, just a thought but has anyone talked to you about the alternative to RP, Brachytherapy. If your Husband's cancer in contained and his PSA is at that relatively low level I would have thought it might be an option. My understanding is that there are far fewer side effects and it is much less invasive than an RP.

Basically Radioactive seeds are inserted in the prostate and they kill the cancer from within, they stay active for quite some time and have been very successfully used for quite some time now.

Surgery was never an option for my Husband so I know there are many more people on here that can tell you all about Robotic and Laproscopic  surgery.

I do hope that you can get some more positive answers and guidance

xx

Mo

User
Posted 28 May 2014 at 15:24

Wendy('s man)

It is not true that robotics provides significant (or any) improvement in side effects. Open, or traditional surgery, can be as good or better than any other type. The key point here is that the experience and quality of the surgeon is uppermost in the outcomes. The method used less so. It is the archer and not the arrow.

Conventional laparoscopic surgery is a difficult method to master and the robot makes this technique easier, though with a learning curve of 200 or more surgeries to approach mastery. A surgeon who has years of experience, who removes prostates weekly (or more often) and who has done hundreds with the chosen technique is the starting point of consideration.

I agree with the poster above that there are other approaches such as radiation or even active surveillance available. I assume that his diagnosis was by psa and not DRE.

User
Posted 28 May 2014 at 15:52

Hi Wendy,

 

It's not so much the difference in types of operation that one considers regarding incontinence & erections.

The two main points are;

1) Does the diagnosis prove accurate in that there is no spread found during surgery and therefore the erectile nerves can be spared from surgery. In other words, if the surgeon finds unexpected spread during either type of surgery, he may see fit to remove nerve bundles. This might be on one side only though. You should of course request nerve sparing surgery if possible.  It sounds as though it is likely nerve sparing  from what we know .

 

2) Incontinence usually boils down to surgeon skill and perhaps a bit of luck. Remember, under either method that regaining continence can take months in some cases. Either way, there is a risk albeit low.

 

Open surgery usually means a bit longer in hospital as the incision is larger. With the  robotic,  one is usually discharged the next day. But you still have the journey home which needs planning if a distance.

 

With four positive cores I'm more doubtful your consultant would be happy with Active Surveillance.

User
Posted 28 May 2014 at 16:07

Hi Wendy,just shows what a lottery the health service is,these Robotic machines don't come cheap and to have then stood idle beggars belief.

I am one who went down the robotic route so can't give any incite into open or laproscopic,but either way if its possible to have the nerve sparing then with a fair wind erections will come back either naturally like mine or with the aid of viagra/ cialis. Some men recover their continence quickly,some are not so lucky in that it is an ever present problem,as can be seen each of us is different,I was pad free at the 7 months mark.

With the results I'm sure they are not pushing for a decision right away,do research on the other treatments,its not easy but the best of luck to you both.keep us informed and keep asking what ever you'd like to know.

User
Posted 28 May 2014 at 16:25

Hi Wendy I had robotic surgery on 31/03/14, similar score to your husband I had PSA 5.8 gleason score 3+4 = 7 on day of OP surgeon advised if he could save nerves he would, but advised would take all nerves to get rid of cancer. After OP he said all went well was pleased with way OP went, he advised he had to take right side of nerves along with right lymph nodes as he thought 6% chance of cancer in nodes. I had catheter out 10 days after OP very concerned at time as incontinence was quite bad, I am now 8 weeks post OP incontinence has improved greatly only wear 1 pad a day now so have good control, also starting to get erections which is a relief. But as others have already advised the skill of the surgeon is paramount to success of OP.  I am going for follow up on OP next wednesday 4/06/14 to see how successful OP was, so will be worrying time will keep community informed, if I can help in any way just ask. Good luck in days to come know how stressful it is when first diagnosed.

All the best

Frank

User
Posted 28 May 2014 at 16:33
Wendy

I had robotic surgery 7 weeks ago with a G7 (4+3). The cancer was contained, my PSA (only just found out) after 5 weeks was <0.01, so I'm jumping for joy. The incontinence and ED for me are well worth putting up with than what could have happened if I wasn't diagnosed. However, that's personal to me. I hope you are able to make the right decision and get the treatment you want when you want it.

Paul

Stay Calm And Carry On.
User
Posted 28 May 2014 at 16:41
Thanks to everyone for their quick replies.

My husband is so worried about the incontenent issues, erectile dysfunction etc I am doing all I can to help him by saying we will go through this together and take one step at a time. It's far more important to me to have my husband then anything else!

When he was diagnosed he asked the consultant what he would do in the same situation and he replied almost immediately "I would have it removed robotically" him saying this I feel has blinkered Paul in a way as he really hasn't looked at any of the other treatments. I have just listened to the videos of men with PC on here and I have to say I found it very enlightening.

I think we have to look at all the options now and then hopefully Paul will decide if it's definitely surgery for him, and which type to have.

User
Posted 28 May 2014 at 16:47
Hi Wendy,

as others have said, the data suggests that outcomes are the same for keyhole and open RP in terms of continence, impotence and recurrence. The big difference is in inpatient time and recovery time from the actual op. There are other things to consider as well as the expertise of the surgeon - even though robotic surgery was available to him my husband chose to have open RP for a number of reasons:

- at our hospital the lymph nodes are not removed in keyhole RP and he had a suspect node which we wanted on a petrie dish just in case

- he had scarring from previous surgery (had his appendix out a few years ago) which makes keyhole RP more difficult

- the data at our particular hospital indicated that more men were impotent for longer after robotic than after open

- the surgeon felt that in John's case, he had a better chance of avoiding nerve damage if he could get his hands in properly!

Four years on, John is continent and there is no physical impotence although there is still some emotional baggage which is helped by tablets.

In your situation (not ideal, I know) I would think very carefully about the implications of having to travel a long way for treatment - clarify who will pick up the aftercare, consider the fact that he will continue to need PSA tests for many many years and that keeping contact with the surgeon who did the op is invaluable reassurance, will you have access to ED treatment in Wales even though you have opted for surgery in England, and so on.

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

User
Posted 28 May 2014 at 16:49
My only concern was getting rid of the cancer asap. Don't worry about the side effects - get rid of the cancer in the way that's best for you. Deal with what you have to deal with later. As you read the experiences of others, you realize how much easier it is to deal with if the cancer hasn't spread.

paul

Stay Calm And Carry On.
User
Posted 28 May 2014 at 16:55
Yes Paul my husband just wants the cancer out just like yourself.

Lyn, your quite right, we will have to discuss the distance and follow up care with Paul's consultant, a very important factor.

Thank you Frank, hope all goes well for you next week.

User
Posted 28 May 2014 at 22:25
Hi Wendy,

I had my Open RP 8 years ago, in fact it's exactly 8 years this Saturday. Robotic surgery at the time wasn't an option, in fact I'd didn't even know that it existed, so having to make such a decision wasn't something that could play on my mind. But saying that I never suffered a single day of incontinence. The ED side in my case is another issue, but given that the Cancer was not contained I'm happy to live with that small price to pay and still be here today. The ED can be over come by a little help through various means, if your into that sort of thing.

I think the key, as others have said is the skill of the surgeon. I know I was very lucky in that respect.

Cheers,

Stu

User
Posted 29 May 2014 at 02:29
Hi Wendy,

As others have said, it is the experience and skill of the surgeon that is of paramount importance rather than the type of surgery. One advantage of surgery is that if it is found during the op or afterwards that all the cancer has not not been removed, it is usually the case that RT, often combined with HT, can be given to help attack the cancer that escaped the knife. If RT is chosen instead as the primary treatment, it is much more difficult to then remove the prostate due to the damage caused by the radiation and there are not many surgeons who will do it.

Barry
User
Posted 29 May 2014 at 09:55
Originally Posted by: Online Community Member
Thanks to everyone for their quick replies.

My husband is so worried about the incontenent issues, erectile dysfunction etc I am doing all I can to help him by saying we will go through this together and take one step at a time. It's far more important to me to have my husband then anything else!

When he was diagnosed he asked the consultant what he would do in the same situation and he replied almost immediately "I would have it removed robotically" him saying this I feel has blinkered Paul in a way as he really hasn't looked at any of the other treatments. I have just listened to the videos of men with PC on here and I have to say I found it very enlightening.

I think we have to look at all the options now and then hopefully Paul will decide if it's definitely surgery for him, and which type to have.

Wendy, if it helps your husband to clarify his thoughts tell him about my father in law. He was diagnosed with similar stats to your OH but decided to decline any of the radical treatments because he was not willing to risk ED and incontinence and he refused HT because he didn't like the idea of man boobs, loss of muscle and lack of libido. He lived for only 4 years.

Now, in his case it was the right decision (not for us who miss him terribly but right for him) and he crammed an awful lot of adventure & memories into that time - but for your OH? Would he be happy with only another 4 years if he could instead get rid of the cancer and live for another 20 years with a tiny bit of a dribble when he sneezes?

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

User
Posted 29 May 2014 at 11:28
Hi Lyn,

Your post has really helped my husband this morning, thank you!

The reason he is so worried about the incontinence issue is going back to when he was in his thirties he use to always wee a lot. We saw a urologist then who did tests and said as a joke 'you have a bladder of a 70 yr old' but told him what was happening was that he didn't empty his bladder correctly so when he felt he had finished of course he hadn't. Now as he got older this condition has got worse so he feels with the op he has no chance of controlling it, that is why he is so worried about it.

Anyone else had this problem?

User
Posted 29 May 2014 at 12:08
Hi Wendy,

Although not having had a RP (RT many years ago) I do have incontinence problems so I can understand the concerns your husband has. I also can't empty my bladder and consequently am often caught short sometimes just by the act of standing up. HOWEVER all is not lost and I have learnt to live with it and moreover it has not restricted mine or my wife's life style one bit. If I am going out I wear a pair of "M savers normal incontinence pads" from Asda, these are a fully absorbent pair of pants that I wear under a normal pair of pants. Can I also point out that sometimes I have a bowel problem when again I can be caught short...believe me this is far worse. Only last week on a cruise (living life to the full) I was caught short and couldn't get to a toilet. Having got back to our cabin these pants had held everything with nothing even coming through to my normal underwear. Obviously not something that you want to happen on a regular basis but it does show you how good these things are.

Finally you can get a "Just can't wait" card that says "The holder of this card has a medical condition which requires the urgent use of a toilet".......PLEASE HELP

You can get this through www.incontact.org

So my message is, Yes it's not the best thing since sliced bread but it's not the end of the world.

Life is for living

Barry (alias Barrington )

Edited by member 29 May 2014 at 14:32  | Reason: Not specified

User
Posted 29 May 2014 at 12:41

Hi Wendy,

First of all I just wanted to say how gutting it must be to be told that you can't have this op in Wales without paying £10,000 !! Ludicrous !

Like all the other wives here I fully understand what you're going through.

My husband had RALP on 21st March of this year. He had only been diagnosed a few weeks earlier in January, so in his case things had moved along very quickly. Thankfully after MRI's, blood tests , biopsy's etc the results came back showing a very low PSA count of just 1:2.... of the 21 core samples taken only 4 showed signs of cancer and a Gleason score of 6.

His specialist nurse gave us various different options to consider, but he decided there and then he wanted it out !! quick sharp !!

Our local hospital didn't have the facilities for RALP so he was referred to UCH in London. From being diagnosed to having the op was just a matter of weeks, which in one way was good, less time to dwell on things, but in another way it meant he had little time to start PF exercises.

We didn't even stop to think of the after effects re. incontienece. etc.    Thankfully the operation was a complete success and he was home the very next day with catheter insitu. The catheter drove him nuts I have to say, not because it was painful , it was just uncomfortable for him and he said ( in his words ) it made him feel like an old man...I had to remind him he was an old man , being as he is 66 http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif..anyways long story short.....the catheter was removed after 10 days at our local hospital and at first things were very good. After about a week or so he seemed to use a lot more pads although he'd been completely dry of a night and whilst sitting since having the TWOC.

I won't lie to you, it did get him down, but now, some 9 weeks on we are seeing light at the end of the tunnel. For the past week he's been more or less dry with just the occasional leak, but things look so much better than they did a few weeks ago.

On the erections issue ( I'm blushing here as I'm old school ) well I really don't know, as we haven't gone down that route yet ( as far as I know ).

If any of our experience can help, please just give us a shout.

Best Wishes

Jane

 

User
Posted 29 May 2014 at 13:49
Originally Posted by: Online Community Member
Hi Lyn,

Your post has really helped my husband this morning, thank you!

The reason he is so worried about the incontinence issue is going back to when he was in his thirties he use to always wee a lot. We saw a urologist then who did tests and said as a joke 'you have a bladder of a 70 yr old' but told him what was happening was that he didn't empty his bladder correctly so when he felt he had finished of course he hadn't. Now as he got older this condition has got worse so he feels with the op he has no chance of controlling it, that is why he is so worried about it.

Anyone else had this problem?

Ah, I see your problem. John also had a bladder like old leather and problems with emptying and frequency - from the age of 35 he was on tablets for this. Did your husband not get any medication to help? In actual fact, having the RP has solved the problem, not made it worse as the not emptying syndrome is partly due to an overstrong sphincter and the surgery sorts this out. Tell him every cloud has a silver lining and he might be very pleased with the result - full sleep without multiple night loo trips and being able sit in the pub with a beer without his mates taking the p because he is always in the gents.

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

User
Posted 29 May 2014 at 17:06

I have just been diagnosed after a private  scan and my PSA is just over 13.I am 70 years old and am having my biopsy in 2 weeks.Up to now I have been treated privately but my doctor tells me that the national health treatment is just as good if not better.

Does the NH use up to date procedures like robotic?

Can anyone help me please.

I am so confused and worried and it seems that there are many decisions ahead for me with differing potential problems

 

User
Posted 29 May 2014 at 18:29

I went to the doctors last year because I wasn't emptying my bladder in the morning. That was when I was referred for a biopsy. My view is that if the robotic RP, which looks like it has been successful, gives me 20+ years rather than 4 as it did Lyn's Dad, then the short term incontinence and ED issues are a small price to pay. Prospective grandchildren, more holidays when my wife retires, and as much golf as I can play make it all worth while. I am not going to allow these issues to get me down. I know having PCa throughout my body would be a real downer.

Read Andy Ripley's thread, (Andy was an ex England RU International. It's a real eye opener and tear jerker. It might help focus your hubby's mind.

http://community.prostatecanceruk.org/posts/t2678-Just-another-story#post2678


Although I use 4/5 pads per day, I am dry at night, and am sleeping through more often. I now pee in the morning like a fireman's hose - far better than I have for a long time.

Edited by member 29 May 2014 at 18:31  | Reason: Not specified

Stay Calm And Carry On.
User
Posted 29 May 2014 at 18:31
Hi Raymond,

what is available on the NHS depends a bit on the area that you live. Robotic surgery is available in many areas although it will not necessarily be the best option for you. Much depends on your general health, where the tumour is thought to be, whether you have had previous abdominal surgery, whether you have any heart problems, etc, etc. In terms of side effects, the current data indicates that men who have robotic surgery do not have any more or less side effects than those who opt for open surgery, and the rates for recurrence are identical. Science suggests that the only benefit of key-hole is in recovery time - you are usually in hospital for a much shorter period and able to get back to normal life a little sooner.

In your circumstances, depending on your results and medical background, you may be advised to consider active surveillance, radiotherapy (including 2 newer types called brachytherapy) and/or hormones.

It isn't always straightforward sticking with private care. My dad and husband both had their op privately but as a result have never had access to really important support like that offered by the nurse specialist. For some treatments, private hospitals simply do not have the equipment. On the other hand, we think it is worth shelling out £250 every three months for the reassurance of being able to talk to the specialist rather than waiting for hours in an outpatient clinic for the pleasure of 5 minutes with a trainee that hasn't read the notes.

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

User
Posted 29 May 2014 at 20:30

 Hi Raymond,

With this particular problem I'd back the NHS being equal or above. Overall.

Your private care allowing for psa to get to 13 before action seems a bit slow ( if I am reading you correctly ). Or maybe you just chose to have a private scan rather than wait ?  No matter - action is underway.

 I'm also assuming the scan showed up a problem ?  I therefore read you as " suspected P.Ca ", at least until the biopsy confirms P.Ca.

Once you have biopsy results & know more where you are- potential treatments available will make more sense in what is best for you.

All this can be discussed here if you wish. There is a lot of experience here to draw upon.

 

 

Lyn wrote " On the other hand, we think it is worth shelling out £250 every three months for the reassurance of being able to talk to the specialist rather than waiting for hours in an outpatient clinic for the pleasure of 5 minutes with a trainee that hasn't read the notes. "

Must admit I've never found anything like this with my hospital. I rarely wait for long & accept that the person in front of me might need extra time & help. So any wait is justified with cancer clinics in my book.

All the specialists I have seen have been good & experienced. And able to draw on each others expertise easily.  Some have certainly gone an extra bit in my case, for which I'm very grateful. Different opinions can cast fresh light I've found which might be useful.

They have access to most types of treatment via interaction with other hospitals I ( if required ) quite often.

 

However, some folk do seem to respond better to private care with the privacy that can bring. If you have deep pockets & are happy to pay privately, then this may be your way forward. Just remember that after care will need sorting out with check-ups. I remember my mother did not respond well to being on a ward whereas my father accepted it better for instance. Usually, private ops do not include any aftercare package which is not true of the NHS where regular follow-ups are standard practice.

 

Best advice is to take one step at a time rather than trying to juggle many ( as yet ) unknown facts. 

 

 

 

 

.

User
Posted 29 May 2014 at 20:54
Hi Raymond,

I have to agree with Rob, I was diagnosed over 15 years ago so have had plenty of experience with PCa and the NHS.

In all that time I have had only 2 what could be termed indifferent consultations. Appointments have always been reasonably on time and apart from the 2 aforementioned occasions my NHS consultants (mainly oncologists) have been excellent.....remember the NHS oncologist or urologist is likely to be the same person you would see privately anyway.

This of course is just my opinion and perhaps being in Dorset I am very lucky with our NHS facilities.

Life is for living

Barry (alias Barrington )

User
Posted 29 May 2014 at 22:09

Fair points from both but since my experience is based on three different men and a seriously overstretched urology clinic (my dad has never seen an onco and I think Stan only saw one once) rather than a cancer unit, I will stick with paying the £250.

Before John went private we had two delightful 3 hour waits in general urology without being seen because they forgot about him. I have always made the point on here that private is no panacea and that in our case it resulted in refusal of specialist nurse support.

All those years ago, Dad sold shares etc to pay for nerve-sparing because it was only a trial at that time and not available on the NHS. John went private simply to get access to the surgeon that had done so well by my dad and also John's mum. Different kettle of fish once salvage treatment was needed and we have been thrilled by the NHS onco and his department. But although the treatment was NHS we still pay to see the onco for routine checks and get reassurance from the horse's mouth.

 

Edited to say - Rob, as far as I can see, your hospital functions quite differently to ours. Neither Dad, Stan or John were ever considered by an MDT, for example - or at least, not as far as we know. I have nothing but praise for the oncology unit at Jimmy's which is a specialist centre. But the run-of-the-mill urology service provides now for an ever-widening segment of West Yorks, and staff/resources are over-stretched. Money raised from private work at the hospital is ploughed back into the research centre which appeals to my 'private-health-hating-but-willing-to-drop-all-principles-where-necessary' social conscience! 

Edited by member 29 May 2014 at 22:18  | Reason: Not specified

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

User
Posted 30 May 2014 at 07:09
I have to agree with Rob and Barry. We've had experience with both Private and NHS consultants over many years and I have to say when it came to my husband being diagnosed earlier this year we could not fault the speed and efficiency shown with our local NHS hospital. I also thought it was an excellent idea how these consultants work as a team with online video conferences within a group of hospitals. (At least that's how it is in our region) So you are not getting the input of just one consultant , but a team of consultants. As for waiting for appointments...I can't imagine there are many hospitals busier than UCH in central London but we were always seen within 15 mins of our appointment time and had the opportunity to ask as many questions as we liked....never felt rushed. Just our experience of course.
User
Posted 30 May 2014 at 07:22
There is no real gold standard in care is there.

Our grandson was treated on the TCT ward at UCLH and the staff were wonderful. Couldn't fault any of it, especially the consultant who saved his life because his cancer was rare in youngsters (behind his nose and throat and inoperable)

My husband's care local hasn't been too bad.

We did have long waits and sometimes it felt as if we had been forgotten. They did bring forward a September appointment to May when they had already been informed we were away so we missed it.

Once I pointed that out they then redeemed themselves by everyone working together to get an appointment at the Royal London when John decided that he was interested in Brachytherapy. Although, having said that, it seemed as if it were the secretaries of the consultants that acted in our favour.

The Royal London, in our opinion, is exceptional. Others using the services there may well feel differently.

We can't control the winds - but we can adjust our sails
User
Posted 30 May 2014 at 10:33

I went private simply because we have medical insurance and had paid into it for some years. Like Wendy's husband, I was advised to have robotic surgery if I could as the recovery times is much shorter. I do agree with whoever said that aftercare following private treatment seems a little off though. I had all of the tests and procedures done and my RP operation was done four weeks ago now. I have a follow up consultation with the surgeon in two weeks time but other than that there has been no suggestion of Continence Nurses or ED advice etc. that others seem to get as a matter of course. In fact, when I came home from hospital I needed the help of the District Nurse for a couple of days and they didn't even have a record of me or know I had been in hospital.

I'm very happy with the surgeon who performed the DaVinci Robotic op at Addenbrookes Hospital. This is a hospital which is about 80 miles from home and I am lucky enough to have a very supportive wife who also does the driving. Distance wasn't a big problem in the end just a bit tedious. 

I thought I would just throw this in for what it's worth too; We receive a copy of the invoices that the hospital and consultants have been sending to our insurance company. The 'bill' for my Radical Prostatectomy was........£19,338.00. So, if you don't have a big bank account or insurance then the NHS is the only way forward for robotic procedures. Open surgery is just as good however, the only difference being the slightly longer recovery time after the op. 

User
Posted 30 May 2014 at 10:46

That's frightening! Anyone know the cost to the NHS for such an op?

Stay Calm And Carry On.
User
Posted 30 May 2014 at 13:25
Don't know how much it costs the NHS but there doesn't seem to have been much inflation in private healthcare - my dad paid £18000 thirteen years ago!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 May 2014 at 13:50

Putting this together then; it seems research on your particular hospital may be useful.

Questions such as - will a MDT ( Multi Disciplinary Team ) be available from the start for instance.

Will a nurse be assigned to your case ?  That happened later on for me and is very helpful .

Will an ED clinic be available or not ?

Will one be transferred from Urology to Oncology according to circumstances ?  

Are other treatments available at linked hospitals if your particular hospital doesn't have those facilities ? If follow up treatment is required for example.

 

Maybe others here can think of other questions http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

 

User
Posted 30 May 2014 at 14:53

Thanks so much for all your replies.it is a very worrying time for anyone in my position and it seems that there are a number of decisions to be made each with their own pros and cons.So as advised I will take one step at a time and come back to this forum when I have had my biopsy.Thanks for your help

User
Posted 31 May 2014 at 03:28
Hi Raymond,

One thing I don't think that has been mentioned so far is that you could if you so wish get a referral for a second opinion as all your histology with scans and diagnosis can be be put on a disc and considered by somebody else, although this can add to the delay to start treatment if early start is important to you. Naturally, it is likely that the hospital who have seen you so far will offer you the range of suitable treatments they provide. This may mean that they are not able to offer you all methods of surgery, all ways to administer radiation or provide HIFU if you are suitable and wanted to consider it. Hopefully, you are presently being cared for by a highly regarded Hospital but if not, in your situation I would want my treatment done at a leading hospital with highly experienced staff and advanced equipment. Some Commissioning Groups will allow funding for this as a NHS patient outside their area whilst some won't. If you are covered by insurance or prepared to pay the cost, this of course is not a potential obstacle. Although you often get the same surgeon or equipment when you are treated as a private patient as within the NHS, the former can help obtain earlier appointments/treatment and sometimes in a more congenial atmosphere.

Barry
User
Posted 31 May 2014 at 15:40
We used to live in Wales, so we understand the problem all too well. I wanted to have my babies in Bristol and had to pay £4000 each for NHS services....but back on to the PCa. My OH had a failed RP at Cardiff because they found during the op that it had spread to the nodes. The care we received at that particular hospital was far from satisfactory.

However the RT that we had at Velindre was very different and a very caring supportive service. In hindsight we wished that we had gone to a London Private Clinic for the op, afterall if you are going to pay for it, might as well have the best. Of course it depends on your financial circumstances, but if you could co-ordinate you op in Bristol or London and your aftercare in Wales that would be best.

My understanding is that it is possible to do this if you speak to the Consultant (and co-ordinate things through his secretary and your GP). Good Luck.

User
Posted 04 Jun 2014 at 15:17
Hi,

I just wanted to ask if any of you had tiredness before your treatment started. My husband has never been a good sleeper but in the last few months he has to have a nap in the afternoon and always looks tired. He gets up at least twice during the night for the toilet and I think he's getting around 6 hours sleep at night which obviously is not enough for him.

Anybody else had this problem?

Many thanks

User
Posted 04 Jun 2014 at 16:21
I slept well before the op - my problems came afterwards and that might have been because of the anesthetic. I often sleep in the daytime if I am at home, The getting up in the night may be a consequence of the PCa.

Do you have a date yet? I just wonder whether a short break before treatment starts would help.

Paul

Stay Calm And Carry On.
User
Posted 04 Jun 2014 at 16:39
We are waiting for an appointment to see the surgeon Paul, should be within the next 2 weeks. At the moment we are going down the line of having it done by laparoscope as it's more like 15k to have it done at Bristol than the 10k we first thought.

I have written to our MP explaining our plight as I felt I had to do something and wanted him to know that Welsh man have not got the option of having the surgery done robotically. Today I have had a reply and a form for Paul to sign so they can get a copy of his medical records. He did say he would look into this as a matter of urgency.......watch this space!

User
Posted 09 Jun 2014 at 16:38

dont know if this will help my husband also paul was due to have his prostate removed by robot but they were unable to do it as his pelvic region was too small so he had a open surgery

this was done on the 9th may he had is catheter removed 28th may and is recovering well

stress incontinence during day dry at night

 

User
Posted 14 Jun 2014 at 00:32
We have an appointment to see the consultant this coming Tuesday. To get this appointment we paid privately as were told the first available slot was at the end of July! We felt we couldn't wait that long as we really need to know now if it is possible for Paul to have the surgery.

I will update you all when we know.

User
Posted 14 Jun 2014 at 09:36

Regarding the tiredness point, my OH has been exhausted since diagnosis. The worry and stress plus nocturia and mix of drugs. He functions best if he does get a little nap in the day but not always possible to work this into day to day life, but really important because without rest everything seems so much more difficult.

Let us know how you get on. We had problems with the Wales/England thing all along - not fair.

Best Wishes

User
Posted 14 Jun 2014 at 11:45

its a shame you have had to pay to see consultant
as its worrying enough your husband has PC without having to worry about money to get op done/see consultant
we are just over the border in herefordshire and didnt have any problems seeing consultant before op
hubby saw him in march was given choice of radio or surgery
what you want to know from consultant is how experienced he is?
more experience the better.
how long hubby will be in hospital?
do they do nerve sparing?
only diff between open and keyhole is length of time in hospital.
my paul is 5 weeks post op and nearly fully continent just a small dribble later on in day when he is tired
get hubby to start doing pelvic floor exercises.
will be thinking of you on tuesday
we go to see my pauls consultant on tuesday for his 6 week post op
best wishes

Edited by member 14 Jun 2014 at 11:45  | Reason: Not specified

User
Posted 19 Jun 2014 at 00:49
Well we saw the Consultant yesterday and it was well worth the money as we were with him for nearly one hour as he explained everything and confirmed the best option for Paul is surgery so Paul's operation is set for the beginning of August, this is going to be done with a laparoscope.

We feel very happy with everything the Consultant said and he answered all our questions before we had time to ask them! This guy is a experienced surgeon who has done many of these procedures, he told us that he did part of his training in America and now teaches other up and coming surgeons so we do feel confident with him.

We asked about nerve sparing and he explained that the cancer is on the left side of Paul's prostrate so he will have to cut some nerves to make sure it's all out. We also spoke about incontence issues and erectile dysfunction problems which really has worried Paul. However, tonight Paul spoke to a member of this forum on the telephone who had his operation a few weeks ago and he really helped and reassured hubby. I was so grateful to him!

One thing I want to ask is: when the consultant said he could do the operation in August he saw the look on my face and our daughter's as we were hoping it could be done in July (mind you I am quite an impatient person) and he obviously read our minds because he said he would give Paul a hormone to take whilst he's waiting for his op. He said it wouldn't disturb his testosterone levels but it would slowly kill the cancer cells. He added that Paul would get slight breast pain and might have some hot flushes. Has anyone else had this before their operation? He then looked at me and said that should put your mind at ease!

Paul has said he is going to enjoy these next few weeks and I know he will remain positive and up beat. He has now started to read this forum so maybe he will start to post himself.

Many thanks to everyone who has posted on this thread.

Wendy

User
Posted 19 Jun 2014 at 07:58
Personally, I would avoid the hormones and be less impatient. From now to the beginning of August is no time at all if you use the 6 or so weeks in between to get him as fit as possible, to do all your post-op shopping and try to maybe get a holiday in or at least time to do lots of what couples do! If the sex side of things is so important to him, I am not sure why he would want to take hormones that could reduce his libido to zilch in the short time when he knows it all still works. The specialist mentioned breast pain, did he also mention that small breasts may begin to grow and this side effect is sometimes permanent? Other side effects can include muscle weakness, joint pain and breathlessness although being on them for only 6 weeks, the muscle wastage might not be such an issue.

He may not get any of these side effects but it is better to know what he might be letting himself in for and then it isn't a shock if it happens.

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

User
Posted 19 Jun 2014 at 09:49

Hi Wendy,

my Gleeson reading is 4 + 3 and I have chosen to have the operation.my specialist here in Manchester has years of experience in these types of operations and he has given me the choice of either robotic or laparoscope. I asked him his opinion and the prefers the latter for the following reasons.Firstly there is no reliable evidence yet that the robotic method is better in any way.The NHS has stopped buying them until research proves that it is better. What he tells me is that you chose the surgeon not the method. The robot enables less experienced guys to do the operation and even then he is dependant upon the assistants to follow his instructions. he prefers the laparoscope way and that's what I have chosen. he has told me that I should have it within 3 months so I have chosen to go on my holidays first and have the op in September.I hope this helps. Good Luck

Raymond

User
Posted 19 Jun 2014 at 15:31
Thank you Ray, keep in touch and have a wonderful holiday.

Wendy

User
Posted 20 Jun 2014 at 22:15
Hi Wendy

Very similar stats age 62, gleeson 7, PSA 7.7, diagnosed in dec 2013 op was 28th April 2014. My surgeon advised me to wait for the new Da Vinci robotic that was installed in Feb 2014 at Nottingham city Urology. You need to feel confident with your surgeon , I looked at several options but kept coming back to the same surgeon and the Da Vinci robot. Catheter removed after 10 days , 99 percent dry after 4 days. Leaked less than 5 mm a day . Now had totally dry pads for 3_4 weeks. The wife and I can not agree if it was the skill of the surgeon or 4 months of pelvic floor exercises. I did not have nerve sparring too much disease so ED likely to be permanent. Today we got the prescription for Viagra and a pump. We have already enjoyed some incredible experiences without full erections, I did at times consider doing nothing, what an idiot. Three weeks after op I was told the removed prostate had positive margins, on Tuesday this week I got the all clear so positive margins can be misleading.

Hope all goes well Chris

User
Posted 21 Jun 2014 at 01:18
Hi Chris,

Viagra doesn't usually work unless you have retained some nerves. Did the person that prescribed the Viagra know that you had non-nerve sparing? Some find that the pump is all they need to be fulfilled but if you can't get on with it, worth asking about Muse or Caverject both of which can work without nerves.

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

User
Posted 21 Jun 2014 at 14:58
Hi Lyn

The ED consultant who prescribed the Viagra was aware that there was no nerve sparring. They are actually Sildenafil which is still Viagra ? The ED guy was a lovely person to deal with and the three of us had quite a laugh. When I saw my surgeon \ consultant he did say he would be surprised if Viagra would be effective. Took the prescription for the pump in today. Our relationship has strengthened and become more loving and intense since the op without any aids. I hope your own situation continues to improve.

Thanks Chris

User
Posted 02 Sep 2014 at 14:46
Hi it's Paul's wife Wendy here .

I thought I would update you on Paul's progress. He had his prostrate removed by laparoscopy on the 28th August. We went into hospital at 7pm on the Wednesday evening and Paul was first on the list the following morning.

Our consultant said that the operation normally takes 3 hours but he did Paul's just under 2.5hrs. He told us he was absolutely delighted with how it went, the cancer had not gone out of the capsule and he was able to do nerve sparring.

Paul came home on the Friday with his catheter and has been doing really well. He does tire easily but I make sure he goes to bed every afternoon for a good sleep. He is coping well with his catheter and it is due out shortly. I am injecting Heprin nightly to prevent blood clots.

The District Nurse has called and she was really pleased with his wounds etc the staples are coming out on Friday and our son is going to do this.

Paul has found this whole experience much better than he thought it would be and I have to agree. It has helped enormously that through these forums we have met a couple who had the operation done in April and they have been in daily contact giving us help and advice.

We go back to see the consultant in 2 weeks for the Histology.

I will update again after this consultation.

Regards to everybody going through this experience and if we can help anyone please feel free to contact us

Wendy

User
Posted 02 Sep 2014 at 15:12
That's good news Wendy. So very pleased for you and your husband.

Jane

User
Posted 02 Sep 2014 at 17:06

So pleased for you both, great to hear some good news, long may it continue, Fiona.

 
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