Hello all,
I am a 45 year old father and husband who has just been diagnosed with prostate cancer. 😢
A 3T mpMRI showed a 9mm lesion in the left Apex, within the prostate.
I had a target template precision biopsy with 12 samples taken, 6 on the target area (on the left) and 6 on the right side. 8 came back positive. 6 on the left were positive with up to 60% cancer. 2 on the right were positive with less than 5%.
My Gleason score is 3+4=7.
My T stage is T2c.
As far as the urologist consultant can tell (from biopsy), the cancer is contained within the gland and the capsule is ok so he is confident it has not spread.
A multi-disciplinary panel reviewed my case and active surveillance was not recommended because of the high % on the samples on the left side (I believe).
I am being offered a choice between radical prostatectomy and radio therapy. From my discussion with the St George's hospital urologist, I understand they are not that different in terms of side effect. You get (hopefully temporary) incontinence and erectile disfunction. With RP, the ED happens straight away and, if you're lucky and nerves can be spared, there is 50% chance it comes back within 1 or 2 years. With RT, there may not be any ED initially, but it will happen within a couple of years for sure (is that true?).
Also, I was told that it's a lot easier/safer (less complication) to apply RT as salvage treatment after RP than using RP after RT (the RT tends to stiffen prostate tissues). The risk of RT-induced cancer was discussed but the urologist said it was a low and that is why both RT and RP are put on the same pedestal in his view...
I briefly discussed HIFU but my urologist was quite dismissive. He said the NHS have tried it and there are too many complications (fistula) but he also said that should not deter me from speaking with HIFU providers if I want to explore.
He offered to put me in touch with a surgeon specialising with laparoscopy. I have not taken on the offer yet. I have the name of the surgeon and would like to know if he is reputable, experienced and safe. Given that I cannot mention his name here, how can I check?
So here I am... I understand, in most part, the information I have been given but I am a bit at a loss. I'm tempted to go for RP but when I asked if my nerves could be both spared, the urologist said this is something the RP surgeon would expand on. Apparently, on the right side, it should be ok but on the left side, no so sure. Can you recover from ED with one set of nerves only?
So my questions are:
Q1. After RP, can recover from ED with one set of nerves only?
Q2. How can I check if my RP surgeon is the right guy for the job?
Q3. What are the % risk of ED after RT?
Sorry for the many questions... it's just that it's all a bit of a blow if I'm honest...
Bob76
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User
The RP vs RT debate is very difficult to resolve. Some people are not given the choice because of the nature of their particular disease. But if you are given the choice it is because the medics thinks each one has an equal chance of success.
If you went down the pub on a karaoke night, grabbed the microphone in the middle of "sweet Caroline" and said, "I've got cancer, should I cut it out or blast it with x rays? show of hands please". The replies would be "get off", "come on England", but if you did get the show of hands 80% would be "cut it out". In fact after a few jars some of the patrons may offer to do it there and then using nothing more than a knife, fork and dessert spoon.
What I'm trying to say is there is a very strong irrational bias towards the more aggressive treatment, try and ignore that and decide what is best for you.
After the procedure regret nothing. If it fails, then the other one probably would have as well, if you have dreadful side effects then you may have got dreadful side effects from the other one as well.
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Just bumping you up Bob.
Added
I have had supposedly non nerve RARP and salvage RT, I did get some promising signs after surgery but but never fully recovered. I then had Salvage RT which probably did me no favours.
My flaccid penis is very healthy and after seven years I do get the odd surprise. Never give up and have lots of fun, you don't need an erection for intercourse.
Make your first priority getting rid of the cancer or at least get it under control.
Thanks Chris
Edited by member 09 Jul 2021 at 22:40
| Reason: Added comments
User
Yes. It is possible. My diagnosis was VERY similar to yours (check my profile if you like). I had partial nerve-sparing on one side and pretty much full on the other. I found out this was successful while the catheter was still in (nocturnal stirrings - bit painful)
You can search on the BAUS website for each surgeon's outcomes
https://www.baus.org.uk/patients/surgical_outcomes/radical_prostatectomy/default.aspx
I can't help you with that one, but someone else surely will.
I additionally, I would say that it's a good idea to go and talk to both surgeon and oncologist to get their take on it. Very often they will advise younger people (I was 50) to have surgery - particularly if you're fit and healthy and not overweight. But it's good to hear from both sides.
Edited by member 09 Jul 2021 at 22:11
| Reason: Not specified
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
User
1. Yes - erectile recovery isn't determined only by how many nerves were saved. A man can have full nerve sparing but never have an erection again, and very rarely a man who had non-nerve sparing surgery can recover. Nerve sparing is part of it but also how much bruising or burn damage is done, and then self-care and rehab afterwards. My husband was diagnosed at age 50 and had RP with the nerves on one side saved. He recovered natural erections - the most significant progress was between years 2-3. Nerve sparing on one side only isn't dramatically worse for ED than full nerve sparing - about 90% of men who have had nerve sparing RP can get an erection 12 months post-op although around 50% of those can only do so with tablets, erections or a vacuum pump.
2. Talk to him - see if you like him and feel confident about what he is saying & that he doesn't have an ego the size of the moon. Then check his stats on the BAUS website - urologists are supposed to publish their data and most (but not all) do. Be aware though that a brilliant surgeon may have what looks like not so great results because s/he is willing to operate on men who are borderline T3a/b while someone with amazing stats might be cherry-picking only the nice easy T1/T2s. There is a list of questions on here somewhere to ask the surgeon but from memory, you want to know things like a)how many of these ops do you do a year? b) what % of your cases have had a % margin c) what % of your cases have had biochemical recurrence within 5 years? d) what % of your patients are still using continence pads at 12 months post-op e) what % of your patients can have penetrative sex at 12 months?
There are some subtleties to be aware of - in the NHS data, 'dry' means using one pad per day or less and regaining EF means getting an erection with or without chemical or mechanical aids and doesn't take into account whether that erection is sufficient to actually engage in penetrative sex
3. No clear data - while on HT, the man might have erections but no libido. Once HT finishes, the libido may return just as ED starts to develop but it isn't guaranteed that you will get ED. Generally, erections start to get a bit more difficult to achieve from about year 2 and ED kicks in around year 5. If the man has not maintained good penile rehab while on HT, the ED might not be so much of a problem as atrophy (which is permanent).
But as above, my husband did recover natural erections post-op and the RT doesn't seem to have caused any problems. However, he does have ED which is psychological rather than physical - the mental impact of treatment for prostate cancer should not be underestimated.
It is also worth noting that there are at least 5 types of RP - open surgery, keyhole/ laparascopic, robotic keyhole, perineal and retzius sparing. My OH chose open for a number of reasons, not least because in his case, the surgeon felt that would give the best chance of nerve sparing. Perineal is rarely done now in the UK. Retzius sparing is designed to minimise the risk of incontinence. So it isn't just that you are asking to see a urologist with experience of keyhole RP - does he do that the old way or with a robot?
I notice that you haven't asked any questions about continence which is often a newly diagnosed man's biggest concern. Non-nerve sparing increases the risk of permanent incontinence.
Edited by member 09 Jul 2021 at 22:24
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I had similar numbers to you at the same stage. I was told that they would do what they could to spare nerves but there is no guarantee.
After the op my PSA was 0.2 and slowly rising. The word was that the prostate was more infected than they thought. I was offered Radiotherapy to clear up the remaining cancer cells. Looking back I was glad that I had opted for the Prostatectomy which left the follow up RT as an available option.
RT did leave me with incontinence and ED but to be honest for the next 12 months it wasn't the uppermost concern.
2.5 years on, the cancer seems to be kicked into the long grass for the time being, I have some leakage when out walking but little at all other times and its quite manageable. The ED issues have been overcome by Invercorp injections which work well. I am very happy with the present state of affairs. I recently found out that post op, my Gleason score was re assessed at 9 and the tumor at T3a.
I guess my point is that there are many twists and turns in the road ahead which are impossible to determine at the present stage that you are at. I would take the option which I believed would best rid me of the cancer and leave the most options open for later treatment. Incontinence and ED are important but side issues until the cancer is defeated. In the early days I fund it very difficult to believe that I had a serious health problem as I had never felt the slightest bit ill and shared all of your present concerns. Looking back from where I am now I feel lucky to be alive with no more than minor inconveniences to deal with.
All the best for the future
SK
Edited by member 09 Jul 2021 at 22:29
| Reason: spilling mistoke
User
Mine was after a Trus biopsy, then it changed to brown sauce for a while before going back to normal.
Thanks Chris
User
Bob. My oncologist steered me towards surgery.
His logic was "the survival statistics are the same for both treatments, but at your age we'd expect you to live for 25+ years and in that timeframe you will definitely get the long-term side-effects of RT."
It's possible that your oncologist might give you a similar steer as you are only 45. But see what (s)he says.
It's great to get a collection of opinions from here, but you need to take advice from the doctors who have your notes and test results in front of them and give that the most weight in your decision.
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
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User
hi Bob, I had a Template biopsy on may 20th this year with a RP on June 29th . It was only around a week before the RP that the blood cleared from my sperm.
Regarding Surgery I suggest you check out TechGuy thread as I found it very useful. I had an excellent high volume surgeon based at Royal Marsden and London Bridge who did a Retzius Neurosafe Robot Assisted RP. I also consulted the top oncologist at Royal Marsden. In my case they all recommended surgery which made the decision easier. My operation apparently went well and I had the catheter removed today. Need to wait now for the PSA test at 8 weeks to see if the optimism is justified or not. The reality of it is much less frightening than the prospect. I know what you are going through. Its horrible but this forum is a great support and I found it invaluable.
good luck we are all rooting for you.
User
Hi Bob,
I was non-nerve sparing, both sides. Took over 3+ years recovery re. ED. however fine and still improving, now post op 6 years.
All the very best
Regards Gordon
User
Bob, I was worried too about whether it had already escaped the capsule. But the Oncologist and Surgeon and my consultant urologist all said it was not necessary to do bone or PET scan with my T2B staging and MRI Result 8 months prior which showed nothing in the lymph or outside the gland. In fact they said these scans would just make me worry more as they were bound to pick up something ! Old rugby Injury’s etc . Anyway time will tell and in 4 weeks time I will know if the PSA is non détectable or not which is apparently the Rolls Royce test of whether it’s spread !
best of luck
Jeremy
User
Hi Bob! Sounds like you will be in excellent hands. If you need a heads up on anything per surgery check my thread or shout me direct. Happy to help where I can to make things as smooth as possible. Depending on where you are travelling from the London Bridge Hotel not far away was a good place to stay (room rate with HCA)….handy when check in was 7am as I didn’t fancy the stress of travelling in at silly O’clock. Amazingly I actually got some sleep.
I guess you have a date for surgery?
cheers
simon
Edited by member 06 Aug 2021 at 20:12
| Reason: Not specified
User
Hi Bob, yes I seem to have been extremely lucky so far on the ED and continence front. Im 90-95% normal erection strength without taking tablets and only used the pump once which I hated. I haven't taken the old fella for a proper ( as opposed to virtual) road test yet but Im wanking like a teenager (hoping to restore some lost length) and the orgasms are perfectly nice and for some reason seem to last longer. No idea why that is. Continence is also almost back to normal. I am wearing only a female Always pad which is very thin and hardly noticeable. Will probably just keep on wearing that indefinitely as its no bother but its often hard to tell whether its needed or not. I did do the Pelvic floors before the Op for a week or so 3 times a day but I have not needed to do them since the Op. I believe a lot depends on your urethal length and how much they can save so again I think I must have been just very lucky in this respect. My waterworks pre op were dreadful with pitiful flow and hesitation but now Much improved beyond my expectations.
On ED I did not feel anything the first week but did have a slight stirring in week 2 when the catheter was still in but it was only a semi and I did not want to encourage it. So just be patient, everyone has a different experience I think and depends on whether nerves were spared or not. He must have spared mine both sides I think and Im sure the Prof, who is equally skilled, will have tried to do the same with you.
Im still terrified about the PSA test in 2 weeks time particularly as I did not have a bone scan or PET scan before the Op with the surgeon relying on 24, 18 & 6 months old MRI scans which all showed Pirads 2&3 with little change from one to the other and no spread to the lymphs. But my histology showed 30% of the gland was cancerous with 8mm tumour the largest so I think the MRI’s were probably not very good in my case and I worry a lot why I did not have the other scans. Frankly my luck with the ED and Continence will be a small consolation (and probably only temporary) if they find the disease has already spread and I need salvage treatment. So am crossing everything and just hoping for the best. I am under no illusions that this whole thing is a journey that never really ends and will likely be full of twists and turns, some good some bad, until hopefully I have a heart attack and die instantly aged 80+ in the arms if some young beauty.
You will feel much better when the catheter is removed and the worry of incontinence or not is passed. I wish you all the best.
Jeremy
jeremy
User
Pleasure Bob
the reason debris is produced, apart from surgical stitches which start to soften at week 5, is the balloon retainer for the catheter irritates the spongy bladder lining. This produces a little blood and inflammation which egresses in your pee. Should start to resolve once the catheter is out :-)
User
Thanks Bob
Going very well and PSA number, thus far, undetectable. I’m 21 months post op which is hard to believe. Occasional drips seem to have cleared too. After a barrel of beer I would drip sometimes but that’s seems much improves. Next thing to try are some weights at the gym and see where the stress point is of my pelvic floor sphincter.
I suspect you will have a good outcome in terms of ED if both bundles spared but it’s never guaranteed. I accepted that side of my life might be over pre surgery but amazingly day five there was a stirring. I waited until I saw the Prof on the week 4 review before letting her ladyship near me. Started out on a very mild 2.5mg tadalafil which helped a lot. I can achieve penetrative sex without it but if tired generally just take 2.5mg beforehand and it does the trick.
simon
User
Hi Bob
No I didn’t as asked around at the time and folks plus others said pelvic floors should do the job and it has. I took up light Pilates/yoga after 12 weeks then returned to the gym.
User
Hi Bob
I wasnt offered any physio I dont think so not sure what you were referring to. Except for the somapump which they recommended and which Im trying to get around to trying again.
as for the first PSA test I will definitely be telling the lab I just had RP and will enquire as to how many decimal points they can measure.
did you get your histology report yet ? I had to ask for a copy of mine but they were happy to email it to me. I found the report reassuring and in my darker moments when I worry about the upcoming PSA test i take some comfort that this was positive.
good luck with everything.
User
Bob
Check the santis website if you registered as everything comes to there super quick. I got my histology before the prof saw it as he was working. It’s very efficient and works like a dream.
yeah recommend waiting for 4 week review before doing anything. I didn’t bother with a pump as didn’t find I need it but it’s self funded if you do. ~£200 I think.
User
You must not use the VED until the surgeon has given you the okay - usually at the 6 week post-op review when he has seen that your inners are healing correctly.
In most (but sadly, not all) areas of the country, you can get a proper VED on the NHS if your surgeon or ED nurse writes to the GP to request it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Very sorry about the positive margin issue. I dont know enough about the issue to offer an opinion im afraid but we are all rooting for you.
I also found the consultants optimism slightly disconcerting. How could he be so sure? But in the meantime I would try and put the upcoming psa test to the back of your mind. There really is no point in worrying as there is nothing you can do. Of course Thats easier said than done! Good luck
User
@Jeremys,
Thanks for your kind message. I too cannot understand why my surgeon consultant is so optimistic. I will drop him an email and ask him to elaborate as his answers over the phone can be very dry. He is very good at responding to emails.
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Plug your to numbers in here to work it out for yourself
https://www.mskcc.org/nomograms/prostate/post_op
What the surgeon has described is correct and not unreasonable. The big test will be that first post op PSA. Unfortunately you have to grin and bear it until then.
User
The size of the margin and the Gleason grade at the the margin. TBH the recurrence rate of positive and negative margins is very similar and this supports your surgeons assertion that the trauma of the op and the hot knife fatally damages cells beyond the excision.
The good news for positive margins is should you have a recurrence it makes salvage RT more successful.
Try to forget about all this s*** until your next PSA!
User
If the surgeon thinks you're probably alright, try to accept it. None of us have cast-iron guarantees, even those with negative margins.
I also had a small positive margin. My surgeon said it was "diathermied" which pretty much means it would have been fried by the heated snippers of the DaVinci robot.
If your PSA is low and stays low, you're OK - for now. It's a bit sad, but that's about as solid as the reassurance gets. But your attitude of 'one day at a time' is spot-on and is the right approach.
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
User
Hi Bob!
As Alex says there are no guarantees in this game. But so far the stats and data are on your side. It’s very much a roller coaster ride through and through. I pretty much expect mine to come back at some point but the longer I can push that back gives the science more time to evolve. Chin up and enjoy the bubbly as you defo have had a good outcome so it’s celebration time 🍻🥂
User
This has not met the criteria for recurrence, so no immediate panic. Get a retest, then get tests every three months to see what is happening.
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Bob, for many of us, a post surgery PSA of 0.1 will bring us back under the umbrella urology. For me it meant more frequent PSA tests and as I approached 0.2 I was also referred to oncology. Treatment didn't start until I was just over 0.2. protocol is charging all the time and they may let you get beyond 0.3 before starting treatment.
Wondering is fine, worrying won't change the future results.
Thanks Chris
User
Bob, we are in the same boat - RARP in May 23, initially a PSA of < 0.01 and then, 6 months later it's at 0.12. Next PSA test is March so we will see what's going on - if > 0.2 then I am to be referred for SRT.
Oh what fun! NOT
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Just bumping you up Bob.
Added
I have had supposedly non nerve RARP and salvage RT, I did get some promising signs after surgery but but never fully recovered. I then had Salvage RT which probably did me no favours.
My flaccid penis is very healthy and after seven years I do get the odd surprise. Never give up and have lots of fun, you don't need an erection for intercourse.
Make your first priority getting rid of the cancer or at least get it under control.
Thanks Chris
Edited by member 09 Jul 2021 at 22:40
| Reason: Added comments
User
Yes. It is possible. My diagnosis was VERY similar to yours (check my profile if you like). I had partial nerve-sparing on one side and pretty much full on the other. I found out this was successful while the catheter was still in (nocturnal stirrings - bit painful)
You can search on the BAUS website for each surgeon's outcomes
https://www.baus.org.uk/patients/surgical_outcomes/radical_prostatectomy/default.aspx
I can't help you with that one, but someone else surely will.
I additionally, I would say that it's a good idea to go and talk to both surgeon and oncologist to get their take on it. Very often they will advise younger people (I was 50) to have surgery - particularly if you're fit and healthy and not overweight. But it's good to hear from both sides.
Edited by member 09 Jul 2021 at 22:11
| Reason: Not specified
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
User
1. Yes - erectile recovery isn't determined only by how many nerves were saved. A man can have full nerve sparing but never have an erection again, and very rarely a man who had non-nerve sparing surgery can recover. Nerve sparing is part of it but also how much bruising or burn damage is done, and then self-care and rehab afterwards. My husband was diagnosed at age 50 and had RP with the nerves on one side saved. He recovered natural erections - the most significant progress was between years 2-3. Nerve sparing on one side only isn't dramatically worse for ED than full nerve sparing - about 90% of men who have had nerve sparing RP can get an erection 12 months post-op although around 50% of those can only do so with tablets, erections or a vacuum pump.
2. Talk to him - see if you like him and feel confident about what he is saying & that he doesn't have an ego the size of the moon. Then check his stats on the BAUS website - urologists are supposed to publish their data and most (but not all) do. Be aware though that a brilliant surgeon may have what looks like not so great results because s/he is willing to operate on men who are borderline T3a/b while someone with amazing stats might be cherry-picking only the nice easy T1/T2s. There is a list of questions on here somewhere to ask the surgeon but from memory, you want to know things like a)how many of these ops do you do a year? b) what % of your cases have had a % margin c) what % of your cases have had biochemical recurrence within 5 years? d) what % of your patients are still using continence pads at 12 months post-op e) what % of your patients can have penetrative sex at 12 months?
There are some subtleties to be aware of - in the NHS data, 'dry' means using one pad per day or less and regaining EF means getting an erection with or without chemical or mechanical aids and doesn't take into account whether that erection is sufficient to actually engage in penetrative sex
3. No clear data - while on HT, the man might have erections but no libido. Once HT finishes, the libido may return just as ED starts to develop but it isn't guaranteed that you will get ED. Generally, erections start to get a bit more difficult to achieve from about year 2 and ED kicks in around year 5. If the man has not maintained good penile rehab while on HT, the ED might not be so much of a problem as atrophy (which is permanent).
But as above, my husband did recover natural erections post-op and the RT doesn't seem to have caused any problems. However, he does have ED which is psychological rather than physical - the mental impact of treatment for prostate cancer should not be underestimated.
It is also worth noting that there are at least 5 types of RP - open surgery, keyhole/ laparascopic, robotic keyhole, perineal and retzius sparing. My OH chose open for a number of reasons, not least because in his case, the surgeon felt that would give the best chance of nerve sparing. Perineal is rarely done now in the UK. Retzius sparing is designed to minimise the risk of incontinence. So it isn't just that you are asking to see a urologist with experience of keyhole RP - does he do that the old way or with a robot?
I notice that you haven't asked any questions about continence which is often a newly diagnosed man's biggest concern. Non-nerve sparing increases the risk of permanent incontinence.
Edited by member 09 Jul 2021 at 22:24
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
I had similar numbers to you at the same stage. I was told that they would do what they could to spare nerves but there is no guarantee.
After the op my PSA was 0.2 and slowly rising. The word was that the prostate was more infected than they thought. I was offered Radiotherapy to clear up the remaining cancer cells. Looking back I was glad that I had opted for the Prostatectomy which left the follow up RT as an available option.
RT did leave me with incontinence and ED but to be honest for the next 12 months it wasn't the uppermost concern.
2.5 years on, the cancer seems to be kicked into the long grass for the time being, I have some leakage when out walking but little at all other times and its quite manageable. The ED issues have been overcome by Invercorp injections which work well. I am very happy with the present state of affairs. I recently found out that post op, my Gleason score was re assessed at 9 and the tumor at T3a.
I guess my point is that there are many twists and turns in the road ahead which are impossible to determine at the present stage that you are at. I would take the option which I believed would best rid me of the cancer and leave the most options open for later treatment. Incontinence and ED are important but side issues until the cancer is defeated. In the early days I fund it very difficult to believe that I had a serious health problem as I had never felt the slightest bit ill and shared all of your present concerns. Looking back from where I am now I feel lucky to be alive with no more than minor inconveniences to deal with.
All the best for the future
SK
Edited by member 09 Jul 2021 at 22:29
| Reason: spilling mistoke
User
You are very unlucky to have contracted this disease aged 45.
There is a school of thought that in a very few years surgery for prostate cancer will be scoffed at as barbaric, as radiotherapy is so effective.
All I can advise is that you speak to a surgeon and an oncologist, and then get second opinions from both of those disciplines.
Best of luck.
Cheers, John.
User
@Chris, many thanks for your encouragement. Yes, I agree that getting rid of the cancer is the priority. That's what my wife and parents are telling me.
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Alex,
Thanks for the message and glad to see it's working out for you.
I have a call later this afternoon with a surgeon working at Princess Grace in London. I'm told he is good. I will ask him for the name of an oncologist to talk to.
Right now, I need all the encouragements I can get.
Bob
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@Lyn,
You are living encyclopaedia! Thank you so much for the information. It is so useful. I am overwhelmed with the amount of support.
I will digest all the info you've shared and potentially come back with any queries.
Bob
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@Bollinge,
You're making me doubt now as my choice of RP over RT.
My thinking is that after RP, I can still have RT, while after RT, it's a lot trickier to have RP... Wife, mum and dad seem all in favour of RP over RT...
Bob
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Hey @SK,
Interesting story... have you ever wondered if the RT would have cleared all the cancerous cells in the first instance if you had gone for RT first instead of RP?
Bob
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By the way, is it normal for my sperm to look like tomato ketchup 2 weeks after transperineal biopsy?
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Mine was after a Trus biopsy, then it changed to brown sauce for a while before going back to normal.
Thanks Chris
User
Originally Posted by: Online Community Member@Bollinge,
You're making me doubt now as my choice of RP over RT.
My thinking is that after RP, I can still have RT, while after RT, it's a lot trickier to have RP... Wife, mum and dad seem all in favour of RP over RT...
Bob
This is commonly said but it is flawed thinking. Whatever treatment you choose, if it fails and you need salvage treatment, your odds of ever achieving full remission drop dramatically. I saw recently on the BAUS website that something like 50% of men who need salvage RT after RP have a further recurrence within 6 years and become incurable. The % failure at 10 years was higher - about 70%.
So choosing a treatment based on the fact that something else can be done if it fails is not as sensible as choosing the treatment least likely to fail. Then it gets more difficult; if the treatment least likely to fail has a high chance of side effects that you are not prepared to risk, you have to weigh up which is the next best treatment for remission but with risks that you are willing to take.
You also need to be aware that in younger men, it does seem that prostate cancer can be much more determined & persistent. There may be no scientific evidence for that but just from the membership here, we have seen it over and over again - OldAl (who was 50), Alathays, Spurspark, ChrisJ, Ulsterman, Candyman to name just a few. When my OH was diagnosed with a T1a G3+4 and PSA of 3.1 it seemed that he had an excellent chance of remission. However, the diagnostic letter from the surgeon to the GP stated that there was a 55% chance of recurrence post-RP (which we had to clarify as we assumed it was a typo and he meant 5%) but he was bang on - John had to have salvage RT 2 years later. All these years later, his PSA wanders between <0.1 and 0.11 so there are obviously some cells lurking somewhere but to be honest, we don't worry about it except at testing time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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The RP vs RT debate is very difficult to resolve. Some people are not given the choice because of the nature of their particular disease. But if you are given the choice it is because the medics thinks each one has an equal chance of success.
If you went down the pub on a karaoke night, grabbed the microphone in the middle of "sweet Caroline" and said, "I've got cancer, should I cut it out or blast it with x rays? show of hands please". The replies would be "get off", "come on England", but if you did get the show of hands 80% would be "cut it out". In fact after a few jars some of the patrons may offer to do it there and then using nothing more than a knife, fork and dessert spoon.
What I'm trying to say is there is a very strong irrational bias towards the more aggressive treatment, try and ignore that and decide what is best for you.
After the procedure regret nothing. If it fails, then the other one probably would have as well, if you have dreadful side effects then you may have got dreadful side effects from the other one as well.
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@Lyn, I must say, your last message came as a bit of blow to me but at least it's honest... and I know what to expect now. I will certainly ask the question (I have my consultation with a renowned surgeon at 13:45!)
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Bob
At a group support meeting our senior oncologist said where guys were suitable for RP or RT he would steer them in the direction of RP.
He used all the terms considered to be flawed thinking, second bite of the cherry, removal of the mothership etc.
In my case neither treatment eradicated the cancer but I don't refer to them as failed treatment.
Until we have the technology to reliably detect individual cancer cells any treatment will be a gamble.
Good luck with your difficult decision.
Thanks Chris
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Bob. My oncologist steered me towards surgery.
His logic was "the survival statistics are the same for both treatments, but at your age we'd expect you to live for 25+ years and in that timeframe you will definitely get the long-term side-effects of RT."
It's possible that your oncologist might give you a similar steer as you are only 45. But see what (s)he says.
It's great to get a collection of opinions from here, but you need to take advice from the doctors who have your notes and test results in front of them and give that the most weight in your decision.
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
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I and three friends were diagnosed with PCa about the same time three years ago. Three of us had prostatectomies by the best surgeons money can buy, and one via his local NHS urologist.
All three of them had what’s called biochemical recurrence within a few months after surgery, and had to undergo radiotherapy to kill off the remaining cells. Should they have gone with RT in the first place?
This is hardly a scientific survey with a cohort of just four, but we are all doing fine now, and you might see one of us in the Royal Box at Wembley tonight. I will be watching at home…
Cheers, John.
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hi Bob, I had a Template biopsy on may 20th this year with a RP on June 29th . It was only around a week before the RP that the blood cleared from my sperm.
Regarding Surgery I suggest you check out TechGuy thread as I found it very useful. I had an excellent high volume surgeon based at Royal Marsden and London Bridge who did a Retzius Neurosafe Robot Assisted RP. I also consulted the top oncologist at Royal Marsden. In my case they all recommended surgery which made the decision easier. My operation apparently went well and I had the catheter removed today. Need to wait now for the PSA test at 8 weeks to see if the optimism is justified or not. The reality of it is much less frightening than the prospect. I know what you are going through. Its horrible but this forum is a great support and I found it invaluable.
good luck we are all rooting for you.
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Hi Bob,
I was non-nerve sparing, both sides. Took over 3+ years recovery re. ED. however fine and still improving, now post op 6 years.
All the very best
Regards Gordon
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Thank you all. I am very likely to go for surgery. I was told that at my age, it's recommended to have surgery... but I have not confirmed in writing with my surgeon to go ahead and book the operation...
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Dear all,
A quick update: I have now spoken with both surgeon and oncologist. Both steered me towards surgery (RP) because of my age and relative good health. The oncologist is thinking along the lines of: "you would be expected to live 20+ years and in that timeframe, you are likely to suffer from long-term side effects from radiotherapy". Similar story to what @Alex_cycles mentioned...
I did talk about HIFU with the oncologist and urologist but both were dismissive. They were not convinced it would remove the cancer in my case, merely delay RP or RT by a mere few years at most... I guess it's because the cancer is in both lobes and it would be difficult to eradicate it completely? The urologist also mentioned risk of fistula associated with HIFU...
I also discussed proton beams with the oncologist; she said that while side effect my be lesser in the short term (when compared with standard form of RT), long-term side effects from proton beam would be on a part with other RT techniques ("radiations are still radiations"), so for a young patient like me, it's still not the preferred treatment path.
Bottom line is: everything points to RP.
I have now booked Retzius Neurosafe Robot Assisted RP with a leading surgeon professor at London Bridge Hospital. He is a high-volume surgeon (BAUS website) and all I can do is hope it goes well (i.e. cancer is fully removed, any continence and impotence issues are temporary, etc.).
@Jeremys, I will definitely look at the TechGuy conversation.
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Excellent. So now you've been through the diagnostics and the decision process, you have a definite pathway and hopefully that will take away some of the stress.
Surgery lies ahead, and while that isn't something to 'look forward to', at least you can feel a bit more in control.
In the meantime, I heartily recommend doing plenty of pelvic floor exercises to build up your muscles to aid continence post-surgery good video about that here https://youtu.be/QHwVglPQR_w
Also any general increase in fitness will help you too (some people liken it to peaking for an athletic event).
_____ Two cannibals named Ectomy and Prost, all alone on a Desert island. Prost was the strongest, so Prost ate Ectomy. |
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Bob , You are in the right place at LBH with one of what TechGuy calls the “Ninja” surgeons. Mine, the Irishman I call him, was a real Ninja and with a similar diagnosis to yours Gleason 3+4 and T2bN0M0 managed to save the nerves. You are young and have improved your odds substantially of a good result Im sure by choosing a high volume surgeon. I am now nearly 4 weeks post op at LBH and am continent and no problems with ED. I do wear pads Tens 2 but only need them for dribbles when I get up or try to squeeze a fart. Am wanking daily on doctors orders as I don’t like the somaerect pump they recommended. I did lose a bit of Length which I could Ill afford but can live with that. The orgasms without ejaculation are very nice indeed - in some ways better than before- as they were so unexpected after all the fears I had. They seem to last longer and this compensates for the lack of ejaculate. I’m driving now and walking but taking it easy generally.
Suggest you go for the extra local anesthetic they offer before the general as this meant I had very little pain.
The worst bit is the catheter for the first couple of days but after that you will get used to it unless you have a Malfunction as I did and have to have it changed. And expect some catheter bypass and blood from your penis when doing a poo. This worried me as no one warned me but is normal when you have a bladder neck reconstruction apparently. That’s cleared up now. Also take the laxatives they recommend I suggest. I tried to make sure My bowel was empty before I went in as I didn’t want the worry of constipation post op.
My histology report post op was very good with no upgrade to staging and negative margins both on the day and post op. Im still worrying though about the PSA test at 8 weeks as this will tell me whether it was really a success or not but fingers crossed
wishing you the very best of luck. I pray you have the same experience as me. Try to not to worry. You have done all you can and got yourself the top surgical team. So relax and leave it up to them.
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@Alex_cycles, rest assured I am now doing my pelvic exercises daily (3 times a day) and use my cross-trainer, also daily. ;-) I did feel some relief after making the decision.
@Jeremys, many thanks for your reassuring words and tips. I feel I have done everything I could do by selecting that team of top surgeons. As you rightly said, all I can do now is leave it to them. I am still anxious that my cancer is not organ contained though both MRI and biopsy show no capsular invasion (we all know those observation techniques are not 100% perfect...). I guess I will only know from the post-op histology.
I will post an update once I am on the other "side"...
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Bob, I was worried too about whether it had already escaped the capsule. But the Oncologist and Surgeon and my consultant urologist all said it was not necessary to do bone or PET scan with my T2B staging and MRI Result 8 months prior which showed nothing in the lymph or outside the gland. In fact they said these scans would just make me worry more as they were bound to pick up something ! Old rugby Injury’s etc . Anyway time will tell and in 4 weeks time I will know if the PSA is non détectable or not which is apparently the Rolls Royce test of whether it’s spread !
best of luck
Jeremy
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Hi Bob! Sounds like you will be in excellent hands. If you need a heads up on anything per surgery check my thread or shout me direct. Happy to help where I can to make things as smooth as possible. Depending on where you are travelling from the London Bridge Hotel not far away was a good place to stay (room rate with HCA)….handy when check in was 7am as I didn’t fancy the stress of travelling in at silly O’clock. Amazingly I actually got some sleep.
I guess you have a date for surgery?
cheers
simon
Edited by member 06 Aug 2021 at 20:12
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@Jeremy, @TechGuy,
Thank you both for your kind messages of encouragement.
I actually had the operation a few days ago at the HCA hospital (which looks like a spaceship from a science fiction movie set). I still cannot believe this prostate cancer thing. It came so abruptly, so quickly. The past 2 months have been a hell of a roller coaster. Now back home, getting on with my surgery recovery journey. The operation went as planned with the Professor (not to name him) able to spare my Retzius and my neurovascular bundles on both sides. The intraoperation frozen section showed clear margins.
Now dealing with catheter (which seriously limits how far I can walk outdoors as it fills up pretty quick) and constipation. Glycerol suppository seems to be doing the trick until movicol kicks in. Shoulder pain went away, which is great...
I recently tumbled on an interesting articles:
Through my cancer, I have found the key to a good life | George Monbiot | The Guardian
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great news and sounds like a great op outcome pending histology. It was an impressive location on the private wing at guys. Very smooth and fantastic staff plus very good food. Rooms very spacious etc
the catheter was a bit of a pain but you kinda get used to it. Makes one appreciate the flexibility of having a bladder as amazed me too how quickly it fills. Did you get the statlok clips for your thigh? I put the spare one on my other leg so I could move the pipe across every ~12 hrs or so in an attempt to save the wear and tear on my chaps urethral entrance.
shoulder gas was quite an experience. Myself and Grant60(from here) had our ops at pretty much same time and were comparing notes walking around the corridors doing the daily exercise while entertaining the nursing staff.
for the constipation initially used lactulose from the chemist although didn’t have too much. Stayed in the middle range of recommended dose. When I got home had plenty of high fibre, veg soups, prunes etc waiting but thankfully the constipation settled after a few days. recommend to try and eat say five smaller meals a day to space things out. Just work with whatever feels comfortable I guess :-)
Please keep us posted on your recovery and shout if you need anything.
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Congratulations! Very glad that you are now post op and hopefully will make a speedy recovery. The worst bit is the catheter but its only a couple of weeks and you will get used to it Im sure. Its obviously worrying waiting for the post op histology report and then the PSA in 8 weeks. So fingers crossed for that ! My histology was good but Im still waiting to do my PSA in 3 weeks time and crossing everything. You were definitely in the right place with a great surgical team so have improved your odds but lets pray for a bit of luck as well and that they got it all out first time. Wishing you all the best and I hope your journey will be smooth as mine has been so far.
In terms of recovery Im feeling pretty good now after 5 weeks with no pain recently at all except for a little twinge last night which I think must have been a bit of debris coming down the uretha. Thankfully all seemed fine this morning. Am walking 10,000 steps most days and getting my strength back. My biggest problem the last couple of weeks has been gout in my feet which seemed to not be clearing with the surgical socks I was wearing so I took the decision to take off the socks and the gout is now clearing. I was not prescribed the daily injections and just hoping I dont get a blood clot as a result of removing the socks a bit earlier than advised.
hope you will keep us updated with your progress
jeremy
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I have noted little blood clots and white fleshy bits in my urine. Is that normal?
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Yes Bob, perfectly normal. You’ll get all sorts in it for a while even after they remove the catheter. Just keep hydrated and revise Netflix :-)
Enjoy your Sunday!
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Cheers TechGuy!
@Jeremy, no ED only after 4 weeks?!? That's an incredible result. I know it's still early days for me, less than 1 week post op, but it's very quiet down there... bar a slight flaccid swelling when stimulated... Are you taking tablets?
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Hi Bob, yes I seem to have been extremely lucky so far on the ED and continence front. Im 90-95% normal erection strength without taking tablets and only used the pump once which I hated. I haven't taken the old fella for a proper ( as opposed to virtual) road test yet but Im wanking like a teenager (hoping to restore some lost length) and the orgasms are perfectly nice and for some reason seem to last longer. No idea why that is. Continence is also almost back to normal. I am wearing only a female Always pad which is very thin and hardly noticeable. Will probably just keep on wearing that indefinitely as its no bother but its often hard to tell whether its needed or not. I did do the Pelvic floors before the Op for a week or so 3 times a day but I have not needed to do them since the Op. I believe a lot depends on your urethal length and how much they can save so again I think I must have been just very lucky in this respect. My waterworks pre op were dreadful with pitiful flow and hesitation but now Much improved beyond my expectations.
On ED I did not feel anything the first week but did have a slight stirring in week 2 when the catheter was still in but it was only a semi and I did not want to encourage it. So just be patient, everyone has a different experience I think and depends on whether nerves were spared or not. He must have spared mine both sides I think and Im sure the Prof, who is equally skilled, will have tried to do the same with you.
Im still terrified about the PSA test in 2 weeks time particularly as I did not have a bone scan or PET scan before the Op with the surgeon relying on 24, 18 & 6 months old MRI scans which all showed Pirads 2&3 with little change from one to the other and no spread to the lymphs. But my histology showed 30% of the gland was cancerous with 8mm tumour the largest so I think the MRI’s were probably not very good in my case and I worry a lot why I did not have the other scans. Frankly my luck with the ED and Continence will be a small consolation (and probably only temporary) if they find the disease has already spread and I need salvage treatment. So am crossing everything and just hoping for the best. I am under no illusions that this whole thing is a journey that never really ends and will likely be full of twists and turns, some good some bad, until hopefully I have a heart attack and die instantly aged 80+ in the arms if some young beauty.
You will feel much better when the catheter is removed and the worry of incontinence or not is passed. I wish you all the best.
Jeremy
jeremy
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Pleasure Bob
the reason debris is produced, apart from surgical stitches which start to soften at week 5, is the balloon retainer for the catheter irritates the spongy bladder lining. This produces a little blood and inflammation which egresses in your pee. Should start to resolve once the catheter is out :-)
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@TechGuy, your knowledge is much appreciated! 😀 Hope your recovery is going smoothly.
@Jeremy, yes, the Prof did spare my nerves on both sides so I guess it's wait and see. Am relatively young, which should play in my favour but I'm not holding my breath: everybody is different... I know you said you hated the pump but why not give it another try as it might help with the lost length/girth (at least, in my simplistic mind, I can see how injecting blood under pressure into the penis could help with those problems)? Anyway, I'm sure the frantic wanking must do some good re blood flow. 😁
My mp-MRI, which is quite recent showed a big 9mm tumour so I'm expecting a big % of my prostate to be cancerous too. Our cases are not that different. I wish you luck with your first post-op PSA test. I hope it goes well. I thought I would be in the clear after the operation (i.e. the cancer is gone) but I realise that with that kind of disease, the best one can hope for is temporary reprieve, which is why it's even more important to live "in the now" and avoid projecting oneself into the future. I know it's easier said than done.
For the first PSA test, did you have to tell the lab that does the analysis that you had RP?
Bob
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Thanks Bob
Going very well and PSA number, thus far, undetectable. I’m 21 months post op which is hard to believe. Occasional drips seem to have cleared too. After a barrel of beer I would drip sometimes but that’s seems much improves. Next thing to try are some weights at the gym and see where the stress point is of my pelvic floor sphincter.
I suspect you will have a good outcome in terms of ED if both bundles spared but it’s never guaranteed. I accepted that side of my life might be over pre surgery but amazingly day five there was a stirring. I waited until I saw the Prof on the week 4 review before letting her ladyship near me. Started out on a very mild 2.5mg tadalafil which helped a lot. I can achieve penetrative sex without it but if tired generally just take 2.5mg beforehand and it does the trick.
simon
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@TechGuy/Simon & @Jeremy,
Did you take up on the physiotherapy offer?
It's covered by my insurance but the travel is going to be a pain so wanted to know if the physiotherapy session is a must have.
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Hi Bob
No I didn’t as asked around at the time and folks plus others said pelvic floors should do the job and it has. I took up light Pilates/yoga after 12 weeks then returned to the gym.
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Hi Bob
I wasnt offered any physio I dont think so not sure what you were referring to. Except for the somapump which they recommended and which Im trying to get around to trying again.
as for the first PSA test I will definitely be telling the lab I just had RP and will enquire as to how many decimal points they can measure.
did you get your histology report yet ? I had to ask for a copy of mine but they were happy to email it to me. I found the report reassuring and in my darker moments when I worry about the upcoming PSA test i take some comfort that this was positive.
good luck with everything.
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I guess I will attend the first session and see what it's all about. They may want to check if I'm doing the PFE properly...
Is the VED pump something you buy with your own money? I'm thinking of buying one now but maybe best to wait for the appointment when they remove the catheter.
I have not had my histology report yet. I'm only 1 week post op.
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Bob
Check the santis website if you registered as everything comes to there super quick. I got my histology before the prof saw it as he was working. It’s very efficient and works like a dream.
yeah recommend waiting for 4 week review before doing anything. I didn’t bother with a pump as didn’t find I need it but it’s self funded if you do. ~£200 I think.
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@TechGuy,
Yep, you were right, the report was already uploaded on the system. It's very quick, efficient and convenient. As far as I can tell, there seems to be no nasty surprises (i.e. pathology match clinical), which is reassuring. Will discuss with the Prof in a few weeks' time.
Got myself a VED to work on penile rehabilitation as soon as the catheter is out.
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You must not use the VED until the surgeon has given you the okay - usually at the 6 week post-op review when he has seen that your inners are healing correctly.
In most (but sadly, not all) areas of the country, you can get a proper VED on the NHS if your surgeon or ED nurse writes to the GP to request it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks LynEyre, I will make sure to double check with my surgeon first.
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Well, I had my final histology consultation and it turned out to be a mixed bag. On the plus side, the cancer grade (3+7) and stage (T2) remain unchanged.
On the not so plus side, there is one positive margin (8mm) on the left apical anterior. I discussed the matter with my consultant and he did not seem to think it was significant and would impact biochemical recurrence (BCR) as he used cautery in that area (hot knife). His view is that the heat will have taken care of cancer cells on either side of the margin. I would like to share his optimism but I am rather anxious and find myself having to wait for the dreaded first PSA test in 6 weeks time.
His prognosis is 90% to 95% chance of being disease free in 10 years' time which I find positively high. I did ask him to confirm as I could not believe it. I also asked him to confirm if the nomograms he used took into account the positive margin. He said yes.
Anyway, I wonder if that positive margin business has happened to others... Would be good to share/exchange.
On the plus side I have 40~50% erection at week 4 post op and continence is good.
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I must confess I am really feeling down and could do with some support...
This positive margin business is really dragging me down...
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