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Can't understand why anyone would choose surgery over Brachytherapy? I must be missing something?

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User
Posted 13 Jan 2021 at 20:25

diagnosed last week ! 

Anterior abnormal area, 10 out of 13 cores Gleason 3+4=7 (10% pattern 4).      

Perineural invasion present, maximum cancer length 13mms, maximum percentage core involvement 80%.

MR scan show possibility of T3a N0M0.

Benign feeling prostate.

PSA 8.

(Above cut and pasted directly from biopsy constants letter)

I’m 51 generally fit and healthy with absolutely no symptoms at all, and never had any problems with my water works or ED. 

Would still be none the wiser had it not been for a very efficient GP calling for a check up scan following a bad bout of prostatitis (told it’s not linked at all) 

Biopsy consultant has told me active surveillance isn’t an option and like many on here I now have the difficult decision surgery or brachytherapy - no mention of any HT

My initial thoughts with no “official “ information to hand other than from here and google was surgery, being an engineer my thoughts where why waste time treating it with a radioactive seed😳 when you can just cut it out and be done with it. 

 

Having now had consultations with the surgeon and oncologist I am now more confused than ever

 

If what the oncologist says and the info in the Brachytherapy booklet he gave me is all fact? 

Why on earth would anyone put themselves through the surgery???? Apart from the very obvious reason “it’s cancer😳 just cut it out and get rid of it in one go” I’m struggling to find another reason why people would choose surgery. Plus there seems to be quite alot of people on here that have had surgery then have needed to have RT and HT anyway as it wasn’t all removed first time round.

Or am I missing something vital? 

Success rates appear to be similar for both. 

Days off work and recovery appears much shorter with Brachytherapy - 2 separate days in hospital with a few days feeling rubbish and back to work the week after, with the surgery it’s a major operation(with its associated risks) much longer in hospital, catheter in for 10 days + and weeks of work. 

Both appear to have similar risk of ED and long term water works problems.

And going down one route seems to preclude the use of the other if it isn’t 100% successful with both ending up needing hormone or external radiotherapy. 

Surgery seems really popular for men in their 40’s and 50’s and less so above 70 

The above 70 bit I totally get (recovery) but can’t understand why it is so popular for the younger chaps , please help as I must be missing something 

Thankfully I’m covered by my wife’s work health insurance so either treatment hopefully shouldn’t  be affected by COVID.

 

Thanks

x

Edited by member 13 Jan 2021 at 23:05  | Reason: Spelling

User
Posted 13 Jan 2021 at 20:25

diagnosed last week ! 

Anterior abnormal area, 10 out of 13 cores Gleason 3+4=7 (10% pattern 4).      

Perineural invasion present, maximum cancer length 13mms, maximum percentage core involvement 80%.

MR scan show possibility of T3a N0M0.

Benign feeling prostate.

PSA 8.

(Above cut and pasted directly from biopsy constants letter)

I’m 51 generally fit and healthy with absolutely no symptoms at all, and never had any problems with my water works or ED. 

Would still be none the wiser had it not been for a very efficient GP calling for a check up scan following a bad bout of prostatitis (told it’s not linked at all) 

Biopsy consultant has told me active surveillance isn’t an option and like many on here I now have the difficult decision surgery or brachytherapy - no mention of any HT

My initial thoughts with no “official “ information to hand other than from here and google was surgery, being an engineer my thoughts where why waste time treating it with a radioactive seed😳 when you can just cut it out and be done with it. 

 

Having now had consultations with the surgeon and oncologist I am now more confused than ever

 

If what the oncologist says and the info in the Brachytherapy booklet he gave me is all fact? 

Why on earth would anyone put themselves through the surgery???? Apart from the very obvious reason “it’s cancer😳 just cut it out and get rid of it in one go” I’m struggling to find another reason why people would choose surgery. Plus there seems to be quite alot of people on here that have had surgery then have needed to have RT and HT anyway as it wasn’t all removed first time round.

Or am I missing something vital? 

Success rates appear to be similar for both. 

Days off work and recovery appears much shorter with Brachytherapy - 2 separate days in hospital with a few days feeling rubbish and back to work the week after, with the surgery it’s a major operation(with its associated risks) much longer in hospital, catheter in for 10 days + and weeks of work. 

Both appear to have similar risk of ED and long term water works problems.

And going down one route seems to preclude the use of the other if it isn’t 100% successful with both ending up needing hormone or external radiotherapy. 

Surgery seems really popular for men in their 40’s and 50’s and less so above 70 

The above 70 bit I totally get (recovery) but can’t understand why it is so popular for the younger chaps , please help as I must be missing something 

Thankfully I’m covered by my wife’s work health insurance so either treatment hopefully shouldn’t  be affected by COVID.

 

Thanks

x

Edited by member 13 Jan 2021 at 23:05  | Reason: Spelling

User
Posted 24 Jan 2021 at 14:27

Hi all, we seem to be getting off topic can we keep phil's thread to comparing surgery to brachy. Rikki's comments about side effects of surgery are very relevant to this, but issues about consent probably belong on another thread. 

Dave

User
Posted 16 Jan 2021 at 20:54

"that increased risk of worse side effects meant that they wouldn’t do a prostatectomy as salvaging treatment if radiotherapy / brachy didn’t succeed. Is that right? No idea where I read that - is that ever true in the UK?"

It is true - an irradiated prostate becomes gloopy or sticky so it is more difficult to remove cleanly - and nerve sparing is not possible so ED is more or less guaranteed and incontinence is more likely. There are just a few urologists that will attempt the op in the right cases and we have a couple of members who have gone down this route.

However, there is a whole myth that has been built around the idea that 'at least you can have RT after surgery but not surgery after RT'. In fact, if the first treatment fails, the statistical likelihood of salvage treatment being successful is quite low, whichever order you do them. It makes sense to choose the treatment that is most likely to be successful rather than the one that can be followed up if it fails.

Edited by member 16 Jan 2021 at 20:56  | Reason: Not specified

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

User
Posted 22 Jan 2021 at 15:20

Hi Phillip,

It's a difficult choice, but if you have been given options that's good some men don't have the diagnosis to choose.

There are no easy options which one you choose, there are no right or wrong decisions, the decision you make is right for you only time will tell.

I was on Active surveillance for 3years but in November 2020 I had a prostatectomy during the course of my active surveillance I studied all the different treatments in great depth and sought advice from others, my surgery went fantastic a full nerve sparing was possible, I am now fully continent had very little problems after catheter removal, ED will take a little longer spoke with my surgeon this morning and he has referred me to a ED Clinc even though I'm not that far off.

I had no problem with recovery I'm retired but after 2 weeks I could easily have returned to work I could drive no problem everything now healed.

I have no regrets whatsoever and I know if further treatment was ever required then I could have radiotherapy, but if that is the first choice then surgery becomes less of an option due to the changes after radiotherapy alters the tissues.

Good luck it's a personal choice go with what you think is best for you don't rush it.

User
Posted 24 Jan 2021 at 20:34

When I was first diagnosed Jan 2018 (age 62) it was with a "low risk" Gleason 6, and I was put on AS.  When they found a new "high risk" Gleason 8 tumour in Oct 2019 (age 64) and clinical intervention became necessary my first thought was go for surgery.  I think it's a pretty classic response, get rid of prostate get rid of PCa!  Then the MDT advised me against it.  They wanted to remove lymph nodes too and they thought, given my physical state and lifestyle, that the potentially five hour op under GA would carry too high a morbidity risk.

So I settled for EBRT, which finished last August.  Had some pretty unpleasant side effects since, some of which have cleared up now but some such as,nocturia (average four times a night which leaves me wasted the next day), radiation cystitis and piles, are still giving me a lot of pain and grief.

Part of me still wishes I'd had the thing whipped out, especially as I have a non-secreting tumour so the regular follow up PSA tests are not a reliable indicator as to whether the cancer is still there and growing.  That said, I met a guy in the waiting room while having my EBRT.  He'd had his prostate surgically removed four years previous.  Told me he thought he was "cured".  Then four years on a routine blood test showed his PSA had rocketed.  So he was back in for EBRT.

Not sure what point I'm making here to be honest, other than no option offers a 100% certain outcome, and all options can and will have a knock-on effect on your life.

Edited by member 24 Jan 2021 at 20:38  | Reason: Not specified

User
Posted 14 Jan 2021 at 00:19
I was told that any form of radiotherapy was risky for me because I have (albeit mild) colitis. Given that side effects tend to hit the bowel region, I was told there was a considerable risk of life changing side effects. So there's a good reason for surgery.

TBH I would probably have chosen surgery anyway - I am more of a let's just get rid of it person and I already had surgery for a melanoma including lymph node removal 2 years before; I knew I recovered well.

Surgery was last March when I was 68. 1 day in hospital. Catheter in for 10 days. Started doing some work as soon as the catheter was out, but I can work from home, so possibly not typical. Was working full time by 4 weeks, possibly overdid it a bit. Physical recovery not a problem, but I could only have nerve-sparing one side and still have ED.

I'm not sure that those on here are typical of post-surgery chances; those with longer journeys probably stick around longer in general.

User
Posted 14 Jan 2021 at 00:30

Hi Phillip,

A very well thought out and reasoned post. Choice of treatment can be difficult. I was lucky in that the MDT gave me no choice; my cancer was T3, surgery would probably not have got all of it so I had the same treatment as ANDY62. At my hospital they didn't give it the fancy name "HDR boost", they just called it HDR Brachy followed by ebrt, plus HT. I was 53 at diagnosis so like you relatively young.

I don't know if you are aware that brachy comes in two varieties HDR and LDR, if not then a little research on the Web will show you the differences.

Like you and most people my first inclination was surgery, but I do think this is usually an irrational, emotional first reaction. If you take a step back and look at all the options in a rational way then it may be that surgery is the best option but it may be that another treatment is better. Personally I think cutting people open with a knife and expecting to do much good is a long shot. Having said that if the cancer is T2 then surgery will probably remove all of it and you will be cured, but once you are talking T3 you need to be trying to get those cancer cells which may be just beyond the prostate.

I know HT has not been mentioned to you yet, but I suspect if you start talking with the medics about the brachy options then HT and EBRT will get mentioned as combining all these together seems to have the best chance of success. 

Surgery will take a while to recover from, but HDR boost, will involve about four weeks of going to the hospital for EBRT, and may involve two years of HT which is not dreadful, but isn't great. So the surgery begins to sound like the quicker option.

There is the risk of the radiation causing cancer years down the line and if your in your 50s you have more years ahead of you than if you're in your 60s. 

My life expectancy before I was diagnosed with PC was 85, now if you put my details in to nomogram, even though I think my treatment is successful my life expectancy is 70. I'm hoping to beat that, but I do know I will die one day. So I now live a more hedonistic and adventurous life to try and increase my chances of not dying from cancer. 

As far as treatment is concerned I like to think that I would have made the rational choice rather than the emotional choice, but I don't know whether I would have, fortunately the medics made the decision for me. 

 

Edited by moderator 18 Jan 2021 at 11:46  | Reason: Not specified

Dave

User
Posted 23 Jan 2021 at 13:45

Hi Philip. I can't advice you about your choice of treatment but I can say I've spent to good part of a year making my decision. You can see from my profile that I have a similar set of diagnostics as you and I waited for 15 months on active surveillance before biting the bullet. I'm 100% pleased I opted for Brachytherapy. It's only been just over a week since my op but I've had no side effects nor pain (a little burning when peeing for a couple of days). I'm 69 and my take is that even if I get 5 years PC free, hopefully by that time there will be many more salvage treatment choices available. But at the moment I'm holding on to the data which argues convincingly that long term success of BT is slightly better that RT.

User
Posted 25 Jan 2021 at 00:37

Study results for treatment can be represented in the form of an elipse, shown here fot Low, Intermediate and High risk so a generalization can be made that the results are better or worse than others for a particular treatment. However, these treatment results tend to overlap in part, so an individual may benefit more by having a treatment that is generally less successful. Also, side effects don't seem to have been taken into account and these could be a very important aspect for some men when decision making. https://prostatecancerfree.org/compare-prostate-cancer-treatments/

 

Edited by member 25 Jan 2021 at 00:38  | Reason: to highlight link

Barry
User
Posted 14 Jan 2021 at 01:38

You can make a case for or against any form of treatment. There are many factors that should be taken into account when deciding which of the treatment options a man is offered to plump for. In some cases the situation is make easier when you are told your individual situation means you are more suited to one form of treatment over another but this is not always the case. Sometimes both your urologist and oncologist (who tend to favour their own area of expertise) will say surgery or radiation would be suitable. You need to fully understand what is involved both in the treatment and potential side effects both short and long term although these can vary.

I suggest you download or obtain a copy of the 'Tool Kit' which is informative and gives an impartial view on Prostate Cancer (PCa) and effects of treatments. Consider this and then make your choice. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Barry
User
Posted 14 Jan 2021 at 10:53

Hi Philip,

Good to see your post and it reminded me of the confusion I went through about a year deciding which route to take. You've come to the right place as there's some very helpful people here. I've just posted a 6 week update on my EBRT/LDR experiences. 

One research item helped me a lot was the following link for a study which compared life expectancy outcomes of 12 types of treatment for Low, Intermediate and High risk patients. It seemed to be pretty thorough and mirrored another study that I paid for. EBRT/Seeds seemed to have the edge over surgery. Of course there's also the Quality of Life issues to consider which give another dimension to the data.

https://www.prostatebrachytherapy.org.uk/2016-presentations/A-Law-170516.pdf

After reviewing this document I then asked the exact question that you posted. 

Hope that helps...

Vince

 

User
Posted 16 Jan 2021 at 00:12

Very smart Post!

Since I had a RP surgery operation I asked my self why did I have to go ahead with surgery options?

 

I was perfectly fine with toilet visits sometimes day time I was ok not to visit toilets 4-5 hours.

Relationship were great in that department. 

No pains.

Nothing all I said to my GP was sometimes when i go to bathroom i feel i dont fully empty my bladder...yes i had the operation over a year ago and still i get same feelings for not to empty bladder. 

 

So if it was going to be like this than why did they force me to have a surgery?

After all those times I can't even lift up for 4 -5minutes  a little child.

Bedroom life is over 

Pains all over my tummy, abdominal area

Kidney

Liver 

Gallstones 

Left testicle pains always there 

Partner left ,became unemployed 

My life has changed because of the surgery operation but if I did not go ahead with it than life would have been great.

 

User
Posted 19 Jan 2021 at 03:37

Rikki,

                                                                                                                                                                                       "So if it was going to be like this than why did they force me to have a surgery".

I am very sorry surgery has not worked better for you and has brought about other unwanted situations.  You are bound to wonder whether you followed the best course.  

The potential downsides should have been explained to you or you should have been given a leaflet explaining these prior to the operation and you should have signed a consent form also.  I am sure you were not 'forced' to have surgery for PCa but freely decided to do so.

Barry
User
Posted 24 Jan 2021 at 11:53
Wow. Rikki! There are so many things you didn't know. Why didn't you do tons of research beforehand, which would have created a lot of questions for you to ask, including the above, and get answers? There is a wealth of information out there, including useful sites like this one.

I can't imagine why anybody would want to "frame you up". And did somebody really "force you" to have surgery? Did they frogmarch you? (:

Your post suggests a lot of anger which may have been spared if you had done your homework before being "forced". However, I sincerely hope you are coming to terms with your situation and seeking counselling if you are suffering anger symptoms.

User
Posted 30 Jan 2021 at 16:48
Really glad you're settled on your way forward Philip. Hope it goes perfectly.
User
Posted 30 Jan 2021 at 17:04

Hi Philip,

Sending best wishes for your upcoming surgery, I mentioned in an early post that I had surgery on the 25th November 2020.

I have made great progress no problems with the continence, but still do the kegel exercises which I started as soon has I made the decision to have surgery and like you had no problems prior but realised you need to strengthen the muscles there pre and post op for life.

I can honestly say it was not a bigger deal as I thought it would be, a bit of advice stop the pain medication ASAP it causes constipation along with the anathesectic, the only discomfort I had and I stopped them after 2 days paracetamol are fine, take the laxatives they prescribe whatever you do. 

The only other bugbear is the Foley catheter, but it is a necessary nuisance, just keep everything clean sleeping is awkward but you get use to it, change to a night bag surprising how much you pass.

Regards

Daily

User
Posted 30 Jan 2021 at 18:54

Hi Philip, 

Glad you have made a choice. You started a really good thread with that question and we got some well balanced arguments.

Dave

User
Posted 08 Feb 2021 at 00:28

T2c is sometimes on the intermediate risk side, and sometimes on the high risk side, depending which paper you read. The "risk" is that of there being micromets outside the prostate which don't show up on a scan, and later cause recurrence.

I might guess that if you've had it long enough to be on both sides, it's also more likely to be outside. However, prostate cancer is often multi-focal (starting in several places separately), so this may not always be the reason it's on both sides.

User
Posted 08 Feb 2021 at 12:19

Was his upgraded as a result of a scan?

Good luck with the op!

User
Posted 12 May 2021 at 13:16

Update

Nerve sparing Open RP - 1/3/21 In Solihull 

TWOC - 8/3/21

Follow up review with surgeon - 21/3/21, Histology showed clear surgical margins. No evidence of spread outside of the prostate, so the early signs are promising.

12 week PSA test in a couple of weeks !

 

It’s just over 10 weeks since surgery, recovery going very well. The wound is healing nicely, easily able to walk about 2-3 miles a day after about 4 weeks, very tired at first but loads better now. Up to about 5-6 miles now in one go but not every day. Lots of weird aches and pains, and a couple of really painful areas (not all the time only when i bend down) a couple of inches either side of my big scar. No infection so I'm guessing it's just muscle/nerves repairing and will hopefully get better.

I was dry pretty much the day after the catheter came out. Had one little accident but that was 100% my fault as i was doing something i was warned not to do (bending, twisting and pushing all at the same time !!). Before the surgery I was way more concerned about the incontinence side of things , but thankfully that doesn’t seem to have caused me much of a problem. However (unsurprisingly I suppose) there is absolutely nothing there erection wise. Having never had a problem before the surgery I was stupidly expecting at least something fairly soon after surgery. But after trawling this site for info I now realise I have unfortunately, vastly underestimated the issue. This side of the recovery it is starting to get me down a bit but hopefully things will improve with time. I'm on 5mg Tadalafil daily and getting to grips with Somaerect vacuum device. After 3 weeks of steady use I'm back to almost full size so it does work, but its brutal and you certainly know you have done a work-out when you're finished, and there is no way one of those rings is going anywhere near it, the high tension ultra rings look like they would cut it clean off!!! Can't see me ever using it for anything other than the rehabilition side of things.

No stirrings from the Tadalafil so might try a Viagra as well to see if that has any impact.

So bloods in a couple of weeks and hopefully a good result so i can reduce my stress level a bit. I have blood cancer as well (under control and responding very well to some insanely expensive treatment) and the covid thing is a real risk for me so I'm fit to burst with stress at the moment, having one less thing to worry about can only be a good thing.

 

All the best

 

Finally :-

A message to all those 'younger men' with no previous ed issues reading this, who are currently doing what i did. The ED side effects are a real problem and WILL more than likely (unless you are very lucky) take many months to resolve themselves, maybe years. Do not underestimate it, like i did. Prepare yourself for the real possibility that he won't be working for a while. I didn't and I'm sure that's part of the reason i feel so down now.

User
Posted 12 May 2021 at 20:41

Hi Philip, 

You're making great progress. 

Try not to let the ED part of your recovery get you down, it can take months, but time passes.

Like you, I underestimated the issue, and the effect it would have on my state of mind. It gave me a miserable two or three months, but things started to really improve at around 6 months. 

One other thing.. I tried sildenafil (viagra) as well as tadalafil expecting a miracle, only to feel hugely disappointed when it didn't work, probably because it was too soon. Months later, however, I can say it does work(ish) for me. 

Hope this helps and good luck. 

Kev.

Edited by member 12 May 2021 at 20:43  | Reason: Typo

User
Posted 20 Jun 2022 at 16:28
Update

16 months on from open RP - Still here, has it gone - more than likely, will it ever come back – who knows !

PSA at 3 months 0.014

PSA at 6 months 0.012

PSA at 12 months 0.013

So within the realms of testing tolerance still all ok – a ‘less than’ symbol in front would be even better but I’m kind of ok with it.

Waterworks wise I was continent almost the day after the catheter came out – the odd dribble here and there after I’ve been for a wee which can be annoying but not the end of the the world, but on a normal day to day basis I have full control.

Erection wise still nothing of any consequence to speak of – using the vacuum device 2/3 times a week and on 5mg of tadalafil daily – these tablets make a small improvement and when coupled with the infamous durex ring I can muster a rather un-impressive semi - but the tablets make my legs ache really badly so I do have breaks from them and when I don’t take them there’s nothing there at all.

Tried a full dose of tadalafil - no further improvement and a full dose of sidenafil made my head feel like it was going to explode so haven’t bothered again.

I frequently question my decision to go for the RP – as physiologically the loss of erections is massive for me at the moment – Its having a much bigger impact on me mentally than I ever thought it would - but at the time of having to make the choice I didn’t ever think it would be an issue for me as I was only 51, had never suffered with ED before at all plus the surgeons didn’t really see it as being that much of a problem - the emphasis was much more on the possible incontinence side effects.

Would Brachytherapy have been any different - I don’t know, and never will? Erection wise things would probably be better now but who knows what it would be like in the future? Plus could I cope with the knowledge that ‘it’ was still inside me – when the engineer in me knows the best thing to do with a bit that’s gone wrong is get rid of it as soon as possible. Again I don’t know.

So if your reading this thread looking for some guidance/advice, I think the only thing that I can say for sure is whichever way you go it’s going to be a lot tougher than you imagine and things are unlikely to ever be the same ever again.

As a side note – I’m kind of wishing the surgeons had been a little more realistic with me up front – not sure it would have changed my decision but it might have levelled my expectations of my ED recovery - if it’s really going to take 2 years plus to see any improvements , then just says so. All this 3 months then you should start to see something is in my mind (and lots of other people I have spoken to and read posts from) not really being honest – yes some lucky guys may see improvements early on but in my research the vast majority don’t.

Phil

User
Posted 20 Jun 2022 at 23:10

Originally Posted by: Online Community Member
I am meeting my uro next week one of the main items to discuss is a prosthesis. I know it is another operation but I can't see how injections and pumps are going to work long term.

 

Give them a chance first - if Caverject or Invicorp injections work for you, they are amazing! The pump is important to maintaining penile health in the short & medium term as the wait for a penile implant could be years. 

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

User
Posted 21 Jun 2022 at 14:15
The injections don't need nerves to be effective
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2022 at 03:23

I love your posts Dave, they combine information with experience and humour but delivered with great humility. 

It's interesting because now that I have commenced hormone treatment, I thought why didn't I just cut it out. It has dawned on me that despite the commonly held view that "you don't die from you die with prostate cancer", many die with. I have faced up to my situation, which is that I am buying time, not a get out of jail card. Hopefully radiotherapy and HT will buy me a decade but having looked at the tumours size and anterior lesions of 1.8cm, although it is supposedly N0M0, I have no doubt that time shall prove otherwise.

Gabriel 

 

 

User
Posted 19 Aug 2024 at 10:37

I think that a wide range of factors influence men’s choices on this.

  1. Historically, prostatectomy achieved better cure rates than radiotherapy, although I believe that there is not much in it nowadays.

  2.  

  3. Radiotherapy was also associated with some nasty side effects especially because of the potential for damage through burns to nearby organs. Again, radiotherapy options have become more sophisticated and accurate so this is apparently less of a problem now. In fact, for many men, the side effects of radiotherapy may now generally be less severe than those associated with prostatectomy. ( This is a major factor underlying Dr Scholz’s clear preference for radiotherapy).

  4.  

  5. Radiotherapy has also been associated with a potential for long term damage, e.g. a small increased risk of other cancers.. The extra risk is probably small, but this can be an issue for some younger men.

  6.  

  7. Radiotherapy is also often accompanied by hormone therapy which is dreaded by many. I remember reading that this was a crucial factor in steering Stephen Fry towards prostatectomy.

  8.  

  9. There can also be a tendency for us to think along the lines that this is cancer and, as with any cancer,” I want it out as soon as possible.”

  10.  

  11. In some cases men may be put off by the thought of having to travel to hospital on a daily basis over a prolonged period – this was definitely a factor for me in the middle of the covid era.

  12.  

  13. Partly because of the above, the field has tended to be dominated by surgeons and they are naturally inclined to favour their own field, even at the expense of maybe sometimes being over-optimistic. More generally, there is a danger that we can be swayed by the persuasiveness of the experts that we talk to and so we may be subject to their biases.

  14.  

  15. There are probably various other factors which come into play and each of us ultimately have to make our own judgement of the various trade-offs involved. That is if we have a choice which is not always the case. For example, prostatectomy has not always been offered to older men or those who have other health issues, or sometimes to those with locally advanced cancer.

Edited by member 19 Aug 2024 at 10:38  | Reason: Not specified

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User
Posted 13 Jan 2021 at 23:18

Hi Philip,

The main reason why people of your age might not consider radiotherapy if there's another option is the risk of it causing another cancer in later life. For someone in their 60's or 70's, they probably won't live long enough for that to be an issue, but someone in their early 50's might. I don't know the risk off-hand, but that's something you might want to look at (I think it's quite low).

Having said that, I did have HDR brachytherapy and external beam radiotherapy (called HDR Boost) at age 57, but in my case, prostatectomy stood a good chance of failing, and would not have been nerve sparing, whereas so far the HDR Boost hasn't impacted erectile function (it still could, as a late onset side effect).

User
Posted 14 Jan 2021 at 00:19
I was told that any form of radiotherapy was risky for me because I have (albeit mild) colitis. Given that side effects tend to hit the bowel region, I was told there was a considerable risk of life changing side effects. So there's a good reason for surgery.

TBH I would probably have chosen surgery anyway - I am more of a let's just get rid of it person and I already had surgery for a melanoma including lymph node removal 2 years before; I knew I recovered well.

Surgery was last March when I was 68. 1 day in hospital. Catheter in for 10 days. Started doing some work as soon as the catheter was out, but I can work from home, so possibly not typical. Was working full time by 4 weeks, possibly overdid it a bit. Physical recovery not a problem, but I could only have nerve-sparing one side and still have ED.

I'm not sure that those on here are typical of post-surgery chances; those with longer journeys probably stick around longer in general.

User
Posted 14 Jan 2021 at 00:30

Hi Phillip,

A very well thought out and reasoned post. Choice of treatment can be difficult. I was lucky in that the MDT gave me no choice; my cancer was T3, surgery would probably not have got all of it so I had the same treatment as ANDY62. At my hospital they didn't give it the fancy name "HDR boost", they just called it HDR Brachy followed by ebrt, plus HT. I was 53 at diagnosis so like you relatively young.

I don't know if you are aware that brachy comes in two varieties HDR and LDR, if not then a little research on the Web will show you the differences.

Like you and most people my first inclination was surgery, but I do think this is usually an irrational, emotional first reaction. If you take a step back and look at all the options in a rational way then it may be that surgery is the best option but it may be that another treatment is better. Personally I think cutting people open with a knife and expecting to do much good is a long shot. Having said that if the cancer is T2 then surgery will probably remove all of it and you will be cured, but once you are talking T3 you need to be trying to get those cancer cells which may be just beyond the prostate.

I know HT has not been mentioned to you yet, but I suspect if you start talking with the medics about the brachy options then HT and EBRT will get mentioned as combining all these together seems to have the best chance of success. 

Surgery will take a while to recover from, but HDR boost, will involve about four weeks of going to the hospital for EBRT, and may involve two years of HT which is not dreadful, but isn't great. So the surgery begins to sound like the quicker option.

There is the risk of the radiation causing cancer years down the line and if your in your 50s you have more years ahead of you than if you're in your 60s. 

My life expectancy before I was diagnosed with PC was 85, now if you put my details in to nomogram, even though I think my treatment is successful my life expectancy is 70. I'm hoping to beat that, but I do know I will die one day. So I now live a more hedonistic and adventurous life to try and increase my chances of not dying from cancer. 

As far as treatment is concerned I like to think that I would have made the rational choice rather than the emotional choice, but I don't know whether I would have, fortunately the medics made the decision for me. 

 

Edited by moderator 18 Jan 2021 at 11:46  | Reason: Not specified

Dave

User
Posted 14 Jan 2021 at 01:38

You can make a case for or against any form of treatment. There are many factors that should be taken into account when deciding which of the treatment options a man is offered to plump for. In some cases the situation is make easier when you are told your individual situation means you are more suited to one form of treatment over another but this is not always the case. Sometimes both your urologist and oncologist (who tend to favour their own area of expertise) will say surgery or radiation would be suitable. You need to fully understand what is involved both in the treatment and potential side effects both short and long term although these can vary.

I suggest you download or obtain a copy of the 'Tool Kit' which is informative and gives an impartial view on Prostate Cancer (PCa) and effects of treatments. Consider this and then make your choice. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

Barry
User
Posted 14 Jan 2021 at 01:38
Good sensible answers above. In our case, brachy was first choice but at that time, in our area, brachy wasn't available to young men (John was 50 at diagnosis) so he had surgery instead. And yes, it failed so he ended up with salvage RT / HT a couple of years later. Now I understand that our NHS Trust does offer brachy to young men.

The increased risk of bowel cancer is quite small - something like 8% rather than the 6% risk to the general male population. I believe that when J was diagnosed, they thought the bowel cancer risk was a lot higher.

Why do some men go for surgery rather than brachy ... well as stated above, most men are recommended to have hormone treatment with the brachy. You might be right that you are being offered brachy as a mono-therapy but with a T3 I would check that as the research suggests it is less likely to be successful. HT is not to be embarked upon lightly - but then nor are any of the other treatments. Some men can't have brachy because they already have urinary flow issues - or they have to have a small op to resolve that before they start.

Just a word of warning about the private health route - clarify first what support you will and won't have access to afterwards. We self-financed private care so that John could have the surgeon who was already caring for my dad, father-in-law and mother-in-law - what we didn't realise was that this meant we had no access to the specialist urology nurse, no support from district nursing team, we had to fight for a referral to the NHS ED clinic and also for ED treatment on the NHS. We also had to pay for every follow up PSA test for a few years until the GP could be persuaded to take over responsibility.

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

User
Posted 14 Jan 2021 at 10:53

Hi Philip,

Good to see your post and it reminded me of the confusion I went through about a year deciding which route to take. You've come to the right place as there's some very helpful people here. I've just posted a 6 week update on my EBRT/LDR experiences. 

One research item helped me a lot was the following link for a study which compared life expectancy outcomes of 12 types of treatment for Low, Intermediate and High risk patients. It seemed to be pretty thorough and mirrored another study that I paid for. EBRT/Seeds seemed to have the edge over surgery. Of course there's also the Quality of Life issues to consider which give another dimension to the data.

https://www.prostatebrachytherapy.org.uk/2016-presentations/A-Law-170516.pdf

After reviewing this document I then asked the exact question that you posted. 

Hope that helps...

Vince

 

User
Posted 14 Jan 2021 at 18:53

Cynical answer: suspected prostate cancer is usually referred to urology departments to assess and arrange diagnostic tests. Urologists are the surgeons, so at the point of deciding treatment their approach gets top billing.

(I hope they aren't necessarily psychopaths as suggested above though!)

But other issues might rule out brachytherapy. I thought it looked an attractive way forward, but was deterred because I would have to travel 40 miles to the nearest centre offering it, and there was a high chance I would be found unsuitable because of the size my prostate had reached.

User
Posted 14 Jan 2021 at 19:12

In some cases , surgery is the only option, I was offered either surgery or RT, I chose surgery, on the understanding that after RT surgery was a bit more of an issue, turns out that my final results were it was my only option, had I not had surgery I would probably not make old age, which I would quite like to (other health issues excepted). But I do appreciate it' snot for everyone!

User
Posted 15 Jan 2021 at 00:55

Bill, I'm curious what cases you're thinking of where surgery is the only option?

The only one I can think of is when you've already had pelvic radiotherapy for another cancer. Even then,  brachytherapy might be usable in some cases.

User
Posted 16 Jan 2021 at 00:12

Very smart Post!

Since I had a RP surgery operation I asked my self why did I have to go ahead with surgery options?

 

I was perfectly fine with toilet visits sometimes day time I was ok not to visit toilets 4-5 hours.

Relationship were great in that department. 

No pains.

Nothing all I said to my GP was sometimes when i go to bathroom i feel i dont fully empty my bladder...yes i had the operation over a year ago and still i get same feelings for not to empty bladder. 

 

So if it was going to be like this than why did they force me to have a surgery?

After all those times I can't even lift up for 4 -5minutes  a little child.

Bedroom life is over 

Pains all over my tummy, abdominal area

Kidney

Liver 

Gallstones 

Left testicle pains always there 

Partner left ,became unemployed 

My life has changed because of the surgery operation but if I did not go ahead with it than life would have been great.

 

User
Posted 16 Jan 2021 at 11:44

Because it's 'horses for courses'. All treatments have their pros and cons - there is no magic bullet. To me, it's about selecting the lesser of a number of evils in relation one's own particular circumstances. This can be affected by various factors such as attitude to incontinence, ED, one's age, lifestyle, marriage status, logistical issues etc etc.

You have to understand that if you are happy with the choice after researching the options thoroughly, then that's all that matters - for you (although I am dubious that you have made your decision after such a short time - it took me three weeks!). And even when you have decided on a particular course of treatment, you don't have a crystal ball, do you?, as to how things will go for you. There are good stories and bad stories for all treatments.

Everybody's different, thank God!

Edited by member 16 Jan 2021 at 16:45  | Reason: Not specified

User
Posted 16 Jan 2021 at 20:04
It took me 20 seconds, but then I'd researched a lot beforehand and the choice was fairly stark.

I think how long it takes is as variable as everything else; some of us have little choice.

User
Posted 16 Jan 2021 at 20:16
I took the prostatectomy option myself after being told that it gave the best chance to knock localised cancer caught early on the head, and be done with it. If the cancer's just at the point of breaking out of the prostate it must seem like a bit of a coin toss to a lot of people.

As my mother had bladder cancer around my age now (54) I was keen to avoid anything involving radioactivity, and trusted the RP side effects would be fine for me. It’s all a question of tiny, unknowable probabilities though...

My wife's a bigger worrier even than me, so we thought the PSA tests would be less stressful for us if my risk of recurrence is decreasing a little year by year, rather than possibly rising (howsoever slightly) when I'm 70 +

Partly it's a personality thing, I guess, all things being equal. Reducing our reasoning to complete generalisations:-

> Prostatectomy - suffer a bit more now maybe, feel pretty confident that you're in the clear if you make it to 5 and 10 years of clear PSA tests

> Brachy - suffer less now maybe, have a bit more of a risk of secondary cancers many years later perhaps

Btw I had the impression that I would be burning my bridges if I went for brachytherapy (as you somewhat suggest, and vice versa) - that increased risk of worse side effects meant that they wouldn’t do a prostatectomy as salvaging treatment if radiotherapy / brachy didn’t succeed. Is that right? No idea where I read that - is that ever true in the UK?

It's a big choice, isn't it? All you can do is learn as much as you can about your options, discuss the pros and cons with your family and never regret your decision. I doubt you're missing any obvious points! Good luck

RP 07.03.20, PSA 4.1, Gleason 3+4=7 

User
Posted 16 Jan 2021 at 20:40

"> Prostatectomy - suffer a bit more now maybe, feel pretty confident that you're in the clear if you make it to 5 and 10 years of clear PSA tests

> Brachy - suffer less now maybe, have a bit more of a risk of secondary cancers many years later perhaps"

Just to give that some balance, my dad had undetectable PSA for 13 years - he even got a letter from the NHS at the 10 year mark telling him that he was in full remission - but it still came back.

The risk of RT or brachy causing a new cancer further down the line is tiny

Edited by member 16 Jan 2021 at 20:57  | Reason: Not specified

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

User
Posted 16 Jan 2021 at 20:54

"that increased risk of worse side effects meant that they wouldn’t do a prostatectomy as salvaging treatment if radiotherapy / brachy didn’t succeed. Is that right? No idea where I read that - is that ever true in the UK?"

It is true - an irradiated prostate becomes gloopy or sticky so it is more difficult to remove cleanly - and nerve sparing is not possible so ED is more or less guaranteed and incontinence is more likely. There are just a few urologists that will attempt the op in the right cases and we have a couple of members who have gone down this route.

However, there is a whole myth that has been built around the idea that 'at least you can have RT after surgery but not surgery after RT'. In fact, if the first treatment fails, the statistical likelihood of salvage treatment being successful is quite low, whichever order you do them. It makes sense to choose the treatment that is most likely to be successful rather than the one that can be followed up if it fails.

Edited by member 16 Jan 2021 at 20:56  | Reason: Not specified

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

User
Posted 18 Jan 2021 at 14:33

Originally Posted by: Online Community Member
Why on earth would anyone put themselves through the surgery????

Hi,

That's a great challenging post that brought out a good response.  Most people just ask which is best.  The question you pose above is could be answered by saying:

With surgery you go to the hospital are put to sleep and wake up two hours later job done and in only 2 months you know if it's done the job.   Then you join those who hope their psa test comes in good every few months.  Whereas with RT of any kind you don't know for a year or more and have had months of hormones and with full RT 30 daily sessions at the hospital. 

Brachytherapy sounds the most attractive of the treatments if taken with minimal hormone treatment.  I might be wrong but it also seems the weakest and most likely to need further work unless chosen for the lowest risk cases.

I might also be wrong in saying that a T3 is taking a chance having Brachytherapy.  Full RT will cover a wide area beyond the prostate.

It's always a tough call and some reflect if it was the right one.   Although I never had any doubt about choosing surgery.

Hope all goes well, Peter

User
Posted 19 Jan 2021 at 03:37

Rikki,

                                                                                                                                                                                       "So if it was going to be like this than why did they force me to have a surgery".

I am very sorry surgery has not worked better for you and has brought about other unwanted situations.  You are bound to wonder whether you followed the best course.  

The potential downsides should have been explained to you or you should have been given a leaflet explaining these prior to the operation and you should have signed a consent form also.  I am sure you were not 'forced' to have surgery for PCa but freely decided to do so.

Barry
User
Posted 22 Jan 2021 at 15:20

Hi Phillip,

It's a difficult choice, but if you have been given options that's good some men don't have the diagnosis to choose.

There are no easy options which one you choose, there are no right or wrong decisions, the decision you make is right for you only time will tell.

I was on Active surveillance for 3years but in November 2020 I had a prostatectomy during the course of my active surveillance I studied all the different treatments in great depth and sought advice from others, my surgery went fantastic a full nerve sparing was possible, I am now fully continent had very little problems after catheter removal, ED will take a little longer spoke with my surgeon this morning and he has referred me to a ED Clinc even though I'm not that far off.

I had no problem with recovery I'm retired but after 2 weeks I could easily have returned to work I could drive no problem everything now healed.

I have no regrets whatsoever and I know if further treatment was ever required then I could have radiotherapy, but if that is the first choice then surgery becomes less of an option due to the changes after radiotherapy alters the tissues.

Good luck it's a personal choice go with what you think is best for you don't rush it.

User
Posted 23 Jan 2021 at 13:45

Hi Philip. I can't advice you about your choice of treatment but I can say I've spent to good part of a year making my decision. You can see from my profile that I have a similar set of diagnostics as you and I waited for 15 months on active surveillance before biting the bullet. I'm 100% pleased I opted for Brachytherapy. It's only been just over a week since my op but I've had no side effects nor pain (a little burning when peeing for a couple of days). I'm 69 and my take is that even if I get 5 years PC free, hopefully by that time there will be many more salvage treatment choices available. But at the moment I'm holding on to the data which argues convincingly that long term success of BT is slightly better that RT.

User
Posted 24 Jan 2021 at 01:00

Hi Barry 

Thanks for your kind Comment 

Yes sadly I was forced to have a surgery operation..and it took from beginning to end only 6 months maybe less.

 

NO ! A big NO ! 

hands on they did not give any leaflets about risks of The surgery. 

Only the risks I was told about ED.thats all.

They did not mention about risks of Catheter users catching infections. 

They did not mention about adhesions 

They did not mention about long term effects of not to lift up heavy items.

They did not mention about any kind of internal pains.

 

There are so much to talk about but I'm right now in so much anger this time of the night.

 

I was framed up that's all I can say

My ex girlfriend  to be undercover she played a big role in it!

User
Posted 24 Jan 2021 at 11:53
Wow. Rikki! There are so many things you didn't know. Why didn't you do tons of research beforehand, which would have created a lot of questions for you to ask, including the above, and get answers? There is a wealth of information out there, including useful sites like this one.

I can't imagine why anybody would want to "frame you up". And did somebody really "force you" to have surgery? Did they frogmarch you? (:

Your post suggests a lot of anger which may have been spared if you had done your homework before being "forced". However, I sincerely hope you are coming to terms with your situation and seeking counselling if you are suffering anger symptoms.

User
Posted 24 Jan 2021 at 12:18

Thanks for your kind comments 

 

Let me explain and add more about my case please. 

 

I have inconsiderate neighbours nextdoors and below my apartment flat. I could hear noises where I shouldn't hear ,my nextdoor neighbour he plays music 7 days a week from 8 am until 8pm sometimes later than that.

I Walker into a police station 4 years ago I asked them to help me stop me being a criminal person. 

I waited for my nextdoor man to come put days after day but he did not so I could talk to him civil ways  or none civil ways.

He just says he has rights to play music's even on Christmas days,new years eve new years days

 

I'm a social house tenant  I'm unemployed I have got physical disabilities had surgery operation for my leg .

Have contacted with Housing associations but received no help.i even attended their open days to raise my issues guess what they offered me a flat but where? Steveange!! Miles away from London 

All my life I lived in London dont know anyone from stevenage why should I relocate there?

Anyway Before I attended to that meeting at housing associations I had maybe 10 times meetings regarding the noises with Housing area manager.I invited him to my place he came around and he heard still nothing had been done.

I contacted with a local MP still nothing done.

A friend of mine who works for CAB citizen advise bureau he wrote them letters,Emails but no actions taken.

I'm not a psychopath with anger butcher people for nothing, so I taken calming tablets such as Amitriptyline and aroprazol with their help I sleep longer and keeps me calm...so why I'm telling you about all these.

 

You mentioned that why I did not do my research?

Well my mind was everywhere I cannot think healthy ways.even now days I got to watch my phones calendar to know what days I'm having .

Those medicines made me not to think healthy way. And stupidly I took the decision and go ahead with that Surgery operation. 

Ohhh by the way the nurse at the hospital whom told me that I have a cancer she also said IM your nurse from now on if you wish to contact with me here is my numbers  blah blah blah blah yes I contacted with her but couldn't reach her at all left messages many times than had recieved nothing heard nothing. 

My ex girlfriend to be B.....h is a civil servant so she destroyed my life .she was even on nextdoors side as well she was kinda defending them

Also she was keep saying ohhh you got to go ahead with surgery for me.for us blah blah.

Anyway ...she is history now

 

Hope you can understand my feelings mate.

But when this (NHS) people arranges pre operation MEETINGs 

I want to go and infrom about the untold stories to those people whom will be attending the meetings. 

I dont want them to be disappointed like me.

User
Posted 24 Jan 2021 at 14:27

Hi all, we seem to be getting off topic can we keep phil's thread to comparing surgery to brachy. Rikki's comments about side effects of surgery are very relevant to this, but issues about consent probably belong on another thread. 

Dave

User
Posted 24 Jan 2021 at 20:34

When I was first diagnosed Jan 2018 (age 62) it was with a "low risk" Gleason 6, and I was put on AS.  When they found a new "high risk" Gleason 8 tumour in Oct 2019 (age 64) and clinical intervention became necessary my first thought was go for surgery.  I think it's a pretty classic response, get rid of prostate get rid of PCa!  Then the MDT advised me against it.  They wanted to remove lymph nodes too and they thought, given my physical state and lifestyle, that the potentially five hour op under GA would carry too high a morbidity risk.

So I settled for EBRT, which finished last August.  Had some pretty unpleasant side effects since, some of which have cleared up now but some such as,nocturia (average four times a night which leaves me wasted the next day), radiation cystitis and piles, are still giving me a lot of pain and grief.

Part of me still wishes I'd had the thing whipped out, especially as I have a non-secreting tumour so the regular follow up PSA tests are not a reliable indicator as to whether the cancer is still there and growing.  That said, I met a guy in the waiting room while having my EBRT.  He'd had his prostate surgically removed four years previous.  Told me he thought he was "cured".  Then four years on a routine blood test showed his PSA had rocketed.  So he was back in for EBRT.

Not sure what point I'm making here to be honest, other than no option offers a 100% certain outcome, and all options can and will have a knock-on effect on your life.

Edited by member 24 Jan 2021 at 20:38  | Reason: Not specified

User
Posted 25 Jan 2021 at 00:37

Study results for treatment can be represented in the form of an elipse, shown here fot Low, Intermediate and High risk so a generalization can be made that the results are better or worse than others for a particular treatment. However, these treatment results tend to overlap in part, so an individual may benefit more by having a treatment that is generally less successful. Also, side effects don't seem to have been taken into account and these could be a very important aspect for some men when decision making. https://prostatecancerfree.org/compare-prostate-cancer-treatments/

 

Edited by member 25 Jan 2021 at 00:38  | Reason: to highlight link

Barry
User
Posted 25 Jan 2021 at 13:43

That's an interesting piece Barry.   My Gleason was 8 which puts me in high risk even though the other 2 measures are low risk.

I compared RP with RT on the ellipses.   RP looked worse but I'm not so sure it is when looking at the individual samples.    It looks like there are more RP specimens especially in the later years.  That might be because of the type of patient, the state of the technology, or that RP patients last longer and that might be because of age, etc.

Should we take the ellipses as a genuine summary or just a convenience?  It needs more looking at.  There is a button for looking at the study and I might get to that.  Good piece.

Regards
Peter

User
Posted 27 Jan 2021 at 15:15

I looked into all treatments for a long time, and nearly had Brachytherapy. In the end I went for surgery. The Brachytherapist I spoke to, plus the reading I did, suggested that Brachy was best suited to those with scores slightly lower than mine and with the problem not too close to the prostate edge. (I started within their 'range' but my score was, as is typical, rising). I'd ruled out RT because I already had IBS. I think they were still prepared to do Brachy but I felt that already being outside the ideal profile for it, it was a risk I didn't fancy.

User
Posted 30 Jan 2021 at 16:30

A brief update for you all - Decided to go for the surgery option. Being totally honest with you and myself I never really liked the idea radiotherapy, regardless of how simple! It was all made out to be. The whole concept it has never sat well with me and being an engineer by profession the thought of just getting rid of something that’s gone wrong as opposed to trying to mend it seems a much more sensible idea, rightly or wrongly. Given my age (51) and the total lack  of any previous problems with ED and my waterworks I’m hoping that with time and a bit of good luck things should go well.  I’m in a very fortunate position as I have private health cover through my wife’s work policy, so have been able to get things rolling very quickly. I have spoken to 2 surgeons about the operation, the first one in Manchester, got on very well with him and felt confident he and his team would do as good a job as they were able to , unfortunately he was unable to give me a definite date due the covid situation, he didn’t seem to think a short delay would impact the outcome but impatient me had already made his mind up so didn’t want to wait any longer than necessary. Info on here and some time on the net lead me to another in  Birmingham. I managed to get an appointment within the week and again I’m super impressed and super happy with the surgeon and clinic so far.  After looking at the scans and biopsy results he is confident he can spare both nerve bundles and has given me a high probability of being able to remove all of the tumour during the operation. I realise that surgeons are most definitely more Tigger than Eeyore but he’s done 3000 of them with a good degree of success, so I guess he knows what he’s talking about. The clinics before and aftercare also appears to be of a high standard and the operation will be at a Covid green/free hospital in Solihull so that’s hopefully one less thing to worry about. 

My first counselling session with a nurse specialist is in a couple of weeks, MDT review on the 9th , Pre op and covid swab the week after that then surgery on the 22nd of February, what a rollercoaster start of 2021 ! 

 

Edited by member 30 Jan 2021 at 20:47  | Reason: Spelling

User
Posted 30 Jan 2021 at 16:48
Really glad you're settled on your way forward Philip. Hope it goes perfectly.
User
Posted 30 Jan 2021 at 17:04

Hi Philip,

Sending best wishes for your upcoming surgery, I mentioned in an early post that I had surgery on the 25th November 2020.

I have made great progress no problems with the continence, but still do the kegel exercises which I started as soon has I made the decision to have surgery and like you had no problems prior but realised you need to strengthen the muscles there pre and post op for life.

I can honestly say it was not a bigger deal as I thought it would be, a bit of advice stop the pain medication ASAP it causes constipation along with the anathesectic, the only discomfort I had and I stopped them after 2 days paracetamol are fine, take the laxatives they prescribe whatever you do. 

The only other bugbear is the Foley catheter, but it is a necessary nuisance, just keep everything clean sleeping is awkward but you get use to it, change to a night bag surprising how much you pass.

Regards

Daily

User
Posted 30 Jan 2021 at 18:54

Hi Philip, 

Glad you have made a choice. You started a really good thread with that question and we got some well balanced arguments.

Dave

User
Posted 07 Feb 2021 at 22:31

The risk group classifications there rank T2c as high-risk: I've seen it ranked as intermediate risk (e.g. this 2015 paper), and was wondering what is it about the cancer being in both sides that makes it high-risk?

User
Posted 08 Feb 2021 at 00:28

T2c is sometimes on the intermediate risk side, and sometimes on the high risk side, depending which paper you read. The "risk" is that of there being micromets outside the prostate which don't show up on a scan, and later cause recurrence.

I might guess that if you've had it long enough to be on both sides, it's also more likely to be outside. However, prostate cancer is often multi-focal (starting in several places separately), so this may not always be the reason it's on both sides.

User
Posted 08 Feb 2021 at 12:05

Originally Posted by: Online Community Member

T2c is sometimes on the intermediate risk side, and sometimes on the high risk side, depending which paper you read. The "risk" is that of there being micromets outside the prostate which don't show up on a scan, and later cause recurrence.

 

The Predict Prostate tool also groups it with all T2 stages.

I'm GG2 - Gleason 7 (3+4) in two cores, 3+3 in one - nothing on DRE, 6.7 PSA, ok PSA density and doubling rate, contained (N0, M0), asymptomatic...it's just the T2c that seems to be much less favourable risk.

User
Posted 08 Feb 2021 at 12:14

update

Poor chap having his op on the same day as me has had his upgraded and now needs the full day. I have been booked in for the week after :-(

Dont suppose anther week will make any differnace to the outcome but its another week of stress I could have done without. Atleast my covid jab will be fully working by then

cheers

User
Posted 08 Feb 2021 at 12:19

Was his upgraded as a result of a scan?

Good luck with the op!

User
Posted 08 Feb 2021 at 13:59

sorry not sure. dont even know if its even prostate related. it was the hospital that re-scheduled not the surgeon.

 

User
Posted 12 May 2021 at 13:16

Update

Nerve sparing Open RP - 1/3/21 In Solihull 

TWOC - 8/3/21

Follow up review with surgeon - 21/3/21, Histology showed clear surgical margins. No evidence of spread outside of the prostate, so the early signs are promising.

12 week PSA test in a couple of weeks !

 

It’s just over 10 weeks since surgery, recovery going very well. The wound is healing nicely, easily able to walk about 2-3 miles a day after about 4 weeks, very tired at first but loads better now. Up to about 5-6 miles now in one go but not every day. Lots of weird aches and pains, and a couple of really painful areas (not all the time only when i bend down) a couple of inches either side of my big scar. No infection so I'm guessing it's just muscle/nerves repairing and will hopefully get better.

I was dry pretty much the day after the catheter came out. Had one little accident but that was 100% my fault as i was doing something i was warned not to do (bending, twisting and pushing all at the same time !!). Before the surgery I was way more concerned about the incontinence side of things , but thankfully that doesn’t seem to have caused me much of a problem. However (unsurprisingly I suppose) there is absolutely nothing there erection wise. Having never had a problem before the surgery I was stupidly expecting at least something fairly soon after surgery. But after trawling this site for info I now realise I have unfortunately, vastly underestimated the issue. This side of the recovery it is starting to get me down a bit but hopefully things will improve with time. I'm on 5mg Tadalafil daily and getting to grips with Somaerect vacuum device. After 3 weeks of steady use I'm back to almost full size so it does work, but its brutal and you certainly know you have done a work-out when you're finished, and there is no way one of those rings is going anywhere near it, the high tension ultra rings look like they would cut it clean off!!! Can't see me ever using it for anything other than the rehabilition side of things.

No stirrings from the Tadalafil so might try a Viagra as well to see if that has any impact.

So bloods in a couple of weeks and hopefully a good result so i can reduce my stress level a bit. I have blood cancer as well (under control and responding very well to some insanely expensive treatment) and the covid thing is a real risk for me so I'm fit to burst with stress at the moment, having one less thing to worry about can only be a good thing.

 

All the best

 

Finally :-

A message to all those 'younger men' with no previous ed issues reading this, who are currently doing what i did. The ED side effects are a real problem and WILL more than likely (unless you are very lucky) take many months to resolve themselves, maybe years. Do not underestimate it, like i did. Prepare yourself for the real possibility that he won't be working for a while. I didn't and I'm sure that's part of the reason i feel so down now.

User
Posted 12 May 2021 at 20:41

Hi Philip, 

You're making great progress. 

Try not to let the ED part of your recovery get you down, it can take months, but time passes.

Like you, I underestimated the issue, and the effect it would have on my state of mind. It gave me a miserable two or three months, but things started to really improve at around 6 months. 

One other thing.. I tried sildenafil (viagra) as well as tadalafil expecting a miracle, only to feel hugely disappointed when it didn't work, probably because it was too soon. Months later, however, I can say it does work(ish) for me. 

Hope this helps and good luck. 

Kev.

Edited by member 12 May 2021 at 20:43  | Reason: Typo

User
Posted 20 Jun 2022 at 16:28
Update

16 months on from open RP - Still here, has it gone - more than likely, will it ever come back – who knows !

PSA at 3 months 0.014

PSA at 6 months 0.012

PSA at 12 months 0.013

So within the realms of testing tolerance still all ok – a ‘less than’ symbol in front would be even better but I’m kind of ok with it.

Waterworks wise I was continent almost the day after the catheter came out – the odd dribble here and there after I’ve been for a wee which can be annoying but not the end of the the world, but on a normal day to day basis I have full control.

Erection wise still nothing of any consequence to speak of – using the vacuum device 2/3 times a week and on 5mg of tadalafil daily – these tablets make a small improvement and when coupled with the infamous durex ring I can muster a rather un-impressive semi - but the tablets make my legs ache really badly so I do have breaks from them and when I don’t take them there’s nothing there at all.

Tried a full dose of tadalafil - no further improvement and a full dose of sidenafil made my head feel like it was going to explode so haven’t bothered again.

I frequently question my decision to go for the RP – as physiologically the loss of erections is massive for me at the moment – Its having a much bigger impact on me mentally than I ever thought it would - but at the time of having to make the choice I didn’t ever think it would be an issue for me as I was only 51, had never suffered with ED before at all plus the surgeons didn’t really see it as being that much of a problem - the emphasis was much more on the possible incontinence side effects.

Would Brachytherapy have been any different - I don’t know, and never will? Erection wise things would probably be better now but who knows what it would be like in the future? Plus could I cope with the knowledge that ‘it’ was still inside me – when the engineer in me knows the best thing to do with a bit that’s gone wrong is get rid of it as soon as possible. Again I don’t know.

So if your reading this thread looking for some guidance/advice, I think the only thing that I can say for sure is whichever way you go it’s going to be a lot tougher than you imagine and things are unlikely to ever be the same ever again.

As a side note – I’m kind of wishing the surgeons had been a little more realistic with me up front – not sure it would have changed my decision but it might have levelled my expectations of my ED recovery - if it’s really going to take 2 years plus to see any improvements , then just says so. All this 3 months then you should start to see something is in my mind (and lots of other people I have spoken to and read posts from) not really being honest – yes some lucky guys may see improvements early on but in my research the vast majority don’t.

Phil

User
Posted 20 Jun 2022 at 17:03

Thanks for the update Phil. Those PSA results look very good. I had HDR brachy and HT. It has taken me a long while to get good erections avanafil works for me but I get heart burn, so I take an omazaprole (spelling?) as well. Trying to get the dose and the timing right is still a work in progress.

I always bias my posts away from surgery (I try and let people know I am biased though). My reason for the bias is to counteract the very strong pro surgery bias: from internal emotions, friends who know nothing (but have the same emotions) and surgeons who have personalities which cause over confidence in their own abilities.

Anyway, you are probably cured of cancer, you may find a way to get erections back even if it takes a lot of experimenting. Brachy may have gave you a worse experience. Keep posting.

Dave

User
Posted 20 Jun 2022 at 18:02

Originally Posted by: Online Community Member
Tried a full dose of tadalafil - no further improvement and a full dose of sidenafil made my head feel like it was going to explode so haven’t bothered again.

 

Try levitra - the head ache / leg ache issue seems to be less and it is the tablet of choice in our house

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

User
Posted 20 Jun 2022 at 21:17

Hi Phil, Nice honest update and hope your PSA stays low.  I am just 7 weeks post open RP which was non nerve sparing.  In my case I have no erections and they ain't coming back.  I agree with you about the ED.  The post surgery incontinence is frustrating (but mine is improving so not too concerned at this point), but ED at the age of 50 cuts deeper and is a bit depressing.

I am meeting my uro next week one of the main items to discuss is a prosthesis.  I know it is another operation but I can't see how injections and pumps are going to work long term.  Already my massively supportive wife is frustrated and I can't say I really blame her.

Take care 

User
Posted 20 Jun 2022 at 23:10

Originally Posted by: Online Community Member
I am meeting my uro next week one of the main items to discuss is a prosthesis. I know it is another operation but I can't see how injections and pumps are going to work long term.

 

Give them a chance first - if Caverject or Invicorp injections work for you, they are amazing! The pump is important to maintaining penile health in the short & medium term as the wait for a penile implant could be years. 

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

User
Posted 21 Jun 2022 at 09:02

Thank LynEyre

Good advice.  I have been using the pump twice a day for exercise purposes, just not for sex itself. I found then rings too painful and just not worth the effort. 

Will definitely try the injections if they are recommended (will try anything at least once!).  Was not sure if they work after non nerve sparing surgery so let's see what they say.  

User
Posted 21 Jun 2022 at 14:15
The injections don't need nerves to be effective
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Dec 2022 at 05:05

Thank you for the post. Can you tell me which surgeon you used?

User
Posted 28 Dec 2022 at 03:23

I love your posts Dave, they combine information with experience and humour but delivered with great humility. 

It's interesting because now that I have commenced hormone treatment, I thought why didn't I just cut it out. It has dawned on me that despite the commonly held view that "you don't die from you die with prostate cancer", many die with. I have faced up to my situation, which is that I am buying time, not a get out of jail card. Hopefully radiotherapy and HT will buy me a decade but having looked at the tumours size and anterior lesions of 1.8cm, although it is supposedly N0M0, I have no doubt that time shall prove otherwise.

Gabriel 

 

 

User
Posted 02 Jan 2023 at 17:48

Originally Posted by: Online Community Member

Thank you for the post. Can you tell me which surgeon you used?

 

Sent you a private message

 
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