RARP v RT for localised PCa

User

Posted 13 Apr 2024 at 18:19

Apologies for perhaps repeating a topic that has been well aired in this community but I would be interested in views on the dilemma of which treatment option to go for.

I’m 68 and was diagnosed beginning of this month following PSA 6.55, MRI and biopsy, with Gleason 3+4=7 ISUP T2. 30 samples taken in biopsy. 7/8 in specimen A (right anterior) cancerous. All the rest (incl. in specimens B-E) benign (i.e., 23).

Urologist says treatment is required. Not inclined to disagree with that! He’s not in favour of Focal Therapy as he considers a 70-80% success rate (cure from the treatment?) not good enough. He’s a surgeon and recommends RARP but has referred me to RT and FT if I want to explore those options.

He hopes that nerve-sparing operation may be possible for me and that a modified Retzius procedure could be followed. Fortunately, I’m in pretty good health otherwise and have already started my pelvic floor exercises in readiness for a possible operation next month.

Obviously worried about incontinence and ED (though TBH the later is not as great as it has been for me). May be the op will make me feel less embarrassed about exploring vacuum pumps or regular PED 5 medication? 🤭

I can see the logic in going for a RARP over RT if that preserves RT for later if needed, helps address my current enlarged prostate urinary problems (though not incontinence!) and if RT would still require HT - appreciate there’s been talk here about a five course RT without HT programme - plus not be without its own potential post-treatment problems.However, I wondered if people have views on:

1. The logic for me in going for RARP over RT (appreciate no one’s giving medical advice here about that). Most people seem to be satisfied with having gone with the surgery option though I see some query whether with just five RT sessions that might have been a better choice for them.

2. Whether others with “enlarged prostate” symptoms prior to surgery saw them go away afterwards (assuming incontinence could be dealt with).

3. How useful people thought the pre and post op pelvic floor exercises were for their incontinence recovery.

4. Whether there is anything else that people wish they’d taken into account before electing for surgery - beyond the incontinence and ED problems.

Thanks and apologies if I am just repeating questions already asked and answered.

User

Posted 15 Apr 2024 at 08:27

Originally Posted by: Online Community Member

However, ED is a major issue, incontinence (only bedtime) completely dry during the day, I must add I have been dry the past 2 nights, so hoping it is a sign of things to come.

Good morning mate. I know how debilitating you were finding nocturia. It's brilliant news that you've had a couple of dry nights. Long may it continue.👍

Thanks a lot Ady. Another dry night, so that is 3rd day in a row! To answer the poster's question as regards whether there is anything else the wished they had considered before electing for surgery. I would say, finding this forum would have been a start, I wish I had found this forum before surgery! I went into surgery with blind optimism, lack of preparation and struggled (psychologically) initially post surgery with my predicament (ED and incontinence issues). I am however indebted to guys on here for all the practical advice I received here to deal with my new normal.

User

Posted 13 Apr 2024 at 23:49

Hello mate and welcome to the forum.

Surgery v RT/HT is probably the most asked question on here. Unfortunately there is no definite answer which is best.

The consensus of opinion seems to be there's very little difference between the two. However individual outcomes can vary enormously.

You hear of incredible recoveries from both primary treatments, you also hear of very poor outcomes.

I'm honestly beginning to think a lot of it is luck.

Whatever option you choose, I wish you well.

Edited by member 13 Apr 2024 at 23:51 | Reason: Typo

User

Posted 14 Apr 2024 at 02:38

Most people seem to feel they opted for the right treatment whatever they had. There are cases you could make for and against any treatment but this takes into account a man's age, fitness, suitability, aversion to Surgery/RT/Focal. Some men can't accept having cancer in their Prostate and just want it out, while others want the minimum side effects which generally means Focal, accepting it might mean repeating the procedure. Where there is a likelyhood that a man having surgery may well need RT afterwards to treat a wider area, he may just go thraight for RT and avoid potential side effects of both forms of treatment. You could use the search facitty which is not great or refer to the 'Tool Kit' provided by this charity which many men find helpful but ultimately only you can decide taking into account the opinion of your consultants of your individual case. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 14 Apr 2024 at 02:43 | Reason: to highlight link

Barry

User

Posted 14 Apr 2024 at 13:56

Thanks Decho. I have in fact spoken to a family friend who says his degree of cancer was similar to mine and has no regrets about opting for surgery despite still having incontinence and ED problems three month a later. For him, getting the site of the cancer totally removed in a single procedure was compelling, plus retaining RT as salvage treatment should that be necessary.

incontinence frankly is a bigger worry for me since it seems the ED issue can, in some ways, be seen as a change from natural to “manufactured” erections. If you’re not looking for new sexual partners, that change may well be less of an issue?

As regards incontinence, my friend regrets not having started pelvic floor exercises before treatment and now is strict about doing them. It obviously makes sense to start them pre-op - though I did come across an American surgeon who was strongly against them! - though I doubt doing them rigorously before the op dramatically changes the outcome. Ut’s just that it can’t hurt to get started on them.

Thanks again for your advice and response. Best wishes.

User

Posted 14 Apr 2024 at 14:40

Thanks Lizzo37. Interestingly enough quite recently my BP has risen quite dramatically and my ED become more noticeable though my cholesterol levels are fine.

You’re right that one’s cancer problem is only definitely known post prostate removal, hence supposedly one of the benefits of surgery. Most scores and grades are shown to be worse I gather. Positive margins seem to be the thing to worry about from the post op pathology and the need for RT following the op.

As I said in another reply, if the ED problem switches from erections that are no longer natural but can be induced with treatment, that’s likely less of an issue for an older man.

I have ruled out FT and am moving towards surgery. That seems to be, as one US guy said on his YouTube PC videos, seen as the gold standard treatment option, at least for those eligible (in terms of their health and age) for it and prepared to accept the incontinence and ED challenges that come with it.

Again, thanks for your reply and best wishes.

User

Posted 14 Apr 2024 at 15:24

Hi Burkry

I had surgery 12 years ago. One of the reasons I chose surgery was that for some years I had suffered from prostatitis and BPH. I was very pleased that I no longer suffer from either of these conditions following surgery. Because of my age we were going to have to deal with ED anyway; erections after most PCa treatments tend to be inferior to those before the treatments. I am 99.9% continent, leaking when sexually excited and ejaculate urine at orgasm! It has been a question of adapting to this new normal. With luck it is possible to have a good quality of life after PCa. You make like to follow the following link to see how we managed our life after prostatectomy.

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

It is very difficult to know which treatment to choose, so best of luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 14 Apr 2024 at 19:27

Originally Posted by: Online Community Member

1. Listen to individuals experience of both treatments

Morning Derek

I know you're a great fan of face to face support groups, they've never appealed to me. I don't think you'll ever get a better or larger sample of cancer experiences and opinions, than on here.

From what I've seen, you could have people with identical ages, staging, PSA, and Gleason scores, and no matter what radical treatments they choose, their outcomes could still vary enormously. The best any individual can give, is an insight into how they fared. An individuals cancer journey, in reality, only gives others a very limited idea of what may or may not happen to them.

Hi Adrian,

Yes, I know that I sound like a broken record sometimes going on about Maggies.🤣🤣 and I DO agree that it’s not for everyone.

All I can say is that I thought like you to begin with too. Support Groups weren’t for me! It took 9 months for me to be persuaded to to go to Maggies by by wife. But it has completely transformed the way I cope with this disease, and I have gained so many close friends from attending. The thing about this forum is that yes, it’s a wonderful source of information but it is skewed towards people who have/had issues. Some, like you (and maybe me😊), and also some members who’s knowledge is far greater than I will EVER have, stay on when treatment is finished because we/they believe we can offer support and advice to others. Men DO come and go from our Maggies Group as well, but the reassurance that they can give those that are swithering about which treatment to go for is invaluable. I think it’s so comforting that they can share their experiences about the surgeon that performs these operations in Fife, who by all accounts is an excellent surgeon and very personable to boot.

All the best,

Derek

User

Posted 14 Apr 2024 at 21:05

Hi Burkry,

As others have already said, choosing a treatment is a minefield. Some people are 'lucky' to experience only minor or short-term problems, whilst others have significant problems, and over a longer time-frame.

I had surgery, which was supposedly 'nerve-sparing', but 22 months later, I still have major E.D. problems (and some incontinence). That said, I note that your surgeon has offered you a Rezius-sparing procedure. I have heard very good reports of this in relation to significantly reducing the risk of incontinence and I wish that this was standard procedure, but it isn't. So, if you're intent on going down the surgical route, you should fare better under your surgeon than I have done, at least in relation to incontinence.

Also, one advantage of surgery is that afterwards they dissect the prostate and can give a more accurate report of how far the cancer had spread. (Prior to surgery, I was thought to be Gleason Grade T2, but after the dissection, I was upgraded to T3a because they could see that it had breached the capsule of the prostate).

And yes, keep up the Kegel exercises before and after surgery (3 times daily). They do make a difference. If you do any other form of exercise which strengthens the pelvic floor, so much the better.

Best wishes in whatever treatment you decide to pursue.

JedSee.

User

Posted 15 Apr 2024 at 01:03

If I might 2 pennies worth. I am also coming up to 23months since my surgery and was told it was nerve sparing. However, ED is a major issue, incontinence (only bedtime) completely dry during the day, I must add I have been dry the past 2 nights, so hoping it is a sign of things to come. PSA has remained undetectable. On the ED front I have several tools in my armoury from injections - (which I dont use because of my phobia for needles), to vitros gel (again not used yet), to Tadalafi (5mg and 20mg) and the VED pump with a vibrating cockring - I have found this combo works with my wife and bring her to orgasm every time, much better than I could before my surgery. I remain hopeful that the issue with incontinence will resolve itself and spontaneous erections will also resolve.

User

Posted 21 Apr 2024 at 17:08

I know that ED is a concern for you, and for a lot of men, however I joined the 'prick a d*ck' club a few months back and am now pretty used to it. I felt (and my wife confirmed) that the resulting erections are harder and my erect penis girth has increased (not the length which has been slightly reduced). The upside is that they last a good 20-25 minutes and so, if you have the stamina, you can keep going even after orgasm.

So you could say there are some upsides in a slightly perverse way LOL

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User

Posted 13 Apr 2024 at 23:49

Hello mate and welcome to the forum.

Surgery v RT/HT is probably the most asked question on here. Unfortunately there is no definite answer which is best.

The consensus of opinion seems to be there's very little difference between the two. However individual outcomes can vary enormously.

You hear of incredible recoveries from both primary treatments, you also hear of very poor outcomes.

I'm honestly beginning to think a lot of it is luck.

Whatever option you choose, I wish you well.

Edited by member 13 Apr 2024 at 23:51 | Reason: Typo

User

Posted 14 Apr 2024 at 02:38

Edited by member 14 Apr 2024 at 02:43 | Reason: to highlight link

Barry

User

Posted 14 Apr 2024 at 11:07

Hi Burkry,

I think you would benefit from talking face to face with other men who have gone through both treatments in your locale. I think the best way to do this is to find if there is a local support Group such as Maggies, and if so go along…the chances are they will have a men’s group, maybe like me it might even be specific to Prostate Cancer. We have 2 Groups in Kirkcaldy, a weekly group for any men’s cancer and a monthly for PCa. It’s made a huge difference to me attending these meetings. It would give you a chance to

1. Listen to individuals experience of both treatments

2. Get some insight to the surgeon who would be doing the Op, and also the Oncologist should you go down that route.

I’m not in a position to advise you what treatment is best for you, all I can say is that I(and I’m not alone) sometimes find it hard at these meetings when the guys talk about how they made the right decision to have a Prostatectomy((I wasn’t given the option), even though many of them still have ED and incontinence issues . Those going down the HT/RT route are not quite so positive about their experiences. I would say nearly ALL the guys I’ve met at Maggies who’ve had the option of surgery have gone down that route. I also know that a few don’t choose surgery and a couple of the reasons given are…

1. Their job means that they can’t be out of action for an unknown period….eg a farmer
2. they don’t want to risk long term ED

Some men in the Group have made a decision after they’ve come along to meetings, whilst others have been leaning towards one or the other and just have it confirmed.

If you’ve followed my journey will have seen that I have just had my last HT jab(hopefully forever🤞🤞🤞) and I can’t tell you how delighted I am. Some men don’t seem to be troubled by side effects but others like me seem to get everything going…and more…who warned my I could end up with Peyronie’s disease?🤣🤣🤣
Ive got through it though, 2 years of HT plus 20 sessions of RT, PSA undetectable and looking forward to getting my life (and testosterone!) back🤞🤞🤞🤞

Good luck with whatever treatment you choose.

Derek

User

Posted 14 Apr 2024 at 12:09

Originally Posted by: Online Community Member

1. Listen to individuals experience of both treatments

Morning Derek

I know you're a great fan of face to face support groups, they've never appealed to me. I don't think you'll ever get a better or larger sample of cancer experiences and opinions, than on here.

Edited by member 14 Apr 2024 at 12:27 | Reason: Typo

User

Posted 14 Apr 2024 at 12:22

Hi my husband was 2 years older than you at dx NHS let him and no doubt they are letting you choose treatment, at the time I thought HIFU was the best choice but he chose surgery and never regretted it he even said after the op he felt better for it being removed his was more aggressive than yours Gleason 4+4 psa 18. T3

I think it's correct in saying you dont have aggressive prostate cancer although there is a small chance that can change post op examination of removed prostate

Do you have high blood pressure or high cholesterol these seem to be contributing causes of prostate cancer high blood pressure can cause ED which you seemed to suggest you have

I have read that they offer younger guys surgery due to having a longer lifespan during which after effects of RT are more likely yet ED is probably more of an issue with younger guys so there's no free lunch

Take your time to mull it all over and read lots of personal stories of treatment and outcome

Liz

User

Posted 14 Apr 2024 at 13:56

Thanks again for your advice and response. Best wishes.

User

Posted 14 Apr 2024 at 14:40

Again, thanks for your reply and best wishes.

User

Posted 14 Apr 2024 at 15:24

Hi Burkry

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

It is very difficult to know which treatment to choose, so best of luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 14 Apr 2024 at 16:10

Thank you so much Pratap & Jeanie. I appreciate that everything depends on the individual and his circumstances but what you say is very encouraging!

Your experience may or may not prove true for me but what you say on the incontinence and ED front sounds hopeful. I had read somewhere about dry orgasms potentially becoming a different form of wet orgasm. However, the main thing is hoping for a long lasting cure from PCa and no long term incontinence.

Hopefully pumps will work for me if that is what is required.

It’s also very good to hear that another plus of surgery, which my consultant has mentioned to me, is the probability of no longer having the inconvenience of an enlarged prostate with frequent visits to the loo, very occasionally fruitless visits and having to avoid liquids before long journeys etc.

Again, your reply to my questions, like all the others I have received, is much appreciated. Best wishes.

User

Posted 14 Apr 2024 at 19:27

Originally Posted by: Online Community Member

1. Listen to individuals experience of both treatments

Morning Derek

I know you're a great fan of face to face support groups, they've never appealed to me. I don't think you'll ever get a better or larger sample of cancer experiences and opinions, than on here.

Hi Adrian,

Yes, I know that I sound like a broken record sometimes going on about Maggies.🤣🤣 and I DO agree that it’s not for everyone.

All the best,

Derek

User

Posted 14 Apr 2024 at 21:05

Hi Burkry,

And yes, keep up the Kegel exercises before and after surgery (3 times daily). They do make a difference. If you do any other form of exercise which strengthens the pelvic floor, so much the better.

Best wishes in whatever treatment you decide to pursue.

JedSee.

User

Posted 14 Apr 2024 at 21:39

Thanks very much JedSee for replying to my questions. The more I think about it, the more I think that surgery will be the most likely chosen option for me, despite big uncertainties as to incontinence and ED outcomes.

As regards ED, I guess few of us who are still in reasonably good health and shape and who would like to think that life still offers a lot to do and enjoy (and especially if EF isn’t as great as it once used to be), would rank avoiding ED above avoiding a spread of cancer.

Incontinence obviously is a more problematic issue since you can’t so easily just forget about it and it does impact on your enjoyment of life, etc. However, again, I guess few of us would put off surgery - unless we really are recommended active surveillance as treatment - simply to avoid incontinence and instead accept the risk of spreading cancer (if we didn’t want to go down the HT/RT route)?

I will just have to hope that I fare as well as is possible post-operatively and do what I can to improve the chances of that by upping my fitness levels and working on those pelvic floor exercises.

User

Posted 15 Apr 2024 at 01:03

User

Posted 15 Apr 2024 at 08:14

Originally Posted by: Online Community Member

However, ED is a major issue, incontinence (only bedtime) completely dry during the day, I must add I have been dry the past 2 nights, so hoping it is a sign of things to come.

Good morning mate. I know how debilitating you were finding nocturia. It's brilliant news that you've had a couple of dry nights. Long may it continue.👍

User

Posted 15 Apr 2024 at 08:27

Originally Posted by: Online Community Member

However, ED is a major issue, incontinence (only bedtime) completely dry during the day, I must add I have been dry the past 2 nights, so hoping it is a sign of things to come.

Good morning mate. I know how debilitating you were finding nocturia. It's brilliant news that you've had a couple of dry nights. Long may it continue.👍

User

Posted 21 Apr 2024 at 17:08

So you could say there are some upsides in a slightly perverse way LOL

User

Posted 21 Apr 2024 at 17:38

Originally Posted by: Online Community Member

I know that ED is a concern for you, and for a lot of men, however I joined the 'prick a d*ck' club a few months back and am now pretty used to it.

The problem is mate, Gee_Baba has a phobia with needles. Like you, I find injections incredible, but we're lucky that we haven't got a problem with needles.

User

Posted 21 Apr 2024 at 18:02

Originally Posted by: Online Community Member

I know that ED is a concern for you, and for a lot of men, however I joined the 'prick a d*ck' club a few months back and am now pretty used to it.

The problem is mate, Gee_Baba has a phobia with needles. Like you, I find injections incredible, but we're lucky that we haven't got a problem with needles.

Absolutely right sir, I have a severe phobia of needles. No way will I be able to inject my little man with a needle. I dread the 2ce yrly PSA blood test. I remember, coming home after my surgery with a month's supply of blood thinners in injection form, think I only managed to use 7days worth!

Edited by member 21 Apr 2024 at 18:03 | Reason: Not specified

User

Posted 21 Apr 2024 at 19:20

Ahh, I wasn't aware of that. Can't you get your partner to do it while you are not looking? :) :) :)

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