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Treatment choice at 48 and starting my LDR Brachytherapy Journey

User
Posted 24 May 2023 at 17:26

Hello!

I'll start by saying thank you to everyone on these forums for their contributions which I’ve referred to since 2015 - it's been an incredibly useful source of information during difficult times! 👍

Now it's my turn to hopefully give something back to anyone else who might be starting their own journey or deliberating about choices.

With a history of PCa in the family, I was advised to start PSA testing from the age of 40. I did and my first PSA test in 2015 came back at 4.1 (and 3.7 on a retest).

I had an MRI scan locally but didn’t really feel comfortable with the Urologist in my local hospital, so I sought a second opinion and landed on a Urologist (and team) who I’ve trusted implicitly ever since.

My first TP biopsy under GA was in Feb 2016 - all 34 cores came back negative. Since then, I've been having 6 monthly PSA tests and annual multiparametric MRI's.

Over the last 7 years, the MRI’s showed no changes and no visible lesions but although my PSA went up and down a bit, overall it did show an upward trend.

My consultant told me that despite the reassuring looking MRI’s, based on my prostate size of 40cc, when the PSA level breached 6, the PSA density would be high enough to really warrant/trigger another biopsy (I think I’d been resisting a 2nd biopsy for some time at this point!)

By the end of Feb 2023, with a PSA of 6.55, I had my 2nd TP biopsy, this time under local anaesthetic.

Of the 24 cores taken, 2 came back positive – one in the right anterior sector (5mm) and 1 in the right posterior sector (4mm). Both were graded Gleason 3+4 (10% pattern 4)

In addition to there being no visible lesions on the MRI, there was also no evidence of perineural invasion nor any presence of cancer cells in the fat tissue surrounding the prostate surface

I was offered Active Surveillance, Robotic Surgery or LDR Brachytherapy.

Unusually, my consultant is one of those rarer breeds that has done high volumes of both prostatectomy and brachytherapy procedures. As such, I felt he was much less biased than others might have been when discussing the options.

We agreed almost immediately to rule out taking the AS route. Given my age (48 now) he and I felt this would only be delaying inevitable treatment and the chances of curative treatment were going to be best if done as early as possible. When I asked him what he would do, he said that if he were my age, his choice would probably be to go down the robotic surgery route because he felt there would be more certainty in the long term. He was careful to explain though that given the early diagnosis and grading, I should be a good candidate for either option.

Because my Dad had Brachytherapy 17 years ago (he's still PCa free by the way 💪) and because I’d had 7 years of monitoring myself, I was already fairly up to speed with the pros and cons of both options but nevertheless, I spent the next couple of months drilling down into every detail I could find.

I seemed to be researching endlessly and discussing tiny details I’d read about in research papers with my poor wife who has probably suffered more than that I have! Because my consultant isn’t local to me, I also met with a couple of other surgeons and oncologists to discuss the options available locally. It was interesting to hear about different BT techniques and surgical outcomes from different centres. I also talked to other friends/friends of friends who have had treatment for PCa and their experiences. As with my wife, I must have bored many of my friends to death with my deliberations as I bounced back and forth between treatment choices on a weekly/daily/hourly basis 🤣

Finally though, I decided that with nothing to choose between the outcomes, I was going to go down the Brachytherapy route. Truth be told, the thing that really made the decision difficult was the statement that ‘salvage therapy after BT is much harder/has worse outcomes than salvage after surgery’.

That sweeping statement may be true and I hope I don’t have to find out first hand but as much as I heard about the limitations and effects of salvage options after BT, I also heard about how unappealing the effects of salvage can be after surgery.

So, I’ve decided not to think about failure, recurrence or salvage and focus on the here and now. Brachy seems to offer the same chance of a positive outcome with less trauma and fewer side effects. Hopefully, that all turns out to be the case!

5 days ago, I had 76 seeds implanted in a single stage procedure. Thus far, I’ve had an uneventful few days. I was discharged the same afternoon, and other than intermittently passing blood in my urine and feeling a bit tender round the perineum, everything up to now has been fine. There’s already a little bit of a feeling of urgency but that could just be part of the initial recovery.

I’m aware that the side effects will ramp up over the coming weeks as the radiation starts to do it’s job but hopefully the Alfuzosin which I started a couple of days before the procedure will help.

Although I’m being careful not to overdo things, I’ve been getting on with life as normal without any problem.

My first follow up is scheduled for two weeks time, CT and MRI scans at 4 weeks post procedure and a further follow up at 6 weeks to review the scans.

So that’s my story so far, I plan to check-in here regularly and will update as I know more!

Cheers! 🥂

P.S. If you’ve made it through this entire wall of text, you deserve a medal! 🏅

User
Posted 24 May 2023 at 17:26

Hello!

I'll start by saying thank you to everyone on these forums for their contributions which I’ve referred to since 2015 - it's been an incredibly useful source of information during difficult times! 👍

Now it's my turn to hopefully give something back to anyone else who might be starting their own journey or deliberating about choices.

With a history of PCa in the family, I was advised to start PSA testing from the age of 40. I did and my first PSA test in 2015 came back at 4.1 (and 3.7 on a retest).

I had an MRI scan locally but didn’t really feel comfortable with the Urologist in my local hospital, so I sought a second opinion and landed on a Urologist (and team) who I’ve trusted implicitly ever since.

My first TP biopsy under GA was in Feb 2016 - all 34 cores came back negative. Since then, I've been having 6 monthly PSA tests and annual multiparametric MRI's.

Over the last 7 years, the MRI’s showed no changes and no visible lesions but although my PSA went up and down a bit, overall it did show an upward trend.

My consultant told me that despite the reassuring looking MRI’s, based on my prostate size of 40cc, when the PSA level breached 6, the PSA density would be high enough to really warrant/trigger another biopsy (I think I’d been resisting a 2nd biopsy for some time at this point!)

By the end of Feb 2023, with a PSA of 6.55, I had my 2nd TP biopsy, this time under local anaesthetic.

Of the 24 cores taken, 2 came back positive – one in the right anterior sector (5mm) and 1 in the right posterior sector (4mm). Both were graded Gleason 3+4 (10% pattern 4)

In addition to there being no visible lesions on the MRI, there was also no evidence of perineural invasion nor any presence of cancer cells in the fat tissue surrounding the prostate surface

I was offered Active Surveillance, Robotic Surgery or LDR Brachytherapy.

Unusually, my consultant is one of those rarer breeds that has done high volumes of both prostatectomy and brachytherapy procedures. As such, I felt he was much less biased than others might have been when discussing the options.

We agreed almost immediately to rule out taking the AS route. Given my age (48 now) he and I felt this would only be delaying inevitable treatment and the chances of curative treatment were going to be best if done as early as possible. When I asked him what he would do, he said that if he were my age, his choice would probably be to go down the robotic surgery route because he felt there would be more certainty in the long term. He was careful to explain though that given the early diagnosis and grading, I should be a good candidate for either option.

Because my Dad had Brachytherapy 17 years ago (he's still PCa free by the way 💪) and because I’d had 7 years of monitoring myself, I was already fairly up to speed with the pros and cons of both options but nevertheless, I spent the next couple of months drilling down into every detail I could find.

I seemed to be researching endlessly and discussing tiny details I’d read about in research papers with my poor wife who has probably suffered more than that I have! Because my consultant isn’t local to me, I also met with a couple of other surgeons and oncologists to discuss the options available locally. It was interesting to hear about different BT techniques and surgical outcomes from different centres. I also talked to other friends/friends of friends who have had treatment for PCa and their experiences. As with my wife, I must have bored many of my friends to death with my deliberations as I bounced back and forth between treatment choices on a weekly/daily/hourly basis 🤣

Finally though, I decided that with nothing to choose between the outcomes, I was going to go down the Brachytherapy route. Truth be told, the thing that really made the decision difficult was the statement that ‘salvage therapy after BT is much harder/has worse outcomes than salvage after surgery’.

That sweeping statement may be true and I hope I don’t have to find out first hand but as much as I heard about the limitations and effects of salvage options after BT, I also heard about how unappealing the effects of salvage can be after surgery.

So, I’ve decided not to think about failure, recurrence or salvage and focus on the here and now. Brachy seems to offer the same chance of a positive outcome with less trauma and fewer side effects. Hopefully, that all turns out to be the case!

5 days ago, I had 76 seeds implanted in a single stage procedure. Thus far, I’ve had an uneventful few days. I was discharged the same afternoon, and other than intermittently passing blood in my urine and feeling a bit tender round the perineum, everything up to now has been fine. There’s already a little bit of a feeling of urgency but that could just be part of the initial recovery.

I’m aware that the side effects will ramp up over the coming weeks as the radiation starts to do it’s job but hopefully the Alfuzosin which I started a couple of days before the procedure will help.

Although I’m being careful not to overdo things, I’ve been getting on with life as normal without any problem.

My first follow up is scheduled for two weeks time, CT and MRI scans at 4 weeks post procedure and a further follow up at 6 weeks to review the scans.

So that’s my story so far, I plan to check-in here regularly and will update as I know more!

Cheers! 🥂

P.S. If you’ve made it through this entire wall of text, you deserve a medal! 🏅

User
Posted 02 Jun 2023 at 15:06
Hiya Big Stan & Tom G,

I have just returned home from playing Golf at my club and can't resist replying to you both offering some of my experiences after

LDR Brachytherapy in April 2010. My story is intended to encourage you and others considering seed implantation and not a vehicle

for self promoting. I quickly recovered from the procedure and played 18 holes of Golf seven days later. I had no difficulty urinating

after the 1st 10 days or so and resumed my liking of red wine pretty quickly. I was aged 65 on Diagnosis and as I approach my 79th

birthday I want you to know that I play Golf 3 times every week and have done so for the past 30 years, LDR Brachytherapy was never

an obstacle to my life and has never stopped me from riding my mountain bike 3 times every week. Listen to your body and reach out

for whatever you are capable of. We should all be very grateful that we qualified for a Prostate Cancer treatment such as LDR Brachytherapy.

Please read my profile for fuller details of my experience and if you want to contact me direct please feel free to so do.

Best wishes to you both.

Michael aka Chigwell 2010.

User
Posted 02 Jun 2023 at 21:00

Originally Posted by: Online Community Member

Thanks for the update Paul (Big Stan). I have the Brachy procedure in a few weeks and am starting to worry about the side effects already. I am not so concerned about not drinking anything with caffeine in, but I do enjoy wine. I hope that I am able to enjoy a glass or two not too long after the procedure. I also play golf so was expecting to be unable to play for a while. It's good to hear you have been able to play less than two weeks after. I hope I cope as well as you have.

All the best

Tom

 

 

Hi Tom,

I seriously wouldn't worry. I was just the same, very anxious but unnecessarily so.

My oncologist suggested the the immediate side effects of the procedure would be less than that of the biopsy because it was less invasive (they weren't 'cutting' anything out, but just putting the seeds 'in').

Actually though, I found the immediate recovery a tiny bit worse but I'm seriously talking small margins - I experienced no pain at all, just a little discomfort around the perineum for about a week but in reality, I was probably overly sensitised to it because I knew what they'd just done (and my wife says I'm not very brave 😂!)

I was also a little disconcerted by the immediate feeling of urgency and reduced flow which I didn't expect initially but that's now almost completely disappeared. I'm aware those side effects could increase again though in the next few weeks as the radiation builds up but I hope it will be OK - so far so good!

As far as wine is concerned - no adverse reaction last night and none tonight! I'm absolutely sure it would have been fine earlier too but my better half can be something of a taskmaster when she wants (so I relied on a stiff single malt instead!!!🤪🥃)

Also just back from another 9 holes of golf this afternoon and feel I could easily manage 18 even in this mini-heatwave we're experiencing and as I'm booked off work, I have 18 booked in with a friend on Monday! 🏌

Best of luck but seriously, you won't need it, don't worry, it's all very easy!

Cheers

Paul

User
Posted 04 Jun 2023 at 13:52
I have extensively tested the quantity of red wine and it is not a problem. I use to be a beer/real ale drinker and that can cause problems. The most I have tried was two pints of beer in a pub with a meal. The walk home was only 43 minutes however at 40 minutes my bowels said enough is enough😳 Luckily there was plenty of woodland around!

Guinness seems to be the exception to the rule. I can drink that normally and it does not seem to adversely affect me🍺

All this talk of drink🤔 well it is a sunny Sunday afternoon, I wonder what I should do next.

Rgds

Dave

User
Posted 14 Sep 2023 at 17:16

Thought I would update here after my first 4 monthly post procedure PSA test and consultant follow up.

In the 4 months post procedure, PSA has dropped from 6.55 pre procedure to 2.12 .

Yesterday I was more than a bit disappointed with the fall. I had hoped/expected it to be more dramatic especially as I’d seen quite a few members on here who had dropped from higher initial readings than mine to readings of under 1.0 within the first three months.

However, I’ve been reassured today by my consultant that he sees the decrease of 68% as actually very good. He said it was as good as he hoped for and that the drop in younger men is not usually as rapid as it is in older patients.

He also warned me that it would go up and down over the next few years and not to panic! I was already aware there would almost certainly be a PSA bounce at some stage but he reiterated that the fluctuations are greater in younger men. It looks like I might be in for some nervy times ahead!

My consultant said his hope was that the PSA would ultimately drop to below 0.5 after 3 years. Again, I would have thought/expected/hoped it would be lower – under 0.2 in my mind but I’m not the one that has done more than 1,500 Brachy procedures and spent my life dedicated to all things prostate so I suppose I should go with his read and not mine!! 😆

So all in all, feeling pretty satisfied at this stage with my initial concerns reassured. Time to forget about it for another 4 months now!

From the physical side of things, everything continues to be pretty close to perfect. Initial minor urinary urgency and frequency has now become unnoticeable although I am still taking Alfusozin daily (but advised today to ‘trial’ taking it every other day from 6months).

I now take half a 10mg tadalafil tablet 3 times a week as well which I’m not sure is absolutely necessary but it has made me feel like a teenager again so I’ll stick with it for the time being! 💪😂😂 The dry orgasms are becoming less dry by the week which has helped to make the feeling of orgasm much more ‘normal’ again.

I literally have to pinch myself sometimes at how smooth this whole process has been up to now. In and out of hospital within hours on the day of the procedure. Only very minor urinary side effects for a few weeks post procedure and back to normal life without compromise within days.

Let’s just hope all that stays the same for another 30+ years! 🤞

Edited by member 14 Sep 2023 at 17:26  | Reason: Grammatical corrections!

User
Posted 15 Sep 2023 at 21:25

Hi Buster, I had LDR Brachy not HDR.

I wouldn't get too caught up in chasing numbers at this point. Yes, everyone will naturally and subconsciously have 'targets' but I'm absolutely certain the professionals know more than we do!

I've also seen the sub 0.2 target after a couple of years touted as the 'definitive' number and I'd be very happy to get there but I also think PSA readings with this type of treatment (as opposed to RP) are universally accepted to be subject to sometimes fairly wide ranging fluctuations within the first 3 years for all sorts of reasons.....

If you show me google research saying 0.2 is the bee all and end all I'm sure I can show you google saying it's not! For example, look at this graph from this article

PSA Trend for a 46 year old man after LDR Brachy 

Possibly the biggest downside to the route we've chosen is you might not know 'definitively' (although there is no such thing as definitive with any treatment choice, at any time!) where you really are for a few more years. 

But would you be any happier finding out immediately after RP that although your PSA was undetectable, you had positive margins and what that might mean for the future?

I'm not very good at not being in control but having made my decision, I'm going to try my best to trust the advice and opinion of the professionals and enjoy the next 3 years as much as I can (with obvious terrible anxiety every 4 months when it comes to testing time! 🤣)

So far so good though....must now go and book tomorrow's Tee time! 😉🏌

 

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User
Posted 24 May 2023 at 19:31

A very good post, taking a very balanced view on all the options. I wouldn't say you'd ruled out active surveillance; I'd say you were on it for seven years and it ended when it couldn't continue. 

Lots of credit to your urologist, I know people on AS who struggle to get the regular tests and reviews. 

I hope all goes well in the future, I was diagnosed at 53. Most people are diagnosed nearer to 70. So you and I are hoping to stay cancer free for another 30-40 years, compared to 10-20 years for those diagnosed later. Not much point in worrying about that though, we've got a life to be getting on with.

Dave

User
Posted 24 May 2023 at 19:56
Thanks Dave - I think you're right and actually think my consultant might have said at some point I'd already done the AS part!

Yes, being diagnosed 'young' definitely made the decision harder for me.....you're looking for long term certainty when of course nothing is certain for anyone, with or without PCa.

Eventually, I had a stern word with myself and decided to focus on the here and now and not the 'what if's' the future might hold. That's definitely made easier when both options offer almost identical success rates.

Here's to the next 40 years!

Cheers!

Paul

User
Posted 24 May 2023 at 21:46
Well done you - what a difference it makes when you have confidence in your medical team.

My husband would have gone down the brachy route but was refused - at the time, our hospital didn't offer brachy to young men (he was 50). One failed RP and one lot of salvage RT later, he is fine but I feel sure that brachy would have been the best option for him.

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

User
Posted 25 May 2023 at 10:29

Hi Lyn, you’re absolutely right, I didn’t feel any confidence or connection with the first urologist I saw but the last 7 years under the care of my current one has been brilliant and reassuring every step of the way. 

To be honest I think most people will or should have a good experience – I think I was just unlucky the first time with a guy who was a few months away from retiring and just seemed jaded by it all.  

With that said, my consultant (and now the oncologist and the rest of the team) seem to be the perfect fit for me/my personality. I like that we’re on first name terms and 7 years on can laugh at stuff you shouldn’t normally laugh at. Most importantly, he let me swear very loudly during the 2nd LATP biopsy!! 😂😂

I read elsewhere on the forums that you thought Brachy would have been the best choice for your hubby and it’s such a shame that treatment choice was ageist at the time but I’m pleased everything has worked out anyway albeit perhaps in an unnecessarily convoluted way – long may he stay in good health. 🥂

User
Posted 25 May 2023 at 20:11
Hello Stan, 120 days after my 57 seed Brachytherapy. I still feel tired however I am not sure if that is due to the procedure or just my natural disposition.

The only physical effect I noticed was that my usually greasy hair has become very dry and even more unmanageable than it was before.

So far I have no regrets and within 3 months my PSA had fallen from 8.6 to 0.8. The doctor did say this was unusual as it should take between 6-9 months for that to happen.

Next blood test will be at the end of August.

I hope you keep well.

Rgds

Dave

User
Posted 25 May 2023 at 21:07
Hi Dave,

Congratulations on the promising results so far - looking good 👍

Thankfully, hair issues are not something I'm going to have to worry about, there's not much evidence left that I ever had any! 🤣

All the best,

Paul

User
Posted 01 Jun 2023 at 16:38

13 days post procedure now with a fairly unremarkable update to post (long may it stay that way! 🤞) 

There’s just a little tenderness remaining at the site of the procedure but still quite a lot of (painless) bruising to the area as well as to the crown jewels!👑

Blood in the urine seems to have finally subsided which took longer than I was expecting (it took probably 9 days when I was only expecting a day or 2!) 

The initial increased urgency has settled down as well and flow has improved again…for now at least! Similarly, function is perfect (but bloody of course! 🤮)

All in all, no complaints, still taking it easy but have been walking round the golf course with my lad since the day after the procedure and played 9 holes myself yesterday so it’s all feeling a lot more normal again! Also went to a concert on Sunday night with no issues (was a bit concerned I’d spend all night running back and forth to the loo!).

The only question now is whether I risk reintroducing coffee (and wine!) back into the diet….🤷‍♂️

Cheers!
Paul

User
Posted 02 Jun 2023 at 14:32

Thanks for the update Paul (Big Stan). I have the Brachy procedure in a few weeks and am starting to worry about the side effects already. I am not so concerned about not drinking anything with caffeine in, but I do enjoy wine. I hope that I am able to enjoy a glass or two not too long after the procedure. I also play golf so was expecting to be unable to play for a while. It's good to hear you have been able to play less than two weeks after. I hope I cope as well as you have.

All the best

Tom

 

Edited by member 02 Jun 2023 at 14:35  | Reason: Not specified

User
Posted 02 Jun 2023 at 15:06
Hiya Big Stan & Tom G,

I have just returned home from playing Golf at my club and can't resist replying to you both offering some of my experiences after

LDR Brachytherapy in April 2010. My story is intended to encourage you and others considering seed implantation and not a vehicle

for self promoting. I quickly recovered from the procedure and played 18 holes of Golf seven days later. I had no difficulty urinating

after the 1st 10 days or so and resumed my liking of red wine pretty quickly. I was aged 65 on Diagnosis and as I approach my 79th

birthday I want you to know that I play Golf 3 times every week and have done so for the past 30 years, LDR Brachytherapy was never

an obstacle to my life and has never stopped me from riding my mountain bike 3 times every week. Listen to your body and reach out

for whatever you are capable of. We should all be very grateful that we qualified for a Prostate Cancer treatment such as LDR Brachytherapy.

Please read my profile for fuller details of my experience and if you want to contact me direct please feel free to so do.

Best wishes to you both.

Michael aka Chigwell 2010.

User
Posted 02 Jun 2023 at 15:45

Michael,

Was there an impact on the sexual side? Was ED an issue? 

thanks Leon

User
Posted 02 Jun 2023 at 17:24
Hiya Lovely Leon,

There was a return to married normality after a short while but in all honesty at the age of 66 and onwards there was never a focus

on sexual issues. Perhaps some other LDR Brachytherapy patient could answer this question for you but it is fair to say that at the

ripe old age of 78years 11 months my libido has become less important than my Golf Club Handicap. It may be very important for certain people but my wife and I suit each other and there was never a time when regrets were fermented.

Best wishes,

Michael aka Chigwell 2010.

User
Posted 02 Jun 2023 at 21:00

Originally Posted by: Online Community Member

Thanks for the update Paul (Big Stan). I have the Brachy procedure in a few weeks and am starting to worry about the side effects already. I am not so concerned about not drinking anything with caffeine in, but I do enjoy wine. I hope that I am able to enjoy a glass or two not too long after the procedure. I also play golf so was expecting to be unable to play for a while. It's good to hear you have been able to play less than two weeks after. I hope I cope as well as you have.

All the best

Tom

 

 

Hi Tom,

I seriously wouldn't worry. I was just the same, very anxious but unnecessarily so.

My oncologist suggested the the immediate side effects of the procedure would be less than that of the biopsy because it was less invasive (they weren't 'cutting' anything out, but just putting the seeds 'in').

Actually though, I found the immediate recovery a tiny bit worse but I'm seriously talking small margins - I experienced no pain at all, just a little discomfort around the perineum for about a week but in reality, I was probably overly sensitised to it because I knew what they'd just done (and my wife says I'm not very brave 😂!)

I was also a little disconcerted by the immediate feeling of urgency and reduced flow which I didn't expect initially but that's now almost completely disappeared. I'm aware those side effects could increase again though in the next few weeks as the radiation builds up but I hope it will be OK - so far so good!

As far as wine is concerned - no adverse reaction last night and none tonight! I'm absolutely sure it would have been fine earlier too but my better half can be something of a taskmaster when she wants (so I relied on a stiff single malt instead!!!🤪🥃)

Also just back from another 9 holes of golf this afternoon and feel I could easily manage 18 even in this mini-heatwave we're experiencing and as I'm booked off work, I have 18 booked in with a friend on Monday! 🏌

Best of luck but seriously, you won't need it, don't worry, it's all very easy!

Cheers

Paul

User
Posted 02 Jun 2023 at 21:06

Originally Posted by: Online Community Member
Hiya Big Stan & Tom G,

I have just returned home from playing Golf at my club and can't resist replying to you both offering some of my experiences after
LDR Brachytherapy in April 2010. My story is intended to encourage you and others considering seed implantation and not a vehicle
for self promoting. I quickly recovered from the procedure and played 18 holes of Golf seven days later. I had no difficulty urinating
after the 1st 10 days or so and resumed my liking of red wine pretty quickly. I was aged 65 on Diagnosis and as I approach my 79th
birthday I want you to know that I play Golf 3 times every week and have done so for the past 30 years, LDR Brachytherapy was never
an obstacle to my life and has never stopped me from riding my mountain bike 3 times every week. Listen to your body and reach out
for whatever you are capable of. We should all be very grateful that we qualified for a Prostate Cancer treatment such as LDR Brachytherapy.
Please read my profile for fuller details of my experience and if you want to contact me direct please feel free to so do.

Best wishes to you both.

Michael aka Chigwell 2010.

 

Brilliant to hear Michael, delighted to hear your story and such a positive outcome. My Dad is exactly the same age as you and now about 17 years post Brachy and similarly playing golf a few times a week and living life to the full with an undetectable PSA. I hope I can be as lucky and feeling positive at the moment! 

Cheers

Paul

User
Posted 02 Jun 2023 at 21:14

Originally Posted by: Online Community Member

Michael,

Was there an impact on the sexual side? Was ED an issue? 

thanks Leon

Hi Leon, I know you weren't asking me directly, but it's so far so good for me!

One of the oncologists I met with said there was an increase in ED over a 10+ year period after Brachy but that could also possibly be attributed to the natural ageing/drop off of libido as you get older.

User
Posted 02 Jun 2023 at 23:48

Thanks Stan that is useful to know .

User
Posted 03 Jun 2023 at 12:00
Just a quick thank you to Paul and Michael for taking the time to reply and for all the encouraging info. It has set me my mind at rest about two important things; wine and golf ;-)

If I can get back to my usual doses of each two weeks after the brachy procedure I will be delighted.

All the best

Tom

User
Posted 03 Jun 2023 at 15:26

Hi Big Stan,

Welcome to the Brachytherapy club great to hear you are doing well.I had my Brachytherapy in 2016 and coming up to 7 years in September and getting along ok with Psa 0.04 and signed off by Specialist in 2021.I don't drink much coffee but continued to drink white wine after my operation with no real problems apart from visiting the toilet a bit more.

Good to see Matron and Chigwell on your case they are the Egg Heads of our extended family on here with endless knowledge.

Good luck John.

User
Posted 04 Jun 2023 at 13:52
I have extensively tested the quantity of red wine and it is not a problem. I use to be a beer/real ale drinker and that can cause problems. The most I have tried was two pints of beer in a pub with a meal. The walk home was only 43 minutes however at 40 minutes my bowels said enough is enough😳 Luckily there was plenty of woodland around!

Guinness seems to be the exception to the rule. I can drink that normally and it does not seem to adversely affect me🍺

All this talk of drink🤔 well it is a sunny Sunday afternoon, I wonder what I should do next.

Rgds

Dave

User
Posted 05 Jun 2023 at 20:03

Originally Posted by: Online Community Member

Hi Big Stan,

Welcome to the Brachytherapy club great to hear you are doing well.I had my Brachytherapy in 2016 and coming up to 7 years in September and getting along ok with Psa 0.04 and signed off by Specialist in 2021.I don't drink much coffee but continued to drink white wine after my operation with no real problems apart from visiting the toilet a bit more.

Good to see Matron and Chigwell on your case they are the Egg Heads of our extended family on here with endless knowledge.

Good luck John.

 

Thanks John, good to hear your success (both in radiotherapeutic and medicinal drinking terms 😉) - I'm sure it will continue 💪

User
Posted 05 Jun 2023 at 20:07

Originally Posted by: Online Community Member
I have extensively tested the quantity of red wine and it is not a problem. I use to be a beer/real ale drinker and that can cause problems. The most I have tried was two pints of beer in a pub with a meal. The walk home was only 43 minutes however at 40 minutes my bowels said enough is enough😳 Luckily there was plenty of woodland around!🤣Guinness seems to be the exception to the rule. I can drink that normally and it does not seem to adversely affect me🍺
All this talk of drink🤔 well it is a sunny Sunday afternoon, I wonder what I should do next.

Rgds
Dave

Hopefully the Monday after the sunny Sunday hasn't caused any problems Dave 🤣

Interesting comments, I have now also tested most beverages and am delighted to report that so far, nothing seems off limits - I hope that continues! I'm a big real ale fan too and I think my local landlord was as relieved as anyone to see me back 🤣🤣

User
Posted 05 Jun 2023 at 20:56

"Guinness seems to be the exception to the rule. I can drink that normally and it does not seem to adversely affect me🍺"


Bizarrely, Guinness is the only drink that really causes John a problem!

 

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

User
Posted 19 Jun 2023 at 22:13

31 days post procedure now and happily, still nothing ominous to report.

Had my 4 week MRI and CT scan on Friday to check the quality of the seed implant and the positioning of the rectal spaceOAR - I don’t think I mentioned the spacer previously - probably because I’m not aware of it so it wasn't at the forefront of my thoughts but nevertheless, I hope it’s doing a good job! I have a follow up this coming Friday to tell me how it all looks so hopefully I'll know more then......

Urinary function is normal although ‘normal’ might be as a result of the Alfuzosin (I’ve forgotten to take it a couple of times and immediately felt more urgency the following day – not sure if that’s psychological or not?)

Sexual function is normal - I'm happy that the bloody ejaculate is no more because that’s really gross(!), happier still that I haven’t passed a seed in the ejaculate so far (even though the chances of that happening are tiny anyway).

As expected, the actual ejaculate itself has reduced to a minimal amount and the resultant sensation on orgasm was initially most definitely different! A couple of weeks ago, I wasn’t at all impressed with the new ‘sensation’ but with hindsight, I think that may have been mostly down to the post op trauma. Now that everything has settled down, the sensation has become much more pleasurable and probably just as pleasurable as pre op (if you don't mind the lack of ejaculate). Hopefully that’s the new norm and future radiation build up doesn’t have a negative impact!

User
Posted 22 Jun 2023 at 22:28

Hey there 

Great to read that all is going well for you. 
Im 44 and was diagnosed last week G6 T1 and have 3 months to choose either RP or BT, due to family history they ruled out AS, all on my bio. 
Your thread is very helpful thank you. 
Carl

User
Posted 25 Jun 2023 at 22:41

Friday saw my follow up with my Oncologist exactly 5 weeks post procedure to review MRI's and CT scans.

MRI was simply to look at the SpaceOAR which seems to be in a great position protecting the rectum.

CT showed 75 of the seeds behaving but 1 little fellow has decided to go walkies and ended up in one of the seminal vesicles! 😡

In fairness to my seed friend, it may not have actually gone walkies but accidentally placed there during the op. However it got there though, the Onco says it's all fine and it's not going walkabout again! I'm happy with the explanation, so all good!

As he showed me the scan, he half jokingly said "and they say we can't treat the seminal vesicles...well there's the proof we can!"

So, if irradiating the seminal vesicles with Brachy becomes a thing in the future, perhaps someone here can cite me as a pioneer?! (maybe the Onco should get a cursory mention too 🤷‍♂️?!)

Other than that, nothing else to report. I take one Alfuzosin tablet a day with dinner and everything seems to be working ok. 🤞

User
Posted 27 Jun 2023 at 08:28

Hi Stan,

Many thanks for sharing your experience.

Were you offered HRD Brachytherapy?
Or do you have any thoughts on it?

I’ve been offered it  over radical prostatectomy. I’m starting to think LDR Brachytherapy followed by external beam therapy is a better option.

Anythoughts would be much appreciated. 
thanks,

Gary

 

User
Posted 27 Jun 2023 at 08:31

Hi Carl, 

Have you been offered HRD Brachytherapy as a mono treatment or LDR Brachytherapy followed by external beam? 
Regards

Gary

User
Posted 27 Jun 2023 at 13:40

Originally Posted by: Online Community Member

Were you offered HRD Brachytherapy?
Or do you have any thoughts on it?

I’ve been offered it  over radical prostatectomy. I’m starting to think LDR Brachytherapy followed by external beam therapy is a better option.

Hi Gary,

No, I wasn't offered HDR Brachy. I was T2 and although I read you say elsewhere you were T3, I'm afraid I know very little about why HDR might be preferred for your staging. Perhaps someone else will chime in with an opinion but regardless, it's something I would be asking your consultant if you can. 

I know when I asked my consultant why I wasn't going to have IMRT as well as LDR he said it was unnecessary for my staging and that 'Brachy Boost' was only given if it was for higher staging. From that, you might infer that LDR Brachy Boost could be appropriate in your case, but like I say, it's definitely one I would hope your consultant would be able to explain instead of just guessing here!

My Dad was diagnosed T2 but because of the location of his tumours being very close to the edge and apex of the prostate there were concerns that there may have been some penetration outside the capsule that hadn't been picked up by his TRUS biopsy or scans.

He was living in the US at the time and they hit him with a very short course of HT, IMRT and LDR Brachy. 17 years later his PSA is less than 0.01

Paul

User
Posted 27 Jun 2023 at 16:11

Many thanks Paul, 

User
Posted 18 Jul 2023 at 21:57
Hi All,

It’s now 60 days since my LDR Brachy procedure. That also means I’m half as radioactive as I was on day 1!

As before, I haven’t really got anything interesting to report at this stage. The post procedure recovery has been remarkably unremarkable – everything works and there have been no problems. I have been a little more lethargic and tired than I was before but whether that’s actually down to the treatment or just psychosomatic I couldn’t tell you.

I still have a little more urgency from a urinary function perspective but nothing too troubling. I take my Alfuzosin with my evening meal and I really only notice the increased urgency in the late afternoon when presumably the Alfuzosin from the previous day has pretty much worn off. I still only get up to pee once in the night which I've been doing for years anyway so no difference there!

I’ve generally just got on with life as normally as possible in the last 60 days and don’t think the treatment has had any adverse impact on that – I’ve been to a concert, had many social engagements, played golf regularly, walked the dog, cut some huge hedges in the garden(!), been on holiday to Tenerife (4+ hours on a plane), played more golf and also continued working throughout.

First PSA test and next follow up is early September which will be just under 4 months since the procedure. I’m unsure what to expect or hope for in terms of PSA except ‘as low as possible’ but am aware now that it’s probably one of the few questions I glossed over with my consultant pre procedure. I think I remember him saying it might take 3 years to get to it’s lowest level but that seems an awfully long time and I wonder if I’ve recalled that wrongly? Time, I suppose, will tell!

Cheers, Paul

User
Posted 19 Jul 2023 at 07:59

 

Hi Paul,

I’m 56, T2a, Gleason 7, seemingly all contained with the prostate.

It’s impossible to know for sure, but from the research I’ve done, I think you’ve made absolutely the correct choice.

My consultant push me down the HDR-Brachytherapy route which is a good option for me over RP but I subsequently discovered, via many hours of research, definitely isn’t as good as seeded LDR-B in terms of long term outcomes. 

My sources were Leeds Training hospital, British Colombia & Harvard University hospitals. Their studies were concluded in 2023 & 2020, the most recent I could find.

The general conclusions were that the gold standard in treatment seems to be a combination of seeded LDR-B and hormone, (possibly combined with external beam).

I’d advise anybody to question the advise given by their consultants. 

It’s difficult & upsetting but they can have a bias towards a treatment that suits them best rather than the patient’s long term outcomes. 

 

My consultant told be categorically that HDR-B as a mono-therapy was my best possible option. I later found out that there is very little to zero data to support his statement as HDR-B is still in the very early stages. The little data that has been collect suggests LDR-B is much better as ironically the low dose permanent seeded delivers a much higher and more effective dose of targeted radiation than HDR-B.

I can only make assumptions as to why my consultant gave me false information but I do know that HDR-B is a significantly cheaper and easier to administer. 
regards

Gary

User
Posted 14 Sep 2023 at 17:16

Thought I would update here after my first 4 monthly post procedure PSA test and consultant follow up.

In the 4 months post procedure, PSA has dropped from 6.55 pre procedure to 2.12 .

Yesterday I was more than a bit disappointed with the fall. I had hoped/expected it to be more dramatic especially as I’d seen quite a few members on here who had dropped from higher initial readings than mine to readings of under 1.0 within the first three months.

However, I’ve been reassured today by my consultant that he sees the decrease of 68% as actually very good. He said it was as good as he hoped for and that the drop in younger men is not usually as rapid as it is in older patients.

He also warned me that it would go up and down over the next few years and not to panic! I was already aware there would almost certainly be a PSA bounce at some stage but he reiterated that the fluctuations are greater in younger men. It looks like I might be in for some nervy times ahead!

My consultant said his hope was that the PSA would ultimately drop to below 0.5 after 3 years. Again, I would have thought/expected/hoped it would be lower – under 0.2 in my mind but I’m not the one that has done more than 1,500 Brachy procedures and spent my life dedicated to all things prostate so I suppose I should go with his read and not mine!! 😆

So all in all, feeling pretty satisfied at this stage with my initial concerns reassured. Time to forget about it for another 4 months now!

From the physical side of things, everything continues to be pretty close to perfect. Initial minor urinary urgency and frequency has now become unnoticeable although I am still taking Alfusozin daily (but advised today to ‘trial’ taking it every other day from 6months).

I now take half a 10mg tadalafil tablet 3 times a week as well which I’m not sure is absolutely necessary but it has made me feel like a teenager again so I’ll stick with it for the time being! 💪😂😂 The dry orgasms are becoming less dry by the week which has helped to make the feeling of orgasm much more ‘normal’ again.

I literally have to pinch myself sometimes at how smooth this whole process has been up to now. In and out of hospital within hours on the day of the procedure. Only very minor urinary side effects for a few weeks post procedure and back to normal life without compromise within days.

Let’s just hope all that stays the same for another 30+ years! 🤞

Edited by member 14 Sep 2023 at 17:26  | Reason: Grammatical corrections!

User
Posted 15 Sep 2023 at 12:30

Hi Stan,

Many thanks for your post. 

I had HDR bracktherapy as a mono-therapy which was two operations 1 week apart. This was not the permanent seed implants and no hormone or external beam radiotherapy.
Did you have the HDR brachytherapy - just the two operations? 

Pre-op my PSA was 8.9, I had a blood test after 6 weeks and it was down about 30% to 6.1. 
I asked my consultant what he’d expect my PSA to be at the two year mark, he told me he couldn’t say as it varies! He didn’t know basically. 
Exactly like you my only reassurance is that he’s the expert and I’m not. 
But my two nagging concerns are firstly - I’ve heard from credible sources that 0.1 to 0.14 is technically a definition of cure, anything above 0.2 after 3 years isn’t good.
Secondly HDR brackytherapy as a mono therapy is new, and the quantity and maturity of the data to make any assessment of long term success simply isn’t available. I know it’s passed clinical trials but no knows if it’s a good treatment long term. I’m sure they wouldn’t use it unless they thought it was a good option but my nagging doubt tells me I’m one of so many Guinea pigs.
it’s a very different treatment to low dose seeded brackytherapy for many reasons. 

I wasn’t told this when considering the treatment options.
I’ll update future tests on this thread. 
I’m 56 and will definitely be asking for some of that tadalafil!!

Staying Positive!!! 

Thanks again

 

 

Edited by member 15 Sep 2023 at 12:33  | Reason: Not specified

User
Posted 15 Sep 2023 at 21:25

Hi Buster, I had LDR Brachy not HDR.

I wouldn't get too caught up in chasing numbers at this point. Yes, everyone will naturally and subconsciously have 'targets' but I'm absolutely certain the professionals know more than we do!

I've also seen the sub 0.2 target after a couple of years touted as the 'definitive' number and I'd be very happy to get there but I also think PSA readings with this type of treatment (as opposed to RP) are universally accepted to be subject to sometimes fairly wide ranging fluctuations within the first 3 years for all sorts of reasons.....

If you show me google research saying 0.2 is the bee all and end all I'm sure I can show you google saying it's not! For example, look at this graph from this article

PSA Trend for a 46 year old man after LDR Brachy 

Possibly the biggest downside to the route we've chosen is you might not know 'definitively' (although there is no such thing as definitive with any treatment choice, at any time!) where you really are for a few more years. 

But would you be any happier finding out immediately after RP that although your PSA was undetectable, you had positive margins and what that might mean for the future?

I'm not very good at not being in control but having made my decision, I'm going to try my best to trust the advice and opinion of the professionals and enjoy the next 3 years as much as I can (with obvious terrible anxiety every 4 months when it comes to testing time! 🤣)

So far so good though....must now go and book tomorrow's Tee time! 😉🏌

 

User
Posted 16 Sep 2023 at 09:14

Many thanks Stan,

From the research I’ve seen I believe you’ve made the right choice in LDR. The largest study, conducted by British Columbia university hospital showed around 90% of patients hitting sub 0.2 at the the 10 year mark. Seems like the gold standard. They attributed the success to the fact that, ironically, LDR brachytherapy gets much higher doses of targeted radiation into the prostate than HDR. Also much less margin of human error. I think you’ve had the gold standard in my view.

Good luck my friend and thank you.

 

User
Posted 16 Sep 2023 at 12:27

Hi Stan,

https://youtu.be/jY9oZ6iiVq4?si=P_sHs50-Ej1jGR3U

This is great over view of LDR -B and where PSA levels should be. Dr Juanita Crook is a recognised leading authority and chair of the American Brackytherapy Society.

 

User
Posted 19 Sep 2023 at 10:05

Hi Stan, 

Sadly the article you’ve posted is a decade out of date- 2012,  this has been updated by the 2022 seminar that I posted earlier. The seminar gives the results of the largest Brachytherapy study conducted and, more importantly,  time tested. Following any Brachytherapy treatment we all need to end up with a PSA of sub 0.2 or below according to the latest, substantiated, data available. PSA 0.1 is the clinical definition of cure. It’s worth remembering that we’ve effectively had our prostate, or the bulk of it, carefully removed by way of targeted radiation so our PSAs should be very low, sub 0.2, and would not the same as a middle age man with a normal health prostate (PSA 2.0 to 3.5)

The very good news is that LDR brachytherapy as part of a multi therapy has been proven to be very successful as a curative option.👌


Gary

 

 

 
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