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Treatment choice at 48 and starting my LDR Brachytherapy Journey

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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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