I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

PSA detectable 9 months post RARP

Email this conversation Print this conversation
User
Posted 26 Dec 2023 at 20:06

Hello 

I’m a new bee and this is my first post to seek views and advice….

I’m 59 yrs old, diagnosed with localised PCa in Jan 2023 (both biopsy and post RARP histologies). PSA at diagnosis (asymptomatic) was 5.0 and Gleason 7 (3+4) both on biopsy and post op. Had RARP in March 2023. Very luck Op went incredibly well with total nerve spared and zero incontinence.

PSA at 3 & 6 months <0.025, Shockingly 0.051 December 14th.

surgeon said to see next test result in March 2024 and if =>0.1 would refer to oncologist for investigation and treatment options. Can’t stop thinking about it and probably the worse, as much as I try. Worried about w3 months wait whilst the bugger spreads.

What to do as seriously thinking of contacting nurse to explore referral to oncologist?

Thanks in advance. Eddie 

Edited by member 27 Dec 2023 at 08:01  | Reason: Typo

User
Posted 09 Apr 2024 at 14:15

Hi

This is my first post.

Just to say that there is an interesting discussion of a recent research paper on this topic in this youtube video

https://www.youtube.com/watch?v=cyY0nHXvzGc

But do bear in mind that the commentator, Dr Scholz, is based in the USA.

Kevin

User
Posted 27 Dec 2023 at 00:20

Your PSA is about 1% of what it was pre surgery. It was fully nerve sparing, presumably the surgeon could see no cancer near the nerves and hence did not cut out aggressively close to the nerves as a result. You probably have prostate cells in that area still producing PSA. The big question is are they healthy or cancerous prostate cells in that area? With a rising PSA, we probably have to lean towards, yes they are cancerous. These are very small numbers and as Adrian has just said slight errors in tiny numbers look like big changes.

If an oncologist saw your figures I am pretty certain he would say "let's do another test in 3 months and see if anything is happening". I very much doubt he would order any tests or scans at the moment as, if you have cancerous cells, they will be too few and small to show up on a scan yet.

On balance I would say, stick with the surgeon until you have got something which is officially classed as recurrence (0.2 or three rises above 0.1) . That way when you do get a referral (if ever) everyone will be singing from the same hymn sheet.

Remember I'm a random guy on the internet, doctors are better at making these decisions than me.

Dave

User
Posted 27 Dec 2023 at 18:43

I know how you feel. 3+4 at diagnosis, successful surgery in March 22 with negative margins (though close) and then told that my PSA was detectable at 0.01. Three rises later, to 0.05, I was told to prepare myself for salvage radiotherapy. I was crushed though I consoled myself that they were playing the odds by going for prostate bed zapping. That happened in May and went really smoothly. I had a blood test before Christmas and back to undetectable. They really know how to use their armoury. So let that be what keeps you positive.

User
Posted 09 Apr 2024 at 13:45
Until the last 3-4 years, it was unheard of on this forum for a man to have salvage RT without HT - all the research has been about how long the HT should go on for. When I first joined the forum, 3 years of HT was the norm for radical RT and salvage RT but then the Stampede trial showed that 18 months of HT has the same impact but with a far shorter time of living with the side effects. My husband had salvage RT about 10 years ago and the original plan was to have HT for a year I think although he persuaded the onco to let him stop after 6 months.

If all the research shows that HT makes the salvage RT more likely to be effective, I would question why anyone would bother having SRT without HT?

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

User
Posted 09 Apr 2024 at 14:55

Originally Posted by: Online Community Member

Hi

This is my first post.

Just to say that there is an interesting discussion of a recent research paper on this topic in this youtube video

https://www.youtube.com/watch?v=cyY0nHXvzGc

But do bear in mind that the commentator, Dr Scholz, is based in the USA.

Kevin

What a great first post, thanks Kevin.

As you later state the Dr mentions relapse, but it's not clear to me whether the outcomes of the trial are the same for those on RT/HT for initial radical treatment and those using it for salvage treatment. Basically it appears to me that radiation treatment has improved so much that HT is no longer required in many cases. I would have therefore thought, that the trial results would apply to both scenarios?

User
Posted 09 Apr 2024 at 15:14

Originally Posted by: Online Community Member
Until the last 3-4 years, it was unheard of on this forum for a man to have salvage RT without HT.

If all the research shows that HT makes the salvage RT more likely to be effective, I would question why anyone would bother having SRT without HT?

Lynn obviously forgot about me πŸ˜€, I had SRT without HT 7 years ago. My consultants thought the HT would make the treatment too toxic. I was having repeat treatment for a urethral stricture.

Five years after SRT I had a lymph node treated with SABR treatment and 9 months after that I had another lymph node treated with SABR and also a  suggestion to have bicalutamide, which I reluctantly agreed too. My last PSA was around 0.4 the next test is in a few weeks time.

Would having HT with the SRT have prevented further progression or was it already on its way or there ? I guess that is what research is all about.

Thanks Chris 

Edited by member 09 Apr 2024 at 15:17  | Reason: Spelling

User
Posted 09 Apr 2024 at 15:21

The Onco I had a consultation with at the Royal Marsden explained the rationale for HT beyond the demonstrable trial results. She said HT does kill some prostate cancer cells (rather than just put them to sleep) she evidenced this with the example of patients who undergo HT with bone mets do not simply have a recurrence in the same place and some spots simply disappear and do not return even when HT is stopped.

What I still can't work out is why some Oncos jump right in with SRT and HT at 0 1 or less others wait until 0.2, some don't to salvage at all and just wait for it to show up!..

I am now back in the NHS as I have retired so I will be seeing yet another Onco who now doubt will say something different to the 2 private ones I have seen so far! Unfortunately (or fortunately??) my case is deemed non urgent so I am on a 28 week wait for my next consult and PSA ..

Edited by member 09 Apr 2024 at 15:22  | Reason: Not specified

User
Posted 10 Apr 2024 at 08:41

Hi Eddie,

I have just had my last HT(Prostap) injection and will have been on it for 2 years….and it’s been 2 years which I hope I NEVER have to repeat.🀞🀞🀞 I was suppose to be on it for 3 years but my Onco was happy for me to stop after 2 years as my PSA was undetectable And it was seriously affecting my QOL. Most of the side effects are liveable with but the joint ache and pain has made me quite immobile. I can’t walk very far and my GP has diagnosed me with Hip Bursitis, which from my research I put down to loss of muscle around the hips. And it’s not because I haven’t been active and tried to keep fit at the gym, walking, cycling and swimming.

Having said all this some people to get through HT without many side effects and I have no idea why.🀷🏼‍♂️

Unlike you though I don’t have a Plan B as this was my primary treatment(not through choice) and the thought of being on this for life if it returns I find VERY scary😱

If you do have HT my advice would be to keep fit and active, and don’t stop even for a short time during your SRT. Get yourself do the gym, do lots of weight bearing exercise and I’ve found resistance bands very good. Also I think the shorter time your are on it the better!

Good luck with your treatment whatever you decide.

Derek

User
Posted 10 Apr 2024 at 10:32

Originally Posted by: Online Community Member
Thanks for sharing the video (watched it and a few others lol!).  I thought it was very interesting and informative on the subject of HT taken in combination with RT.

Hi Eddie.

Apparently, despite having undetectable PSA since my op 14 months ago,  because I was Gleason 9 (4+5) and had EPE, I've got a 60% chance of recurrence. If, I ever need salvage RT, I would like to avoid HT, you'd be crazy not to. The video therefore gave me hope. However, it seems to contradict this

 Conclusions: Salvage radiotherapy combined with short term HT significantly improved 10-years metastatic free survival compared with salvage radiotherapy alone. GETUG-16 considered in the context of previously published results from RTOG-9601, confirm that this strategy can be considered as the new standard for salvage treatment after radical prostatectomy. 

https://ascopubs.org/doi/10.1200/JCO.2019.37.15_suppl.5001

(This research is only 5 years old.)

At times, life, including scientific research, is so confusing.πŸ™‚

 

Edited by member 10 Apr 2024 at 10:55  | Reason: Typo

User
Posted 10 Apr 2024 at 11:10

I don't want to muddy the waters still further but I did come across another interesting piece of research.

For prostatectomy the EAU guidelines apparently define low risk recurrence as having both a Gleason score of less than 8 and a PSA doubling time of more than 1 year. The link below is to a recent article which appears to show that the risk of prostate cancer death for those in the “low risk” recurrence group following prostatectomy is very low – only 4% in the 10 years following recurrence. Figure 2 shows this most clearly. Tantalisingly the authors even refer to other studies which suggest that there may be some categories of low-risk recurrence for which it may be appropriate to defer any treatment. They also conclude that “limiting salvage treatments to patients who might benefit from them should be considered a priority to avoid overtreatment”.

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2809152

User
Posted 10 Apr 2024 at 12:02

Eddie

As you know you and I are following exactly the same path. My onco said I needed HT (6 months) to support the RT but was open to which one I wanted - so based on the conversations on this group I elected for Decapeptyl with 3 monthly injections. Now I had the injection on 2nd April so just a week into it, but so far I haven't had any side effects.
I would say that I have always had fairly low libido so I don't really know if that has been affected but I still enjoy sex twice a week or so it hasn't affected that.

I'll keep my profile updated if/when I get any noticeable side effects.

Edited by member 10 Apr 2024 at 12:09  | Reason: Not specified

User
Posted 10 Apr 2024 at 14:53

Originally Posted by: Online Community Member

Hi Adrian

but isn’t that presentation a bit old - a lot more research has happened in the last 5 years? 

I agree entirely.  I would take more notice of KS25's video link than mine.

What gets me is, whatever new treatments are proved to be beneficial, it seems to take forever to implement them.  Even when new ideas are eventually put into practice, it then seems a postcode lottery if you can get them.

A recent example of this is the reduction to 5 zaps of RT,  for some as primary treatment, instead of 20 or more. It appears from posts on here that some Trusts seem to have adopted it, others haven't.

I'm a little bitter with some of the treatment and lack of treatment I've received, so I maybe biased, but often when I speak to some of the old consultants they seem totally unaware of new progressive treatments and recent scientific research.πŸ™‚

'Old school' is how I'd describe them.

 

Edited by member 10 Apr 2024 at 19:41  | Reason: Additional text

User
Posted 26 Dec 2023 at 23:44

Hi Eddie, 

I had non nerve sparing, RARP in Feb 2023, PSA 6.6, Gleason 9 (4+5). T3a

First PSA <0.02, second <0.05 and third <0.02.

That slight jump in the second reading was put down to the test being done at a different hospital. I'm due another test in three weeks. I've been told that further treatment will be considered if I reach 0.2.

Like you I do fear recurrence and I do dread waiting for PSA results but luckily have managed to control the anxiety. It's sad that our lives seem to revolve around such miniscule numbers, but it is what it is.

I believe about 30% of men need follow up treatment after prostatectomy. But I'll keep my fingers crossed for both of us.

Adrian

Edited by member 25 Jan 2025 at 08:01  | Reason: Put less than signs in PSA readings.

User
Posted 27 Dec 2023 at 09:06
Check out my profile, now 8 years detectable, seen lots of oncologists, they all say the same thing.

Wait until 0.2 for further treatment, it may stabilise under that if it is healthy prostate re growth.

They only "go early" with SRT if there were positive margins or detectable spread to lymp nodes.

If it makes you feel better pay for a second opinion, it helps me!

User
Posted 27 Dec 2023 at 09:14
I'm in exactly the same boat Eddie

RARP in May 2023, first post-op was <0.01 in July but last week it was 0.12 so urgent communication with the consultant who said that they will do 3 monthly PSA tests from now on and only start any further treatment if it goes above 0.2

Psychologically I am gearing myself up for a course of salvage radiotherapy LOL

User
Posted 27 Dec 2023 at 09:46

Thanks Adrian. Everything crossed as you said. I agree results can be spurious in either direction, especially at these small values. I think my knowledge (as a Biomedical Scientist) is not helping me lol!

User
Posted 09 Apr 2024 at 12:37

Hi All

Thought i'd update and get views on HT.

As you'd see from my initial post, unfortunately my PSA = 0.051 (Dec 2023) was 0.099 in March 2024, a near double value.

Surgeon has referred me to oncologist and had my first consultation yesterday afternoon. He's recommended RT of prostate bed and a very soft recommendation of HT.  The HT bit was a shock to me as i had expected RT only since my December result in my head, given the bugger is still localised.  No PET scan due to my low PSA level because of the associated poor detection rate at such levels - he'd usually recommend PET scan at PSA >0.5. 

I'd be grateful for shared experiences and views on use of HT in combination with RT with localised PCa post surgery.  Planning on discussing with PCa nurse asap to understand rationale for the combo and what if HT not taken as oncologist was relaxed about it.

Thanks in advance and good luck all.

Eddie  

User
Posted 09 Apr 2024 at 14:20

I should also add that I'm not sure if this paper's conclusions would apply to radiotherapy being used for salvage as opposed to primary treatment. I have not read the paper itself !

User
Posted 09 Apr 2024 at 18:38

Hi, I had SRT without HT in 2022. My last two PSA results were both <0.010 Where it goes from here is anyone's guess, and I suppose we're all more or less in that boat.

My post op histology had showed a positive margin so my oncologist recommended SRT without HT, (guessing that pointed to the likely source of the increasing PSA). This floated my boat as I really don't fancy the potential side effects of HT. 

Does HT offer more chance of kicking cancer in to touch? It probably does. But I suppose it depends on your feelings about HT and its potential side effects, qol and how long you will be on it etc..

Good luck. 

Kev.

 

 

User
Posted 09 Apr 2024 at 20:42
A few years old now, but this review suggested the criterion for whether HT was needed with SRT was a doubling time <8 months - which Eddie O's seems to be assuming the next reading follows the trend.

https://pubmed.ncbi.nlm.nih.gov/34071587/

My guess is that with PSA rising significantly so soon after surgery the oncologists will want to throw the kitchen sink at it.

User
Posted 09 Apr 2024 at 23:25

Originally Posted by: Online Community Member
Lynn obviously forgot about me πŸ˜€, I had SRT without HT 7 years ago. My consultants thought the HT would make the treatment too toxic. I was having repeat treatment for a urethral stricture.

Ah yes - sorry CC. I should have said 'unless there was a medical reason not to have HT' or something like that. 

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

User
Posted 09 Apr 2024 at 23:29

Originally Posted by: Online Community Member
low risk disease

I get where you are coming from Eddie and, as I said, my OH hated the HT so much he stopped it early. However, I am not convinced that any recurrence should be considered 'low risk' ... the fact is, once you have a recurrence, your chance of full remission drops significantly. It is not easy to make these decisions without a crystal ball :-( 

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

User
Posted 10 Apr 2024 at 09:46

Morning Derek

I'm sorry to read about the negative effects of your HT treatment. Wish you a good recovery and improved QOL from here on, as you're stopping it. Crickey, 2 years and i'm worrying about 6 months!

I'm convinced the reason for my emergence from the surgery unscathed was because of my physical / mental fitness. It was the only time i appreciated the small fortune in gym subscription i'd paid unfailing since 1988 lol!  I know that i would be distraught if unable to exercise and this is one of my fears of the impending treatment. So, good to know it's possible to exercise on the treatment (even if not full pelt!) - thanks for sharing that.

Since my oncology consultation 2 days ago, bloody HT has dominated my thoughts lol. I hope i make the right decision for me in the end.

Have a good day mate.

Eddie

User
Posted 10 Apr 2024 at 12:05

Agree Adrian, everything is confusing - the more one looks the worse it seems to get.  Professionally, i've always known that science is not an exact science lol.  When i told my GP friend that i'd been recommended RT + HT, his first comment was that's a bit heavy for your case in it!

I think most would try to avoid HT if one feels it's safe to do so.

 

BW, Eddie

User
Posted 10 Apr 2024 at 12:11

Here's a bloke who seem to know what he's on about. He covers a lot of research into recurrence and salvage treatment. 

https://youtu.be/JtzK1zgNdK0?si=XGYH_PfF-7BiY88Y

He certainly answered a lot of points that I wanted clarifying.

User
Posted 10 Apr 2024 at 12:16

Good to hear from you Steve. Trust all's going good mate.

My onco recommended HT tablets, as having less side effect.  Must say 3 monthly injection sounds more appealing from convenience stand point.

I'm a bit worried of losing my little libido tbh, a real risk of the treatment down the line.  Good everything is still firing for you mate and long may it last!  I'd be happy if i took it and i can get once a week action lol !

BW, Eddie

User
Posted 10 Apr 2024 at 19:33
Just on the question of HT and side effects. I had Zoladex for 3 yrs (with RT I should make clear) included was 2 yrs with abiraterone/enzalutimide/prednisolone on trial. My treatment finished summer 2018. I certainly suffered all of expected side effects,admittedly pain not near that of Deco for example.

I have to say that I'd gladly do same again but maybe that is influenced by the fact that side effects disappeared and treatment, so far, done what it was supposed to do. This was with PSA 21, Gleason 8 upped to 9 after TURP, slight spread to seminals.

Peter

Show Most Thanked Posts
User
Posted 26 Dec 2023 at 23:44

Hi Eddie, 

I had non nerve sparing, RARP in Feb 2023, PSA 6.6, Gleason 9 (4+5). T3a

First PSA <0.02, second <0.05 and third <0.02.

That slight jump in the second reading was put down to the test being done at a different hospital. I'm due another test in three weeks. I've been told that further treatment will be considered if I reach 0.2.

Like you I do fear recurrence and I do dread waiting for PSA results but luckily have managed to control the anxiety. It's sad that our lives seem to revolve around such miniscule numbers, but it is what it is.

I believe about 30% of men need follow up treatment after prostatectomy. But I'll keep my fingers crossed for both of us.

Adrian

Edited by member 25 Jan 2025 at 08:01  | Reason: Put less than signs in PSA readings.

User
Posted 27 Dec 2023 at 00:20

Your PSA is about 1% of what it was pre surgery. It was fully nerve sparing, presumably the surgeon could see no cancer near the nerves and hence did not cut out aggressively close to the nerves as a result. You probably have prostate cells in that area still producing PSA. The big question is are they healthy or cancerous prostate cells in that area? With a rising PSA, we probably have to lean towards, yes they are cancerous. These are very small numbers and as Adrian has just said slight errors in tiny numbers look like big changes.

If an oncologist saw your figures I am pretty certain he would say "let's do another test in 3 months and see if anything is happening". I very much doubt he would order any tests or scans at the moment as, if you have cancerous cells, they will be too few and small to show up on a scan yet.

On balance I would say, stick with the surgeon until you have got something which is officially classed as recurrence (0.2 or three rises above 0.1) . That way when you do get a referral (if ever) everyone will be singing from the same hymn sheet.

Remember I'm a random guy on the internet, doctors are better at making these decisions than me.

Dave

User
Posted 27 Dec 2023 at 09:06
Check out my profile, now 8 years detectable, seen lots of oncologists, they all say the same thing.

Wait until 0.2 for further treatment, it may stabilise under that if it is healthy prostate re growth.

They only "go early" with SRT if there were positive margins or detectable spread to lymp nodes.

If it makes you feel better pay for a second opinion, it helps me!

User
Posted 27 Dec 2023 at 09:14
I'm in exactly the same boat Eddie

RARP in May 2023, first post-op was <0.01 in July but last week it was 0.12 so urgent communication with the consultant who said that they will do 3 monthly PSA tests from now on and only start any further treatment if it goes above 0.2

Psychologically I am gearing myself up for a course of salvage radiotherapy LOL

User
Posted 27 Dec 2023 at 09:46

Thanks Adrian. Everything crossed as you said. I agree results can be spurious in either direction, especially at these small values. I think my knowledge (as a Biomedical Scientist) is not helping me lol!

User
Posted 27 Dec 2023 at 09:53

Thanks Dave. 
I think the shock of the result has knocked all senses out of me lol - it’s still very raw as consultation was only last week. Hope time will rebalance me and 3 months won’t seem a life time anymore!

User
Posted 27 Dec 2023 at 09:56

Thank you. The tiny 0.2 number has never been more important lol!

User
Posted 27 Dec 2023 at 10:01

Thanks Steve. I think once the shock begins to fade, I’ll start to accept and prep psychologically for further possible treatment.

User
Posted 27 Dec 2023 at 10:19

Originally Posted by: Online Community Member

 I think my knowledge (as a Biomedical Scientist) is not helping me lol!

My youngest son is a scientific researcher (PhD in genetics) and I think the poor lad gets sick of me asking to 'translate' various cancer research papers for me. 😁

User
Posted 27 Dec 2023 at 12:20

πŸ˜‚πŸ˜‚

User
Posted 27 Dec 2023 at 18:43

I know how you feel. 3+4 at diagnosis, successful surgery in March 22 with negative margins (though close) and then told that my PSA was detectable at 0.01. Three rises later, to 0.05, I was told to prepare myself for salvage radiotherapy. I was crushed though I consoled myself that they were playing the odds by going for prostate bed zapping. That happened in May and went really smoothly. I had a blood test before Christmas and back to undetectable. They really know how to use their armoury. So let that be what keeps you positive.

User
Posted 27 Dec 2023 at 20:15

Thanks. Glad that went well for you. As you said it’s crushing at first and guess one then regroups! I’m keeping everything crossed for similar positive outcomes whenever further treatment comes along!

User
Posted 09 Apr 2024 at 12:37

Hi All

Thought i'd update and get views on HT.

As you'd see from my initial post, unfortunately my PSA = 0.051 (Dec 2023) was 0.099 in March 2024, a near double value.

Surgeon has referred me to oncologist and had my first consultation yesterday afternoon. He's recommended RT of prostate bed and a very soft recommendation of HT.  The HT bit was a shock to me as i had expected RT only since my December result in my head, given the bugger is still localised.  No PET scan due to my low PSA level because of the associated poor detection rate at such levels - he'd usually recommend PET scan at PSA >0.5. 

I'd be grateful for shared experiences and views on use of HT in combination with RT with localised PCa post surgery.  Planning on discussing with PCa nurse asap to understand rationale for the combo and what if HT not taken as oncologist was relaxed about it.

Thanks in advance and good luck all.

Eddie  

User
Posted 09 Apr 2024 at 13:45
Until the last 3-4 years, it was unheard of on this forum for a man to have salvage RT without HT - all the research has been about how long the HT should go on for. When I first joined the forum, 3 years of HT was the norm for radical RT and salvage RT but then the Stampede trial showed that 18 months of HT has the same impact but with a far shorter time of living with the side effects. My husband had salvage RT about 10 years ago and the original plan was to have HT for a year I think although he persuaded the onco to let him stop after 6 months.

If all the research shows that HT makes the salvage RT more likely to be effective, I would question why anyone would bother having SRT without HT?

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

User
Posted 09 Apr 2024 at 14:15

Hi

This is my first post.

Just to say that there is an interesting discussion of a recent research paper on this topic in this youtube video

https://www.youtube.com/watch?v=cyY0nHXvzGc

But do bear in mind that the commentator, Dr Scholz, is based in the USA.

Kevin

User
Posted 09 Apr 2024 at 14:20

I should also add that I'm not sure if this paper's conclusions would apply to radiotherapy being used for salvage as opposed to primary treatment. I have not read the paper itself !

User
Posted 09 Apr 2024 at 14:55

Originally Posted by: Online Community Member

Hi

This is my first post.

Just to say that there is an interesting discussion of a recent research paper on this topic in this youtube video

https://www.youtube.com/watch?v=cyY0nHXvzGc

But do bear in mind that the commentator, Dr Scholz, is based in the USA.

Kevin

What a great first post, thanks Kevin.

As you later state the Dr mentions relapse, but it's not clear to me whether the outcomes of the trial are the same for those on RT/HT for initial radical treatment and those using it for salvage treatment. Basically it appears to me that radiation treatment has improved so much that HT is no longer required in many cases. I would have therefore thought, that the trial results would apply to both scenarios?

User
Posted 09 Apr 2024 at 15:14

Originally Posted by: Online Community Member
Until the last 3-4 years, it was unheard of on this forum for a man to have salvage RT without HT.

If all the research shows that HT makes the salvage RT more likely to be effective, I would question why anyone would bother having SRT without HT?

Lynn obviously forgot about me πŸ˜€, I had SRT without HT 7 years ago. My consultants thought the HT would make the treatment too toxic. I was having repeat treatment for a urethral stricture.

Five years after SRT I had a lymph node treated with SABR treatment and 9 months after that I had another lymph node treated with SABR and also a  suggestion to have bicalutamide, which I reluctantly agreed too. My last PSA was around 0.4 the next test is in a few weeks time.

Would having HT with the SRT have prevented further progression or was it already on its way or there ? I guess that is what research is all about.

Thanks Chris 

Edited by member 09 Apr 2024 at 15:17  | Reason: Spelling

User
Posted 09 Apr 2024 at 15:21

The Onco I had a consultation with at the Royal Marsden explained the rationale for HT beyond the demonstrable trial results. She said HT does kill some prostate cancer cells (rather than just put them to sleep) she evidenced this with the example of patients who undergo HT with bone mets do not simply have a recurrence in the same place and some spots simply disappear and do not return even when HT is stopped.

What I still can't work out is why some Oncos jump right in with SRT and HT at 0 1 or less others wait until 0.2, some don't to salvage at all and just wait for it to show up!..

I am now back in the NHS as I have retired so I will be seeing yet another Onco who now doubt will say something different to the 2 private ones I have seen so far! Unfortunately (or fortunately??) my case is deemed non urgent so I am on a 28 week wait for my next consult and PSA ..

Edited by member 09 Apr 2024 at 15:22  | Reason: Not specified

User
Posted 09 Apr 2024 at 18:38

Hi, I had SRT without HT in 2022. My last two PSA results were both <0.010 Where it goes from here is anyone's guess, and I suppose we're all more or less in that boat.

My post op histology had showed a positive margin so my oncologist recommended SRT without HT, (guessing that pointed to the likely source of the increasing PSA). This floated my boat as I really don't fancy the potential side effects of HT. 

Does HT offer more chance of kicking cancer in to touch? It probably does. But I suppose it depends on your feelings about HT and its potential side effects, qol and how long you will be on it etc..

Good luck. 

Kev.

 

 

User
Posted 09 Apr 2024 at 18:46

Thanks Lynn,

I feel it's a bit confusing thanks to improved treatment (across all options) techniques.  These makes the evidence re efficacy of HT + RT weaker compared to years ago, and especially with low risk disease profile. Agree with you that it wouldn't even be a debate few years ago.  As i said in my early post, the oncologist's body language was like it's not a deal breaker and i could even stop it if you don't get on with it! I just want to be able to justify my taking it if i decide to in the end.

Eddie

User
Posted 09 Apr 2024 at 18:54

Hi Kevin,

Thanks for sharing the video (watched it and a few others lol!).  I thought it was very interesting and informative on the subject of HT taken in combination with RT.  I saw other videos / comments also suggesting that HT might not be crucial especially with low risk disease profile.  I guess it's a personal decision in the end....

Thanks and good luck.

 

Eddie

User
Posted 09 Apr 2024 at 20:42
A few years old now, but this review suggested the criterion for whether HT was needed with SRT was a doubling time <8 months - which Eddie O's seems to be assuming the next reading follows the trend.

https://pubmed.ncbi.nlm.nih.gov/34071587/

My guess is that with PSA rising significantly so soon after surgery the oncologists will want to throw the kitchen sink at it.

User
Posted 09 Apr 2024 at 23:25

Originally Posted by: Online Community Member
Lynn obviously forgot about me πŸ˜€, I had SRT without HT 7 years ago. My consultants thought the HT would make the treatment too toxic. I was having repeat treatment for a urethral stricture.

Ah yes - sorry CC. I should have said 'unless there was a medical reason not to have HT' or something like that. 

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

User
Posted 09 Apr 2024 at 23:29

Originally Posted by: Online Community Member
low risk disease

I get where you are coming from Eddie and, as I said, my OH hated the HT so much he stopped it early. However, I am not convinced that any recurrence should be considered 'low risk' ... the fact is, once you have a recurrence, your chance of full remission drops significantly. It is not easy to make these decisions without a crystal ball :-( 

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

User
Posted 10 Apr 2024 at 08:41

Hi Eddie,

I have just had my last HT(Prostap) injection and will have been on it for 2 years….and it’s been 2 years which I hope I NEVER have to repeat.🀞🀞🀞 I was suppose to be on it for 3 years but my Onco was happy for me to stop after 2 years as my PSA was undetectable And it was seriously affecting my QOL. Most of the side effects are liveable with but the joint ache and pain has made me quite immobile. I can’t walk very far and my GP has diagnosed me with Hip Bursitis, which from my research I put down to loss of muscle around the hips. And it’s not because I haven’t been active and tried to keep fit at the gym, walking, cycling and swimming.

Having said all this some people to get through HT without many side effects and I have no idea why.🀷🏼‍♂️

Unlike you though I don’t have a Plan B as this was my primary treatment(not through choice) and the thought of being on this for life if it returns I find VERY scary😱

If you do have HT my advice would be to keep fit and active, and don’t stop even for a short time during your SRT. Get yourself do the gym, do lots of weight bearing exercise and I’ve found resistance bands very good. Also I think the shorter time your are on it the better!

Good luck with your treatment whatever you decide.

Derek

User
Posted 10 Apr 2024 at 09:46

Morning Derek

I'm sorry to read about the negative effects of your HT treatment. Wish you a good recovery and improved QOL from here on, as you're stopping it. Crickey, 2 years and i'm worrying about 6 months!

I'm convinced the reason for my emergence from the surgery unscathed was because of my physical / mental fitness. It was the only time i appreciated the small fortune in gym subscription i'd paid unfailing since 1988 lol!  I know that i would be distraught if unable to exercise and this is one of my fears of the impending treatment. So, good to know it's possible to exercise on the treatment (even if not full pelt!) - thanks for sharing that.

Since my oncology consultation 2 days ago, bloody HT has dominated my thoughts lol. I hope i make the right decision for me in the end.

Have a good day mate.

Eddie

User
Posted 10 Apr 2024 at 10:32

Originally Posted by: Online Community Member
Thanks for sharing the video (watched it and a few others lol!).  I thought it was very interesting and informative on the subject of HT taken in combination with RT.

Hi Eddie.

Apparently, despite having undetectable PSA since my op 14 months ago,  because I was Gleason 9 (4+5) and had EPE, I've got a 60% chance of recurrence. If, I ever need salvage RT, I would like to avoid HT, you'd be crazy not to. The video therefore gave me hope. However, it seems to contradict this

 Conclusions: Salvage radiotherapy combined with short term HT significantly improved 10-years metastatic free survival compared with salvage radiotherapy alone. GETUG-16 considered in the context of previously published results from RTOG-9601, confirm that this strategy can be considered as the new standard for salvage treatment after radical prostatectomy. 

https://ascopubs.org/doi/10.1200/JCO.2019.37.15_suppl.5001

(This research is only 5 years old.)

At times, life, including scientific research, is so confusing.πŸ™‚

 

Edited by member 10 Apr 2024 at 10:55  | Reason: Typo

User
Posted 10 Apr 2024 at 11:10

I don't want to muddy the waters still further but I did come across another interesting piece of research.

For prostatectomy the EAU guidelines apparently define low risk recurrence as having both a Gleason score of less than 8 and a PSA doubling time of more than 1 year. The link below is to a recent article which appears to show that the risk of prostate cancer death for those in the “low risk” recurrence group following prostatectomy is very low – only 4% in the 10 years following recurrence. Figure 2 shows this most clearly. Tantalisingly the authors even refer to other studies which suggest that there may be some categories of low-risk recurrence for which it may be appropriate to defer any treatment. They also conclude that “limiting salvage treatments to patients who might benefit from them should be considered a priority to avoid overtreatment”.

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2809152

User
Posted 10 Apr 2024 at 12:02

Eddie

As you know you and I are following exactly the same path. My onco said I needed HT (6 months) to support the RT but was open to which one I wanted - so based on the conversations on this group I elected for Decapeptyl with 3 monthly injections. Now I had the injection on 2nd April so just a week into it, but so far I haven't had any side effects.
I would say that I have always had fairly low libido so I don't really know if that has been affected but I still enjoy sex twice a week or so it hasn't affected that.

I'll keep my profile updated if/when I get any noticeable side effects.

Edited by member 10 Apr 2024 at 12:09  | Reason: Not specified

User
Posted 10 Apr 2024 at 12:05

Agree Adrian, everything is confusing - the more one looks the worse it seems to get.  Professionally, i've always known that science is not an exact science lol.  When i told my GP friend that i'd been recommended RT + HT, his first comment was that's a bit heavy for your case in it!

I think most would try to avoid HT if one feels it's safe to do so.

 

BW, Eddie

User
Posted 10 Apr 2024 at 12:08

Hi KS,

your're enlightening not muddling the water lol! I believe the more one reads about it, hopefully the better decision one would make for his case - perharps 🀞 

User
Posted 10 Apr 2024 at 12:11

Here's a bloke who seem to know what he's on about. He covers a lot of research into recurrence and salvage treatment. 

https://youtu.be/JtzK1zgNdK0?si=XGYH_PfF-7BiY88Y

He certainly answered a lot of points that I wanted clarifying.

User
Posted 10 Apr 2024 at 12:16

Good to hear from you Steve. Trust all's going good mate.

My onco recommended HT tablets, as having less side effect.  Must say 3 monthly injection sounds more appealing from convenience stand point.

I'm a bit worried of losing my little libido tbh, a real risk of the treatment down the line.  Good everything is still firing for you mate and long may it last!  I'd be happy if i took it and i can get once a week action lol !

BW, Eddie

User
Posted 10 Apr 2024 at 14:07

Hi Adrian

but isn’t that presentation a bit old - a lot more research has happened in the last 5 years? I was thinking that the results of the RADICALS—HD trial (pub 2022) and a paper by Elaskshar et al. (2023) salvage whole pelvic radiation and long- term ADT in the management of high risk, prostate cancer: long-term update of the MacGill, 0913 study might be more relevant for some? Certainly pointing at 24 months ADT for my high risk OH sadly . Just a thought. 

User
Posted 10 Apr 2024 at 14:53

Originally Posted by: Online Community Member

Hi Adrian

but isn’t that presentation a bit old - a lot more research has happened in the last 5 years? 

I agree entirely.  I would take more notice of KS25's video link than mine.

What gets me is, whatever new treatments are proved to be beneficial, it seems to take forever to implement them.  Even when new ideas are eventually put into practice, it then seems a postcode lottery if you can get them.

A recent example of this is the reduction to 5 zaps of RT,  for some as primary treatment, instead of 20 or more. It appears from posts on here that some Trusts seem to have adopted it, others haven't.

I'm a little bitter with some of the treatment and lack of treatment I've received, so I maybe biased, but often when I speak to some of the old consultants they seem totally unaware of new progressive treatments and recent scientific research.πŸ™‚

'Old school' is how I'd describe them.

 

Edited by member 10 Apr 2024 at 19:41  | Reason: Additional text

User
Posted 10 Apr 2024 at 19:33
Just on the question of HT and side effects. I had Zoladex for 3 yrs (with RT I should make clear) included was 2 yrs with abiraterone/enzalutimide/prednisolone on trial. My treatment finished summer 2018. I certainly suffered all of expected side effects,admittedly pain not near that of Deco for example.

I have to say that I'd gladly do same again but maybe that is influenced by the fact that side effects disappeared and treatment, so far, done what it was supposed to do. This was with PSA 21, Gleason 8 upped to 9 after TURP, slight spread to seminals.

Peter

User
Posted 25 Jan 2025 at 14:27

Hi all

Thought I’d update on my last post.

I had 20 sessions of RT between June - July 2024 for prostate bed salvage.  Luckily I didn’t have to “continue with HT” after my last PSA couple of days before start of HT had stabilised at 0.099. As it happened, I took HT on day 1 and got a call from Onco later in the day not to start or stop if I’d started it.

RT went well but not without expected side effects; increased frequency and intensity of bladder and bowel action. The loss of bladder control was interesting lol and resulted in wetting myself in the RT changing room, between getting out of the car and house front door, between running from office to toilet. Luckily didn’t have any bowel accident. Also lost hair in the groin area.

Good news I’ve not had any long lasting side effects from the RT 6 months on. All of the side effects resolved very quickly once the treatment ended. The hair loss reversal took longest at 2 months - I was quite happy with the hair loss tbf!

So far so good with first 2 three monthly PSA results coming back at <0.025 (not detectable by my testing lab linearity). Very happy but can’t forget Ive been here before after my RARP when the first 2 PSA results were <0.025.  Fingers cross for me and for us all dealing with this condition.

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK