PSA detectable 9 months post RARP

User

Posted 09 Apr 2024 at 19:38

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 19:46

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 19:54

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 21:42

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 10 Apr 2024 at 00:25

Originally Posted by: Online Community Member

Lynn obviously forgot about me 😀, 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 10 Apr 2024 at 00:29

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 09:41

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 10:46

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 11:32

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.🙂

Edited by member 10 Apr 2024 at 11:55 | Reason: Typo

User

Posted 10 Apr 2024 at 12:10

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 13:02

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 13:09 | Reason: Not specified

User

Posted 10 Apr 2024 at 13:05

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 13:08

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 13:11

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 13:16

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 15:07

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 15:53

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.🙂

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

Edited by member 10 Apr 2024 at 20:41 | Reason: Additional text

User

Posted 10 Apr 2024 at 20:33

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 15:27

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.

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