Hi, I was diagnosed in sept 22. Psa 10, 3+4 Gleason and T3b….it had spread to seminal vessels, I’m 65 now.
the only option I was given at the time was RT and 3 years of HT (prostap injections).
I completed RT 17 months ago and continue with HT. I have a range of side effects associated with RT/HT.
my last two PSA results where 0.04 & 0.03.
my HT is due to continue until Dec 2025.
I am due to see my oncologist Jan 25.
my question is why do I need to stay on HT for 3 years. Is there any evidence out there (I can’t find any that suggests the longer you are on HT the better. However there is evidence out there to suggest the sooner you can come off HT the better).
I know ultimately the decision is mine but I want that to be an informed decision.
I want my life to return to normal sooner rather than later and if staying on HT for another year will give xxx number of years longevity then that is something I would consider…..but is there evidence out there that would be the case.
when I had my original treatment plan I didn’t have the knowledge and experience I have of PC that I have now but I do remember the consultant saying “ you will have the Gold standard treatment of RT/HT for 3 years”. I didn’t question this but on reflection it seemed to be a one cap fits all treatment and no consideration of how well the treatment progresses for the individual?
Any thoughts
thank you
Hi Brizzy
This gets asked a lot and I think your main issue is the fact that it's in the vesicles as well.
Sometimes I think it's a belt and braces approach which seems to work well if cancer a T3.
Possibly questionable if all stats low through although I realise time on HT would be less.
Length of time is down to type of spread, possibly if just outside the gland then less time on HT but in your case 3 years probably about right although u could query it at the next meeting.
Best wishes
Steve
What a very good question. What is the definition of 'long term'? I have found this review which classifies it as 18, 24, 28 and 36 months. The type, dose and extent of RT play their part in the equation but one bit is of interest in that LDR Brachytherapy in addition to EBRT, even for high risk patients, improves outcomes in terms of progression free survival.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8428221/
There has been some work comparing 18 vs 36 months for high risk LOCALISED prostate cancer which shows that the 36 months did not give any benefit over 18 months.
One thing to take into account is your initial spread of T3b which is very high risk, although your initial PSA and Gleason might ameliorate this, but your current PSA is very low so maybe you are a candidate for stopping HT earlier than originally planned. Definitely one question for the experts at your meeting in January.
Thank you your reply and the links you have providec
Hi Brizzy1 , that is a really good question. It is the only aspect of my treatment that I would question (in hindsight) and I have been on HT over 7 years since diagnosis. In my case the PCa has recently metastasised, so if I hadn’t been on HT all that time, would the spread have occurred earlier or if not, would going back on HT be more effective? I am not sure how much evidence there is as it takes time to gather once a ‘new’ standard plan is tested. I am on the Stampede trial, so hopefully my data is being used for future guys. I have faith in my oncologist and I think although I have ideas about what is best, she is very aware of the latest thinking, so I generally stick with her first plan, but she is open to suggestions. David
Hi David. I think a lot depends on the level the PSA goes down to after initial radical treatment. If your PSA drops to negligible levels there seems to be an argument to try intermittent HT as this is thought to prolong the time before the cancer cells find a way of getting round it.
Hi AH, totally agree. My PSA went to <0.1 but in those days I don’t think intermittent had really been explored in the UK. David
Just to add to this question at the surgery I was at when my PCa was diagnosed there were two men there who had been on HT for over 20 years each and one was 93. It was the only treatment given to them at the time - I don't know any other details of their cancer though. Definitely something to discuss at your next meeting if your side effects are really too much to put up with or ask about medication/treatments to help alleviate the side effects.
Hi !
When having high risk cancer the recommendation is 3 years of ADT. If they added some sort of radiation boost (HDR, LDR or SBRT) that might shorten the time on ADT.
Why you need to stay on 3 years of ADT is mostly, because you have high risk cancer the first years are the most likely that you will have a recurrence if you don’t make sure to create a hostile environment for the radiated prostate cancer cells to survive in ( e.g. being on ADT )
Now with never scanning methods and more precise and also higher doses of radiation perhaps 3 years is to much but the jury is still out on the duration so why not focus on playing the long game and minimize the risk of recurrence? So, perhaps you don’t need 3 years of hormone therapy but why gamble when you’ve already done 2 out of 3 years? Just saying
Best wishes - Ulf
Hi Brizzy,
i don't know but i think its a great question that also provokes further thought. From my own perspective, I understood that if guys with high grade cancer like myself ( Gleason 9) elected to go down the radiation route, we committed to hormone therapy, but what was not made clear to me were the devastating effects of this therapy.
I know that Mark Sholz MD on you tube,believes that there is enough evidence in the US to suggest that 24 months is no more beneficial than 18 months. I elected not to have my 8th injection, and stopped at 21 months. Was this a poor decision? I don't know, but I decided that the rising triglycerides, the increasing breasts and the shrinking balls needed to stop.
Now, what is really interesting about your question is that those of us who are unfortunate enough to face recurrence will end up on more HT and will eventually become resistant to it. So, if this is the case and if it were a scenario that you would, in time face, would it be detrimental to your situation if you had been on the HT longer? In other words, does a longer initial exposure to HT mean the effectiveness of the second round would be diminished? Now forgive me as I am no wordsmith but hopefully you get my drift.
C&TUS'S
Hello All
Let me add my personal thoughts to this thread (these are my personal thoughts and nothing to do with me being a Community Champion!!).
My original diagnosis was Gleason 7 (4+3) T3aNXM0 Initial PSA 182. I was in hospital at the time of diagnosis as my prostate tried to kill me!! I was put on HT from the get go. At my MDT meeting 2 weeks later it was HT/RT and HT for 3 years. The initial thoughts being with a PSA of 182 the little bastards had gone for a trip round my body.
12 Months later after a TURP operation the "chips" from my operation had me "upgraded" to a Gleason 9 (5+4) and T3aN0M0. Oncology decided the shadow on my pelvis wasn't a spread but during RT "zapped" my pelvic lymph nodes just to be sure.
So, apart from a couple of weeks I have done 3 years on HT - yes I have had almost every side effect going, itchy skin, weight gain, moobs, I can cry for England, hot sweats, loss of body hair and muscle mass oh I almost forgot my testicles and penis have shrunk and I have lost my sexual desire.
Would I do it again for those magic words - "Curative Pathway" - yes I bloody well would!! . Mentally I am in a good place, my body has taken a hit but I am in my 70th year on earth so all is good. During the 3 years I have had 2 periods of doubt but the Community and Mrs M supported me and I bounced back.
To me - if 3 years is needed for a potentially Curative Pathway then bring it on. I realise it's not for everyone but if I can do it - you can!!
Let me say again, this is my personal opinion.
Best wishes - Brian.
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