HT- How long is long enough?

Hello Castor, oh! Your post so resonates with me!  My husband was diagnosed with prostate cancer last autumn T3nomo Gleason 4+3 = 7 last autumn. They were not sure whether one of the tumours was bulging against the prostate wall or had broken through. Apparently the rationale is to treat for the worst case scenario.

so, he commenced on hormone therapy last November with RT ( 20 fractions) finishing March 4 th 2023. In November he was told the HT would be for 2-3 years. In December he was told it would be for 6 months total. In March he was told it would be for 18 months total. Last week he was told it will be for 12 months!

his first PSA after RT was end of May 2023 - 0.06. 

like you he is really struggling with the ht. he has aged 10 years in this short time ( and more!). There is, apparently evidence to support 2-3 years ht for aggressive pc. There is evidence for shorter term ht for less aggressive cancer. There appears to be little evidence for intermediate cancers.  The oncologist told us that the ht and RT route is a once only chance at cure and so should not be jeopardised by cutting it too short. He also told us that you have to balance potential cure with potentially devastating side effects of ht. ‘devils advocate’ springs to mind!

so, we plod on, my husband had his last 3 month decapeptyl at the end of May so the decision is temporarily out of our hands!

im sorry I can’t answer your question but I hope my reply gives you comfort in knowing you are not alone in this situation.

best wishes

Hello Castor

It's one of the questions in life that hasn't got a correct answer.

My "team" at the hospital have me on 2 years HT post RT - I am on 6 monthly injections of Decapetyl and yes there are side effects but I am coping well with them.

I am aware of the medical view and I understand why I am on the injections. I don't want them however I know it's for my own good and I know as I have been told all along "with the intention to cure". I am going to stick with it for another 18 months (I had one injection last week - so two more to go!!).

This is my view and my view only and not medical advice. You are 85, married and have had a good life - you have a supportive wife, have a chat with her, if se agrees, ask the GP to drop the HT and just keep an eye on your PSA every 3 months. Surely if it increases over say 9 months - go back on H T. If it stays low - happy days.

Caster - it's what I would do if if was in your situation at your age - but I hope it helps.

Good luck pal.

Kind Regards

Brian.

Hi C , always a difficult one.

I presume that they want to keep you on it because of spread to the bladder. Obviously  the more the cancer is outside the gland the greater the risk.

I see your reluctance to stay on it especially for the full term, trouble is no one really knows if the longer the term on HT the more it helps.

If it was me I think I would try and give a break after 1 year and then monitor the PSA to see what happens.  It shouldn't be forgotten that HT doesn't necessarily keep the cancer at bay forever so those two years could be used later on if needed.

Just a thought and don't forget only my opinion so def doesn't

mean it's the right thing to do.

Suppose the only other thing to consider is that the specialists may not take too kindly to your decision , obviously you would have to break it to them gently , see what their thoughts are as well.

good luck

Steve

I’m 3B possible 4, surgery not an option as it’s escaped somewhere!

my plan is (done RT), 3 years ht. I’m at a point where I’m thinking I was all ok before this diagnosis. I read so many different time plans for others so why am I 3 yrs? I’m only 1 year in and whilst the side effects are lovable, mainly tired, fatigue, a few hot flushes and ED  Just started to feel arthritis type joint pains, I feel  like I’ve aged 10 yrs in my mobility in the last 6 months. But if you saw me I’m a picture of health… until I move or get up  

I asked at my latest appt if 3 yrs is a catch all number or if my plan is my personal plan. Not a std for all. 
she said it’s my plan, based on all my numbers and things. But she also said that 2 years is a minimum, if the symptoms of hormone treatment are ruining my quality of life, we could stop at 2 but she’d like 3 yrs. 

As I feel now with a recent deterioration in mobility, I think 2 yrs is going to my maximum, I was heartened they will consider quality of life. But then my question will be how will that affect the cancer? Will it limit my life expectancy?

Hi Castor 

I was 71 in 2018 when diagnosed as T3A N0 M0 with a PSA of 11 (up to 15 by the time treatment started) and a Gleason score of 4+5=9. I was initially told I would be on HT for at least two years but this was later changed to three years. We moved house in the first week of lockdown in 2020 and are now under a different NHS trust but still in Scotland. After many months my medical records eventually caught up and I received a letter from the new Urology department saying that I should stop HT after two years as that was "their policy". Knowing that had originally been moved from two years to three I contacted the nurse Consultant at the original hospital and asked his opinion. His advice was that "If I was tolerating the HT OK I should stay on it for the full three years as they had made that decision based on the aggressiveness of the cancer.

I was tolerating the HT fine so I decided to keep on with it for the full three years. It is now two years since my last Prostap injection and my last three PSA tests (6-monthly) have all come back as 0.2, so currently in remission. I am happy that I decided to keep on with the HT as I would be deeply disappointed if my PSA was rising and I hadn't given it my best shot.

Hi I’m new here so bear with me but my hubby has been on ht for what seems like forever. He’s had a couple of types but eligard has been his poison of choice for a number of years. Muscles have disappeared and now I am the strong one (always knew I was) he now knows what hot flushes are like (welcome to my world) he jokes he now likes chick flicks and girly things. The upshot is it has been beneficial so who cares how long he takes it “if it ain’t broke don’t try to change it “. We know this prostate rogue loves testosterone so starve it as long as you can. OKaos