Ending hormone therapy after Radiotherapy

User

Posted 26 Oct 2018 at 09:21

The waiting on my last stretch of mainstream PCa treatment is nearly over. I have my PSA blood test Friday 2nd November and Oncologist review on Thursday 8th. I have been blithely saying I will stop HT after 18 months, due to the well known side effects, but as the decision date moves closer it weighs heavy on the mind. To be honest today I don’t know what I will do on the day, depending on my PSA results.

User

Posted 26 Oct 2018 at 10:26

Best wishes with the results Pallance - seems sensible to leave decision making until you know your PSA and have discussed with the onco. And remember, even if you decide to continue with the HT it isn’t a permanent decision; you could stop in 3 months, 6 months, 9 months if you changed your mind.

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

User

Posted 26 Oct 2018 at 10:30

i think the time on HT varies on different onco's opinions.

I'm G9 T3a and still pre HDR brachy and radio therapy treatment, but my onco is advising 18 months on HT.

At my last meeting with my onco, I queried the 18 month time frame, but she was very confident it would be no than this.

I guess it may also have something to do with number of cancerous cores found on biopsy and where the cancer is. My T3a diagnosed is stated as early T3a due to capsular irregulatiy, but cancer still contained within the prostate.

Anyway for me next meeting with onco on Monday 29th Oct, for planning the HDR beachy and radio therapy, which fortunately can now be conducted before Christmas after initially being advised it wouldn't be before January 2019.

Edited by member 26 Oct 2018 at 10:33 | Reason: Spelling.

User

Posted 26 Oct 2018 at 10:36

Best of luck Alan with your next PSA test. I had serious thoughts about finishing at 18 months also , especially as my RT nurse said she would ask about it. But, the consultant put the kybosh on that when he told me that the tiniest bits of any left cancer cells can be starved and die when deprived of Testosterone and the research says 2 years is most effective. So with deference to the wife (who wants me to live for some time yet ) i accepted the 2 year sentence .....

Depending on your results would you consider the extra 6 months as time well spent ?

But....I honestly cant say how i will feel at the 18 month point when i have the decision to go on or not ! it depends i suppose on the next 8 months and how i get on with the mental issues and the ED .

For me , so far, i am fitter than i have been for probably 15 years. I've lost weight around the middle and my face, and i am certainly moving bigger weights than when i started, and i do think i have actually grown some muscle mass . Although i am eating a lot healthier than before diagnosis. Also , i don't get any fatigue, so i have no idea how that would influence me.

I've only just thought of this, but I wonder if they should be taking more information/bloods etc. from each one of us to discover why we all react differently to the same drug. Its very easy ( and lazy ) to say ' we're all different'. Maybe they could discover DNA or a chemical difference in our bodies that helps/hinders in the reactions to the loss of testosterone and/or to the actual drugs themselves.

Anyways, fingers crossed for your next PSA test , rooting for you

Phil

User

Posted 26 Oct 2018 at 12:35

My oncologist said if I am unfortunate enough to have biochemical recurrence at some point, the regime would be a course of RT and HT for two years.

Getting another PSA test done today so I will have the result on my iPad when I go and see another oncologist next Tuesday for a second opinion 🤞

Cheers, John.

User

Posted 26 Oct 2018 at 13:12

That damn 2 years keeps popping up doesn’t it.

it must be the consultants favourite time span 😆😆

Phil

User

Posted 26 Oct 2018 at 16:45

Thwre is a diffeence between radical RT/HT and salvage or adjuvant RT/HT.

For a long time, 6 months HT was standard for salvage treatment although that is rising now. For radical treatment, 18 months used to be the norm but many oncos moved to 2 years and after some research in 2015 the conclusion was that 3 years was the optimum period.

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

User

Posted 26 Oct 2018 at 17:04

oh God 3 years 😳😳😳

i suppose if needs must but from where I’m standing at 10 months in , 3 years sounds like a lifetime.

But the 3 years is just for salvage presumably, not the normal route which seems to be 2 years?

Phil

User

Posted 26 Oct 2018 at 18:14

Originally Posted by: Online Community Member

But the 3 years is just for salvage presumably, not the normal route which seems to be 2 years?

Phil

No, the 3 years is more often for the radical route not for the salvage route. But if 2 years is normal in your area then you at least know the end is in sight.

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

User

Posted 27 Oct 2018 at 12:22

Good luck with the results and discussions with your oncologist Pallance.

Ian

Ido4

User

Posted 29 Oct 2018 at 12:41

Alan,

Hope all goes well with the PSA test and the meeting with consultant. And also that you are ready to make your decision regarding the HT duration. There is so much conflicting information which doesn't help.

From your stats i wonder what your team are suggesting for the HT. Are they saying you will be on and off for life or that the 3 years will likely be enough? Our initial stats are similar although you are T2b if my memory serves me correctly ( no pun intended )

It makes me wonder for my own journey as i never once have thought i might have to go back on HT ( or have a holiday ).

I see Mr Angry, hello Iain, is aware that he is on a 'holiday' and his stats were very similar to mine with T3b. And we all seem to share the dreaded G9 ....

I see my consultant on 27th December , roughly a year after diagnosis and starting the HT, and about 4 1/2 months after the end of the RT. This is a question i will be asking - 'are you thinking that i am likely to go back on relatively soon'. I know they cant say but they must have opinions. If they think its likely then i will listen to my body a bit more about when i stop/start . If they are confident its just this one time then i will stick it out until they say so.

Iain,

Hi there, i'm keeping well. I have become a bit of a gym bunny ( not Gin - although that sounds good too ). And still aiming for a Tough Mudder next May....Had to buy loads of new clothes the other day as my old stuff was all too big. Costing me a bloody fortune this HT stuff, what with the gym membership and all.

Dark thoughts still there which the counselor is doing her best to control . And still have a bit if a preoccupation in my head with my early years. Cant seem to shake that at the moment.

But Hey Ho , we keep going don't we.

Again, Good luck to Alan and all those others in this shaky old boat we are all crammed into...

User

Posted 10 Dec 2018 at 08:33

Hi Mr Angry

I finished RT on 5th September and got my review on the 8th November. I was Gleason 9 T2c classed Aggressive hi grade PCa.

My PSA at review was 0.5 After a brief discussion with my oncologist she agreed with such good response to RT I could stop HT after 18 months. We discussed QoL and the results of clinical studies comparing 18 months Vs 3 years of HT, I am now on 4 monthly PSA tests for a year, so March, July and November 2019. They will be looking for any consistent rises in PSA, 3 in a row means my PCa is back. My last HT injection will be July 2019 which lasts 3 months until October.

So by my 68th birthday, 6 months after stopping HT I hope to be back to “normal” I will then be on 6 monthly PSA checks. This will be the most anxious time since diagnosed. Can I finish by saying not once did my Oncologist say she thought cutting my initially recommended 3 years HT to 18 months was not a good idea

User

Posted 10 Dec 2018 at 10:39

That’s great Alan . I started my journey Dec/Jan and from 26.7 to 0.2 I was also hoping for a reduction in the 2 years originally prescribed. But alas although all signs are good my consultant wants to stick with 2 years. I will have my fingers crossed for you to never need to go back on the dreaded HT.

Iain , also for you I hope your ‘holiday’ continues for many years.

we are in a tricky place being in the G9 club and I suspect that they expect to see us again at some time in the future. Well I hope to not see my consultant again for many years to come after my next in 6 months.

good luck guys.

Phil

User

Posted 10 Dec 2018 at 12:59

I suppose some people would think me foolish and selfish, stopping HT after 18 months instead of the initial term I was told of 3 years. Putting myself at risk of my PCa returning. My wife and I have discussed the implications at length and we agreed that not only the QoL is important, but I am what’s called a lifetime athlete, I competed at high level athletics for 20 years, then switched to cycling. At diagnosis in January is was at my peak fitness and was competing in veterans races. The HT and RT have stopped all that, but I hope to get reinvigorated after I get my Testosterone back. A little silly to take this risk, possibly, but I want to enjoy my remaining years, not just exist

User

Posted 10 Dec 2018 at 13:10

Hi Alan,

I understand fully your decision regarding the duration of the HT. i cant imagine having all those issues with fatigue and muscle wastage.

I , so far, have had no issues whatsoever physically with the Prostap. I do understand i am very lucky. Only this morning bumped into a friend who was on his way to get his Prostap injection and he has found he is getting quite severe muscle issues, and although he didn't say i think also fatigue.

I wonder if they will ever find out what the causes of the side effects are ? Would be fascinating and i do hope they are doing this research. As i said i haven't got any physical issues and have indeed lost weight. But.....i have suffered very badly mentally ( like Mr Angry did ) and also got the ED like most . But even then i still have libido.

You and your wife have made your decision and i wish you the very best of luck.

I don't think my wife would want me to take any risks, i fact she has already told me to do whatever the consultant says ( i.e. 2 years on the injections) . Interesting that your consultant has agreed to the 18 months , mine was adamant it was for 2 years.

Phil

User

Posted 10 Dec 2018 at 13:26

Hi Alan.

We all go through life making decisions and we all make them for our own reasons.

Good luck and let us know when you win your first race

Bob

Edited by member 10 Dec 2018 at 13:49 | Reason: Not specified

User

Posted 10 Dec 2018 at 13:30

Originally Posted by: Online Community Member

Absolutely not selfish or foolish, Alan. It's your life, and your decision to make. 100%. If the HT is resulting in serious side-effects for you, then quality of life is a very important consideration, particularly when weighed against the likely small increased risk of recurrence that may result.

You need to do what's right for you and your family. It doesn't matter what anyone else thinks!

Cheers,

Chris

User

Posted 10 Dec 2018 at 15:42

It isn't selfish at all. John hated everything about being on bicalutimide - the man boobs, the changing body shape, loss of libido, it was affecting his rugby and his gym / cycling. He stopped after 6 months. He has also said that he will never go back onto HT although when it comes to it, he will no doubt accept the inevitable.

They already know what causes the side effects, it is the depletion of testosterone so the male body begins to feminises. Basically, your body goes through the same process as an adolescent girl ... hips widen, you lay down layers of fat in preparation for future pregnancy and breast feeding, your metabolism is more like a woman, muscle tone is lost and tendons / ligaments become more stretchy.

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

User

Posted 10 Dec 2018 at 16:17

Hi Lyn , What future pregnancy ....my wife will kill me !!!

i understand that it’s the loss of testosterone, but it must be more complicated than that. It would be good to understand why some men get different side effects to others . For instance my lack of physical side effects. Maybe I sailed through adolescence, and to be honest I don’t recall my time as an adolescent. Either because of my upbringing/ life at the time or is their a biological difference that makes a difference???

phil

User

Posted 10 Dec 2018 at 16:49

Why do men lose their libido with no testosterone, yet women can have a high libido with very low testosterone? I find all of this talk so scary , and even Lyn’s comment about John. Whilst externally I may seem calm and collected , I’m terrified of my rollercoaster changing course again in the very near future. It’s inevitable T4 G9 N1 and psa approaching or over 100 ( I find out just before Xmas ). Simply don’t know whether I want to exist or have QOL and it seems both isn’t an option. I guess pain is the biggest persuader at the end of the day :-((

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