Ending hormone therapy after Radiotherapy

User

Posted 23 Sep 2018 at 00:23

Well, i’ve been on hormone therapy since April and I have completed my 20 fractions of external beam radiotherapy I will have to wait until the 8th of November find out if everything has worked as predicted .

I am not happy with effects of the hormone therapy on my quality-of-life I’m not prepared to put up with the hot flushes and the emotional instability at the loss of sex life at my age. I am also a competitive sportsman and since I have been on the hormone therapy I might as well give up because I am constantly exhausted my muscles are slowly changing to fact I’ve put on a stone since April , most of it around my waist and my chest .

I am seriously considering coming off the hormone therapy when I get my review in November I would rather have a fewer happy years then carry on like this

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 22:24

Originally Posted by: Online Community Member

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

I have posted this before but hopefully it will reassure:

http://www.ascopost.com/issues/april-15-2013/similar-outcomes-for-18-vs-36-months-of-androgen-blockade-in-high-risk-prostate-cancer-treated-with-radiation/

Edited by member 12 Dec 2018 at 07:19 | Reason: Not specified

User

Posted 23 Sep 2018 at 11:04

How long were the oncologists advising you to stay on the hormone therapy Pallance? I don't know much about it but would think you need to ask the oncologist what is the minimum time they advise. It seems to be a bit of a lottery in any case.

As the radiotherapy seems to keep working for a while after the treatment ends would it not be better to give it every chance of being successful and that the deprivation of testosterone would assist in this? A few extra months at least might be better now than it being advised for the rest of your life if the PCa isn't killed off. You could have many many happy years if the HT assists the radiotherapy now.

It's a very difficult call to make but only you can know what you can live with. I am sure some others will be along to advise but you really need to weigh up the pros and cons with your oncologists.

Good luck whatever you decide to do.

Ann

User

Posted 26 Sep 2018 at 13:01

Have followed this conversation with interest and having been on Zoladex for two months now, can advise my current experiences on Zoladex:

Hot flushes, loss of libido, muscle aches and pains – especially in hips, worsening erectile dysfunction to the point that now I cannot get an erection and worst of all nocturia which started about one week after first Zoladex injection. Going to the toilet every hour to hour and a half at night. Did see the GP about this and checked for infection (full urinalysis at hospital) – no infection present. Decided against trying any further medication for this as previous use of medication for nocturia has resulted in no improvement and given me severe headaches. It's not an issue of weak / low flow in the night, rather the fact (I believe) that the hormone therapy is interfering with the relevant brain signals to the gland(s) controlling night time urination.

I’m also experiencing some slight moments re short term memory loss, like putting things down and forgetting where I’ve put them. Hopefully these things won't get worse.

Overall i'm tolerating the side effects quite well so far.

I also saw my onco for my first follow up appointment yesterday and discussed the reasoning behind putting patients primarily on a LHRH agonist such Zoladex as opposed to an anti androgen such as Bicalutamide pre radiotherapy treatments. She advised it was because of an evidence based approach that the LHRH agonists are more effective pre-radiotherapy. However she did also advise that post radiotherapy anti androgens are just as effective and that would be an option for me if post radiotherapy I wanted to change. One thing of note that she did say that if I did go down this route, the Bicalutamide dosage would be double that of the dosage related to the 28 day cycle used pre and post first LHRH injection to prevent tumour flare.

Edited by member 27 Sep 2018 at 09:28 | Reason: Spelling.

User

Posted 17 Oct 2018 at 11:53

Hi Chris , I have told my counsellor that if I run out of time on the NHS I will pay privately. Just had a month gap and I’m feeling it.

you have a lot of courage to take your strategy and hope it pays off for you .

We all seem to have different ways of dealing with this and good to hear other ideas and beliefs.

keep well and good luck,

phil

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 25 Dec 2018 at 19:43

For some men, it doesn’t even start until a year or more after the RT. You might find it happens sporadically for the next few years, or it could happen for the rest of your life.

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

User

Posted 26 Dec 2018 at 11:04

I still have this periodically having finished SRT in April 2017. I had a sigmoidoscopy in September and it showed radiation proctitis.
My oncologist told me that mucous discharge can happen.
It’s very unpredictable, doesn’t happen all the time, just occasionally.

Ido4

User

Posted 04 Jan 2019 at 13:34

Good post Steve, I had my second 3 month prostap jab yesterday and although it's freezing I've no heating on I'm sat watching TV in a T shirt because the hot flushes are unbelievable today, like I've got my own in built Central Heating System.

I'm currently on chemo so supposed to keep warm but burning up after yesterdays jab although my temperature is spot on 36.5..

What's your PSA now after the HT and RT? Have they told you how long the HT will last, 2 or 3 years seems to be the gist of it.
How were you after the RT and how long did it take to get back to feeling "normal"?

John

User

Posted 04 Jan 2019 at 13:39

Steve

i wont go through my journey but ours has been very similar. i had very strong emotional instability in the first 4 months of Triptorelin HT. in some ways i also felt a little guilty as my wife had been ”encouraging” me to get a PSA check for 6 months since we heard my brother was diagnosed Gleason 3:4 T2c

The 20 fractions of RT involved a lot of time travelling, waiting around and expense. But the end justified the pain

I finished RT on the 7th Sept and waited the standard 8 weeks to see my Oncologist. We had a full and frank discussion on HT and QoL.

My PSA on diagnosis was 38, then 6 just before my RT after 3 months on Triptorelin, then 0.5 8 weeks after RT

I had read numerous papers on 18month vs 36month HT and the outcome is there is less than 5% risk on taking the lesser period. Now every person and their PCa is different and differing %ages on the effectivness of 18 vs 36 are published by different researchers, but the variance is negligable.

My Oncologist agreed that taking my QoL needs into consideration and the fact i had responded so well to HT and RT she agreed 18 months posed no significant danger to me

Since my post RT review in November, i get 4 monthly PSA checks for a year, what this means to me is that 3 significant increases in a row means my PCa may have returned, if so then I would of course go straight back on HT for the rest of my life probably.

I started Triptorelin April 2018, so my last injection will be July this year, which will run out October 2019

I am of course aware that Triptorelin will have supressed my PSA and the real proof of my ”cure” [remission?] will come in a PSA test April 2020 when my testosterone will have recovered, probably as much as its going to at age 66

Steve, good luck with your post RT review, the 8 weeks wait are a very nervous time. You should never feel guilty about getting PCa my friend. My emotional issues have resolved after my review and I am on Fluoxetine a mild anti depressant, that is also an ssri that helps with hot flushes.

User

Posted 04 Jan 2019 at 14:27

Hi Steve, I just get back from seeing my counselor today too , and she is requesting permission for more sessions ( I've had 16 so far). This is far in excess of the normal cancer diagnosis number, which is around 4. This is due for me to the HT dragging up some bad stuff from an 'interesting' childhood. Its an interesting journey to say the least.

Is it my past , the present , my future or most likely a combination of all three that is causing me the biggest head ache. All I do know is its very hard to get through as I thought all this childhood stuff was dead and buried.

I do know that my emotions are all over the place at the moment. But my counselor says she thinks my emotions may have been suppressed during childhood and so i have to deal with these 'normal' emotions I've not had before.

All too much for my poor intellect to deal with .....

I don't think much has been made of on here about the mental effect of the HT although i am sure it is different for all of us. I have the depression, anxiety and insomnia and the bringing back of old memories, which is likely linked to the depression. But.... i am lucky not to get any physical effects from the HT or the RT , so I have to count my blessings. Oh of course i forgot the PCa .... hopefully it is now gone forever - fingers crossed, that's a bonus which not everyone gets and i appreciate that.

I have started using anti-depressants (Mirtazapine) which also really helps with the insomnia. Maybe something to discuss with your counselor and doctor.

From what i heard , especially from Mr Angry, now departed from this forum, who i shared some similarities in our childhood with, was that after finishing the HT it does eventually get better. He told me to hang in there, and that is what I am trying to do. I have till October now for the my last injection (Prostap) and I will have a damn party when the effects wear off.....

My counselor said to me today that if i feel like crying then I should cry. Not so easy at work or in a cinema though but i get the meaning. We have to accept these heightened emotions as much as we can without the aid of pills if we can. I am on min. dose for the Mirtazapine and don't want to up the dose if i can help it.

One thing i do is try to distract myself and keep busy. I still work full time and have started back at the gym and running and have entered a Tough Mudder in May. I think making plans for the future helps too so your brain realises that there is a future ahead, may be a different future to the one you planned but it is there.

And lastly, you are not weird. Well , i suppose we all are in a way ....

Good luck Steve, pm me if you wish.

User

Posted 04 Jan 2019 at 23:26

You're not at all weird Steve. You’ve been diagnosed with cancer, put on a drug which stops testosterone production and been blasted with radiation.

These treatments are full on. What you describe is within the normal range of side effects for HT.

I have only experienced a couple of weepy times. Once when i was feeling really sorry for myself, worrying about my wife and family. The second time was when my boss was being extremely obtuse and trying to pressurise me.

I have had a few melt downs though when i get stressed. My wife has brought me back from the brink of refusing to attend family events at the last minute (the taxi is waiting outside and i suddenly feel I can’t go) when I felt things were on top of me.

I am taking sertraline to level these extremes out.

The guilt you describe about getting PC I feel that too.

I hope your post RT follow up goes well and that your PSA stays low.

Best of luck,

Ian

Ido4

User

Posted 06 Jan 2019 at 14:47

Hi Goalhanger

Many thanks for your reply. I read your post and I'm going : "counsellor suggesting extra sessions - check", "bad stuff from childhood - check", "is it the problems from the past, the present or the future? - check" - so what you write feels very relevant to where I am at the moment.

Repressing stuff from childhood is definitely something I have done and it's coming back in counselling. It's making me ask big questions like "who am I? am I the person I am now because I learnt this way and that way to deal with things as a kid?" It's explained a few things to me about why I am like I am - so on that score it is very useful. But it's also hard work! so it was good to have a break for 3 weeks over xmas. Whatever, the counselling feels useful and I'm very grateful for the sessions.

At the end of the month I start a mindfulness course that - hopefully - can be useful on the insomnia / thoughts going round and round side of things.

Good luck with the Tough Mudder prep (and totally agree about making plans for future). Thanks again

Steve

User

Posted 06 Jan 2019 at 16:11

Hi Ian

Thanks for the reassurance. I read yours and other replies last night and they really cheered me up.

Kind regards

Steve

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User

Posted 23 Sep 2018 at 11:04

It's a very difficult call to make but only you can know what you can live with. I am sure some others will be along to advise but you really need to weigh up the pros and cons with your oncologists.

Good luck whatever you decide to do.

Ann

User

Posted 23 Sep 2018 at 11:10

Thanks Ann

i started HT mid April and will be due my 3rd Triptorelin Injection in about 3 weeks. My Oncologist told me at my pre RT appointment in June that I would be on HT for 3 years.

I am coming up to 3 weeks post end of RT. I will have my 3rd Injection that will mean I’m due my 4th mid January 2019.

This date is 2 months after my post treatment review. Of course I get a PSA blood test 5 days before this appointment.

If my treatment has been successful and the results are PSA undetectable i will be able to make an informed but very difficult decision

User

Posted 23 Sep 2018 at 11:25

Hi Pallance. Just a thought but would it be possible to try another ADT drug or do they all have exactly the same side effects?

Regards

Ann

User

Posted 23 Sep 2018 at 11:42

Anne

That is my current train of thought and I will bring it up with my Oncologist

I am looking into weighing up the idea of changing to Bicalutamide, which of course does not stop the body making testosterone like Triptorelin, it is a masking therapy, so I get testosterone back and any PCa I have left will not see the testosterone as it will be blocked by the Bicalutamide,

Of course Bicalutamide has its own issues and I need to think hard on the pro’s and cons of both treatment options.

Would I be happy living what my Oncologist would call normal life expectancy with all the Triptorelin side effects, or take a risk and have my testosterone back and possibly, only possibly, a reduced life expectancy, but better overall quality of life,

I will listen seriously to my Oncologist recommendations and maybe she even won’t authorise Bicalutamide if I decide to ask for a change

I will report back after 8th November

Edited by member 23 Sep 2018 at 11:45 | Reason: Not specified

User

Posted 23 Sep 2018 at 12:52

This PSA test is not going to tell you the treatment has worked - your PSA is being held falsely low by the hormones.

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

User

Posted 23 Sep 2018 at 12:57

Thanks for the input Lyn

But my decision will be mainly based on how I see my QoL for my remaining years, not on PSA alone

Live an uncomfortable miserable 15 to 20

or a fulfilling enjoyable 5 to 10

Edited by member 23 Sep 2018 at 12:58 | Reason: Not specified

User

Posted 23 Sep 2018 at 13:22

Pallance. Oncos often give a one size fits all prescription. Ask for full bloods (T levels full hormone spectrum) to see if the dosage is where it needs to be. Adapt your diet and try to work out as much as possible. You can influence the muscle changes and weight gain.

Fresh

Edited by member 23 Sep 2018 at 13:24 | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User

Posted 23 Sep 2018 at 13:43

Fresh

Thanks for your input. In fact I got a Blood Test advanced issue request when I got my review appointment 4 weeks ago. I asked them to add testosterone to the tests carried out and my oncologist nurse said testosterone was not needed so would not add it to the test.

As my testosterone level in June was 0.8 after just 8 weeks on Triptorelin, I suspect I will be at nadir by November 8th.

I have had a lot of advice on diet and exercise. I am what is graded as a “lifetime athlete”. By 25 I was a successful track and road runner and at 35 I switched to marathons, achieving a time of 2 hours 36 minutes. After a lay-off due to back issues from 1994 till 2005, I then took up cycling and of course I have progressed to competing in my age groups.

I only included this info to show why I am suffering

I have had advice on keeping my muscles in shape as long possible, by resistance training as I was recommended, but the muscle wasting can only be delayed however much I exercise.

Some people on here may think I should just be grateful that I have been treated and accept my situation, but I’m afraid I cannot.

my Oncologist has put me on Triptorelin until April 2021, which is 3 years, I guess then I will be taken off it?

Many thanks to all

Edited by member 23 Sep 2018 at 13:45 | Reason: Not specified

User

Posted 23 Sep 2018 at 13:57

Hi Alan,

Asking about the possibility of switching to bicalutimide seems like a reasonable idea. As you know, I've been on 150mg bicalutimide daily for about 5 weeks now and thus far (possible weepy sessions excluded!) have had few if any side-effects.

Chris

User

Posted 23 Sep 2018 at 14:06

pallance,i ticked the testesterone box myself nobody said anything.

User

Posted 23 Sep 2018 at 15:54

Have you considered 18 months on HT rather than 3 years? The study quoted below showed no difference in BCR for ADT over 18 as opposed to 36 months.

https://www.practiceupdate.com/content/duration-of-androgen-deprivation-therapy-in-high-risk-prostate-cancer/70469/62

you have to subscribe BTW but it's free for ordinary punters.

Edited by member 23 Sep 2018 at 15:55 | Reason: Not specified

User

Posted 23 Sep 2018 at 16:45

Originally Posted by: Online Community Member

pallance,i ticked the testesterone box myself nobody said anything.

unfortunately I didn’t get a tick box form, otherwise I would follow your advice. Mine just said (PSA yes) (cancer yes). Presumably to ensure they enter a reading however low as the patient has cancer

and I know my practice nurse very well

User

Posted 23 Sep 2018 at 16:47

Originally Posted by: Online Community Member

Have you considered 18 months on HT rather than 3 years? The study quoted below showed no difference in BCR for ADT over 18 as opposed to 36 months.

https://www.practiceupdate.com/content/duration-of-androgen-deprivation-therapy-in-high-risk-prostate-cancer/70469/62

you have to subscribe BTW but it's free for ordinary punters.

Very interesting read and thankyou very much for taking the time to answer

This looks very much a good compromise for me and I will raise it on my review

User

Posted 23 Sep 2018 at 20:13

Originally Posted by: Online Community Member

This PSA test is not going to tell you the treatment has worked - your PSA is being held falsely low by the hormones.

I wonder what I am going to get from this review then? When I asked the specialist nurse assigned to my treatment she told me to arrange the PSA test 5 days before my review, no cycling for 48 hours and no sex (I presumed that was a joke)

So why the PSA test then? There is no other way to tell if my treatment has had any success is there?

I had 2 reviews over the course of my RT with the lead radiographer.

I was told the review was 8 weeks after my last RT fraction, to ensure all effects of the RT had disappeared to get a true PSA reading

My PSA on diagnosis was 38, 3 months later it was 6, now it will be 5 months further down the line and I expect (hope) my PSA will be very low.

so basically even if it is, this could be just because the HT is supressing the cancer?

Thanks for your answer

alan

User

Posted 24 Sep 2018 at 00:29

RT keeps working for about 18 months post treatment so if you stopped HT about this time PSA should in the following couple of tests give a more accurate indication of how successful your treatment has been. You could then monitor your PSA and take it from there. Unfortunately, PSA is not a reliable indicator for a small number of men.

I had 8 months of HT prior to and during my RT in 2008. I didn't like the effects of HT and have never had it since. Had I had HT perhaps I would not have needed HIFU in 2015, who can say but I avoided the side effects over these years. After HIFU my treating hospital recommended I go back to HT but other hospitals suggested I hold off. With a low but rising PSA and having had a PSMA scan and a MRI I am now awaiting a template biopsy. I fully expect that if the cancer in my Prostate is significant I may be offered further focal therapy and then doubtless HT but I will probably resist the HT unless it progresses outside my Prostate. This is a reasoned decision on my part which might not be to my advantage in combatting my cancer. For some it might well not be in their best interest to stop HT early. A lot would depend on their histology and how they see possibly extending years against better quality of life but perhaps with an earlier demise and difficult end. It can be \ hard decision but must be a personal one.

Barry

User

Posted 24 Sep 2018 at 00:40

The test is a baseline post treatment, It should be very low because of the treatment (RT and hormones). I don't know how low a good result is but your consultant will.

If your treatment has worked your PSA will stay very low until you stop the HT then it will rise as any remaining healthy prostate comes back to life. At some point it should stabilise, if it doesn't the treatment will have failed. You will then be back to scans / further treatment.

Hopefully your treatment will have worked and your PSA will stabilise but you will only know this if you are of the HT.

User

Posted 24 Sep 2018 at 06:11

I was put on bicalutimide as my oncologist said it was usually better tolerated than the other types of hormone therapy. It hasn’t been plain sailing but the Side effects don’t seem to be as bad as the injections from what I’ve read on the forum. Of course, what I don’t know is how an oncologist decides if you’re getting bicalutimide or injections, so simply changing to bicalutimide may not be an option.

User

Posted 24 Sep 2018 at 07:47

Hmmm. interesting discussion , Prostap vs bicalutimide. I am on Prostap since February and have no side effects bar the mental ones. I have lost nearly a stone but as i only started to eat better and going to the gym after i started its difficult to ascertain how i'd be.

I was hoping to come off at 18 months but my consultant recently says that 2 years gives the HT a chance to kill of any tiny cancer cells remaining. I wasnt aware that was what happened but he assured me that when they are microscopic cells they can die when testosterone is withheld. I am currently running at 0.37 , 7 weeks after RT & HD Brachy.

If the Bicalutimide did the job as well why don't we all get offered that ?

What are the side of effects of Bicalutimide versus the Prostap ?

My depression/anxiety is driving me to arrange to see my GP with regard to going on anti-depressants till after the Prostap. I didnt want to do it and would rather finish the HT early but my wife wants me around a bit longer so i have to do it by the book, especially as im Gleason 5+4 so most likely to recur.

The mental stuff is hard to bear , especially as it can dig up old sh*t from the past and then there is the Libido and ED. Luckily ( or unluckily ) i have no loss of Libido. For me if i could get my head straight i could deal with it even though another year or so seems a lifetime away. Therefore the anti-depressants is my most likely next step....

Pallance , you have to make your choices based on your own experiences ,life style and prognosis , and its definately not easy and i wish you well.

Phil

User

Posted 24 Sep 2018 at 07:49

I Thought my oncologist was in charge of my treatment from beginning to end as I don’t see how a GP who is not a cancer specialist could prescribe me bicalutamide instead of Triptorelin

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Ending hormone therapy after Radiotherapy

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