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stopping HT?

User
Posted 07 Apr 2018 at 09:21

I have been on Bicalutamide+tamoxifen for 6 months now and find that my right (dominant) side is weaker than my left, and that there is muscle wastage - my right leg is thinner than my left. I suspect this is in some complex way an effect from the HT and wondered whether anyone has any idea what it is like to stop the HT? There is no info what difference it makes to outcome of the cancer but I wondered whether it makes a difference to the overall physical state? I wold be grateful for any opinion.

 

User
Posted 07 Apr 2018 at 22:26

Hi Lyn, this is just such a fantastically helpful reply. Thank you. Why can i not get this from the local oncology services?

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User
Posted 07 Apr 2018 at 09:32

Muscle wastage is a side effect of having no testosterone.

Why are you on hormones - is it part of a combined treatment with curative radiotherapy or were you diagnosed with advanced cancer and the hormone treatment is all you have been offered?

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

User
Posted 07 Apr 2018 at 16:03

Thanks for the fast reply! This HT started 2 months pre-radiation. This was due to biochemical recurrence two years after daVinci with subsequent PSA of 0.001for some time. Original Gleason 7 with breach of capsule.
I do not understand why the dominant side would be selectively affected b y HT? Unless there is a weird combination of degenerative effects (e.g. spinal due to arthritis) and HT. But I haver to make a decision whether to carry on, and so far attempts at getting myself more activated through exercise do not seem to have results despite genuine effort. Would I be better off stopping n ow with the HT? I am 70, and was fairly active.

User
Posted 07 Apr 2018 at 16:32

Until the last 4 or 5 years, 6 months of HT was fairly standard with salvage radiotherapy; research then showed that the longer you stay on the HT the better the outcome so 2 or 3 years is now almost standard. However, there are still oncologists who give salvage RT with no hormones at all!

Each case is different though, and you need to discuss with your onco before stopping. Much will depend on what happened between your RP and the decision to start salvage treatment (eg. whether the PSA rose slowly or rapidly, and where they believed the stray cancer cells might be) and how your PSA has behaved since then. You also perhaps need the onco to talk through with you what the impact might be of stopping early - s/he might not be at all concerned - and also to check that the muscle wastage is definitely to do with the HT and not something entirely unrelated .... once you have had cancer it is easy to assume that everything that happens is somehow linked but it is possible to develop a completely different medical condition at the same time. If you were my dad, I would want to check that you had not had an undiagnosed stroke or other brain problem or even to make sure that it is indeed that one side is wasting quicker rather than the other side being swollen as a result of lymphodema for example. A full check up with your GP and another meeting with your oncologist might be the best starting point?

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

User
Posted 07 Apr 2018 at 20:40
As I’ve posted before, I too have been considering stopping the HT before the 2 year period

Reason?

Well I’ve had RP, PSA undetectable for 2.5 years then rise to 0.1 in June 2017 then 0.2 in December 2017

RT from feb 18 - now completes - PSA <0.1

If the cells happened to be outside the prostrate bed then the HT would have no long term benefit would it? They would simply regrow when HT completed

Or is the thinking that if cells still in prostate bed then RT plus HT kills em off more completely?

User
Posted 07 Apr 2018 at 22:26

Hi Lyn, this is just such a fantastically helpful reply. Thank you. Why can i not get this from the local oncology services?

User
Posted 07 Apr 2018 at 23:15
Originally Posted by: Online Community Member

If the cells happened to be outside the prostrate bed then the HT would have no long term benefit would it? They would simply regrow when HT completed

Or is the thinking that if cells still in prostate bed then RT plus HT kills em off more completely?

I’m not sure - all I know is that the data showed the longer you stick with the HT after ART / SRT the less likely you are to have a further recurrence.

There has been a very recent comparable bit of science relating to breast cancer - scientists have found that once a woman stops taking HT after curative surgery / RT her risk of the breast cancer coming back rises rapidly. As a result, NICE guidance is now that most women should stay on the HT for 10 years if possible.

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

User
Posted 09 Apr 2018 at 16:46

I think there are complex mechanisms: So one possibility might be that during radiation cancer cells get damaged but try to repair themselves. The HT might make that more difficult or prevent it. There will be numerous other factors I am sure. Too complex for me to understand but the info made available when I have my appointments does not seem to aid decision making.
My main question is: What would life be like without HT? And what will life be like after HT without recurrence? And what will life be like after HT when the cancer recurs, and all the other treatments are let lose on me?
At the moment I am trying to get my physical shape up to scratch again but it feels like I am hitting a glass ceiling that I cannot get beyond. So might I be better off overall without HT?

User
Posted 09 Apr 2018 at 17:23

Life after HT with no recurrence would get pretty much back to normal - a significant proportion of the side effects are reversible (muscle tone can improve, fatigue dissipates, libido usually returns, erections can be regained (if penile health has been maintained throughout), etc. Some side effects can be permanent, like penile atrophy or man boobs.

Life without HT - it is purely guesswork and will vary for each man but my father-in-law refused any treatment that would affect his sex life (although 79 he had a wife 20 years younger) and he went from T2 to dead in 4 years. The cancer spread to his liver & kidneys unnoticed and he was walking around oblivious to all this until 24 hours before he died.

If (not when) the cancer was to recur after salvage RT/HT, almost all of the alternative treatments are different forms of hormone suppressant so life would be fairly similar to now for a long time. There is plenty written on here about life on chemo - some cope fine and carry on working throughout while others are knocked sideways and in extreme cases, can die from infection.


Work on the basis that salvage RT/HT is going to be successful :-)

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

User
Posted 10 Apr 2018 at 10:39

thank you! Will do, especially your last sentence with the proviso that the possible cure is better than life without. How long after stopping RT would I know that salvage has not worked? It could soon but also it could be a very long time I think with plenty of opportunity to die of other causes.

User
Posted 10 Apr 2018 at 12:56

You mean after stopping HT? It isn't possible to say - very bad news if the PSA starts to rise immediately, very good news if 5 years down the line the PSA is still undetectable, if it stays undetectable for 10 years you are officially in remission.

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

 
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