Advice on testosterone replacement after gleason9 t3c

User

Posted 08 Aug 2020 at 22:41

Hi I've not posted for a while but I'll update OH finished zoladex March 2019 after 18months on HT, he also had High dose Brachytherapy and full pelvic external beam radiotherapy he was gleason9 t3c with seminal vesicle invasion, all of his psa levels since finishing treatment have been <0.05 which is great but his last test they tested testosterone levels and they havnt increased since finishing zoladex, his doctor referred him to see endocrinologist my OH didnt ask him too his gp just said hed be the best person to see as could test further to see what's going on, he had his appointment last week went on his own due to the pandemic, he was told that he would recommend testosterone replacement injections said he had spoken to OH urologist and hes happy as his psa is stable, I would appreciate any advice please as I thought it was risky having testosterone replacement after prostate cancer..many thanks in advance.jo

User

Posted 09 Aug 2020 at 11:07

Hi Jo, many men find that their testosterone production returns to normal or near normal once they stop hormone treatment, and men who have had surgery also have normal testosterone levels so there should be no risk in your OH having testosterone replacement to get him up to where he should be.

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

User

Posted 09 Aug 2020 at 11:19

So he is effectively stuck on hormone therapy, even though not taking it anymore.

If he has any cancer left, it will become apparent more quickly if he has testosterone, whether natural, or prescribed. However, it will probably happen whether he has testosterone or not unless he dies from something else first.

Let's look at this another way. Imagine your husband is just coming to the end of his hormone therapy, and isn't going to have any trouble getting his testosterone back (probably much as you imagined at the time). Now, there's a choice:

1) Stay on hormone therapy forever which might delay any future recurrence but retains all the side effects and he will possibly get some of the longer side effects such as osteoporosis, cardiac issues, etc. and those can be fatal long term.

2) Stop hormone therapy as originally intended, in which case side effects go, but there's a small risk of earlier recurrence.

I think every man who was given these options would choose 2).

In your case, 2) means taking Testosterone Replacement Therapy (TRT).

Now, you are lucky you have clinicians prepared to do that - some aren't, but that's probably misguided. At a urology conference last year, this was discussed informally among several senior urologists, and all were of the view TRT should be available to men believed to be in full remission of prostate cancer.

Edited by member 09 Aug 2020 at 11:23 | Reason: Not specified

User

Posted 09 Aug 2020 at 11:28

There seems to be no definitive answer to this. Certainly, some men who are stable have testosterone replacement treatment. I did ask about this for myself about a year after HT/RT ended and was told by the treating hospital that they didn't recommend it. Maybe in the light of further trials and evaluation this advice has now changed or is more patient specific. More information from oncologists on this subject would certainly be appreciated.

Barry

User

Posted 09 Aug 2020 at 14:08

jt,i stopped zoladex in 2016 and my testesterone has not recovered,im always tired without test,and lost weight with muscle loss and bone loss,my 6 monthly psa test was last month, it was 0.03 ,so similiar to you seminal vessicle invasion,i have been thinking about seeing a endocrinologist and taking my chances,good luck.

User

Posted 09 Aug 2020 at 20:20

Thank you so much Lynne, andy, radar and Barry, you've all put my mind at rest and I will look at it as a positive that they think he should have the testosterone replacement, Oh didnt request it his gp called him arranged a telephone consultation after his last psa test also did testosterone and he told him he was going to refer him to endocrinologist who he saw last week, he took some more bloods did the usual blood pressure height weight etc and he is writing up a plan and will sort out with gp etc then theyl call him and arrange for first injection, in all honesty I think hes got used to not having testosterone cant remember what it was like pre HT , hes been lucky hardly any side effects apart from the usual no libido, tired but not overly so he also does a physical job and shift work still manages ok so I suppose the only way is up. I will post with updates once hes started his t replacement many thanks again to all on this forum your advice and support is overwhelming..take care and stay safe.jo.xx

User

Posted 10 Aug 2020 at 14:48

A couple of years ago, I went to my GP with symptoms of extreme tiredness and the ability to pick up autumn and winter-long colds and coughs. One simple blood test and my testosterone level was found to be virtually 0. There followed a backwards and forwards discussion with endocrinology "You can't have TRT because it will make your prostate cancer worse". "I don't have a prostate and my PSA is unmeasurable and has been so for three years" and so on. Finally, and hilariously "Before we allow you to have TRT we'll have to do a rectal examination". "But I don't have a prostate any more!" and round we go again.

Eventually the TRT started and I was on hyperdrive while the dosage was being adjusted. There's a "but" coming. The dosage had to be reduced and reduced because it was upsetting my haematocrit level and I had to choose between hyperdrive and heart attack/stroke. Endocrinology had the last laugh "There, we told you that you shouldn't have had TRT. Go away and lose some weight." (I am only just on the high side of normal BMI).

Seriously, it seems that once some medical specialists get old wives' simplistic tales about the relationship between prostate cancer and testosterone embedded in their minds, they refuse to do further research to justify or otherwise their opinions. It's rather like the other one I heard (luckily not from my urologist for whom I have the greatest respect) "Don't worry about prostate cancer. You will die with it, not from it...".

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 10 Aug 2020 at 16:08

Thanks for the information tony suppose were realy lucky that our gp is very on the ball took it into his own hands to do referral my OH didnt even mention the TRT it was the gp who said oh your testosterone is still low explained about potential risks of heart, bones etc and said right I'll get in touch with endocrinologist, and here we are, so when I hear of other men wanting it but not been able to have it we feel lucky that weve got that option, just waiting now for them to write up the plan dosage frequency etc then get in touch with a start date, he even said could have the gel try but said hes better with the 3monthly injections seems like they're determined for him to have it even though hes still got his prostate and was Gleason9 he came off HT zoladex March 2019 was last injection he was on it 18months bizarre how different healthcare professionals opinions differ even though it would be the same outcome and benefits..I will post with updates when he starts his trt..thanks again for taking the time to reply with your experience..take care.. jo.xx

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