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Advice on testosterone replacement after gleason9 t3c

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User
Posted 08 Aug 2020 at 23:41

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 15 Sep 2021 at 17:39

I just thought I'd update as not been around for a while and it's 4 years since o.h diagnosed gleason9 t3b 18months of zoladex hdb and 6weeks full pelvic external beam  radiotherapy, oh has been on testosterone replacement for roughly a year nibido I think it's 12 weekly injections his psa has stayed at 0.05 and he feels just like he did pre diagnosis he has got his libido back no concerns with the trt so fingers crossed all going well. This forum has been such a lifeline for myself in the early days of this journey I hope that this gives people some sort of hope for better times it's been such a roller coaster of a journey but feel like we're getting some normality back..jo.xxx

User
Posted 09 Aug 2020 at 12:07
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 14 Jan 2022 at 10:53

Any of the urology or oncology nurses (depending which department you're under) should be able to give you your PSA result, if you call the department.

User
Posted 17 Jan 2022 at 17:44
With such a rapid rise, I think you need to prepare yourself - it is likely that there is more than just the one lymph node. Systemic treatment most likely to be offered - I would be pushing for proactive approach of HT either with early chemo or with enzalutimide, abiraterone or apalutimide. If discussing targeted RT to the lymph node, do ask the oncologist what the likelihood is that the cancer is already in other nodes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 May 2022 at 07:52

Originally Posted by: Online Community Member
Incidentally, has anyone seen any research linking the Pfizer vaccine with a temporary increase in the inflammation of lymph nodes...? (I've had all three vaccines in 2021.

There are plenty of cases where unexpectedly high PSA results have been obtained shortly after a COVID vaccination, which was back to the expected value a month later. It happened to me with the AS vaccine, result probably 3-4 times what was expected, two days after vaccination. Since this is still not listed as a known side effect as far as I know, you should file an MHRA yellow card against the vaccination if this happened to you, but you won't know if it's a possibility until you've had your next PSA test and found the result returned to expected level. https://coronavirus-yellowcard.mhra.gov.uk/

There's also recent research which shows actually having COVID temporarily pushes up PSA too, although that didn't address the vaccine issue.

Obviously don't skip COVID vaccines because of this, but avoid scheduling such that a PSA test is within a month of a COVID vaccination.

Edited by member 10 May 2022 at 07:56  | Reason: Not specified

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User
Posted 09 Aug 2020 at 12:07
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 12:19

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 12:23  | Reason: Not specified

User
Posted 09 Aug 2020 at 12:28
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 15:08
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 21:20

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 15:48
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 17:08

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

User
Posted 15 Sep 2021 at 17:39

I just thought I'd update as not been around for a while and it's 4 years since o.h diagnosed gleason9 t3b 18months of zoladex hdb and 6weeks full pelvic external beam  radiotherapy, oh has been on testosterone replacement for roughly a year nibido I think it's 12 weekly injections his psa has stayed at 0.05 and he feels just like he did pre diagnosis he has got his libido back no concerns with the trt so fingers crossed all going well. This forum has been such a lifeline for myself in the early days of this journey I hope that this gives people some sort of hope for better times it's been such a roller coaster of a journey but feel like we're getting some normality back..jo.xxx

User
Posted 15 Sep 2021 at 17:43

Being a G9er and T3 myself, this is the sort of post I love to read, good luck for the future.

Dave

User
Posted 09 Nov 2021 at 22:16

I, too, was G9 and t3b. PSA at diagnosis in 2017 was 99.6. Had hormone injections every six months for three years, chemo for 6 months, 23 radiotherapy sessions and hdr brachytherapy. My lowest PSA since then has been 0.06. In July this year (2021) it was 0.8 and recently is now 4.85...Waiting to see my consultant. Anyone had similar problems with raised psa levels?

User
Posted 09 Nov 2021 at 23:12

Hi Crosby, sorry to hear it is going up. We have had a few similar posts. My guess is that it has spread outside the prostate, hopefully hormone therapy can keep it under control for a while.

Dave

User
Posted 23 Nov 2021 at 19:30

Thanks for the reply. My consultant has referred me for a full MRI body scan...hopefully within the next few weeks 🙏

User
Posted 23 Nov 2021 at 20:42

Hi Crosby, keep us informed. Some people on here talk about PSMA scans, that might be more useful than an MRI. I'm sure your consultant knows what he's doing but it may be worth asking, what does he think the best type of scan would be, and why?

Dave

User
Posted 13 Jan 2022 at 13:28

I'd hoped to be able to post some positive news but have not yet heard of the results of my MRI or PSA both taken on 23rd December... I know it takes 10 working days to get the mri scan report but not to have the psa test result is playing havoc with my mental state! I can't speak to my consultant's secretary as she has covid...I've left her a message...Hopefully will receive a call sooner than later 🙏

User
Posted 14 Jan 2022 at 10:53

Any of the urology or oncology nurses (depending which department you're under) should be able to give you your PSA result, if you call the department.

User
Posted 17 Jan 2022 at 16:37

So, just found out my PSA is now 17.0 and my cancer has returned to a lymph node in my groin. The mri also picked up a small spec on my lung and in the prostate itself. Now waiting for a ct scan and pet scan on those areas and another appt with my consultant within the next 4 weeks. Any thoughts on what treatment is around for dealing with the lymph node?

User
Posted 17 Jan 2022 at 17:44
With such a rapid rise, I think you need to prepare yourself - it is likely that there is more than just the one lymph node. Systemic treatment most likely to be offered - I would be pushing for proactive approach of HT either with early chemo or with enzalutimide, abiraterone or apalutimide. If discussing targeted RT to the lymph node, do ask the oncologist what the likelihood is that the cancer is already in other nodes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 May 2022 at 16:08

Hi,

Well, since my last post, my PSA went up to 29. Was put back on hormone treatment ( triptorelin) in March 2022 and it is now 6.47. In the meantime, I had a VATS excision of a section of my middle lobe in my lung and they also took out two lymph nodes - all of which were prostate cancer. Now all removed. That leaves 7 nodes in my groin. So, I have now been prescribed enzolutamide, and will keep you posted. Will have blood tests in 3 weeks and monitored every 3 months to see if the PSA returns to 'normal' levels.

Incidentally, has anyone seen any research linking the Pfizer vaccine with a temporary increase in the inflammation of lymph nodes...? (I've had all three vaccines in 2021.

Edited by member 09 May 2022 at 16:12  | Reason: Not specified

User
Posted 10 May 2022 at 07:52

Originally Posted by: Online Community Member
Incidentally, has anyone seen any research linking the Pfizer vaccine with a temporary increase in the inflammation of lymph nodes...? (I've had all three vaccines in 2021.

There are plenty of cases where unexpectedly high PSA results have been obtained shortly after a COVID vaccination, which was back to the expected value a month later. It happened to me with the AS vaccine, result probably 3-4 times what was expected, two days after vaccination. Since this is still not listed as a known side effect as far as I know, you should file an MHRA yellow card against the vaccination if this happened to you, but you won't know if it's a possibility until you've had your next PSA test and found the result returned to expected level. https://coronavirus-yellowcard.mhra.gov.uk/

There's also recent research which shows actually having COVID temporarily pushes up PSA too, although that didn't address the vaccine issue.

Obviously don't skip COVID vaccines because of this, but avoid scheduling such that a PSA test is within a month of a COVID vaccination.

Edited by member 10 May 2022 at 07:56  | Reason: Not specified

User
Posted 11 May 2022 at 00:15

Hi. i have been on Nebido - Testostene rplacement injections for over 15 years and works very well for me. used to take every 10 weeks but recently reduaced to 13 weeks to be on safe side

User
Posted 17 Nov 2022 at 19:25

Hi everyone new and old just an update as not posted in a while, latest psa is 0.09,  its around 5 years post diagnosis so were  pleased with the way it's going  no side effects from treatments, still on testosterone replacement 3 monthly injections oh feels fine so all in all couldn't ask for anything more, take care everyone and there is hope after gleason9 diagnosis but we don't even take anything for granted just feel so lucky with this outcome as one of  o.h longterm friends diagnosed with prostate cancer 11 months ago with a psa of 2000  bone mets in spine now spread to sternum after chemo  and hormone therapy  also on abriteronre psa came down to 300 but rising again were so sad about this as looks like it's going in the wrong direction devastated to say the least keep keeping well..jo.x

User
Posted 17 Nov 2022 at 21:22

Thanks for your post. A good recovery like that is what we all aim for so it's heartening to hear your OH is doing so well.

Jules

User
Posted 22 Nov 2022 at 15:30

I have the same diagnosis as jt but he was Gleason 9 and  I  am Gleason 7 with  sv invasion, my urologist refused me trt and now  I have osteoporosis. 

User
Posted 24 Nov 2022 at 09:32
A gp has sent a letter to endocrinologist regarding my osteoporosis treatment and that my testosterone has not recovered ,don't know what they will do, been reading horror stories regarding osteoporosis drugs can't take bisohosphonate infusions because of my hiatus hernia so it looks like romosozumab with increased risk of heart attack and stroke they are serious drugs that's if I decide to take them.
User
Posted 01 Dec 2022 at 15:45

Since my last post, my PSA is now down to 1.05... so the combination of enzolutamide and triptorelin seem to be working well to supress the existing cancer in my groin lymph nodes. 

Nov 2023

This year is a year of two halves. As my PSA had come down to 0.3 in April, I agreed to halve my enzolutamide dose to two tablets per day. I felt much better - less fatigue, breathlessness.  Unfortunately, my psa started to rise again. So two months ago, I reverted to full dosage (4 a day). The psa has continued to rise and is now 8.91. I'm waiting for a review by my consultant and hope to have an mri to establish where the cancer has migrated to.

Feb 2024

A psma scan in December showed cancer in two lymph nodes under my diaphragm - in addition to the seven in my groin. Consultant recommended  I have a BRCA gene test which, if positive, means I can be treated with the same drug as breast cancer patients. Still waiting for the result ( 8 weeks since giving a sample). Meanwhile, my psa has climbed to 80.6 so I'm hoping to go on a clinical trial asap

Edited by member 08 Feb 2024 at 16:54  | Reason: Update

 
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