Just had zoladex implant number 9. That means it will be out of my system on about 1st of May. I've been on HT for two years along with some HDR brachy and EBRT.
So what did I think of it?
Well side effects weren't too bad. Hot flushes were minor, I tried evening primrose oil, it may have helped but this was hardly a controlled trial.
My weight hasn't changed, but I think muscle has declined and fat gone up.
ED physically things do just about still work. Unfortunately I seem to have shrunk, I hope this is because I'm never actually excited about sex, and things may improve.
Complete lack of libido is worst problem. I still find women attractive but just don't get any frisson of excitement when interacting with them. I know you're thinking, "surely Dave didn't get excited just by going to the checkout at Tesco to buy a newspaper?" well no I guess not, but I'm sure life just seemed more lively before zoladex.
In the film Harry met Sally there is a scene discussing whether a man and woman can just be friends, I'm not going to rehearse the arguments see the film if you're interested. On balance I'd say I got on better with my female friends when on zoladex, but it's too high a price to pay.
As you can see I've tried to make the best of this treatment by treating it as an opportunity to observe life from a different perspective. So at least I'm still learning.
Anyway I'm looking forward to getting my mojo back. I know it will take a while probably a year or so. I also guess now I'm flying solo the psa tests will be rather important, they are <0.1 at the moment next one not due until mid May when zoladex will have been out the system a couple of weeks.
I'll keep you all posted on my recovery.
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Just had zoladex implant number 9. That means it will be out of my system on about 1st of May. I've been on HT for two years along with some HDR brachy and EBRT.
So what did I think of it?
Well side effects weren't too bad. Hot flushes were minor, I tried evening primrose oil, it may have helped but this was hardly a controlled trial.
My weight hasn't changed, but I think muscle has declined and fat gone up.
ED physically things do just about still work. Unfortunately I seem to have shrunk, I hope this is because I'm never actually excited about sex, and things may improve.
Complete lack of libido is worst problem. I still find women attractive but just don't get any frisson of excitement when interacting with them. I know you're thinking, "surely Dave didn't get excited just by going to the checkout at Tesco to buy a newspaper?" well no I guess not, but I'm sure life just seemed more lively before zoladex.
In the film Harry met Sally there is a scene discussing whether a man and woman can just be friends, I'm not going to rehearse the arguments see the film if you're interested. On balance I'd say I got on better with my female friends when on zoladex, but it's too high a price to pay.
As you can see I've tried to make the best of this treatment by treating it as an opportunity to observe life from a different perspective. So at least I'm still learning.
Anyway I'm looking forward to getting my mojo back. I know it will take a while probably a year or so. I also guess now I'm flying solo the psa tests will be rather important, they are <0.1 at the moment next one not due until mid May when zoladex will have been out the system a couple of weeks.
I'll keep you all posted on my recovery.
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In October I had a phone appointment with the urologist. Nothing very interesting in that, so I decided to await my PSA test results before posting an update.
The most notable thing about the urologists chat was that having failed to identify me as a patient for the last four years he asked about the oncology follow ups. I told him they are now yearly, next one January. He said "well we like to interleave ours with theirs, so we will say July". I thought it was a bit of a cheek implying it is a coordinated plan, when they didn't know I existed for four years. Having had my little rant, there is nothing much for urology to do: oncology has been doing everything right.
On Friday 9th I had my blood tests, in readiness for the January meeting. Latest PSA has just came up on my phone as 0.1, which is very good, as I still have a prostate. I don't know if the actual result is <0.1 as the app doesn't know about the < symbol.
So my post HT results every six months have been (No. 1) 0.1, (No.2) 0.2, (No.3) 0.1, (No.4) 0.2 and latest (No. 5)0.1. I'm very happy with that. Immediately post treatment one doesn't know if psa will just be a steady upward path hopefully leveling out, or perhaps just continuing up, which would not be good. So I was happy with result number 3, suggesting it has leveled out between 0.1 and 0.2. Result number 4 was still in the briefly established range. Result number 5 means I have now had two years post treatment with no sign of increase. I know this is still early days, but I'm feeling more confident that I'll die of something more fun than prostate cancer.
Good luck to everyone, I'm aware not everyone is in as good a place as me, and aware that luck can turn at any moment.
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I had to go back and check my post to see where I had drifted in to old English. I burst out laughing š when I saw it.
I will leave my dear readers to come to their own conclusions as to whether I am a scholar of this great and poetic language, passed down from Chaucer through Shakespeare and now being continued in my own humble musings on this platform, or whether I've just got fat fingers and a slim keyboard.
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15 Aug 2025. PSA came back 0.1 Very happy with that.
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Nice post Dave, my fingers are certainly crossed for you. Iām finding it awfully difficult at the moment knowing Iām going to have to go on HT for the rest of my life soon at 52 , when essentially Iām fully recovered sexually after surgery 4 1/2 yrs ago. Iām finding all the posts from men and women about loss of libido heartbreaking :-((
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Over the last three years obviously my life has changed and since being on this forum I have learnt a lot.
One thing which I wish I had learned earlier on in treatment was to keep the penis active during HT. There is talk of pumps and tadafil on this site, none of which were offered or mentioned to me by the medics at the time. Even when I had learnt from this forum the importance of these things I couldn't be bothered doing much about it as with HT your interest is so low your penis doesn't seem very important.
Well over the last month the testosterone has been coming back and once again I have some interest in sex. Today I decided on a simple experiment; find out how much length penile neglect has cost me. You don't need much equipment for this experiment, a "tommy the tank mag" and a 12 inch ruler. You also need to be able to remember the result of the same experiment when you were a teenager.
So what's the result: well when I was a teenager length was 5.25 inches, this morning it was 4.75 (you will note I could have saved 50% on the price of a ruler). So it turns out I have only lost about half an inch, and to be honest I may have lost that anyway just due to age. So if you haven't been doing your exercises things might not be too bad, it may have helped that I was only 53 when this all started and fairly fit. Just in case you're interested the average length of a penis is 5.16 inches, so all my teenage friends who claimed to have 6 inchers were probably lying.
And if your wondering if size matters read this article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4558040/
If you can't be bothered reading it the short answer is Yes women prefer an above average penis.
If you're seriously worried about my trainspotting; "tommy the tank" is rhyming slang.
Edited by member 30 Jan 2021 at 23:22
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Brilliant news Dave šš½ Well done on your latest psa result. Long may it continue
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Hi Rikky, we had a member a few years ago who ended up in a wheelchair, the fatigue was so complete. After talking to the PCUK nurses he took up swimming and found that this really helped - he did regain his ability to walk. Since then, the PCUK nurses have run fatigue programmes - definitely worth you giving them a call. Number is at the top of this website page.
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I think this is similar to rectal bleeding, something that can happen anytime after radiotherapy, but does have to be checked that it's not something more serious.
If it had been in the bladder or further back in the upper urinary tract, all your urine would probably be the same colour (although as blood settles, that's not always the case). So it sounds like bleeding in prostate or urethra, which is not completely unexpected after radiotherapy.
As for overindulging, I believe that initially impacts Gamma-GT levels, which are not routinely included in liver function tests (at least not by my GP or hospital). My GP did add it once when some other liver enzyme went way off, and he told be afterwards it was just to confirm I was a non-drinker, as sometimes people with a drinking problem will claim to be a non-drinker. The liver issue turned out to be due to Tamoxifen in my case, and went away by reducing dose.
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Preserved or pickled?
Dave - I am glad to see good news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Super chuffed for you Dave, Super super chuffed.
Jamie.
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Small milestone: Exactly 12 weeks since the last Zoladex. So I am officially saying today is my last day of treatment. As posted on another thread, and now updated in my profile: my most recent PSA was taken on 24 April result was <0.1 which I am very happy with. I wanted that PSA test as close to possible to the last day of ADT so I could draw a nice line in the sand and say "I finished active treatment and PSA was <0.1", that gives me a nice benchmark for all future PSA tests.
(I would have preferred PSA test about a week later, but with Covid I took first GP appointment I could get).
Next Onco appointment is 21 May, this will be by phone. These have all so far been six monthly checkups. A few questions for the community:
Should I ask to switch to 3 Month checkups as I am now off Zoladex and things could start to advance ?
Should I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
My side effects weren't too bad, apart from obvious loss of libido. I know it will probably be from three months to a year to recover from Zoladex, and some people never fully recover, but I am certainly glad to be off the stuff.
Edited by member 27 Apr 2020 at 16:14
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Originally Posted by: Online Community MemberShould I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
It's not standard, but it's difficult to interpret your PSA without it, so I would certainly suggest asking for it with PSA tests until your Testosterone has recovered. I did ask once while I was getting a PSA check when on hormone therapy, and my GP ticked the extra box without any problems.
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I would ask the onco - if the PSA rises without the hormone suppression, to what PSA level would s/he be comfortable with, at what level would s/he consider it to be biochemical recurrence and at what level would s/he start treatment.
It varies so much from region to region - Bri's consultant said (when he was finished with the salvage treatment) that she wouldn't take any action unless his PSA reached 20 ... others have a benchmark of 5 or 10.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi, Just had a six month checkup with onco (well clinical nurse to be precise), over the telephone, nothing exciting to report. Last PSA was <0.1 so I'm still under the influence of ADT. Nurse said expect about 6-12 months before improvement in libido, ED etc. which is what I was expecting.
Next appointment will be in six months. I asked about testosterone tests, she was indifferent to the idea. She said you can ask your GP if you want, but they wouldn't change treatment based on the figures coming back so little point in getting tested. Now I know Andy62 would disagree and being a bit of a geek myself, I would like to track Testosterone vs PSA so I will try and get both tests.
She was not very committal on a PSA level for BCR, and treatment, she seemed to suggest > 2 might start further investigation. PSA velocity and years since treatment would be as much a factor as absolute PSA level when assessing things. She said my onco would be unlikely to want to start any further treatment until PSA > 10.
Anyway nothing too surprising in any of that. I'm happy to wait until November for next tests and appointment. If I manage to go the rest of my life with cancer appointments as dull as that I will be very very happy.
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I just thought I would update this thread. Nothing exciting to report, but I guess that is a good thing. Zoladex has been out of my body for about four months. I have occasionally had a hot flush perhaps two or three times and that has tended to coincide with the hot weather we had in June/July. So that implies the ADT has not reversed.
Libido is still almost non existent. I did have an erotic dream the other night, so maybe some testosterone is thinking about coming back. I do occasionally think about having a "tommy the tank" (rhyming slang) but then often think "I can't be bothered".
Physically things do work, I have reasonable orgasms when I can be bothered, completely dry, but that saves on kleenex so I can't complain. Erection definitely not firm enough for penetration.
Four months is probably too early to expect recovery from HT, most people suggest at least six months going out to two years. I will probably next update this thread in December after my next scheduled follow up.
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Originally Posted by: Online Community MemberIn other bad news: testosterone result did come back as 1.3 nmol/L which is way below normal range of 8.4-28.7 so six months after finishing two years of Zoladex, the testosterone is not looking good. Not too sure what to do about that?
Make sure to include testosterone in all your PSA tests until it's back in normal range (that's what my onco has asked for). I would not be unduly worried, unless it doesn't rise anymore. From what I've heard, anything up to 15 months to get testosterone back seems to be not uncommon. One guy I know had it all back within 3 months, but I think that's rare. It was probably somewhere around 0.2-0.4 on Zoladex, and 1.3 is above castrate level.
I've had my last Zoladex now, and counting down the days until the 3 months expires. My next PSA test is due, but I'm slipping it until about 10 days before the end of the Zoladex, so I catch my final hormone therapy testosterone level too.
Sadly, I never knew what my normal testosterone level was - I never had it measured before starting hormone therapy. Knowing what I know now, I would have asked for a test before starting HT.
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Hi Dave,
just noticed this conversation. I had 3 years of Zolodex and it was about 15 months before I was aroused and that started during sleeping., It was a nice shock to wake up with a hard on! lol, but it took another couple of months before a proper erection happened and that was with the help of Sildenfel! 30 months after my last Zolodex and i can maintain an erection hard enough for sex but sometimes i need that blue pill to help! the worst side effect was a reduction in girth and length, not nice but at least it still works.
Here's my PSA results since I finished Zolodex
April 2018 0.06 [ last Zolodex]
Oct 2018 0.06
April 2019 0.18
Oct 2019 0.91
April 2020 0.92
Oct 2020 1.50
I know its different for everyone else but you might find it helpful.
keep up with the five knuckle shuffles!
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I wasn't really paying attention during puberty Mk I.
I will be paying more attention during puberty Mk II.
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Congratulations!
My last Zoladex officially ran out 3 days ago, so hoping for the same!
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Thank the lord I was blessed in the early days with over 7 ā. And 5 1/2 yrs after RP I was left with 6ā and have enjoyed its full recovery to the full for the last 2 yrs. Thicker in fact due to all the pump work. But as your recovery starts and life begins again after HT , my life next week turns around again with the start of HT for the remainder of my life and the re-onset of erectile disfunction. A decision I put off for 2 yrs and doubt I will ever regret at the tender age of 53 !
Best wishes to you
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Originally Posted by: Online Community MemberAs per previous post November testosterone test was very low, but just in the Christmas week I started getting stirings down there, anyway now if I play with little percy, he springs to attention.
Dave, any idea what your Testosterone was when this happened?
Since I'm following along behind you and looking forward to return in libido, curious to know.
Amazingly, I never measured my length until I was starting PCa treatment, and read that it might shrink. At that point, I started measuring it regularly. It didn't change by even 1mm during the 11 months between starting ADT and finishing EBRT. My consultant warned me it would shrink as a result of the HDR brachy, usually temporarily, but sometimes permanently. It did immediately shrink by about 10%, but recovered over the following 6 weeks. One noticeable difference was that length varied by 1-2% percent each time, and that's continued ever since. Before the HDR, it was always exactly the same length. About 6 months after the HDR, I was really struggling to pluck up the enthusiasm to have erections at all. Some of this was an unrelated emotional issue, and it might also have been a further decline in the already low libido. I went for 3 or more months with a much lower frequency of erections, and I lost about 6% length during that.
This really does highlight the need to keep using it, however boring it is with lack of libido. I'm still struggling to get back to my previous erection frequency. I'm fortunate to have been able to get them when I put my mind to it on hormone therapy, but just about anything including reading this forum or facebook or email or watching an internet cat video is more interesting.
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Chris, best wishes from me too. Very difficult decisions, and I admire your brevity.
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Sorry Andy, I don't know what the Testosterone level was. I know November it was 1.3. I'm next due a test in June. I still like the cat videos, even though I have a bit of a libido.
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That's great Dave, really pleased for you
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That's good Dave.
My last Zoladex ran out 4 months ago. I had a load of bloods done 5 days ago. The only one they would give me over the phone was PSA which is still <0.01, which probably means still no testosterone. Testosterone was tested too, but I have to wait for it in the post.
Edited by member 27 Apr 2021 at 09:30
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Good news all round Dave.
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Great to hear your good news Dave. Also very encouraging for those who have a way to go with HT and wondering what life could be like following on from their last injection. Keith still has a long way to go but just thinking this could happen for him after treatment, and many like him, is so encouraging.
Ange x
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You've looked into it in depth and written a lot on here so if you're happy that's great. I don't know much about routes other than my own.
All the very best, Peter
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Excellent PSA Dave! Really pleased. Bloody hell, sex drive like teenagers, testosterone must be crazy high! I admire the way you take things in your stride. I remember how calm you were when i first joined here last year, i was in a right state and this site made all the difference to me and my family. I wish i could have no PSA anxiety. It was easier initially as i knew it had to be low but now its a year since dads last HT shot, so every PSA causes a bit of worry.. i do think of what you said.. worrying doesn't change anything. I do try and practice it! Keep smiling.
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Brilliant news. You are same treatment as me, but 6 months ahead, so I always follow you closely.
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Dave, you are certainly at the right hospital. I opted to go out of area to see a prof at the Christie. Within a couple of weeks I was diagnosed with severe radiation cystitis.
My symptoms started with blood in the urine a few weeks after salvage RT. It soon progressed to passing lots of large blood clots and some strange looking tissue formations. I should point out the my condition only happens to around 5 percent of RT patients, which is probably why my home hospital didn't know what it was.
I had had numerous incursions into the bladder for the stricture and like you was doing intermittent catheterization.
A quick visit into theatre and the prof knew straight away what it was , a cystoscopy would have done the job but the stricture problem meant a theatre visit was required.
Hope it turns out to be something simple for you.
Thanks Chris
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Nothing more you can do, probably just a crusty bit of irradiated tissue broken off.
Now stop worrying and get to work on those liver function results until Monday!
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Really glad that PSA levels are so low and everything else is pretty much normal. Made me chuckle about making sure you get an abnormal result for liver next time lol!!
After a few sessions of RT, my dad got a bit of blood in pee. I remember Macmillan saying this could be caused by RT as it irritates the lining or something like that. She said it could happen during treatment or months/years afterwards.
May even be an infection.. UTI.
Really glad its being checked out. Please do keep us posted after Monday.
Not going to say don't worry, as i know you have a brilliant attitude to these things.. something i am still learning from you!
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Good stuff Dave onwards you go things are looking good have a good summer gaz š„š
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Hi Dave, Great news that you're happy with your psa. Good words about not ignoring symptoms as well. Half a thimble isn't that small but if it didn't happen again then I think I'd be holding back, although I think you made a wise choice. All the best Peter
Edited by member 17 Jun 2022 at 17:58
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Thanks all, for the replies, opinions and advice. We shall await Monday.
the following is nothing about PCa but just to tell you about the high serum ferritin (SF). About 20 years ago my uncle was diagnosed with hemochromatosis. He is Irish; it's genetic. So when I visited the doctor in 2007 I asked to be checked. I have one copy of the defective genes and SF was 450 normal range is 30–300, so a bit high. For people with hemochromatosis the figure goes to the 1000s and iron overload damages organs.
As mine was high I was referred to hospital, and over the next five years every three months I had a test and sometimes a pint of blood removed. It was an inconvenience to life. The SF was managed at just under 300.
The consultant changed and after that I didn't get another appointment letter. I decided not to chase things up.
In 2021 whilst having a PSA test I said can we check SF it came back at 520. GP and I talked, I said that after nine years of ignoring this problem it has not got a lot worse and saved me 36 trips to hospital. He said he would write to consultant and seek advice. That was six months ago and no reply from consultant.
Anyway this time SF result was 351, only slightly above normal. I have no doubt next time it may be higher, but I think my natural level is mid 400s. That is not high enough to cause organ damage. So for me this is a disease not worth treating.
I don't think there is any lesson to be learnt from this. Ignoring symptoms can lead to an early death as happens so often with PCa, but some diseases don't need treatment as for my hemochromatosis. Once you are on the treatment treadmill it is hard to get off.
If there is anything to be learnt, it is that you do have choices. It is not wise to go against medical advice but only you know how inconvenient 3 month trips to a hospital are for you, and only you know how much of a risk you will take with a disease (as long as that risk choice is an informed choice).
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Well I've seen the urologist today. GP had said they may do a cystoscopy, but appointment letter said nothing about that and I was rather hoping this was going to end up being a little chat and you're on your way.
No, I was asked a few questions, informed of the side effects and asked to consent to a cystoscopy.
Bladder looks good. I could see the screen and he pointed out a red area and said that is inflammation from radiotherapy. He is going to organise a CT scan to check my kidneys but as all my blood tests were good and the appearance of the blood sugested it was urethra or prostate as the source of blood, I would be surprised if this showed anything.
At the moment I still feel like I am pissing razor blades, but I guess it is good to have confirmation nothing has started going wrong in the bladder.
Slightly more worrying is the fact that the urology department should have been doing follow up meetings for the last four years. Also the follow ups for hemochromatosis randomly stopped and the last referral letter from GP has been ignored. I should point out this is my local NHS hospital. The Cancer hospital (Christie) have been exemplary: the local NHSFT (Tameside GH) not so good.
Anyway urology have said they are going to start doing follow up appointments now, just as The Christie are winding them down.
Maybe Tameside GH just wanted me off their books in case I died and it would look bad on the statistics, and now I've survived nearly five years they want to claim the browny points.
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Hi Dave,
Could it be UTI? Usually that feels like pissing razor blades.
My dad hasn't had any follow ups from Urology. Should he be having them?
Glad all looked ok with the internal check. Also glad they are doing further checks!
Im sure it will clear up, whatever it is. Thank you for the update. I was thinking of you this morning.
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When I had my cystoscopy it was a 10 minute deal. My Uro explained he was late for a meeting. Little gel , no 15 minute wait. Just wielded this huge camera and stuck it up me. Iām good with pain but my wife heard me in the waiting room !! I actually felt violated afterwards and sheād a few tears with the nurse. I think I broke her hand squeezing it hurt so much. Never again
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In the old days, a lot of members here who opted for RT/HT stayed under the care of both the urologist & oncologist afterwards, perhaps seeing each one every 12 months so being reviewed 6 monthly; onco monitoring the impact of the RT / HT and uro monitoring the plumbing. It doesn't seem to be happening recently so perhaps cost-cutting or the recent increase in uro-oncologists?
John has remained under the care of both following RP & then salvage RT/HT but he doesn't bother making appointments with either of them nowadays - just sends them both the PSA result. If the PSA goes above 0.15, we will make an appointment with the onco.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I'm under oncology, having been treated with radiotherapy.
However, I've always made it clear I've been concerned about sexual function, and I've had follow-ups with urology for that, but I suspect that wouldn't have happened if I hadn't pushed. Also followed-up by colorectal for the rectal bleeding.
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Dad is under oncology, after having HT/RT. Next follow up is September so i shall ask if Uro follow up needs to be made, although they should be telling us this, not the other way round.
Dave.. shoving cameras everywhere.. really made me laugh out loud!
Hope you are better today!
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Best of luck with the scans Dave, and hope all is ok x
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Saturday hey. My dad had an MRI on his ankle on a Saturday which i thought was unusual, as i didn't think they did weekend appointments. I know you will anyway but do please update on here with results. All will be clear.
Glad pissing is better today.
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good luck with the scan's Dave glad the pissing has improved š¦
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What happened with scan Dave? Results in?
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Sounds good! Your interpretation of these facts seem to make sense. Glad to hear. Congrats on this subject and congrats on your positive and smart attitude.
Best,
Lola.
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Great news. Doesn't sound worrying. If it was then i am sure you would have had a call by now. Its good to hear that you were fully checked out without delay. Definitely admire your positive attitude.
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Nice one Dave. Thereās something to be said for the alcohol. I actually think itās preserving me internally šš
Keep on trucking š
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Great to read this news Dave š
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Just in case anyone is interested the CT scan results on the kidneys have came back after a month. "Very small stone, right kidney, everything else absolutely normal".
This was all prompted by a bit of blood after peeing. I'm not due a PSA test until Christmas, so I will ask for calcium and uric acid to be added to the blood tests then. I might eat a cranberry muffin instead of a chocolate muffin as a token gesture towards kidney health, but that is as far as I'm prepared to go when it comes to diet fads. Other than that I shall just carry on as per normal.
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That's a big relief, Dave. Thanks for sharing.
Enjoy your cranberry or whatever muffin you feel likeš
Best wishes,
Lola.
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Good news Dave. Shame Canberries taste like sh1t lol.
You need to drink loads of fluids mate to keep the Kidneys flushed through. Beer is my weapon of choice , and after all itās 90% water yeh š
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Good to hear. Hopefully it won't cause any issues.
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Great news Dave, Tend to agree with Chris that cranberries arent all that. but when it comes to kidney health token gestures? Theyre a must! Love youre humour on here mate, So refreshing.;)
Jamie
Edited by member 03 Aug 2022 at 22:18
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Great news Dave! Enjoy the muffin! :)
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Great stuff Dave. Love your shoulder shrug attitude. Its exactly whats required. Good man.
Jamie.
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So pleased for you Dave, I can’t wait for the day when I finish Prostap!
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Dave , great news on the PSA. I had a kidney stone, which caused a bit of discomfort until I passed it. Hope all continues to go well.
Thanks Chris
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Great news Dave long may it continue gaz š
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Brilliant - onwards & upwards x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It's always encouraging to read good news stories Dave, as often they can be few and far between. I'm really pleased for you.
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Missed your latest PSA in June. Just seen it now. Excellent result! Long may it continue! Hope all else is well. Absolutely no doubt you are enjoying life Dave! Your positivity is inspiring.
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I've read the early part of this thread with interest. I had my last Zoladex implant end of January, so it "ran out" end of April. I'd been three years on the stuff, something I would have been reluctant to agree to if I'd known the physical and mental impact it was to have. Now I have the long wait for T to return. My next blood test isn't until November. Really hoping there's some good news. I've been without testosterone for three and half years now and I've had enough of it.
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Good news Dave long may it continue and watch out for falling tree's š gaz š
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That’s great news to hear Dave.
All the best and have a Merry Christmas and Happy New Year.
Angex
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Brilliant news Dave. What a lovely early Xmas present.
All the very best mate.
Adrian.
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Great news Dave. Long may it continue!
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Great news Dave, best Christmas gift ever for you and your family.
Leila
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Fab result Dave! Positive as ever, which defo helps. Wishing you and yours a very Happy Christmas and Happy 2024!!
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Fantastic news Dave, I can only dream of being in your position 3 years after the end of HT…..if I survive to the end that is. After the Ceilidh last night, today everyone joint in my body is aching and I am am hobbling about like a 90 year old! Happy to report though that there have not been any more Bonsai Tree attacksš¤£š¤£ Mind you I am back at the acupuncturist tomorrow so am going to wear a crash helmet just in case!
What a lovely Christmas Present for you and long May your good results last Dave.
Derek
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Brilliant news Dave, I'm on lifetime HT, every admiration for you guys who are jumping without a parachute and landing very well.š
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Really good to hear Dave.
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Great result Dave! 10 years is a long wait to prove a point but it's looking good so far.
Jules
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Nice one Dave , long may it continue šŖ
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Thanks for all your previous good wishes.
I've just had my six monthly PSA and it is still 0.1 so I'm very pleased with that. I have had no treatment or HT for four years and I was treated with curative intent so all is looking good.
For people curious about the less than sign (<) or lack of it in this case. I have noticed that the GP software which is called 'Patient Access' never shows the < sign, whereas the NHS app which also shows my test results, does show the < sign when appropriate. So people for whom the < is important would be advised to install the NHS app to check their results. In my case any PSA less than 2.1 is good so I'm not worried about whether my PSA is 0.1 or <0.1 .
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Amazing news Dave! Keep up the good work! Hope all else is well
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Great news Dave. Long may it last.
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Brilliant News, Dave64!
Enjoy yourself. Celebrations are in order!
Best wishes,
JedSee.
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Clenched fist and a smile from me Dave. Great news.
Jamie.
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Brilliant news Dave, onwards and downwards!
Derek
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Well done Dave!
I had my last hormone jab in October, so I am dreading the summer results after it wears off.
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We must have the same nurse. š
Great PSA result mate. Long may they continue. š
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Great news Dave always appreciated your knowledge & advice on this forum. Happy new year to you & your family & everyone on this great community.
Jeff.
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Great result Dave!! Long may it continue. Happy New Year to You and Yours! Take care.
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It's good to read a good result. Cheers!
I like the use of the old English 'hast' too. Dost thou. :)
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Brilliant news Dave. I shall have a celebratory pint.š
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Brill result Dave!! May it long continue! Dad's next one is due in September. 6 months fly by!
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Nice post Dave, my fingers are certainly crossed for you. Iām finding it awfully difficult at the moment knowing Iām going to have to go on HT for the rest of my life soon at 52 , when essentially Iām fully recovered sexually after surgery 4 1/2 yrs ago. Iām finding all the posts from men and women about loss of libido heartbreaking :-((
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I'll be interested in your progress reports, Dave. I come off bicalutimide in 12 days' time, having been on it for 18 months, so I'll be charting my progress, too. As I understand it, bicalutimide is flushed from the body relatively quickly, so I hope for some evidence of that before too long.
Best wishes,
Chris
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Love the attitude, and it's very much what I'm doing too.
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Small milestone: Exactly 12 weeks since the last Zoladex. So I am officially saying today is my last day of treatment. As posted on another thread, and now updated in my profile: my most recent PSA was taken on 24 April result was <0.1 which I am very happy with. I wanted that PSA test as close to possible to the last day of ADT so I could draw a nice line in the sand and say "I finished active treatment and PSA was <0.1", that gives me a nice benchmark for all future PSA tests.
(I would have preferred PSA test about a week later, but with Covid I took first GP appointment I could get).
Next Onco appointment is 21 May, this will be by phone. These have all so far been six monthly checkups. A few questions for the community:
Should I ask to switch to 3 Month checkups as I am now off Zoladex and things could start to advance ?
Should I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
My side effects weren't too bad, apart from obvious loss of libido. I know it will probably be from three months to a year to recover from Zoladex, and some people never fully recover, but I am certainly glad to be off the stuff.
Edited by member 27 Apr 2020 at 16:14
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Originally Posted by: Online Community MemberShould I ask to have Testosterone checks as well as PSA tests so we can correlate any rise in PSA with the rises in Testosterone? I don't know if this is standard procedure anyway or something I would have to ask for.
It's not standard, but it's difficult to interpret your PSA without it, so I would certainly suggest asking for it with PSA tests until your Testosterone has recovered. I did ask once while I was getting a PSA check when on hormone therapy, and my GP ticked the extra box without any problems.
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Thanks Andy (I almost typed in "this question is for Andy62 to answer") I shall ask onco on 21 May.
Edited by member 28 Apr 2020 at 14:31
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I would ask the onco - if the PSA rises without the hormone suppression, to what PSA level would s/he be comfortable with, at what level would s/he consider it to be biochemical recurrence and at what level would s/he start treatment.
It varies so much from region to region - Bri's consultant said (when he was finished with the salvage treatment) that she wouldn't take any action unless his PSA reached 20 ... others have a benchmark of 5 or 10.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks Lyn, I will add these to my list. Because my post treatment psa has always been <0.1 and side effects minimal, there has not been a lot to say at these meetings, but I do feel I'm now entering a new stage post ADT and I might need to be a bit more on the ball.
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Hi, Just had a six month checkup with onco (well clinical nurse to be precise), over the telephone, nothing exciting to report. Last PSA was <0.1 so I'm still under the influence of ADT. Nurse said expect about 6-12 months before improvement in libido, ED etc. which is what I was expecting.
Next appointment will be in six months. I asked about testosterone tests, she was indifferent to the idea. She said you can ask your GP if you want, but they wouldn't change treatment based on the figures coming back so little point in getting tested. Now I know Andy62 would disagree and being a bit of a geek myself, I would like to track Testosterone vs PSA so I will try and get both tests.
She was not very committal on a PSA level for BCR, and treatment, she seemed to suggest > 2 might start further investigation. PSA velocity and years since treatment would be as much a factor as absolute PSA level when assessing things. She said my onco would be unlikely to want to start any further treatment until PSA > 10.
Anyway nothing too surprising in any of that. I'm happy to wait until November for next tests and appointment. If I manage to go the rest of my life with cancer appointments as dull as that I will be very very happy.
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I just thought I would update this thread. Nothing exciting to report, but I guess that is a good thing. Zoladex has been out of my body for about four months. I have occasionally had a hot flush perhaps two or three times and that has tended to coincide with the hot weather we had in June/July. So that implies the ADT has not reversed.
Libido is still almost non existent. I did have an erotic dream the other night, so maybe some testosterone is thinking about coming back. I do occasionally think about having a "tommy the tank" (rhyming slang) but then often think "I can't be bothered".
Physically things do work, I have reasonable orgasms when I can be bothered, completely dry, but that saves on kleenex so I can't complain. Erection definitely not firm enough for penetration.
Four months is probably too early to expect recovery from HT, most people suggest at least six months going out to two years. I will probably next update this thread in December after my next scheduled follow up.
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An erotic dream seems encouraging Dave - don't forget that you are dealing with the emotional fallout of having finished treatment so the returning testosterone has a bit of an extra hill to climb.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Dave, watching this thread, as I've been told I can stop HT now. I already had my next injection waiting in the fridge and I'm not getting bad side effects, so I said I'd do that one more and then stop. It should run out in time for Christmas.
You should force yourself on the issue of "tommy the tank". That's one of the things caused by hormone therapy - you have no impetus to have erections, but you must do so to keep the old John Thomas working - the old use it or lose it. You may find that using erotica or soft porn helps. For soft erection, ask for Sildenafil or Tadalafil - these amplify the effect of an erection in your penis. If it's soft because not much arousal signal is getting there, the Sildenafil or Tadalafil will help. You do want to get as hard as possible because that's what prevents, and to some limited extent, reverses fibrosis (only recent fibrosis can be reversed). If the Sildenafil or Tadalafil don't help, it may be soft because of fibrosis of the corpus cavernosum (erectile part of the penis). A pump can help here, as it can reverse some of the more recent fibrosis. Fibrosis prevents the corpus cavernosum expanding as much as it did, in both length and girth. Due to the way erections work, a reduction in girth reduces rigidity. If you can get a hard erection without the pump (e.g. with Sildenafil/Tadalafil), that's even better as it applies to the whole penis, whereas the pump only does this on the external half of the penis.
Just to add, hot flushes going is probably not a good indicator of testosterone return - it can continue some time after the return. It's caused by a complicated messing up of hormone signalling in the hypothalamus, rather than just simply by loss of testosterone.
Edited by member 08 Sep 2020 at 09:57
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Following this thread too, had my last prostap3 injection 21st Aug so runs out 21st Nov...its like I'm waiting for Christmas lol
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OK I'm a bit angry. I hope I don't rant too much.
[deleted this bit as they did do the right test, just added another test in for an unrelated issue which confused me. ]
In other bad news: testosterone result did come back as 1.3 nmol/L which is way below normal range of 8.4-28.7 so six months after finishing two years of Zoladex, the testosterone is not looking good. Not too sure what to do about that?
Edited by member 25 Jan 2021 at 23:50
| Reason: Deleted rant about wrong test being done.
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Well age is in your side. I spoke at length with my Oncologist last week in Acute Oncology ward , but he warned if I tried just one 3 month dose it may take 8 months to recover aged 53. So then I would have wasted 11 months quality of life maybe ?? Just too hard to make a decision
Edited by member 19 Nov 2020 at 22:17
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I have some incomplete data to share if it helps anyone. This is just a single 3 month Prostap injection
14th May (before Prostap 3) - testosterone 15.7 nmol/L
26th May (Prostap injection) - 3 months
28 July - testosterone 0.4 nmol/L
26th August (Prostap out of my system?)
29 October - testosterone 1.1 nmol/L
10 November - testosterone 7.4 nmol/L (just below normal)
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Originally Posted by: Online Community MemberIn other bad news: testosterone result did come back as 1.3 nmol/L which is way below normal range of 8.4-28.7 so six months after finishing two years of Zoladex, the testosterone is not looking good. Not too sure what to do about that?
Make sure to include testosterone in all your PSA tests until it's back in normal range (that's what my onco has asked for). I would not be unduly worried, unless it doesn't rise anymore. From what I've heard, anything up to 15 months to get testosterone back seems to be not uncommon. One guy I know had it all back within 3 months, but I think that's rare. It was probably somewhere around 0.2-0.4 on Zoladex, and 1.3 is above castrate level.
I've had my last Zoladex now, and counting down the days until the 3 months expires. My next PSA test is due, but I'm slipping it until about 10 days before the end of the Zoladex, so I catch my final hormone therapy testosterone level too.
Sadly, I never knew what my normal testosterone level was - I never had it measured before starting hormone therapy. Knowing what I know now, I would have asked for a test before starting HT.
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OK my rant about the thyroid test, was not entirely justified. I have no idea why they did the thyroid test [edit: I now know why they did the test it was for another issue I just didn't know they were going to do it] , I assume it was a mistake, but anyway I have just had psa results come back, so they must have done two tests from the same sample.
Good news is psa <0.1 I expect that is not too surprising as per my previous post, testosterone is still very low. Anyway two and a half years after diagnosis. Two years after RT and six months after finishing ADT. That is the result. Needless to say with such low testosterone I still have no libido. I'm seeing onco next week.
Thanks Chris, I know you have had to make some tough calls with this disease.
Wonky donky, thanks for those figures. Three months ADT took about six months in total to recover from.
Andy, I just know we are going to get a detailed plot of your recovery as it happens. I'm looking forward to it.
Edited by member 25 Jan 2021 at 23:55
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Hi Dave,
just noticed this conversation. I had 3 years of Zolodex and it was about 15 months before I was aroused and that started during sleeping., It was a nice shock to wake up with a hard on! lol, but it took another couple of months before a proper erection happened and that was with the help of Sildenfel! 30 months after my last Zolodex and i can maintain an erection hard enough for sex but sometimes i need that blue pill to help! the worst side effect was a reduction in girth and length, not nice but at least it still works.
Here's my PSA results since I finished Zolodex
April 2018 0.06 [ last Zolodex]
Oct 2018 0.06
April 2019 0.18
Oct 2019 0.91
April 2020 0.92
Oct 2020 1.50
I know its different for everyone else but you might find it helpful.
keep up with the five knuckle shuffles!