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Hooray I'm off zoladex, let's hope for good.

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User

Posted 04 Feb 2020 at 19:12

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.

Dave

User

Posted 04 Feb 2020 at 19:12

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.

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.

I'll keep you all posted on my recovery.

Dave

User

Posted 11 Dec 2022 at 21:56

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.

Dave

User

Posted 04 Feb 2020 at 20:11

Nice post Dave, my fingers are certainly crossed for you. I’m finding it awfully difficult at the moment knowing I’m going to have to go on HT for the rest of my life soon at 52 , when essentially I’m fully recovered sexually after surgery 4 1/2 yrs ago. I’m finding all the posts from men and women about loss of libido heartbreaking :-((

User

Posted 30 Jan 2021 at 21:19

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 22:22 | Reason: Not specified

Dave

User

Posted 04 Dec 2021 at 00:01

Brilliant news Dave 👍🏽 Well done on your latest psa result. Long may it continue

User

Posted 20 Dec 2021 at 11:28

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.

Edited by member 20 Dec 2021 at 14:42 | Reason: typo

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

User

Posted 17 Jun 2022 at 09:55

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.

User

Posted 05 Jul 2022 at 00:21

Originally Posted by: Online Community Member

Nice one Dave. There’s something to be said for the alcohol. I actually think it’s preserving me internally 😆😆
Keep on trucking 👍

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

User

Posted 06 Jul 2023 at 09:47

Brilliant news Dave 👍

User

Posted 19 Dec 2023 at 07:38

Super chuffed for you Dave, Super super chuffed.

Jamie.

User

Posted 27 Apr 2020 at 15:13

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 15:14 | Reason: Not specified

Dave

User

Posted 27 Apr 2020 at 15:33

Originally Posted by: Online Community Member

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.

User

Posted 27 Apr 2020 at 19:11

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

User

Posted 21 May 2020 at 15:59

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.

Dave

User

Posted 07 Sep 2020 at 23:48

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.

Dave

User

Posted 20 Nov 2020 at 03:10

Originally Posted by: Online Community Member

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?

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.

User

Posted 01 Dec 2020 at 15:50

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!

User

Posted 01 Dec 2020 at 22:20

Originally Posted by: Online Community Member

Andy, I just know we are going to get a detailed plot of your recovery as it happens. I'm looking forward to it.

😁

I wasn't really paying attention during puberty Mk I.

I will be paying more attention during puberty Mk II.

User

Posted 25 Dec 2020 at 11:44

Congratulations!

My last Zoladex officially ran out 3 days ago, so hoping for the same!

User

Posted 30 Jan 2021 at 21:36

Thank the lord I was blessed in the early days with over 7 “. And 5 1/2 yrs after RP I was left with 6” 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

User

Posted 01 Feb 2021 at 23:14

Originally Posted by: Online Community Member

As 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.

User

Posted 02 Feb 2021 at 10:13

Chris, best wishes from me too. Very difficult decisions, and I admire your brevity.

User

Posted 02 Feb 2021 at 19:32

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.

Dave

User

Posted 26 Apr 2021 at 23:37

That's great Dave, really pleased for you

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

User

Posted 27 Apr 2021 at 00:03

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 08:30 | Reason: Not specified

User

Posted 27 Apr 2021 at 10:19

Good news all round Dave.

Ido4

User

Posted 27 Apr 2021 at 11:28

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

User

Posted 27 Apr 2021 at 16:20

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

User

Posted 03 Dec 2021 at 22:29

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.

User

Posted 04 Dec 2021 at 08:44

Brilliant news. You are same treatment as me, but 6 months ahead, so I always follow you closely.

User

Posted 17 Jun 2022 at 06:48

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

User

Posted 17 Jun 2022 at 07:35

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!

User

Posted 17 Jun 2022 at 08:16

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!

User

Posted 17 Jun 2022 at 14:22

Good stuff Dave onwards you go things are looking good have a good summer gaz 🔥👍

User

Posted 17 Jun 2022 at 16:49

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 16:58 | Reason: Not specified

User

Posted 18 Jun 2022 at 12:18

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).

Dave

User

Posted 20 Jun 2022 at 16:22

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.

Dave

User

Posted 20 Jun 2022 at 20:58

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.

User

Posted 20 Jun 2022 at 21:52

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. I’m good with pain but my wife heard me in the waiting room !! I actually felt violated afterwards and she’d a few tears with the nurse. I think I broke her hand squeezing it hurt so much. Never again

User

Posted 20 Jun 2022 at 23:08

Originally Posted by: Online Community Member

On the subject of urology follow ups.

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

User

Posted 20 Jun 2022 at 23:55

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.

User

Posted 21 Jun 2022 at 10:06

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!

User

Posted 21 Jun 2022 at 21:59

Best of luck with the scans Dave, and hope all is ok x

User

Posted 21 Jun 2022 at 22:04

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.

User

Posted 21 Jun 2022 at 22:09

good luck with the scan's Dave glad the pissing has improved 💦

User

Posted 03 Jul 2022 at 15:02

What happened with scan Dave? Results in?

User

Posted 03 Jul 2022 at 19:58

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.

User

Posted 03 Jul 2022 at 22:40

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.

User

Posted 04 Jul 2022 at 17:48

Nice one Dave. There’s something to be said for the alcohol. I actually think it’s preserving me internally 😆😆

Keep on trucking 👍

User

Posted 04 Jul 2022 at 21:16

Great to read this news Dave 👍

User

Posted 03 Aug 2022 at 13:03

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.

Dave

User

Posted 03 Aug 2022 at 14:31

That's a big relief, Dave. Thanks for sharing.

Enjoy your cranberry or whatever muffin you feel like👍

Best wishes,

Lola.

User

Posted 03 Aug 2022 at 15:34

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 it’s 90% water yeh 😆

User

Posted 03 Aug 2022 at 15:48

Good to hear. Hopefully it won't cause any issues.

User

Posted 03 Aug 2022 at 21:11

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 21:18 | Reason: Not specified

User

Posted 04 Aug 2022 at 23:41

Great news Dave! Enjoy the muffin! :)

User

Posted 29 Jun 2023 at 16:38

Great stuff Dave. Love your shoulder shrug attitude. Its exactly whats required. Good man.

Jamie.

User

Posted 29 Jun 2023 at 18:25

So pleased for you Dave, I can’t wait for the day when I finish Prostap!

User

Posted 29 Jun 2023 at 18:46

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

User

Posted 29 Jun 2023 at 18:55

Great news Dave long may it continue gaz 👍

User

Posted 29 Jun 2023 at 19:17

Brilliant - onwards & upwards x

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

User

Posted 29 Jun 2023 at 20:28

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.

User

Posted 06 Jul 2023 at 09:32

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.

User

Posted 06 Jul 2023 at 19:31

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.

User

Posted 18 Dec 2023 at 13:12

Good news Dave long may it continue and watch out for falling tree's 🎄 gaz 👍

User

Posted 18 Dec 2023 at 13:44

That’s great news to hear Dave.

All the best and have a Merry Christmas and Happy New Year.

Angex

User

Posted 18 Dec 2023 at 14:15

Originally Posted by: Online Community Member

Thanks for the previous replies everyone.

Just had my PSA result 0.1 . For anyone new here, I had RT so I still have a prostate so anything under 2.1 is good.

Brilliant news Dave. What a lovely early Xmas present.

All the very best mate.

Adrian.

User

Posted 18 Dec 2023 at 14:45

Great news Dave. Long may it continue!

User

Posted 18 Dec 2023 at 15:08

Great news Dave, best Christmas gift ever for you and your family.

Leila

User

Posted 18 Dec 2023 at 15:14

Fab result Dave! Positive as ever, which defo helps. Wishing you and yours a very Happy Christmas and Happy 2024!!

User

Posted 18 Dec 2023 at 15:21

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 attacks🤣🤣 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

User

Posted 18 Dec 2023 at 15:39

Brilliant news Dave, I'm on lifetime HT, every admiration for you guys who are jumping without a parachute and landing very well.👍

User

Posted 18 Dec 2023 at 17:16

Really good to hear Dave.

User

Posted 18 Dec 2023 at 20:34

Great result Dave! 10 years is a long wait to prove a point but it's looking good so far.

Jules

User

Posted 19 Dec 2023 at 13:36

Great news Dave.

Ido4

User

Posted 19 Dec 2023 at 13:39

Nice one Dave , long may it continue 💪

User

Posted 16 Jul 2024 at 18:09

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 .

Dave

Show Most Thanked Posts

User

Posted 04 Feb 2020 at 20:11

User

Posted 04 Feb 2020 at 21:17

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

User

Posted 04 Feb 2020 at 21:25

Originally Posted by: Online Community Member

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.

Love the attitude, and it's very much what I'm doing too.

User

Posted 27 Apr 2020 at 15:13

(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 ?

Edited by member 27 Apr 2020 at 15:14 | Reason: Not specified

Dave

User

Posted 27 Apr 2020 at 15:33

Originally Posted by: Online Community Member

User

Posted 27 Apr 2020 at 15:57

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 13:31 | Reason: Not specified

Dave

User

Posted 27 Apr 2020 at 19:11

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

User

Posted 27 Apr 2020 at 23:13

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.

Dave

User

Posted 21 May 2020 at 15:59

Dave

User

Posted 07 Sep 2020 at 23:48

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.

Dave

User

Posted 08 Sep 2020 at 00:18

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

User

Posted 08 Sep 2020 at 08:54

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 08:57 | Reason: Not specified

User

Posted 08 Sep 2020 at 11:42

Following this thread too, had my last prostap3 injection 21st Aug so runs out 21st Nov...its like I'm waiting for Christmas lol

User

Posted 19 Nov 2020 at 18:41

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. ]

Edited by member 25 Jan 2021 at 22:50 | Reason: Deleted rant about wrong test being done.

Dave

User

Posted 19 Nov 2020 at 19:42

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 21:17 | Reason: Not specified

User

Posted 19 Nov 2020 at 21:21

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)

User

Posted 20 Nov 2020 at 03:10

Originally Posted by: Online Community Member

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.

User

Posted 21 Nov 2020 at 15:47

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 22:55 | Reason: Thyroid test not a mistake

Dave

User

Posted 01 Dec 2020 at 15:50

Hi Dave,

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!

User

Posted 01 Dec 2020 at 17:10

Thanks Eddie, glad to hear your sexual function is recovering. I was a bit disappointed with my low testosterone I guess I will have to wait and see how it gets on.

Dave

User

Posted 01 Dec 2020 at 22:20

Originally Posted by: Online Community Member

Andy, I just know we are going to get a detailed plot of your recovery as it happens. I'm looking forward to it.

😁

I wasn't really paying attention during puberty Mk I.

I will be paying more attention during puberty Mk II.

User

Posted 25 Dec 2020 at 10:15

On three occasions in the last week I have woke up in the middle of the night with a hard on (well perhaps a semi is a better description). I was going to post on the first occasion, but wanted to be sure it wasn't a one off. So at last the ADT is wearing off. Happy Christmas!

Dave

User

Posted 25 Dec 2020 at 11:44

Congratulations!

My last Zoladex officially ran out 3 days ago, so hoping for the same!

User

Posted 25 Jan 2021 at 11:47

I'm happy to say effects of Zoladex seem to have completely worn off. It's more or less exactly a year since the last implant, so nine months after the implant was fully dissolved. As 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. I'd say I've lost an inch in length and girth and not very firm (if I had joined this forum earlier I would have known what to do about this, but sadly NHS was not proactive in this area). Orgasm are good, but dry which isn't really a problem. I am quite surprised at how rapid the change was between impotence and functioning, and also how long it took after the end of Zoladex for recovery to occur.

Dave

User

Posted 30 Jan 2021 at 21:19

Over the last three years obviously my life has changed and since being on this forum I have learnt a lot.

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 22:22 | Reason: Not specified

Dave

User

Posted 30 Jan 2021 at 21:36

Best wishes to you

User

Posted 30 Jan 2021 at 21:45

Good luck Chris,

We are all rooting for you!

Dave

User

Posted 01 Feb 2021 at 23:14

Originally Posted by: Online Community Member

As 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.

User

Posted 02 Feb 2021 at 10:13

Chris, best wishes from me too. Very difficult decisions, and I admire your brevity.

User

Posted 02 Feb 2021 at 19:32

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.

Dave

User

Posted 26 Apr 2021 at 22:25

Time for an update. My next onco appointment is in early June and normally I would try and get the psa results about two weeks before this. However with the pandemic, getting a reliable appointment at the GP surgery is troublesome so I booked early and got an appointment for bloods last Wednesday.

I asked for psa and testosterone, whilst I was there I mentioned to the nurse that I hadn't had my ferritin checked for a while and I do have a problem with hemochromatosis which I want to monitor.

The nice nurse said well we'll do a full blood count whilst we are at it.

So here are the results most important first.

First: Testosterone 17.6 up from 1.3 in November. This is back in the normal range. I probably could have guessed this because everything seems to be functioning pretty well, and I'm interested in sex again.

Second: psa 0.2 up from <0.1, but that is not surprising as I still have a prostate and now I have testosterone back so the prostate is active again for the first time in nearly three years.

I would say this is the most important psa test I have had since treatment, as this is the first one which has not been under the influence of HT. As long as it stays below 2.1 everyone will be happy.

Nearly all my other blood results were in the normal range, LDL cholesterol is just above normal. Serum ferritin is 450 which is way above the normal range of 30 to 300 however I know I have genetic susceptibility to this, and I'm quite happy that without treatment for the last 10 years this has not got any worse.

I will see the onco in June to discuss results I think she will be happy with them. I think she will then suggest a psa test in November.

Edited by member 26 Apr 2021 at 22:26 | Reason: Not specified

Dave

User

Posted 26 Apr 2021 at 23:37

That's great Dave, really pleased for you

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

User

Posted 27 Apr 2021 at 00:03

That's good Dave.

Edited by member 27 Apr 2021 at 08:30 | Reason: Not specified

User

Posted 27 Apr 2021 at 10:19

Good news all round Dave.

Ido4

User

Posted 27 Apr 2021 at 11:28

Ange x

User

Posted 27 Apr 2021 at 16:20

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

User

Posted 02 Dec 2021 at 23:43

An update nothing new to report yet but will have a PSA result in a few days.

I went down for the PSA test today, so results in the next few days. I had my third COVID jab two days ago and I deliberately timed it like this to test the hypothesis that the jab increases PSA, so if it goes through the roof I won't panic I will just get another PSA test in a few weeks to see if it goes down again.

A few people have reported high PSA after a covid jab, so this little experiment is in order that I can give advice based on practical experience, should anyone in the future have a PSA test near a booster jab.

All my tests whilst on HT were <0.1 after a year of not being on HT it had gone to 0.2 as I still have a prostate and testosterone it should return to a normal level at some point, just picking a figure out of the air perhaps 1.0 would be the new normal. If it got above 2.1 it would be classed as biochemical recurrance, but my onco said he wouldn't start treatment unless it got above 5.0 .

I know lots of people have PSA anxiety, but I'm not that bothered, I think that is because I know it has yet to settle down at a new normal level so any rise to a number below 2.1 would be OK. Though the speed PSA rises is very important, so actually I would really like to see it rising no more than 0.1 every six months, but then we have to factor in the COVID Jab so if it comes back at 0.5 or less I would be very happy. If it comes back at less than 1.5 I would be happy but would probably be pretty anxious for the next result. If it came back at above 1.5 I would start working through the bucket list just in case.

I did think about starting a thread where we could run a sweepstake on my PSA results. I think PSA Tests would be far more fun if a bit of money was at stake (as well as our lives😯).

I also asked for a testosterone test, believe me I'm no longer worried this is low, quite the opposite. Apparently in Victorian times they covered the table legs as they were too sexy.

(This article refutes the claim, but we all know not to believe the rubbish we read on the internet) https://knowledgenuts.com/victorians-didnt-cover-their-table-legs/

Anyway my testosterone is so high I tried organising a threesome with a Chaise Lounge and a Welsh Dresser . I'm not complaining I am just curious as to how high the testosterone is.

Sadly my physical performance does not quite match my libido, I would probably give that a four out of ten. I might start experimenting to improve this.

I will update further when I get the results, onco meeting is in January, but once again because of COVID and Christmas holidays and bad weather I decided to book the PSA early.

Edited by member 02 Dec 2021 at 23:54 | Reason: Not specified

Dave

User

Posted 03 Dec 2021 at 19:36

Well I would have lost a bet on the direction for PSA. I'm delighted to say it has gone down. Reading has just came in at 0.1 ug/L no less than sign and the app has shown a < before, so I think we can take it as =0.1 .

So just to summarise diagnosed early 2018, HT started straightaway. HDR brachy August 2018, EBRT September 2018. HT stopped April 2020. Allowing for time for HT to clear the system. So it is 3.5 years since diagnosis and about one year since end of all treatment.

All PSA s during treatment were <0.1 first PSA post treatment was 0.2 and now back down to 0.1 . As I said in the previous post I would be very happy with anything under 0.5. so I am very very happy.

Interesting the COVID jab probably made no significant difference. I assume onco will ask for another test in six months. I'm expecting PSA to bob up and down a bit when it reaches its new level, it has clearly not gone on an exponential climb so I think I shall celebrate.

I haven't had the testosterone results back yet. I shall make another post when they come back. As mentioned in my previous post, I only want to know this figure to work out why my sex drive is the same as a teenagers.

Dave

User

Posted 03 Dec 2021 at 22:29

User

Posted 04 Dec 2021 at 00:01

Brilliant news Dave 👍🏽 Well done on your latest psa result. Long may it continue

User

Posted 04 Dec 2021 at 08:44

Brilliant news. You are same treatment as me, but 6 months ahead, so I always follow you closely.

User

Posted 04 Dec 2021 at 12:58

Thank you everyone.😺

Dave

User

Posted 15 Dec 2021 at 08:20

Just to let people know my testosterone is 16.2, so it has stabilised at about middle of the range for an adult male.

It took at least 8 months post zoladex to recover but then it recovered fast.

Dave

User

Posted 15 Dec 2021 at 16:23

Great news...I'm very envious!

Vince

User

Posted 15 Dec 2021 at 20:27

Good to know this Dave. Thank you.

User

Posted 18 Dec 2021 at 16:31

I have just come off Zoladex after 2 years ,my PSA has been rising from 0.4 to 0.8 in a year .I only had a few side affects from it except Fatigue witch has really knocked me about,i cant walk very far and my knees buckle ,I'm seeing a physio to see if that helps.The zoladex had stopped working and due to the Fatigue the onco has taken me off it.He will monitor my PSA and see how it goes before deciding on what action to take next.

I came off Zoladex on 11/10/21i don't know how long it will be before the fatigue wears off and i can walk again.

Richard

User

Posted 20 Dec 2021 at 02:22

Hi Rikki,

That level of fatigue is bad. I see you had RT and still have a prostate so hopefully PSA will settle down around 2.0.

Dave

User

Posted 20 Dec 2021 at 11:28

Edited by member 20 Dec 2021 at 14:42 | Reason: typo

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

User

Posted 17 Jun 2022 at 00:20

I have had some six monthly blood tests I had these done about a month earlier than I originally planned, and had more thorough tests than I would normally have, for reasons you will see later. Anyway, I'm pleased with the results. PSA 0.2 So having been off HT for two years, the three PSA tests which have not been influenced by HT and all six months apart are 0.2, 0.1, 0.2 When you consider anything less than 2.1 will be considered OK I am very happy with these results.

I should also mention that nearly all other blood results were normal, the exception being Serum Ferritin but this is something I am aware of and does not cause a problem. Liver function test was also normal, personally I consider this to be a failure to overindulge, I will try harder to get an abnormal result next time.

Of more concern and your experiences on this would be useful. About a week ago I had a piss before bed and looked down and noticed blood at the tip of my penis, not a lot, perhaps half a thimble full. I washed the penis, looked for any external injury of which there were none (and lets face it if you catch it in your fly, you know). So this had definitely came out the urethra . The next morning a slight pink tinge to urine at start of peeing then normal straw colour. I spoke to the locum GP the next day, he arranged a urine test and blood tests. Hence all the details about blood results quoted above.

Urine sample showed no blood so very unlikely to be from kidneys or bladder. If I had not had PCa I would have ignored this and waited to see if it recurred (that is what us men do, and the reason genuine problems go untreated). As I have had PCa and the Christie Hospital said monitor yourself and just let us know if there is a problem, I thought better not to ignore it. The locum GP was originally of the lets wait and see opinion, but then phoned back and said, "I've looked at your notes, I'm doing a 2 week cancer referral". So I have an appointment on Monday. If the PSA had gone up I would be worried, but it hasn't so I'm not.

Has anyone got an opinions; should I be taking this more seriously? This is being investigated by the local hospital, should I get the Christie involved?

I will keep you informed after Monday's Urology consultation, but if anyone has advice or experiences it may help me ask the right questions.

Dave

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