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HT and it’s effect (and Tamoxifen)

User
Posted 14 Jan 2019 at 15:55

Hi all,

this is just a quick question to anyone in the know

 

if a man is on hormone therapy, testosterone drops and oestrogen raises - hence feminisation, breast growth/pain, loss of muscle tone, fat deposits and pelvic changes (amongst others) - but would Tamoxifen and its oestrogen inhibiting effect nullify or reduce some of these effects?

im on bicalutamide 150mg daily and Tamoxifen 20mg daily, this has greatly refuced the pain and swelling in the breast area, but I hope it counteracts my body making feminine changes in other areas too?

 

 

ps

i dont know whats wrong with this forum board but typing on my phone is a nightmare with input lag

Edited by member 14 Jan 2019 at 15:59  | Reason: Not specified

User
Posted 15 Feb 2019 at 09:44

Thought I'd write a bit about my own gynecomastia (breast growth in men), which I carefully monitored and treated. 

I've been on 50mg Bicalutamide for 5+ months (although that's just being changed as it's not a strong enough ADT treatment for me). I read a load of scientific papers on ADT in that first week I was on it, so I knew I had about a 70% chance of breast growth. I asked for prophylactic Tamoxifen or the one-shot breast radio therapy to prevent breast growth, but they said they don't do either.

About 11 weeks in, I got pain in one breast behind the nipple, and wondered if that might be the start. 3 days later, it started in the other breast too, and 2 days after that, I could feel a breast bud (firmer tissue which will become the glands and ducts) in the first one. Apparently, 11 weeks is quite early for this to happen, but it did in my case.

At that point, I asked for Tamoxifen again, and got it the same day, which I wasn't expecting after my previous requests were denied! It had been prescribed by someone I never met, and the instructions were a bit vague after it had been passed to me via a nurse. A 20mg/day dose was prescribed, but it said try just twice a week to start with (which also confused the pharmacist in Boots, not to mention that prescribing Tomoxifen to a man was new to her too, so I had to explain). I did the twice a week dose and it helped the pain (which I didn't really care about) on just those 2 days, but breast buds continued growing on both sides, the left one slightly in the lead. I also tried cutting up the 2 tablets and spreading across the week, but that didn't work either. I gradually scaled the dose up to 20mg/day, and that did work - pain was gone, and the breast buds which by that time were more noticeable (by me) stopped growing, and after a while started shrinking, left one first, so the right overtook it in size. 8 weeks on Tamoxifen, the left breast bud is undetectable by me, and the right one is almost gone. It seems like they've taken slightly longer to go than they took to grow. I've dropped back to 10mg/day and will see if that still works. If it does, I'll then try 5mg, knowing that I can reverse any growth by increasing the dose again. My understanding of woman's breast growth is that it tends to be in bursts (my browser history recently contains many bizzare things), and if this is the same for me, then I may only intermittently need the 20mg/day, but I don't yet know that. Tomoxifen in response to growth is most effective when given quickly and when it is successful, it can completely reverse growth of breast buds. However, once fibrous tissue starts forming to support the glands, the fibrous growth cannot be reversed. I've seen a number of comments suggesting you should take it within a week of growth starting, and there's no point taking it for any growth more than a year old, which it can't reverse. It looks like some of you on 150mg Bicalutamide have been given 20mg/day prophylacticly at the outset, although at that dose, breast growth is going to be even more certain, so maybe prophylactic isn't the right word.

From the published papers I've subsequently read (lots!), it seems there's actually no evidence the prophylactic 20mg twice a week dose works, but the 20mg/day dose does in 70% of cases, which is higher than the success rate with the single shot radiotherapy blast (I think that was 50-60%, but can't recall now). Tomoxifen is not without risks itself and reducing the dose when you can get away with it might reduce those risks too, although I haven't seen any research on that so it's speculation on my part. Some people can't take Tomoxifen at all due to other medical conditions. Single shot radiotherapy is also not without risks - it does cause heart damage later on in 1-2% of patients.

Breasts are not just glandular material - they also contain a lot of fat and I do have some of that (even before the HT, and even though I'm quite slim). I've seen nothing which says if Tomoxifen will protect against fat build up in breasts, or if it's only the glandular material, and I don't have enough experience myself to tell yet. I don't know if I have any extra breast fat formation since starting HT, but certainly not a lot more than was there before. I saw a video of me doing a recent presentation in quite a tight T-shirt, and breasts were noticeable, although not distinguishable from good pecs! (which they aren't). I then dug out a video of another presentation I did before being on HT, and that looked exactly the same, so I don't have any evidence of breast fat growth on HT with Tomoxifen myself.

Not all girls, and therefore I assume not all men on HT who develop breasts will get any pain. It was useful to alert me. However, at the outset of the treatment, I gave the nipple area a really good feel so I knew how it was starting out, and then periodically rechecked for any change. You should do this to check for any growth as you might not necessary get any pain alerting you. The other thing that alerted me besides deliberately checking the area was when I picked up a closed laptop or books to carry in my arm against my chest - it felt like something similar to a marball was trapped in between the hard surface and my chest, but that was in fact the breast bud inside my chest. I think my nipples may have grown too - they look a bit bigger than I remember before although not grossly so, but I didn't measure them at the outset so I can't be sure. They haven't got any bigger since being on the 20mg/day Tomoxifen, the point at which I did start measuring them.

One thing I would say is that I felt a bit on my own during this. The medical team didn't suggest that I should keep an eye out for breast growth, or what the various treatments were, and they refused the initial treatment the pamphlets they gave me suggested. It was only because I read extensively many of the relevant scientific research papers at the outset that I knew to expect it and what to ask for. The confusing Tomoxifen prescription I was given 3rd-hand was another matter. Part of me wanted to go back and double check it, but the other part of me thought I might get someone else who said I could only have 20mg twice a week (the NICE guidelines, although insufficient according to the research papers), or who took it away altogether, given I was refused initially.

Edited by member 15 Feb 2019 at 09:54  | Reason: typo

User
Posted 16 Feb 2019 at 00:48

Actually, penile shortening and loss of sexual function was about the only thing the urologist said when putting me on HT. He didn't mention anything you might do to avoid it - I found that out myself during the following week of extensive reading around HT.

I saw my GP next, and almost without me asking, he put me straight on 5mg daily Tadalafil.

I'd automatically been referred to the ED clinic on starting HT (never had any ED issues at that point - indeed that part of me worked remarkably well), but it took about 3 months to get an appointment. When the ED nurse saw my GP already put me on Tadalafil, she remarked that I had a very good GP. I have not lost any length in 5+ months so far, which is probably down to daily exercising it and the Tadalafil. (I'd never measured myself before, but I now do so every 7-10 days and store it in a spreadsheet so I will quickly spot any shrinkage, and maybe able to do something different to stop it.) The ED nurse said it's very much a case of "use it or lose it", and you must keep up with that even if your libido fails, or you will end up with irreversible shrinkage and other problems even if everything else eventually recovers after PCa treatment.

I noticed nocturnal/morning wood and the occasional unexpected erection you get all stopped within days of starting HT. These are important for penile health if you are not having erections for sex, which is why extra effort is required to make sure do you keep having regular erections. HT has not so far interfered with erections when I've wanted them - still as hard as before and lasting as long as I want. The only ED issues I've noticed is it can be more difficult to orgasm (2 or 3 times over the 5 months, I gave up, which had never happened before), semen volume is perhaps only 1/3rd or 1/4 of what it was and more watery, and a possible slight drop in libido.

I'm just about to go on stronger HT, and urologist advised that probably will impact my erections and libido. In preparation, I just got a vacuum pump to make sure I can continue exercising it if natural erections let me down. My treatment is not yet decided (still more scans to go), but whatever it is, it's likely to seriously impact erections temporarily, if not permanently.

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User
Posted 14 Jan 2019 at 17:53
I did Bical 150 and Tamoxifen 20 for 11 months with very little side effects apart from initial 2 weeks. Breasts were ok no growth but tender. I was randy as ever. Not sure if it affected EF as I was still recovering so to speak. Bical is not true HT like castrate level injections. Yes T lowers but it is more about disguising it tbh.
User
Posted 14 Jan 2019 at 18:54

Bill

 

I've 8 months of bicalutimide to go.  Most of my body hair has fallen out.  I had very hairy shoulders, back, chest, legs and arms.  Now, whilst some of the females on here might consider it a blessing that all that hair has fallen out, I don't.  It's just a reminder that I am on cancer treatment.  I hope it grows back, but maybe not as thick.  My pubic hair fell out during radiotherapy, but it has grown back.

And i'm having problems typing on my iPad and iPhone.

Ulsterman

User
Posted 15 Feb 2019 at 09:44

Thought I'd write a bit about my own gynecomastia (breast growth in men), which I carefully monitored and treated. 

I've been on 50mg Bicalutamide for 5+ months (although that's just being changed as it's not a strong enough ADT treatment for me). I read a load of scientific papers on ADT in that first week I was on it, so I knew I had about a 70% chance of breast growth. I asked for prophylactic Tamoxifen or the one-shot breast radio therapy to prevent breast growth, but they said they don't do either.

About 11 weeks in, I got pain in one breast behind the nipple, and wondered if that might be the start. 3 days later, it started in the other breast too, and 2 days after that, I could feel a breast bud (firmer tissue which will become the glands and ducts) in the first one. Apparently, 11 weeks is quite early for this to happen, but it did in my case.

At that point, I asked for Tamoxifen again, and got it the same day, which I wasn't expecting after my previous requests were denied! It had been prescribed by someone I never met, and the instructions were a bit vague after it had been passed to me via a nurse. A 20mg/day dose was prescribed, but it said try just twice a week to start with (which also confused the pharmacist in Boots, not to mention that prescribing Tomoxifen to a man was new to her too, so I had to explain). I did the twice a week dose and it helped the pain (which I didn't really care about) on just those 2 days, but breast buds continued growing on both sides, the left one slightly in the lead. I also tried cutting up the 2 tablets and spreading across the week, but that didn't work either. I gradually scaled the dose up to 20mg/day, and that did work - pain was gone, and the breast buds which by that time were more noticeable (by me) stopped growing, and after a while started shrinking, left one first, so the right overtook it in size. 8 weeks on Tamoxifen, the left breast bud is undetectable by me, and the right one is almost gone. It seems like they've taken slightly longer to go than they took to grow. I've dropped back to 10mg/day and will see if that still works. If it does, I'll then try 5mg, knowing that I can reverse any growth by increasing the dose again. My understanding of woman's breast growth is that it tends to be in bursts (my browser history recently contains many bizzare things), and if this is the same for me, then I may only intermittently need the 20mg/day, but I don't yet know that. Tomoxifen in response to growth is most effective when given quickly and when it is successful, it can completely reverse growth of breast buds. However, once fibrous tissue starts forming to support the glands, the fibrous growth cannot be reversed. I've seen a number of comments suggesting you should take it within a week of growth starting, and there's no point taking it for any growth more than a year old, which it can't reverse. It looks like some of you on 150mg Bicalutamide have been given 20mg/day prophylacticly at the outset, although at that dose, breast growth is going to be even more certain, so maybe prophylactic isn't the right word.

From the published papers I've subsequently read (lots!), it seems there's actually no evidence the prophylactic 20mg twice a week dose works, but the 20mg/day dose does in 70% of cases, which is higher than the success rate with the single shot radiotherapy blast (I think that was 50-60%, but can't recall now). Tomoxifen is not without risks itself and reducing the dose when you can get away with it might reduce those risks too, although I haven't seen any research on that so it's speculation on my part. Some people can't take Tomoxifen at all due to other medical conditions. Single shot radiotherapy is also not without risks - it does cause heart damage later on in 1-2% of patients.

Breasts are not just glandular material - they also contain a lot of fat and I do have some of that (even before the HT, and even though I'm quite slim). I've seen nothing which says if Tomoxifen will protect against fat build up in breasts, or if it's only the glandular material, and I don't have enough experience myself to tell yet. I don't know if I have any extra breast fat formation since starting HT, but certainly not a lot more than was there before. I saw a video of me doing a recent presentation in quite a tight T-shirt, and breasts were noticeable, although not distinguishable from good pecs! (which they aren't). I then dug out a video of another presentation I did before being on HT, and that looked exactly the same, so I don't have any evidence of breast fat growth on HT with Tomoxifen myself.

Not all girls, and therefore I assume not all men on HT who develop breasts will get any pain. It was useful to alert me. However, at the outset of the treatment, I gave the nipple area a really good feel so I knew how it was starting out, and then periodically rechecked for any change. You should do this to check for any growth as you might not necessary get any pain alerting you. The other thing that alerted me besides deliberately checking the area was when I picked up a closed laptop or books to carry in my arm against my chest - it felt like something similar to a marball was trapped in between the hard surface and my chest, but that was in fact the breast bud inside my chest. I think my nipples may have grown too - they look a bit bigger than I remember before although not grossly so, but I didn't measure them at the outset so I can't be sure. They haven't got any bigger since being on the 20mg/day Tomoxifen, the point at which I did start measuring them.

One thing I would say is that I felt a bit on my own during this. The medical team didn't suggest that I should keep an eye out for breast growth, or what the various treatments were, and they refused the initial treatment the pamphlets they gave me suggested. It was only because I read extensively many of the relevant scientific research papers at the outset that I knew to expect it and what to ask for. The confusing Tomoxifen prescription I was given 3rd-hand was another matter. Part of me wanted to go back and double check it, but the other part of me thought I might get someone else who said I could only have 20mg twice a week (the NICE guidelines, although insufficient according to the research papers), or who took it away altogether, given I was refused initially.

Edited by member 15 Feb 2019 at 09:54  | Reason: typo

User
Posted 15 Feb 2019 at 15:03

I've been on 150mg/day bicalutimide for 6 months now. I asked for Tamoxifen at my initial oncology appointment and my oncologist was happy to prescribe it for me. I started out with a 20mg tablet once a week, but I started developing tender nipples, so he upped the dosage to 20mg twice a week and that worked fine for me. I've had very few physical side-effects from the bicalutimide otherwise; just the expected loss of libido and almost dry orgasms.

Chris

User
Posted 15 Feb 2019 at 15:04
When I asked about gyno at my first SRT consult my onco just looked at me and shrugged it off like it was a non issue.
User
Posted 15 Feb 2019 at 15:28

I’m now 1 month into 20mg Tamoxifen daily (upped from 10mg daily)

the improvement in the pain is good, the hardness is lessening on the right side (which was the worst one) 

the left one is completely pain free now, with no hard lump, although it is still larger than before bicalutamide started 14 months ago (fatty tissue)

User
Posted 15 Feb 2019 at 15:36

Originally Posted by: Online Community Member
When I asked about gyno at my first SRT consult my onco just looked at me and shrugged it off like it was a non issue.

It was only through reading about breast growth here that I knew to ask about it at my oncology appointment. They certainly wouldn't have offered Tamoxifen had I not asked for it.

Chris

 

User
Posted 15 Feb 2019 at 19:09

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
When I asked about gyno at my first SRT consult my onco just looked at me and shrugged it off like it was a non issue.

It was only through reading about breast growth here that I knew to ask about it at my oncology appointment. They certainly wouldn't have offered Tamoxifen had I not asked for it.

Chris

 

God it angers me how they can be so dismissive 

Bri 

User
Posted 15 Feb 2019 at 19:23
I always take the view, Bri, that it's up to me to be an "informed patient".

Chris

User
Posted 15 Feb 2019 at 20:21

I agree, but not everyone is capable of the research necessary, and at some point I might not be either.
Care shouldn't be of a lesser standard if you aren't so informed - that doesn't feel right.

User
Posted 15 Feb 2019 at 21:24

You should have seen his body language at the session where he told me I had relapsed. Casually leamimg on a gurney scribbling notes on a pad dangling from his leg. Attentive ...  not.

User
Posted 15 Feb 2019 at 21:25
Vulnerable patients are not able to process the information and without advocacy just get sausage factory treatment. Seen and heard it too often.
User
Posted 15 Feb 2019 at 23:02

Right from the start I felt fully aware of the gynecomastia risks, put it to the oncologist, was fobbed off with concerns about pelvic surgery embolism

i wish I had been more like Ulsterman and taken more control of it with my GP

User
Posted 15 Feb 2019 at 23:35
Don’t get me started on how they all deny penile shortening is a thing
User
Posted 16 Feb 2019 at 00:48

Actually, penile shortening and loss of sexual function was about the only thing the urologist said when putting me on HT. He didn't mention anything you might do to avoid it - I found that out myself during the following week of extensive reading around HT.

I saw my GP next, and almost without me asking, he put me straight on 5mg daily Tadalafil.

I'd automatically been referred to the ED clinic on starting HT (never had any ED issues at that point - indeed that part of me worked remarkably well), but it took about 3 months to get an appointment. When the ED nurse saw my GP already put me on Tadalafil, she remarked that I had a very good GP. I have not lost any length in 5+ months so far, which is probably down to daily exercising it and the Tadalafil. (I'd never measured myself before, but I now do so every 7-10 days and store it in a spreadsheet so I will quickly spot any shrinkage, and maybe able to do something different to stop it.) The ED nurse said it's very much a case of "use it or lose it", and you must keep up with that even if your libido fails, or you will end up with irreversible shrinkage and other problems even if everything else eventually recovers after PCa treatment.

I noticed nocturnal/morning wood and the occasional unexpected erection you get all stopped within days of starting HT. These are important for penile health if you are not having erections for sex, which is why extra effort is required to make sure do you keep having regular erections. HT has not so far interfered with erections when I've wanted them - still as hard as before and lasting as long as I want. The only ED issues I've noticed is it can be more difficult to orgasm (2 or 3 times over the 5 months, I gave up, which had never happened before), semen volume is perhaps only 1/3rd or 1/4 of what it was and more watery, and a possible slight drop in libido.

I'm just about to go on stronger HT, and urologist advised that probably will impact my erections and libido. In preparation, I just got a vacuum pump to make sure I can continue exercising it if natural erections let me down. My treatment is not yet decided (still more scans to go), but whatever it is, it's likely to seriously impact erections temporarily, if not permanently.

User
Posted 16 Feb 2019 at 13:26

Let's not forget some benefits of HT - you probably don't have any choice so you may as well make the most of them while you can...

When doing the clothes washing, I pick up used T-shirts, vests, etc, give them a quick inspection for dirt and do a sniff test, and on that basis, decide if they need washing or can be worn again. I suddenly realised almost no T-shirts had been going for a wash for perhaps 2-3 weeks. Then I realised I had no BO (Body Odor) anymore, so I stopped using deodorant - I don't need it anymore. I still sweat - loads actually as I'm frequently power cycling, but there's no odor generated. Bizzarely, the BO did come back at one point for a week, but then vanished again (which also corresponded to a temporary increase in semen).

Another side effect told to me by someone else I know who was on HT for 18 months was that his hair on his bald head started growing again towards the end of the 18 months. I did read a case of one guy who stayed on HT because it gave him his hair back, and that was presumably particularly important to him.

 

Edited by member 16 Feb 2019 at 13:28  | Reason: Not specified

User
Posted 16 Feb 2019 at 13:35
Andy

That really threw me when I realised that it had happened to me. The usual unthinking male armpit sniff test after one of my few trips to the gym and it was like WTF?!?! Not a hint of smell of dead socks crossed with camembert :)

When I read your post I though we are damn lucky HT does not take us to the point where your post would read "When doing the clothes washing, I pick up used T-shirts, vests, etc.and neatly folded them and put then tidily into the wash basket, ironed the curtains, made the bed then and cried whilst watching Loose Women." :) :)

I never got told about penile shortening for HT - thought it was just surgery.

 
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