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Hormone treatment : breast enlargement

User
Posted 06 Jun 2019 at 14:39

I have stage III Gleason score 9 metastatic prostate cancer and will be on hormone treatment for the rest of my life, disregarding all the stuff I should be worrying about I don't want to grow breasts

From what I have read about a third of men (on ADT) have problems with enlarged breasts. I am interested in breast bud radiotherapy (ie stop breast enlargement BEFORE it starts) but no one I have spoken to yet (my key worker) has any knowledge of this type of prevention.

My key worker response was less than helpful.

    'don't worry you're unlikely to get breast enlargement and if you do there are things we can do to rectify it'

As far as I can tell once the breasts are enlarged there is very little to be done......only stopping further enlargement is possible.

Anybody had breast bud radiotherapy and how do you go about getting information on it. thanks in advance !-)

User
Posted 06 Jun 2019 at 16:09
It’s much more common (in the UK at least) to be prescribed Tamoxifen to suppress breast development (a 20mg tablet once or twice a week is normal). It doesn’t work for everyone, but it worked fine for me. I’d speak to your oncologist about it.

Best wishes,

Chris

User
Posted 06 Jun 2019 at 16:10

Firstly, it doesn't happen to everyone.
Some hormone therapy (HT) drugs are more likely to do it than others. Bicalutamide (androgen blocker) is probably the worst in this respect.

There are two main treatments:

The radiotherapy blast you mention, which has around a 50% success rate. It also has a 1-2% rate of damaging underlying heart muscle, but this has never been known to cause a problem, and has only been found when scanning the heart afterwards for some other reason. I've seen several different stories on when to have it, such as must be within 1st month of HT, or must be before breast growth starts. My NHS hospital said they don't do it anyway, not even privately (although I subsequently found someone who said they do). I phoned around and found the London Clinic did the procedure privately, but wouldn't do it until symptoms had showed up. So there was no consensus on the treatment protocol.

The other is the drug tamoxifen, which is more commonly used to treat breast cancer. This has a 70% success rate. It's not suitable for all patients - past DVT or cardiac issues would likely rule it out. For patients on bicalutamide, it's sometimes prescribed with the bicalutamide. For patients on other HT drugs, I get the impression its prescribed only if you ask, and often only when symptoms start.

I asked when I started on bicalutamide and I was refused both the radiotherapy blast and tamoxifen. This didn't leave me feeling good about it, and was when I started investigating getting the RT blast privately, but before I found they wouldn't do it until symptoms started, and it only had a 50% success rate, and I think it was about £5k.

After 11 weeks on bicalutamide, the breast pain started (not particularly painful, and by itself, ignoreable), but the following week, I could feel breast bud development. I contacted my Macmillan nurse, and they got me a tamoxifen prescription the same day. It came via several people from an oncologist I never met with some strange instructions - the dose was 20mg daily, but with a note to say try it twice a week to start with. I didn't want to ask too many questions in case they changed their minds, but I interpreted this as adjust dose to symptoms, up to a max of 20mg/day.

I started with the 20mg twice a week, but it didn't seem to be helping, and both breast buds were growing quite rapidly (not noticeable to anyone else yet, but felt like marbles under my nipples). Anyway, I eventually had bumped the dose up to maximum within a month, and by then the breast buds stopped increasing in size. I was quite happy they didn't show, but even more pleased that over the following months they shrunk and vanished.

If you are on tamoxifen, you should get a full blood count and liver function test after about 3 months to make sure your liver is happy with tamoxifen. Mine wasn't, so I started reducing the dose to see what the minimum I could get away with was. Eventually I had reduced it to nothing and I haven't taken any for 2 months now, and breast growth hasn't come back. It probably will, but I'll dose the tamoxifen accordingly when it does. On the other hand, I have switched to Zoladex now, and incidence of breast growth on Zoladex is less than that on bicalutamide, so it might be that I don't get it happening again.

I also read up a lot about tamoxifen. It can reverse recent breast growth - the more recent the growth, the more effective it is. Growth that's been there a year or more cannot be reversed. I am doubtful the normal dosing advice is correct for sudden onset treatment, but probably is correct as a prophylatic dose given when starting bicalutamide (see https://community.prostatecanceruk.org/posts/t17616-Breast-growth-with-bicalutamide-and-tamoxifen#post215572 for the gory details). Also, in response to growing increasing glandular material, your body will also start growing fibrous tissue to support that, and tamoxifen will not reverse the fibrous tissue formation. Mine didn't get anywhere near that far.

If you are carrying a lot of body fat, some of that might migrate to breasts, and I don't believe either the single blast radiotherapy or tamoxifen will prevent fat growth.

Edited by member 06 Jun 2019 at 16:16  | Reason: Not specified

User
Posted 07 Jun 2019 at 00:01
Stupid isn’t it? John would have much preferred RT to the breast buds to taking tamoxifen but was refused on the grounds that bicalutimide doesn’t cause breast growth. He was also refused tamoxifen for the same reason. Then he grew moobs, hated them and stopped the HT early - everyone except our hospital seems to know that this is a known side effect of bicalutimide

If a man grows breasts and can then demonstrate that these are causing significant emotional harm, he is entitled to breast removal on the NHS - we have members here who have had that surgery. It would be cheaper to give the zap of RT than to offer surgical removal later :-(

PS the health professional that suggested moobs are reversible (and therefore a minor inconvenience?) should spend an hour or two with all the men who feel their lives are ruined by a painful and permanent change to their body.

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

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User
Posted 06 Jun 2019 at 16:09
It’s much more common (in the UK at least) to be prescribed Tamoxifen to suppress breast development (a 20mg tablet once or twice a week is normal). It doesn’t work for everyone, but it worked fine for me. I’d speak to your oncologist about it.

Best wishes,

Chris

User
Posted 06 Jun 2019 at 16:10

Firstly, it doesn't happen to everyone.
Some hormone therapy (HT) drugs are more likely to do it than others. Bicalutamide (androgen blocker) is probably the worst in this respect.

There are two main treatments:

The radiotherapy blast you mention, which has around a 50% success rate. It also has a 1-2% rate of damaging underlying heart muscle, but this has never been known to cause a problem, and has only been found when scanning the heart afterwards for some other reason. I've seen several different stories on when to have it, such as must be within 1st month of HT, or must be before breast growth starts. My NHS hospital said they don't do it anyway, not even privately (although I subsequently found someone who said they do). I phoned around and found the London Clinic did the procedure privately, but wouldn't do it until symptoms had showed up. So there was no consensus on the treatment protocol.

The other is the drug tamoxifen, which is more commonly used to treat breast cancer. This has a 70% success rate. It's not suitable for all patients - past DVT or cardiac issues would likely rule it out. For patients on bicalutamide, it's sometimes prescribed with the bicalutamide. For patients on other HT drugs, I get the impression its prescribed only if you ask, and often only when symptoms start.

I asked when I started on bicalutamide and I was refused both the radiotherapy blast and tamoxifen. This didn't leave me feeling good about it, and was when I started investigating getting the RT blast privately, but before I found they wouldn't do it until symptoms started, and it only had a 50% success rate, and I think it was about £5k.

After 11 weeks on bicalutamide, the breast pain started (not particularly painful, and by itself, ignoreable), but the following week, I could feel breast bud development. I contacted my Macmillan nurse, and they got me a tamoxifen prescription the same day. It came via several people from an oncologist I never met with some strange instructions - the dose was 20mg daily, but with a note to say try it twice a week to start with. I didn't want to ask too many questions in case they changed their minds, but I interpreted this as adjust dose to symptoms, up to a max of 20mg/day.

I started with the 20mg twice a week, but it didn't seem to be helping, and both breast buds were growing quite rapidly (not noticeable to anyone else yet, but felt like marbles under my nipples). Anyway, I eventually had bumped the dose up to maximum within a month, and by then the breast buds stopped increasing in size. I was quite happy they didn't show, but even more pleased that over the following months they shrunk and vanished.

If you are on tamoxifen, you should get a full blood count and liver function test after about 3 months to make sure your liver is happy with tamoxifen. Mine wasn't, so I started reducing the dose to see what the minimum I could get away with was. Eventually I had reduced it to nothing and I haven't taken any for 2 months now, and breast growth hasn't come back. It probably will, but I'll dose the tamoxifen accordingly when it does. On the other hand, I have switched to Zoladex now, and incidence of breast growth on Zoladex is less than that on bicalutamide, so it might be that I don't get it happening again.

I also read up a lot about tamoxifen. It can reverse recent breast growth - the more recent the growth, the more effective it is. Growth that's been there a year or more cannot be reversed. I am doubtful the normal dosing advice is correct for sudden onset treatment, but probably is correct as a prophylatic dose given when starting bicalutamide (see https://community.prostatecanceruk.org/posts/t17616-Breast-growth-with-bicalutamide-and-tamoxifen#post215572 for the gory details). Also, in response to growing increasing glandular material, your body will also start growing fibrous tissue to support that, and tamoxifen will not reverse the fibrous tissue formation. Mine didn't get anywhere near that far.

If you are carrying a lot of body fat, some of that might migrate to breasts, and I don't believe either the single blast radiotherapy or tamoxifen will prevent fat growth.

Edited by member 06 Jun 2019 at 16:16  | Reason: Not specified

User
Posted 06 Jun 2019 at 23:22
Thanks for the replies. A lot of information to to take in .......but a great help . Thanks again
User
Posted 07 Jun 2019 at 00:01
Stupid isn’t it? John would have much preferred RT to the breast buds to taking tamoxifen but was refused on the grounds that bicalutimide doesn’t cause breast growth. He was also refused tamoxifen for the same reason. Then he grew moobs, hated them and stopped the HT early - everyone except our hospital seems to know that this is a known side effect of bicalutimide

If a man grows breasts and can then demonstrate that these are causing significant emotional harm, he is entitled to breast removal on the NHS - we have members here who have had that surgery. It would be cheaper to give the zap of RT than to offer surgical removal later :-(

PS the health professional that suggested moobs are reversible (and therefore a minor inconvenience?) should spend an hour or two with all the men who feel their lives are ruined by a painful and permanent change to their body.

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

User
Posted 07 Jun 2019 at 07:09

Tamoxifen is so cheap too (providing you don't live in the US). A years supply of 2 x 20mg per week costs the NHS less than £10 in the UK.

Contrast that with the price of a moob removal, not to mention the emotional issues, and it's a no brainer.

User
Posted 07 Jun 2019 at 07:18
I'd just add that I wasn't offered Tamoxifen when I was put on Bicalutamide - I had to ask for it (I knew about it from reading this forum). It was promptly given when I did ask, though. Nobody argued about it. I was initially prescribed 20mg once a week, but started getting sensitive nipples a month or so into my HT. I contacted my oncologist who suggested I take 20mg twice a week and that's completely sorted the problem for me. No more soreness and no enlargement. I've now been on HT for 10 months.

Cheers,

Chris

User
Posted 11 Jun 2019 at 21:13

Thanks for all the replies

From what I've read it seems if you're on bicalutamide 'men frequently have breast growth' . If on 'Lupron-like drugs there is a 1 in 3 chance of getting breast enlargement' (the key to prostate cancer M.Scholz pg 240).

I'm on Prostrap which is a Lupron like drug.

So I am going to pursue medication or radiation that will stop or slow breast growth

To quote Prostate Cancer uk 'Living with hormone therapy' 'A guide for men with prostate cancer' pg 44

'If you are about to start anti-androgens, your doctor will suggest treating the breast area with a a low dose of radiotherapy'

This did not happen

The guide then goes on to discuss Tamoxifen

Nobody including my key worker mentioned Tamoxifen

I am going to pursue this until a medical practitioner gives me a valid reason not to.

Nice guidelines on prostate cancer are not very comprehensive...... but maybe I should get a 12 week exercise course as well    :-)

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#people-having-hormone-therapy 

Gynaecomastia

1.4.16For people starting long-term bicalutamide monotherapy (longer than 6 months), offer prophylactic radiotherapy to both breast buds within the first month of treatment. Use a single fraction of 8 Gy using orthovoltage, or electron beam radiotherapy. [2008]

1.4.17If radiotherapy does not prevent gynaecomastia, consider weekly tamoxifen[5]. [2008]

Fatigue

1.4.18Tell people who are starting androgen deprivation therapy that fatigue is a recognised side effect of this therapy, and might not be because of their prostate cancer. [2014]

1.4.19Offer people who are starting or having androgen deprivation therapy supervised resistance and aerobic exercise at least twice a week for 12 weeks to reduce fatigue and improve quality of life. [2014]

User
Posted 12 Jun 2019 at 09:30
Good Luck!

From the few times the topic has come up since I've been here, it seems that the guidelines aren't followed as well as they should be as regards breast enlargement.

i was simply told "it can happen, if it's a problem, come back and we can talk about it" (abbreviated and paraphrased!).

As it happened, mine was minor and not a problem. But the guidelines seem to be thorough, and should be followed.

User
Posted 12 Jun 2019 at 10:27

I'm looking at 1.4.19 and wondering if I could get some advice on exercise whilst on ADT. I cycle - good for leg muscles and cardio, but that's not the weight bearing/shock exercise advised for bone strength. My full body MRI threw up an issue with a lumbar disk (not PCa related), which means some of the shock through the spine exercises are probably not a good idea, and sit-ups are contra-indicated (strangely, I'm good at them although not something I practice). Don't know about weight training. Some professional guidance taking into account my MRI scan would be great, if it was available.

 
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