Bicalutamide nipple pain

User

Posted 12 Feb 2018 at 21:49

Anyone on Bicalutamide only hormone therapy? I'm have very painful nipples am also taking Tamoxifen to stop side effects but can't really find anything to stop the nipple pain and still have 2 1/2 tears to go.

Does anyone have any suggestions?

User

Posted 13 Feb 2018 at 09:16

Hello Duggie and welcome

I'm sure other men on here have experienced the same side effects to some degree so it's just a question of waiting for one of them to see your post.

In the meantime, you could try telephoning the very helpful nurses on this site on the number which appears above

Good luck and best wishes

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 13 Feb 2018 at 09:24

Hi Duggie

The pain really can be quite intense. It could be that your Tamoxifen dose needs increasing. I'm on 10mg daily, which has worked. Others have been on weekly amounts (10 or 20mg) with mixed results. It could also be that patience is required - it took around 6 weeks before the Tamoxifen finally did its job.

Good luck
Graham

User

Posted 13 Feb 2018 at 17:01

Hi Duggie,

I had similar pain, but my course was only 6 weeks. It finished just over 2 weeks ago and there is still some pain. I had trouble sleeping on my front. I was not proscribed counter-active drugs as it was a short course. I don't know what I can suggest to ease the pain, but I wanted to acknowledge your post and offer you some moral support.

Pale Rider

User

Posted 14 Feb 2018 at 06:21

Hi there, I share your pain there. I started Bicalutamide in December 11th 2017 and within 6 weeks has tingling, then intense pain and swelling/growth beneath my nipples. I bugged the hell out of my oncologist for Tamoxfen and was eventually prescribed 10mg weekly Tamoxifen 3 weeks ago

So far the Tamoxifen isn’t making a difference but I’ve asked for the 20mg dose (though I’m expecting a “it’s too early to see the self debt of the 10mg dose” response)

It’s a real issue though and one I feel is under addressed in terms of importance - to me personally anyway as I find it stressful, painful, embarrassing and just one more change to my life with this awful disease

Edited by member 19 Mar 2018 at 09:05 | Reason: Not specified

User

Posted 24 Feb 2018 at 10:46

Thanks Graham

That's useful to know, I'm 20ml weekly and it's been about 8 weeks and has only got a lot worse, I find it hard to drive with a seatbelt on.

Unfortunately, I also have a Kidney Stone (the reason I found out about the prostate cancer) they're operating on that in about a month and I have to stop the Tamoxifen as it increases the chances of DVT if you have the higher levels of oestrogen is your system during the operation.

I’ll chat to my Oncologist on my Radiotherapy follow up which is next week and ask if after my op they might increase my Tamoxifen dosage.

Thanks again for taking the time as it has been very useful.

Hope things go well for you

Doug

User

Posted 24 Feb 2018 at 10:52

Thanks Pale Rider

One of my favorite films and one of the very few films I could watch again and again.

A few people have responded so hopefully it'll give me ideas of what I need to be asking from my Oncologist.

Take care

Doug

User

Posted 24 Feb 2018 at 11:08

It is under addressed, mine causes difficulty driving so I have to take the seat belt off or keep adjusting it which is to say the least very annoying apart from waking a dozen times a night if I move onto them.

I get the impression that they think, “why are you worrying about a bit of boob pain when you’ve got Cancer” but that’s the point, the last thing you need is additional things that will degrade your quality of life.

Thanks for your post, I’ll keep onto them until I get something sorted and will contact the drug company that developed Bicalutimide to se if they have any suggestions as I’ve still got 2½ years left taking it and have no intention of being in this sort of pain for that time if I don’t have to be.

Will keep you posted if I get anything useful back from anyone.

Doug

User

Posted 24 Feb 2018 at 19:01

I took my first bicalutimide tablet this morning. Dreading the side effects.

Ulsterman

User

Posted 24 Feb 2018 at 20:04

Originally Posted by: Online Community Member

That may be part of it but I think there is also an over expectation that medical science can solve all problems when it can't - neither tamoxifen nor RT to the breast buds can guarantee to prevent moobs or reduce the pain etc. Some men aren't affected at all while others have a dreadful time - not sure that anyone would be able to say for certain afterwards whether they fared better because of tamoxifen or whether they might just have been one of the luckier ones. I suspect that if it was preventable, men would not be able to have breast reduction surgery on the NHS afterwards.

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

User

Posted 25 Feb 2018 at 02:14

A nice view/quote, not heard it before.

It’s not the breast growth that’s causing me a problem, as you say that can be dealt with after the event, my understanding was that Tamoxifen and RT would help prevent breast growth but not guaranteed to but would do nothing to prevent breast/nipple tenderness.

The breast/nipple tenderness as they call it (slightly more than tenderness in my opinion, very painful in my case) can’t be dealt with after the event only at the time, and as I said I have 2 ½ years still to put up with it.

I still agree with KayakerBill it is under addressed, pain unfortunately is not visual, because breast growth is very visual they have addressed this with Tamoxifen/RT, possibly the reason the severe pain (at times) has not been addressed is because it’s being called tenderness by the medical profession so not really a problem.

The one thing I don’t want is after the 3 years for someone to say, you weren’t given ‘Thingyofen’ stopped my pain straight away lol.

I will continue to try to find if there is anything that might help though, medical science is quite advanced in pain control hopefully.

Thanks for your interest and comments though.

User

Posted 25 Feb 2018 at 11:06

The pain is caused by the growth or by the changes needed in prep for the growth - tamoxifen and RT are not painkillers.

This is what most girls experience as they reach puberty and some experience it worse than others but extreme tenderness is a problem for most. You would be unlucky to have the pain for the entire 3 years. Regular paracetamol should help.

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

User

Posted 25 Feb 2018 at 23:00

The pain I can handle, it’s the growth that bothers me much more, I feel very self conscious and ashamed of my body having these 2 small alien lumps where I didn’t used to

Oh well, maybe the Tamixifen increase to 20mg will halt the growth

User

Posted 27 Feb 2018 at 10:58

I only notice my boobs when I’m looking in a mirror after a bath normally and they’re not massive just obvious to me possibly, my partner jokes about it so it’s not a problem, as I’m just about to go for surgery for a Kidney stone and have had to stop Tamoxifen that might change.

But the pain is with me 24/7 paracetamol helps for a few hours maybe.

One thing I know is I’ll a bit more sympathetic to my 4 Granddaughters 2 of which have been through puberty, I understand them lol.

How do they decide on the amount of Tamoxifen needed, anyone know? Mine was 20ml Once a week why? I think other people have it daily 10mg/20mg, is it just a finger in the air or based on something? Weekly and daily is quite a difference!

Once the breast tissue has formed your options are a bit limited.

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