Bicalutamude and breast pain/growth - how soon?

User

Posted 10 Dec 2017 at 18:07

Hi all,

Just a quick question to draw from your experiences

I started the casodex on Friday, so far haven’t noticed any differences at all in any way. One thing I am concerned about is the breast growth potential. I rung the Consultants secretary to ask if I could be started on Tamoxifen but the message I got back was that they don’t prescribe it as a matter of course, and to discuss it with her when I go for my scan prep appointment (don’t know yet when that is though)
Now I’m taking it from that response that if it becomes an issue then tamoxifen may be a possible option

I’m a bit paranoid about it really and tonight my nipples feel quite red and warm and a bit rigid.

Am I simply imagining this or reading too much into it? Or does it start very early !

Appreciate any advice

Bill

User

Posted 11 Dec 2017 at 20:45

Hello
I did a thread on this recently - http://community.prostatecanceruk.org/posts/t13232-Tamoxifen---a-good-thing#post173566 which hopefully will answer some of your questions.

I agree with Lynn though, the chest/nipple pain is really quite notable! I think mine came in after a few months, but my memory isn't that good. The RT was done at the start, but didn't seem to be effective. The more recent reports recommend Tamoxifen over RT, maybe print it off and take it to your next onco meeting?

User

Posted 26 Jan 2018 at 19:06

My HT caused a little breast growth, and I had to stop wearing t-shirts and start wearing baggy shirts. Now it may have been the HT or or just me trying to put a bit of happiness in my life, the shirts were all summer muticoloured Hawiian type, and still wear them now.

My advice is not to worry too much, its worth the annoyance to stay alive. Also eat well, try to keep the calories down so the weight doesnt pile on. I gained 10 pounds, about 4 kilo, and that was with the eat well diet. Now a year and a bit on, just managed to lose a few pounds, so more to go.

toad

User

Posted 04 Feb 2018 at 17:34

No, I am saying that neither tamoxifen or RT are guaranteed to help and we have seen members in the past who experienced significant distress due to their moobs while others weren't really bothered by it. Absolutely right to do what you can to mitigate the side effects but also you need to keep an eye on your mental wellbeing - don't set too high expectations of the treatment.

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

User

Posted 30 May 2018 at 01:33

Just a wee update

had my oncology review 8 weeks after RT, all seems ok, bladder and bowel seem back to normal, still feel more tired but that may be the bicalutamide

worst symptom by far is the nipple pain/breast growth. So self conscious about it now. I was on 20mg tamoxifen weekly but today put on 10mg daily - so I’m hoping the nipple pain goes away

as for the growth? Well reading up on it some people return to normal with tamoxifen or when bicalutsmide stops, some stay with permanent moobs, so who knows what I can expect - I gave another 18 months of bicalutamide

but hey ho, could be worse, I have no immediate problems with bowel/bladder, can still have full normal sex, and libido is at a good level so I’ll take that

Edited by member 30 May 2018 at 09:52 | Reason: Not specified

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User

Posted 10 Dec 2017 at 19:40

I did 11 months of Bical but was prescribed 20mg once per week of Tamoxifen along with it. Zero growth but soreness in that area. Some people have a blast of RT to that area to prevent growth. Stamp your feet maybe ?

User

Posted 10 Dec 2017 at 21:11

Yeah think I will mate, this bloody disease causes enough unwelcome changes and I’m not having more if it can be helped

👍

User

Posted 10 Dec 2017 at 21:27

John was refused both - no tamoxifen, no RT to the breast buds. It took a couple of weeks to start affecting him though

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

User

Posted 10 Dec 2017 at 23:02

Damn

User

Posted 11 Dec 2017 at 01:09

I am wrong - the breasts didn't start to be a problem for at least a month here.

It is possible that it is psychosomatic Bill - feeling warm and hard is hardly classic symptoms! Tingling and pain, more like - especially if knocked. And I think you would be a test case at the next international urology conference if you had problems after only 3 days!

The official line is that breast problems only occur in men that are on bicalutimide for more than 6 months. NICE guidelines say if you are expected to be on bicalutimide for at least 6 months, you are entitled to 8Gy of RT I think, but it only works if given at the very start of you being on the HT. Tamoxifen can be prescribed later if you need it so perhaps the doc is thinking 'wait and see'?

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

User

Posted 11 Dec 2017 at 09:22

Yes Lynn I think the Doc is saying “wait and see”

And I think I was imagining it yesterday, probably the cold weather affecting things more than the HT

I’ll be sure to bring it up next meeting though

User

Posted 11 Dec 2017 at 10:51

I don’t think I would want radiotherapy to my breast area tbh

Especially with the risk of cancer there in future, with any luck I might be in the percentage of men unaffected but my gut feeling is that I won’t

Since this diagnosis I havent felt I have had much luck with being in the lucky percentages

User

Posted 11 Dec 2017 at 20:45

Hello
I did a thread on this recently - http://community.prostatecanceruk.org/posts/t13232-Tamoxifen---a-good-thing#post173566 which hopefully will answer some of your questions.

User

Posted 22 Jan 2018 at 16:56

I had my planning meeting/scan this afternoon. My Onco listened to my concerns about the pain and enlargement that I’m experiencing.

She offered radiotherapy to the breast area but I said I wasn’t keen on that as I didn’t want to do more damage to my body and also the possible risk of breast tissue cancer later on (my mother died of breast cancer)

I asked about Tamoxifen and she said that was an option, it advised that the risk of DVT for men with pelvic surgery and radiotherapy is high, but said it was my decision.

I opted for the Tamoxifen as I don’t want radiotherapy, or growing breasts and the pain I’m in with it

So, Radiotherapy treatment to start n 2 weeks time and to get a prescription for Tamoxifen from GP and then hope I don’t get DVT

Edited by member 22 Jan 2018 at 17:58 | Reason: Not specified

User

Posted 26 Jan 2018 at 17:36

Well, got my prescription for Tamoxifen, had to get my GP to chase for it though

Also it’s 10mg (weekly) rather than 20mg, so I’ll see how it goes and if it’s not helping I’ll push for 20mg

Edited by member 26 Jan 2018 at 17:44 | Reason: Not specified

User

Posted 26 Jan 2018 at 19:06

toad

User

Posted 26 Jan 2018 at 20:23

Is the breast growth permanent? Or does it recede again once the HT stops and the testosterone resumes it’s action on the body?

User

Posted 26 Jan 2018 at 21:19

Usually permanent but a couple of members here have been able to get breast reduction surgery on the NHS later

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

User

Posted 26 Jan 2018 at 22:44

Jeez, surgery?

Well here’s hoping the Tamoxifen keeps growth at bay

User

Posted 27 Jan 2018 at 00:48

Some men develop moobs that would have graced page 3 in its day while others get nothing. Some can cope with loose fitting clothing while others find it devastating and confidence shattering. John was fortunate that he already had decent pecs so no-one really noticed when they grew (except me and him) and he is fairly robust so there was a lot of joking about it in the pub. But I know that he was very self conscious for a long time.

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

User

Posted 27 Jan 2018 at 14:42

I feel pretty annoyed with my Onco, yes she has agreed to prescribe Tamoxifen, but only after about a months insistence and her offer of radiotherapy to the breast area

I saw her on Monday, she agreed, I said I was keen to start ASAP because of the pain and discomfort (can’t run now because it’s too sharp & painful)

I phoned her secretary on Tuesday to ask if it could be faxed to speed things up. Phoned again on Thursday - again a lack of response.

I had a GP appt on Friday AM (for the epididymitis) and mentioned it to him. He agreed that delaying it was pointless and said he would phone and get a verbal OK to provide me with a prescription.
At 4:30pm I got it - then look at it and see that it’s for 10mg weekly

Now I’ve done some searching and the literature/trials seem to recommend 20mg weekly

An I being unreasonable here? Feels I’m having to push for it and being slowed down

(I know that others like Lynn’s John were refused so I feel lucky in some respects, just don’t understand the resistance to get the correct treatment/dose)

Edited by member 27 Jan 2018 at 14:44 | Reason: Not specified

User

Posted 27 Jan 2018 at 16:30

General NHS guidance is that tamoxifen can be prescribed as 10mg or 20mg in men on casodex for more than 6 months who have developed breast issues and radiotherapy has been tried but has not helped. I am not sure how long you are supposed to be on the casodex for but on the basis that you don’t meet the other criteria and your dose is within guidelines why not wait to see what happens? If you do start to have problems you can always ask for the dose to be increased? Tamoxifen does hav3 side effects for some people and there have been no large scale studies on what impact it might have on the effectivess of the hormone treatment.

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

User

Posted 27 Jan 2018 at 17:02

I’m on Casodex for 2 years, so I should be happy to be getting it at all

Just being an impatient prima dona really as the pain and tenderness is doing my head in, but I only started tamoxifen yesterday so yes, I should give it time

(Really really DONT want to grow breast tissue though)

Edited by member 27 Jan 2018 at 17:42 | Reason: Not specified

User

Posted 03 Feb 2018 at 22:00

Well I’m pretty annoyed with the whole gynecomastia issue

Since early on starting bicalutamide I noticed sensations/tingling in my nipple area and bought this immediately (and probably prematurely ) to my onco’s attention to be fobbed off

Then a month in when there was definitely growth and much more pain i again contacted to be put off again. Then 2 weeks ago when I met face to face she was reluctant and wanted to offer radiotherapy to the nipples even though this as an option is supposed to be treated before growth starts

So now I find myself 2 months on bicalutamide, 2 weeks on 10mg weekly tamoxifen - with mucho increasing pain and growth and now have 2 small breasts -it’s depressing really to see the difference and feel the acute pain and tenderness

In pretty sure if my onco was facing a treatment which might cause her to go bald and grow male genitalia she would be doing all she could to avoid that but I just don’t feel taken seriously about the whole gyneconastia issue that hormone therapy brings, - and more besides, she mentioned zero about it when she put me on hormone therapy - it was my own knowledge from these forums that made me aware of it

Edited by member 03 Feb 2018 at 23:13 | Reason: Not specified

User

Posted 03 Feb 2018 at 22:40

Push for the 20mg weekly Tamoxifen ?

User

Posted 03 Feb 2018 at 23:05

I hear you Chris

I start Radiotherapy on Wednesday but will be push push pushing for 20mg

Personally I think it’s absolutely ridiculous that prophylactic treatment for this serious side effect is not given high priority
Lyn stated that John was totally refused tamoxifen or even radiotherapy to breast area - absolute joke tbh

User

Posted 04 Feb 2018 at 10:11

My nipples were zapped early on, around the time when I started HT, and before RT. I gather this is the normal way to proceed. That said, there is good reason for reviewing the procedure; see http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0136094 The RT to my nipples did not stop the pain or growth at all. I did get some interesting red rings, and was told that if I go topless in the sun at any pint for the rest of my life, I will need some serious factor suncream. So for me, nipple RT was an all round failure.

I agree with your view that oncos don't appear to give this issue equivocal significance, which is a shame. It appears that many men are suffering unnecessarily. Perhaps it's worth printing off the above article to present to your onco? I talked through the issue (quite firmly) with my onco, who then prescribed me 10mg Tamoxifen daily. This has worked a treat, no complaints at all. The only possible side effects I have had are fatigue and hot flushes, but my suspicion is that is down to the Bicalutimide. Interestingly, I've just had ear-based acupuncture for the flushes, and it works!

User

Posted 04 Feb 2018 at 11:21

Thanks for the info Graham, I can’t understand why I’m being given 10mg weekly when the issue is steadily worsening

I mean surely if oestrogen is affecting me then taking a pill once per day isn’t going to make a difference for the remaining 6 days

But I will take that journal article to my next meeting - and be very firm about what treatment I need for side effects

Edit:

I just read a San Francisco article stating that Tamoxifen has a half life of 6-7 days so weekly dose makes sense now

https://journals.lww.com/oncology-times/Fulltext/2004/07100/Early_Data__Tamoxifen_May_Reduce_Symptoms_of.11.aspx

Edited by member 04 Feb 2018 at 11:33 | Reason: Not specified

User

Posted 04 Feb 2018 at 13:40

I think you also need to keep in mind that some men get no breast problems while others are massively affected and neither RT or tamoxifen are an absolute cure for everyone - it may be that you are going to have moobs whatever treatment or dose you are offered. The men on here that have coped best over the years were the ones that accepted breasts as evidence of the PCa being treated, in the same way that impotence or loss of libido is.

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

User

Posted 04 Feb 2018 at 16:36

Originally Posted by: Online Community Member

The men on here that have coped best over the years were the ones that accepted breasts as evidence of the PCa being treated, in the same way that impotence or loss of libido is.

Im not sure what you mean Lyn, are you saying that men should accept the side effects of pca as inevitable without seeking ways to help?

I mean I know that there is huge variety in how things affect people but I don’t want to just give up at 48 and not try and get help with the pain and discomfort - as well as the body image part of it

Maybe I should, but it’s difficult for me to give up and accept the ravages of this disease as inevitable - they probably are but if there’s a chance at a better QoL then I feel I need to go for it - anything else would feel like giving up to me

User

Posted 04 Feb 2018 at 17:34

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

User

Posted 04 Feb 2018 at 18:16

Ah I got you

Yeah you’re correct for me to be not over optimistic

User

Posted 30 May 2018 at 01:33

Just a wee update

had my oncology review 8 weeks after RT, all seems ok, bladder and bowel seem back to normal, still feel more tired but that may be the bicalutamide

worst symptom by far is the nipple pain/breast growth. So self conscious about it now. I was on 20mg tamoxifen weekly but today put on 10mg daily - so I’m hoping the nipple pain goes away

but hey ho, could be worse, I have no immediate problems with bowel/bladder, can still have full normal sex, and libido is at a good level so I’ll take that

Edited by member 30 May 2018 at 09:52 | Reason: Not specified

User

Posted 30 May 2018 at 15:34

Been off the bicultamide and tamoxifen(daily) for two months now.I still have sore breasts behind the nipples and if anything I feel they have got even more tender, no sign of them shrinking yet.

As you say it could be worse. I am off on holiday in another month and as i am conscious of these moobs i shall be wearing a rash vest around the various pools.

I went to usa last year and quite a few men were wearing these swimming t shirts. Fellow PC? Sufferers. Who knows?

Edited by member 30 May 2018 at 15:35 | Reason: Not specified

User

Posted 30 May 2018 at 19:00

If the growth doesn’t reduce then I will be exploring the surgery route

User

Posted 30 May 2018 at 22:13

Bill

Been on bicalutimide now for three months. My nipples are hard and sore. I've been on tamoxifen 20mg weekly from the start.

I've had 20 radiotherapy sessions with 13 left to go. Had to have an emergency meeting with my urologist as I'm finding it practically impossible to hold my 3 glasses of water even though my bladder isn't full. I just pee constantly. If I take a drink, 5 minutes later I'm away to the toilet. I've almost wet myself on the radiotherapy table on several occasions.

Prescribed mirabegron and solifenacin today to try to overcome the problem.

Ulsterman

User

Posted 31 May 2018 at 00:15

Hey Ulsterman

sorry to hear that you are having difficulties with the RT. Mine wasn’t too bad but my sessions were all at 9am and I did find that the extra drinking of fluids plus the radiotherapy made me pee frequently for several hours afterwards, I think the RT irritated my waterworks

but it wasnt as bad as you are experiencing but hopefully it settles down after the RT

Edited by member 31 May 2018 at 08:58 | Reason: Not specified

User

Posted 02 Jun 2018 at 00:29

I thought moobs were a permanent side effect although the pain should stop once HT finishes. What does PCUK say?

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

User

Posted 02 Jun 2018 at 13:56

Unfortunately I think you are correct Lyn

your husbands remained the same after stopping HT?

User

Posted 02 Jun 2018 at 15:40

Don't know if this is relevant as I was only on bicalutamide for 6 months. Some pain although tolerable and this disappeared on completion of the course. I do have some residual enlargement.

My brother's PSA has started rising after his treatment back in 2013 (high dose brachytherapy, 15 sessions of ERBT and 2 years bicalutamide) and he has been put back on bicalutamide. In the light of his previous issues with bicalutamide he has been prescribed tamoxifen this time round without having to ask for it.

User

Posted 03 Jun 2018 at 21:57

Well there is some good news, after almost a week the daily 10mg dose, the pain is starting to ease off a bit, it would be great for it to disappear altogether

Edited by member 04 Jun 2018 at 11:55 | Reason: Not specified

User

Posted 04 Jun 2018 at 01:05

Originally Posted by: Online Community Member

Unfortunately I think you are correct Lyn

your husbands remained the same after stopping HT?

Yes although he already had big pecs from the rugby & gym so over the years since, he has done a lot of work and just looks stacked :-)

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

User

Posted 07 Jun 2018 at 20:46

On a different note,I’ve noticed over the past week or 2 that my chest/arm/leg hair has thinned out and decreased

only noticed it after starting daily 10mg Tamoxifen but I think it’s more likely to be the Bicalutamide?

Plus, tiredness and muscle weakness seems more difficult than pre- HT

User

Posted 11 Jun 2018 at 18:12

Update

pain seems to be gradually diminishing but still quite sore and tender at nipple buds, less than before though

moobs are there, not huge bit bigger than before. I’m also probably about 7 to 10 lbs overweight so about to start a renewed exercise and diet change regime to see how that affects the appearance

i need to be careful though since the bicalutamide has caused low iron/ haemoglobin and also low white blood cell count

User

Posted 12 Jun 2018 at 17:09

Originally Posted by: Online Community Member

On a different note,I’ve noticed over the past week or 2 that my chest/arm/leg hair has thinned out and decreased

only noticed it after starting daily 10mg Tamoxifen but I think it’s more likely to be the Bicalutamide?

Plus, tiredness and muscle weakness seems more difficult than pre- HT

Yes - I had the same. Once I'd finished the bicalutamide the chest wig grew back more luxuriant than ever - not sure I wanted that! I also had an odd effect in that my hair, on the head that is, seemed to get a bit darker. It was my wife who noticed this first. Must be rare though because nobody else has mentioned this.

User

Posted 12 Jun 2018 at 17:14

It is the hormones doing their work. Your body feminises - loss of body hair, widening hips, slackened ligaments around the pelvis, loss of muscle power. When you stop HT some of these things revert and for Topgun I remember that was how he knew his HT was failing - his chest hair started to regrow.

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

User

Posted 13 Jun 2018 at 23:58

Originally Posted by: Online Community Member

blimey Lyn,

scary, I’ve noticed hip pain I’ve never had before - maybe that’s down to the changes you mention

however, since I’ve recently been upped to 10mg Tamoxifen daily then I’m hoping that will reduce the feminisation effects as the oestrogen should be nulled out

i hooe anyway, I don’t want an hourglass figure 😬

User

Posted 04 Oct 2018 at 15:23

now 6 months after RT

Breast growth remains but at least not continuing to grow. Pain almost gone in my left breast area but slightly more painful in the right - still, 80% less painful than before the Tamoxifen

libido? still there but the desire is slightly diminishing, although this might be down to fatigue which still comes and goes.

potency still there when we do have sex, which is wonderful as I really worried about that - fingers crossed no long term issues appear

bladder irritation settled quickly after RT, altered bowel habits disappeared too - although just over last 3-4 weeks my insides have felt like a washing machine, and I'm worried I may now have IBS. However, I'm not sure. I stopped chewing gum which can apparently cause IBS symptoms and gas, also stopped eating All Bran - and over past 2 days things settled back down so I will just need to monitor that

ho hum

User

Posted 05 Oct 2018 at 11:11

I had no breast growth, and I've never met anyone who had more than slightly sore nipples, I've bumped into many men who have been through the treatment , so don't assume it's bound to happen.

We are all different, I got a bigger gut and thighs, which have now gone.

It seems almost everybody gets hot flushes, most get fatigue, and my knuckles swelled up and kept locking😀😀

User

Posted 05 Oct 2018 at 12:42

So far, so good for me. 7 weeks so far on 150mg daily bicalutimide and 20mg weekly tamoxifen. No breast growth or soreness.

Chris

User

Posted 05 Oct 2018 at 13:03

We have a couple of members who have needed breast removal surgery and more who suffer great emotional distress / embarrassment and feel unable to go on a beach for example. It doesn't affect every man but for some, the impact is dreadful.

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

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Bicalutamude and breast pain/growth - how soon?

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