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Bicalutamude and breast pain/growth - how soon?

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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 00:33

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 08:52  | 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 ?

If life gives you lemons , then make lemonade

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.

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 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

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 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

 
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