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Bicalutamude and breast pain/growth - how soon?

User
Posted 10 December 2017 18:07:51(UTC)
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 December 2017 20:45:00(UTC)

Hello
I did a thread on this recently - http://community.prostat...-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?

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User
Posted 26 January 2018 19:06:11(UTC)

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

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User
Posted 04 February 2018 17:34:23(UTC)

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


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User
Posted 10 December 2017 19:40:56(UTC)

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 December 2017 21:11:26(UTC)
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 December 2017 21:27:31(UTC)

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 December 2017 23:02:51(UTC)
Damn
User
Posted 11 December 2017 01:09:48(UTC)

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 December 2017 09:22:01(UTC)
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 December 2017 10:51:19(UTC)
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 December 2017 20:45:00(UTC)

Hello
I did a thread on this recently - http://community.prostat...-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?

Thanked 1 time
User
Posted 22 January 2018 16:56:56(UTC)
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
User
Posted 26 January 2018 17:36:12(UTC)
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
User
Posted 26 January 2018 19:06:11(UTC)

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

Thanked 1 time
User
Posted 26 January 2018 20:23:20(UTC)
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 January 2018 21:19:51(UTC)

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 January 2018 22:44:23(UTC)
Jeez, surgery?

Well here’s hoping the Tamoxifen keeps growth at bay
User
Posted 27 January 2018 00:48:59(UTC)

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 January 2018 14:42:40(UTC)
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)
User
Posted 27 January 2018 16:30:32(UTC)

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 January 2018 17:02:22(UTC)
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)
User
Posted 03 February 2018 22:00:17(UTC)
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
User
Posted 03 February 2018 22:40:52(UTC)

Push for the 20mg weekly Tamoxifen ?




If life gives you lemons , then make lemonade
User
Posted 03 February 2018 23:05:49(UTC)
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 February 2018 10:11:26(UTC)

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...371/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 February 2018 11:21:33(UTC)
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...duce_Symptoms_of.11.aspx
User
Posted 04 February 2018 13:40:08(UTC)

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 February 2018 16:36:31(UTC)
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 February 2018 17:34:23(UTC)

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


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User
Posted 04 February 2018 18:16:03(UTC)
Ah I got you

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