Bicalutamude and breast pain/growth - how soon?

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 ?

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

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'?

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

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

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

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.

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.

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

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

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

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

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

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

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

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.

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 :-) 

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 

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

Chris