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Hormone Therepy

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User
Posted 11 May 2016 at 13:23

Hi, I'm currently waiting on a referal to come through to see a consultant about having brachytherepy treatment but am already having second thoughts on whether or not this is the way I want to go. My gut reaction was to have external beam radiotherepy but my onocologist informed me that I would have to combine this with hormone therepy. I'm only 41 so am already concerned with what I'm going to be left with after treatment and the additional side effects of hormone therepy really bother me. I know I should be grateful for early detection of PC and that my situation could be so much worse but I really want to find a way through this that leaves me in a situation I can live with. I'd appreciate knowing what hormone therepies people have been prescribed and which ones have the least long term side effects. I did ask about radiotherepy to minimise breast development but was told that this wasn't offered by my health authority, so knowning what hormone therepies don't have this as a side effect would help.

 

Thanks,

 

Andrew.

User
Posted 11 May 2016 at 14:53
Hi Andrew,

I had HT (Prostap injections) from January 2013 to November 2015 at 3 monthly intervals. At first I had frequent hot flushes which diminished over the course of the injections. Early on I often felt tired but lacked energy throughout the treatment, I put on weight around my middle and developed 'moobs'. I was told to exercise regularly to help prevent any muscle loss. I don't know how long HT stays in the system but since stopping it my energy levels in the past couple of months have increased. I had a bone scan last year which showed some slight bone thinning for which I take Adcal tablets. HT affects everyone differently but over all I think I've been fairly fortunate regarding side effects.

Arthur

User
Posted 11 May 2016 at 15:33

Hi Andrew
I've been on Bicalutamide 150 mg for 7 months since an unsuccessful prostatectomy. I take a weekly Tamoxifen to prevent moobs and soreness which is working fine. My libido is fine but the operation left me impotent unfortunately at 48. My main concerns are fatigue and emotions. I get occasional hot flushes. I'm afraid PCa is a real git , and whichever path you choose may leave you with ED , but at least with RT it can take a while before that happens. Best wishes
Chris

User
Posted 11 May 2016 at 18:06

Like Chris I'm on 150 mg bicalutamide although only for 6 months. Just picking up on your point about RT to minimise breast issues Andrew I was told that my centre does not usually offer this to men on 6 months or less on Hormone Therapy but will do so for men on longer courses.

My centre also has what they call RAD/LED clinics where you discuss side effects with a senior radiographer who will then refer you to a doctor if any side effects need treating. At my first such clinic the young lady asked if she could feel my breast (oooh matron!) and she said that there was a good chance my breast symptoms would subside over time as there was no evidence of fibrous growth. It does seem as if the longer courses of treatment might require more intervention. I can refer to my brother's experience here. He was on bicalutamide for 20 months. He asked about treatment for breast enlargement and was told that RT was not an option for him as he suffered from a heart condition (atrial fibrillation) and the site was too near to the heart. Breast reduction surgery was mooted as a possible solution after treatment had finished. In the event he did not pursue this and decided he could live with it. I must admit it doesn't show that much on him.

Edited by member 11 May 2016 at 18:07  | Reason: Not specified

User
Posted 12 May 2016 at 13:03

Thanks all - I appreciate all your comments and will mull over what treatment to have over the next couple of days. I have a consultation for brachytherapy on Tuesday so will try to make a final decision after that. My head isn't really in the right place at the moment and I feel like I'm going for treatment for my family rather than myself and with all the side effects I'd like to say sod it and ignore the situation but appreciate I'd feel a whole lot differently in 5/10 years time when the consequences of that decision started to bite.

It's a wierd situation to be in where the disease has so few symptoms and the treatment has so many life changing consequences!

 

 

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User
Posted 11 May 2016 at 14:53
Hi Andrew,

I had HT (Prostap injections) from January 2013 to November 2015 at 3 monthly intervals. At first I had frequent hot flushes which diminished over the course of the injections. Early on I often felt tired but lacked energy throughout the treatment, I put on weight around my middle and developed 'moobs'. I was told to exercise regularly to help prevent any muscle loss. I don't know how long HT stays in the system but since stopping it my energy levels in the past couple of months have increased. I had a bone scan last year which showed some slight bone thinning for which I take Adcal tablets. HT affects everyone differently but over all I think I've been fairly fortunate regarding side effects.

Arthur

User
Posted 11 May 2016 at 15:33

Hi Andrew
I've been on Bicalutamide 150 mg for 7 months since an unsuccessful prostatectomy. I take a weekly Tamoxifen to prevent moobs and soreness which is working fine. My libido is fine but the operation left me impotent unfortunately at 48. My main concerns are fatigue and emotions. I get occasional hot flushes. I'm afraid PCa is a real git , and whichever path you choose may leave you with ED , but at least with RT it can take a while before that happens. Best wishes
Chris

User
Posted 11 May 2016 at 18:06

Like Chris I'm on 150 mg bicalutamide although only for 6 months. Just picking up on your point about RT to minimise breast issues Andrew I was told that my centre does not usually offer this to men on 6 months or less on Hormone Therapy but will do so for men on longer courses.

My centre also has what they call RAD/LED clinics where you discuss side effects with a senior radiographer who will then refer you to a doctor if any side effects need treating. At my first such clinic the young lady asked if she could feel my breast (oooh matron!) and she said that there was a good chance my breast symptoms would subside over time as there was no evidence of fibrous growth. It does seem as if the longer courses of treatment might require more intervention. I can refer to my brother's experience here. He was on bicalutamide for 20 months. He asked about treatment for breast enlargement and was told that RT was not an option for him as he suffered from a heart condition (atrial fibrillation) and the site was too near to the heart. Breast reduction surgery was mooted as a possible solution after treatment had finished. In the event he did not pursue this and decided he could live with it. I must admit it doesn't show that much on him.

Edited by member 11 May 2016 at 18:07  | Reason: Not specified

User
Posted 11 May 2016 at 18:29

I've been on HT for 3 months (just had my 1st Prostap 3-month injection). My only side-effects have been Hot flushes, mostly in the Evening at night; and some ED problems. I have been prescribed Viagra, and it sort of works, but not fully, yet.

Hopefully everything will go back to normal after HD Brachy. 

User
Posted 11 May 2016 at 18:37

Andrew

This is me and bear in mind forum posts tend to reflect those with concerns rather than the 'I'm fine'. I was a very active guy which Zoladex halted very quickly and for many months. Your young age could well help you recover from any side effects. RT is more likely to cause longer term side effects, usually ED.

As regards moobs: My onco examined me and said "fat showing up more as you're slim". All I can say is they got no worse but neither have they lost weight.

Ray

User
Posted 11 May 2016 at 20:58
I have gained weight around the middle and my moobs have changed a little but not noticeably to others, apart from my wife who sometimes laughs at the state of me !

However I detest the hot flushes and find I am more emotional than I used to be ( teariness ). But it's a small price to pay if it helps fight this disease. ED is a problem too but there is help available. Whatever you decide I hope that you have a great GP to help you. Mine is fantastic and has been very supportive with her help for me throughout my travels with PCa.

Good luck,

John

User
Posted 11 May 2016 at 23:29

Had 8 months of Zoladex in 2007/8. Became tired quickly, loss of libido and poor erections. Nipples became tender and moobs grew. Weight increased. External Beam RT added to premature fatigue and I also needed to 'pee' more frequently, though the latter reverted to pre RT levels by about a couple of months after HT/RT ended. Energy returned gradually but unable to get weight back to pretreatment levels. Also, erections continued to weaken. HT and RT singly or combined can affect men to a greater or lesser extent in various ways. Furthermore, some men cope better with cetain types of HT than others. You can obtain a detailed list of potential side effects but not how badly you will be affected as an individual.

Barry
User
Posted 12 May 2016 at 05:23

hi

I take it the HT will only be taken whilst on the treatment, from what I read on here think Lyneyre mentioned it work on twice as long for your system to get back to normal compared to how long you have HT

can only tell you how it affects me but my HT is long term, been on zoladex for 14months, hot flushs, nil labido, fatigue, weight gain and bone pain have also had anxiety

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 May 2016 at 07:12

Hi Andrew

I'm been on on HT for around 4 1/2 months.

Zoladex every three months + Xtandi (enzalutamide) 160mg Daily + Abiraterone 1000mg Daily....So I'm being hit with every HT arsenal under the sun......a NUCLEAR HT treatment!

I've had three noticeable side effects (expected):

1. Hot flushes......ALL THE TIME.

2. Higher Blood Pressure (expected....taking medication for it).

3. Loss of Sex drive......It's OK I've had my fair share ( I've been at it since I was 12 y/o)....besides I'm saving TONS on money!

 

All of these side effects should go away after my HT is over in a couple of years or so....you just have to learn how to deal with it.

Besides IMHO your attitude should be ....I WANT TO KILL THIS THING INSIDE ME...AND I WILL DO WHATEVER IT TAKES!

Like me....you have discovered this monster EARLY! We are VERY LUCKY! 

User
Posted 12 May 2016 at 13:03

Thanks all - I appreciate all your comments and will mull over what treatment to have over the next couple of days. I have a consultation for brachytherapy on Tuesday so will try to make a final decision after that. My head isn't really in the right place at the moment and I feel like I'm going for treatment for my family rather than myself and with all the side effects I'd like to say sod it and ignore the situation but appreciate I'd feel a whole lot differently in 5/10 years time when the consequences of that decision started to bite.

It's a wierd situation to be in where the disease has so few symptoms and the treatment has so many life changing consequences!

 

 

 
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