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User
Posted 30 Nov 2024 at 21:56

Hi all

I am 58 PSA was ok 2023 then boom

Gleason 4+5

Spread to bone, so prostate stays in

2nd week on Bicalutamide, having Goserelin course in a week 10th Dec 24

Chemo 18 week course starts Jan 2025

Radiation around June 2025

Any advice for side affects

One that is hard to get head around is penis and testes shrinkage anyone brave enough to state how much shrinkage?

Also Breast increase how much?

All new to me and my manhood

Any advice regarding 1st Goserelin injection?

Thank you all for all your honesty and advice

Tony

 

User
Posted 01 Dec 2024 at 02:20

Sorry you have joined the club.

The first Goserelin/Zoladex injection takes about 2 weeks before it starts working. Different people get different of the side effects so it's difficult to know what you'll get. Hot flushes is quite a common one. Exercise tends to be the best antidote to many of the side effects (although probably no effect on hot flushes). It is very easy to put on weight, so be careful about what you eat. Have your GP monitor blood pressure, cholesterol, and blood glucose levels, because they can all be pushed up by hormone therapy.

Penile shrinkage is due to lack of regular erections - you lose your nightly maintenance erections, so you should put some effort in to getting regular erections. If you find you can't, ask for Tadalafil which can help. If that doesn't help, then ask for a pump.

Testicle shrinkage - you can't do anything about. I joking complained to my oncologist, who has a rather dry sense of humour, and he responded "Oh good, that means the hormone therapy is working".

For breast gland growth, this is often preceded and accompanied buy nipple pain/sensitivity (Mastodynia). Have a good feel of your breasts/nipples now, so you know what they feel like now. That gives you something to compare with later on. If you do get Mastodynia or you can feel breast gland tissue growing, ask if you can have Tamoxifen. This is a drug which prevents breast gland tissue growing by blocking its Estrogen receptors. Breast gland growth is most common when taking Bicalutamide by itself (not with injections), but you won't be doing that. It can happen in the injections too, but is not as common.

User
Posted 01 Dec 2024 at 03:54

Andy62

Still shocked to be in the club, only been 2 weeks since biopsy.

Thank you for all the information

Its very comforting and caring to have others inputs, basically on my own, kids left home and partner not interested in knowing about it!!

I have cut all carbs and sugar, Kato diet.

Not looking forward to going from large  Brussel sprouts to small peas in my sack of crown jewels but if it keeps me alive, o well I will get over it!! Have looked at pumps to help blood flow into penis to slow shrinkage and tadalafil to help with ED.

The breast info is wonderful thank you.

Exercise, my work involves walking around 6 hrs a day, so hopefully enough, need to pump some iron to support muscle loss and bone weakness though.

Not looking forward to hot flushes.

Started to trying and learn meditation

Thanks Andy62 keep up the will and positivity,  will update my feelings and phsyically changes i get for other poor souls that end up here cheers

Show Most Thanked Posts
User
Posted 01 Dec 2024 at 02:20

Sorry you have joined the club.

The first Goserelin/Zoladex injection takes about 2 weeks before it starts working. Different people get different of the side effects so it's difficult to know what you'll get. Hot flushes is quite a common one. Exercise tends to be the best antidote to many of the side effects (although probably no effect on hot flushes). It is very easy to put on weight, so be careful about what you eat. Have your GP monitor blood pressure, cholesterol, and blood glucose levels, because they can all be pushed up by hormone therapy.

Penile shrinkage is due to lack of regular erections - you lose your nightly maintenance erections, so you should put some effort in to getting regular erections. If you find you can't, ask for Tadalafil which can help. If that doesn't help, then ask for a pump.

Testicle shrinkage - you can't do anything about. I joking complained to my oncologist, who has a rather dry sense of humour, and he responded "Oh good, that means the hormone therapy is working".

For breast gland growth, this is often preceded and accompanied buy nipple pain/sensitivity (Mastodynia). Have a good feel of your breasts/nipples now, so you know what they feel like now. That gives you something to compare with later on. If you do get Mastodynia or you can feel breast gland tissue growing, ask if you can have Tamoxifen. This is a drug which prevents breast gland tissue growing by blocking its Estrogen receptors. Breast gland growth is most common when taking Bicalutamide by itself (not with injections), but you won't be doing that. It can happen in the injections too, but is not as common.

User
Posted 01 Dec 2024 at 03:54

Andy62

Still shocked to be in the club, only been 2 weeks since biopsy.

Thank you for all the information

Its very comforting and caring to have others inputs, basically on my own, kids left home and partner not interested in knowing about it!!

I have cut all carbs and sugar, Kato diet.

Not looking forward to going from large  Brussel sprouts to small peas in my sack of crown jewels but if it keeps me alive, o well I will get over it!! Have looked at pumps to help blood flow into penis to slow shrinkage and tadalafil to help with ED.

The breast info is wonderful thank you.

Exercise, my work involves walking around 6 hrs a day, so hopefully enough, need to pump some iron to support muscle loss and bone weakness though.

Not looking forward to hot flushes.

Started to trying and learn meditation

Thanks Andy62 keep up the will and positivity,  will update my feelings and phsyically changes i get for other poor souls that end up here cheers

User
Posted 01 Dec 2024 at 05:49

Hi Tony,

I'm also very sorry to see that you've had to join our club, there are a few other adoptive Kiwis here. Welcome to the forum.

I was also Gleason 9 (4+5) T3a. I had surgery 22 months ago. Fortunately, up to now, there appears to have been be no spread, but there are never any certainties in this game.

Andy 62, as usual, has given a brilliant response. He is very knowledgeable, a top bloke, and has helped so many, including myself, in the past.

As I have no personal experience or knowledge of what you are going though, all I do is to offer my support, mate. There are blokes on here that are having or have had similar treatment to yours. They will undoubtedly be along and help you too.

It's a shame your partner is 'not interested in knowing about it' but we've all got to play the hand we've been dealt. 

I'm so glad that you've had the courage to post on here. I promise you, mate, that we will do our best to help, advise and do  support you.

Good luck pal.

 

Edited by member 01 Dec 2024 at 09:46  | Reason: Additional text

User
Posted 01 Dec 2024 at 06:27

Thanks for the support Adrian 

So glad you are keeping it at bay.

I am looking for at about 11000 more sunrises 🌅 

Cheers mate

User
Posted 01 Dec 2024 at 08:16

Tony

 

Welcome to this forum.  And really sorry to hear your diagnosis.  You’re following 2 months on from my diagnosis - Gleason 8 with lymph nodes, lower spine and pelvis.  And we’re the same age.  It’s a bummer.  Where in the bones are you?  It’s been a roller coaster journey for me but as I say to people it is a challenge - and I relish a challenge.  And it’s good to try new things - though not sure chemo was ever on the bucket list…. But at least I can say I’ve now got the chemo t-shirt! 

 

Diagnosed on 13 August 2024.  I started on Biacutamalite on 19 August 2024.   Biopsy on 12 September.   First Zoladex/Goserelin injection 18 September 2024.  Chemo started 5 November.   Second dose was 27 November (last week).  I’m thinking all very routine. 

 

We’re all different but if I can recount my experience 

 

Sex

 

At the start this was also my biggest worry.  Prior to this diagnosis my sexual appetite was - how can I say - very healthy.  But arguably out of hand.  Porn twice a day etc.  At the start of this diagnosis the well publicised libido side affects of HT depressed me hugely.  Then when I started on HT I wondered what all the fuss was about. But then it dawned that it takes 2-4 weeks for testosterone to drain from the body.  And then the urge just went.  Bang. Chemo has made it worse and now dry ejaculations - when I can be bothered to masturbate at all.  No breast enlargement.  The shrinkage is an issue - not as bad as I was warned and viagra assists - but to be honest I’m not missing it.  If the mind doesn’t crave it I can live without it and deep down I’m wondering if this is a small penalty to pay.  But it does affect everyone differently.  I’ve read about one guy on this forum similar to me who was into cycling who (if my understanding is correct) underwent invasive surgery to allow him to pump the Crown Jewels up - but the surgery meant no more cycling which he was happy to accept.  Not for me - staying fit is key.  It is a cruel disease.  But it’s a personal choice.   And QOL is different for everyone. 

 

Alcohol

 

My second vice was alcohol.  I’m in the hospitality trade.  Was regularly over a few decades consuming more than 40 uk units a week.  Which had got worse post Covid.  I’m told PC is not a lifestyle cancer and I would hope my drinking hasn’t contributed.  Who knows.  My lovely oncologist (he asked me one or two loaded questions last week which makes me thinks he reads these posts!) has now told me to cut back on my drinking for the next 3 months (and probably for ever?!) to give my liver the best chance of coping with this Docetaxal - I guess that makes sense.  If the liver can’t cope I guess the treatment options are much reduced.  And my drinking is cut right back.  Which is something I’ve been trying to achieve in years.  So I guess thank you cancer (!!). But all my vices being removed one by one.  It ain’t fair.  I need to now concentrate on other activities! 

 

Chemo

 

Just had my second dose last week.  So far so good. PSA down from 9.1 to 0.2 in 4 months.  In fairness the first dose wasn’t bad at all and no nasty side effects. Hot flushes, hair loss started last weekend (wig purchase last week!!), taste loss for a 10 days or so, mild joint ache and a week of running to the bathroom as bad as it got.  I was told first dose is c 80% strength.  So may be second time it’ll be worse but woken up this morning 5 days in and feeling fine. I look at it that 35 years of pumping alcohol down my throat has made me immune to poison.  I also keep fairly fit - I walk 10,000 steps a day and regularly cycle.  I do think that helps.

 

My oncologist hasn’t said anything about RT but I’m sure it’s looming. 

 

Diet

 

On diet I am told with PC that sugar is not so much of an issue.  Reputedly PC gets its kicks from red meat /animal fat so that’s another pleasure gone.  And I’m told a “Mediterranean diet” and lots of fruit and veg is essential.   No hardship there.   Are you finding the Kato diet good?

 

Apart from this web site (which I’ve found really good) there’s a YouTube channel featuring a doctor called Dr Mark Scholz.  I sometimes wonder if he’s a snake oil salesman he is always so upbeat!  But I’ve found what he has said extremely informative.

 

Enough for now.  Stay positive.  Keep it up and stay in touch! I also intend to also have a few thousand more sunrises. 

 

Anthony 

User
Posted 01 Dec 2024 at 09:07
Welcome aboard Tony, can't add much more than the brilliant advice that Andy and Tony have given. Exercise is key, I banged a stone and a half on very quickly due to being ravenous while taking the chemo steroids.

Always get my 10000 steps a day in and double it on holiday.

Gave up added sugar immediately, first six months is a whirlwind but once I stopped feeling sorry for myself and acceptance kicked in you will develop a new normal.

Good luck with your treatment plan pal, lots of great advice on here if you read other members profiles.

User
Posted 01 Dec 2024 at 10:02

I was drinking fifty units a week while I was on chemotherapy and my liver readings were perfect. 
I lost half my hair and felt tired but no sickness.

 

 
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