Srage 3 advanced local prostate cancer

User

Posted 19 Aug 2020 at 21:04

This is my fist post after being told I had prostate cancer on the 20th Dec 2019,I wasn't shocked or upset I just accepted it...it's not in my nature to worry or be upset I'm a realistic person who likes to know all the facts.

My PSA was 109 my Gleeson score 9 both high and the cancer being aggressive it is what it is....

They started me on 2 harmone injection to shrink the cancer and I have started 20 sessions of radiotherapy at a high dosage I think....they changed it from 37 sessions to 20 radiotherapy sessions just before I started them....

I will have had 10 radiotherapy sessions tomorrow and last week they wanted to give me anotger harmone injection my 3rd but I refused to have this treatment...To me it's not living changing my sex from a man to a eunuch being chemically castarated it's just a step to far in my eyes.

I've aways had faith and if death comes which I know it will it's God's will...but to be on harmone treatment for 3 years sweating like a pig swimming in my own sweat 24/7 that's no life for me...it's pure torture after living as a man all my life then soon as this cancer comes jump on the chemical bandwagon to extend my life by a couple of years and loose myself my identity as a man to become a dosile eunuch I cannot do this to myself.

I understand other men wishing to live at any cost but it's not my cup of tea I was born a man and then now at 57 years old take these chemical injections and transform myself into a pale shadow of myself "a eunuch" NO!

My doctor understand my position I'm an old style guy not one of these "new men" I endure hardship and death is just another hardship to endure....

I've asked how long will I have left to live but the specialist never give me a rough idea they say it depends?

I have stage 3 prostate cancer it's aggressive they say it's not moved into any organs or tissue as yet but my thinking is it MUST have small micro particles of cancer which they cannot pick up will be present....The radiotherapy will kill off the cancer in my prostate BUT it will come back with a vengeance and spread rapidly that's the nature of cancer there is no remission once you have cancer it always comes back...

Is anyone else in the same boat as me regarding this chemical harmone injection as a step to far?

User

Posted 20 Aug 2020 at 08:07

Charles,

The hormone therapy does increase the chance of a cure, or of longer time in remission. The long duration out to 3 years gets you progressively less benefit, but sticking with it during the RT treatment and the immediate aftermath is the most significant part. I think you should consider at least one more shot to cover the RT and aftermath (the radiotherapy continues working after the treatment finishes).

There are things which can help with the hot flushes, some which you can try yourself, others are drugs you oncologist can prescribe if they're causing you major issues (which sounds like they are).

In the US it is more common to refuse hormone therapy or to use shorter periods, but I think in the UK patients generally want the maximum chance of a cure (although not in all cases).

User

Posted 20 Aug 2020 at 08:54

Hi Sisko, we share a birthday, St Swithens day. We also share a G9 score and a T3, though my PSA was only 25 at dx. We have a similar attitude to PCa, it's there, I've got it now let's move on. We don't share exactly the same attitude to HT, being a eunuch is s**t, but I think the benefits related to RT as outlined by Andy are worth it, as long as HT is temporary. I do agree that if my cancer returns and HT was offered as treatment for the remainder of my life I would probably decline it. One of our members, ChrisJ has resisted HT for many years in order to enjoy a better quality of life.

Dave

User

Posted 20 Aug 2020 at 09:04

I understand where you're coming from (but different circumstances).

At 57 and stage 3 (I'm guessing T3 - locally advanced?) I'm wondering if they offered you surgery as an option? It sounds like it might have been a better fit for your way of thinking than HT/RT (but depends a bit on your circumstances).

I was offered bicalutamide in April when my surgery was delayed due to COVID. I declined it (as did the other guy who had his surgery done on the same day as me in June).

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 20 Aug 2020 at 10:35

I am 55 years old, I am T3a (Gleason 9) but had RP in July 2020. I wonder why surgery was not offered?

I was on HT (Bical and Prostap) for 3 months as soon as I was diagnosed. The Prostap "finishes" next week but i know it will take 3+ months for me to get back to any semblance of normality.

HT affected me greatly both workwise (less mental ability/memory) and outside of work (fatigue, frequent hot flushes, insomnia, weight increase, depression, gym fitness). For someone who had zero symptoms before PCa this hit me hard. The complete loss of libido has been the worse part as I am (was) oversexed. This is an important part of my QoL.

I fully understand your view and also Chris's (please read some of his posts) about HT. I will need to carefully think about QoL when my cancer recurs as HT has impacted my QoL too much.

User

Posted 20 Aug 2020 at 11:27

Really!? This is just 3yrs of hormones not life on them, they could give you years of life and potentially cure you. You say your 'an old style guy not one of these "new men" I endure hardship and death is just another hardship to endure'

I was in the army for 24years and now work within the prison service so would say I'm an 'old style guy' too but I want to live and will do what it takes to enable me to do that. Hormone's have side effects yes but its not that bad! I went straight to the ED clinic, got a pump a prescription of Cialis and I have a very active sex life. Yes its hard work, yes you have to want to try and yes you have to focus but a sex life easily achievable.

Weight gain - I have not lost or put on 1 pound since starting, I run and go to the gym.

Fatigue - I have worked full time through chemo and radiotherapy and obviously hormones.

Sisko, everyone is different but I think your just giving up way to easily, you say your used to hardship then prove it and give the treatment a go. You say 'I was born a man and then now at 57 years old take these chemical injections and transform myself into a pale shadow of myself "a eunuch" NO!' Really? c'mon its not that bad, believe me, its only 3 years and there's lots of brilliant advice here on how to sort out loads of problems associated with hormones

I do hope all goes well and I know I sound a bit harsh but sometimes its needed to 'snap' some folk out of the 'its all over attitude'

User

Posted 20 Aug 2020 at 18:32

Thank you all for your reply and insight into the hormone treatment and what is available...

I have thought long and hard about this issue going on hormone treatment for 3 years means that once the specialist decide you can come off it your own testosterone will never come back!

Can you remember the man in Barnsley who couldn't live with a colostomy bag a couple of months ago who chose to die?

That's how I feel I've had a good life with my testosterone I love being a man and even for 3 years of just controlling the cancer isn't worth it for what I have to give up...It's ME my character my personality.

This harmone treatment does change you as a man your outlook etc etc...I spoke to one of my friends who's husband has been on hormone treatment for a long time..she says he isn't the same man she married he's become docile and has no drive it's him but not him it's only because she loves him that she stays...

She says he had drive and fire and brimstone always the man of the moment party animal alive! But know he just shuffles about the house scared to do anything that may cause a breakage of his bones...

These are her words "The fire has gone out within him"

Our testosterone is what makes us a man it gives us the length of our penis & testicles makes our frame solid & muscular or bones strong and without that one chemical we are not men....

I can truly understand 99% of the men wanting life but it's just not for me.Three years of chemicals then my testosterone never comes back and all that DAMAGE done to your body can never be undone!

It is truly a step too far in my eyes I am 57 strong slim fast my mind is sharp I love sports half marathons mountain biking judo karate etc etc

When I was younger I fought in martial arts competitions...run any distance from 100m to half marathon I love being a man a man's man my children love their mad dad who's impulsive active in all sports with them and I would give up far too much just to gain a couple of years!

Stage 3 cancer cannot be cured only controlled then the cancer gets use to the harmone and it starts to grow again and then once again your on the radiotherapy roundabout more chemicals then poss chemotherapy!

Cancer treatment hasn't moved on as such it's still blast with rays and as a last resort the chemical from the Witches cauldron! Chemotherapy

Me as I am now I'm sat in front of a fan cooling myself down! This nonsense is 24/7 none stop sweating like someone thrown a bucket of water over me....I'm walking around in shorts all day and still the hot flush comes on and I'm soaking wet!

I haven't slept properly for 6 months because of it and if I do fall asleep the whole bedding is soaking wet that's how much I'm sweating every day and night!

I don't want to give up my testosterone it's selfish but I'm prepared for death it holds no fear for me...I've always had strong faith and it's God just calling on me to come.....

Other men can and want to live a life without sex but at 57 there is still a lot of lead in my pencil!...I still have wet dreams in my 50s I still wake up with a morning wood!

I would loose all that as a man...for a Frankenstein medical treatment messing about with a man's testosterone like I'm some sort of cat or dog being de balled chemically!

We have all seen how a dog or cats character changes once they have their meat & two veg cut off? They loose that Va Va Voom and are docile!

That's what happens to a man on harmone treatment,they may not see it themselves but others notice that the spark that made you...YOU is gone and it will never come back even if you stop the harmone treatment. ...That's the TRUE facts...

A STEP TOO FAR FOR ME

Edited by member 20 Aug 2020 at 19:57 | Reason: Not specified

User

Posted 20 Aug 2020 at 19:10

Thanks for your insight I'm pleased someone sees there is more to a life than just being here as a pale shadow of yourself becsuse harmone treatment will change you as a man

My prostate cancer is also T3a

PSA 109

Grade 4

Gleason 9

With all the above I was told my cancer is aggressive especially with a high PSA

It is what it is....sex is very important to me I'm slim very fit waist 30 inch waist strong still got my hair...good looking dude!

Still get wet dreams in my 50s wake up with an early morning "wood" and I like that feeling I get each morning of that surge of testosterone which gets me bounding around the house 3am in the morning 7 days a week!

Once I started the Frankenstein harmone chemical I've never in my life felt weak physically until a couple of weeks ago weak in my legs like some old maid!

That's what the harmone does to us men..life is meant to be lived at 100mph as a man....That's how I've lived and enjoyed my time right up to taking the harmone injections then that Va Va Voom just vanished!

After 3 years of being on harmone treatment all the damage done cannot be reversed in just stop taking the harmone treatment!....THE DAMAGE DONE IS PERMANENT

The mad scientist have invented a control for prostate cancer and all those who want to live at any price will take it gladly BUT I cannot and will not sacrafice me as a man to just live a couple more years....

They say with their slogan "We going to beat cancer"

They can't even cure the common Cold? So how they going to cure cancer? It's so random over 200 different flavors of it...and realistically cancer treatment is still the medeviel method of blast it with rays which might give you cancer then when that fails get the big guns out the Frankenstein chemotherapy that toxic mix to make you sick...That's cancer treatment today it's not moved on much!

Once again I have to dart for the fan again at 1900hrs to keep the sweat from building up to a waterfall...I get so over heated my palms turn bright red!

What I have endured for 6 months is NOT living at all I'm just surviving enduring and I can't do this for 3 years and turn myself into a docile eunuch like some cat or dog that's had its bits cut off....A step too far for me!

User

Posted 20 Aug 2020 at 19:33

Andy62 Thanks for your reply/response these experts think we are stupid? After 3 years on hormone treatment you cannot just stop it and wait for your testosterone to recover or reverse all the damage done by the harmone treatment!

The treatment is not reversable the harmone which your on for 3 years alters your physical body!

Life is meant to be lived not just being here...That's not enough.

These hot flushes and sweating like a pig it's none stop all day and night!

That feeling of being weak I've never ever felt that until a few weeks ago like some old maid!...I'm a man

WE are men and it means so much to me to carry on as I was before taking this Frankenstein chemical

I see the point of being on it for 6months to shrink the cancer for the radiotherapy to blast it...BUT with a cancer of T3a Gleason 9 Grade 4 and a PSA of 109 they blast the cancer but there are micro cancers which are already in various tissues within my body which the radiotherapy cannot kill because the technique is a specific blasts

So I might as well enjoy my life as a man instead of altering my body by the chemical harmone just to squeeze out another 3 years of sweating & heart problems and weak bones and all else which goes with this treatment. ...

All that medical science has to offer sometimes WE have to say NO its too much and for me it's just too much to loose of myself

Edited by member 20 Aug 2020 at 19:37 | Reason: Not specified

User

Posted 20 Aug 2020 at 20:15

I really do understand how most men 99% choose to go for the harmone treatment BUT I cannot after 6 months which I needed to take to reduce my prostate cancer ready for blasting with radiotherapy proton beams then anotger 3 years?

Cancer treatment hasn't evolved much from blasting and chemotherapy...Then once your cancer comes back and it will don't be fooled by the remission lie your back on the roundabout of the specialist messing about with you....

Medical advancment is not always the best option everyone dies and today people think medical science can fix all ailments. ...NOT the common Cold or cancer just the same routine set of tools...

Testosterone makes a man and without it we are just like dogs & cat with there meat & two veg cut off!

Don't be fooled harmone treatment turns you into a eunuch and it's enough to fill you with dread at reading how your once strong male body will turn into some thing not mam nor woman but a "Thing" just to live a few more years for what?

I enjoyed being a boy I enjoyed bring a teen I enjoyed bring a man....and once this cancer comes knocking am I going to cave in and jump through the hoops to change myself into a docile thing?

Make no mistake being 3 years on hormone treatment your testosterone will NEVER come back!

You'll be forever not a man nor woman weak docile thin bones heart problem issues....That too far in my eyes

God made me a man and I want to be in my box as a man not just being here like a false clone looks like me BUT it's not me that which was me right until I was 57 is gone for good and will never return because the harmone treatment has changed me physically & mentally...

User

Posted 20 Aug 2020 at 20:19

Dear Sisko,

My husband was diagnosed in 2016 with Gleason 9Tb3, he had HDBrachytherapy RT and three years of hormone treatment. He was also scared of losing his masculinity. He did the three years of Prostrap, which suppressed his libido, which was hard but exercise, positive attitude and a desire to live kept him going, he has been a marathon runner, a fitness instructor and a strong man in every way. He is a pro musician who plays and sings every day. He completed the course his testosterone returned and he now has a healthy interest in sex he is able to manage our acre of land, and at the age of 70 he is fit, masculine and full of life.

He considered the option of no treatment and we discussed at length,my view was it is your life and you can choose, but I will lose my lover, partner, best friend too early. He eventually was able to say he was petrified of being treated, and what the treatment would do to him, he said he knew I’d stand by him, and he could stop the hormones at any time.

He had his PSA last week it is now a steady 0.1 or 0.2 a clear bone scan and life is pretty good.

We have plans, a good life and our world is good, he’s good a zest for life, and we are still making plans.

What ever path you choose, there is life after treatment, if you decide to go for it.

Take care

Leila

User

Posted 20 Aug 2020 at 20:55

Leila,

You hit the nail first time it's my "Machismo" I've always been into sports & the feeling of not being me fills me with dread!

I love me as ME I'm vain always have been because it's me confident,always on the front foot and after seeing a man in his 70s docile on harmone treatment and even his wife saying "he has changed its not the man I married and it's since he's been on the harmone treatment"

It fills be with absolute horror that I won't be a man...

I'm 57 this year but I'm so strong and I love the feeling! The other week I stood at my window and I felt so weak....never in my life I have felt weak and frail....

I have really thought it out I'm a practical person and at this present time the 6 months on harmone treatment has just been AWFUL!

No sleep for six months constantly wiping sweat away so many showers every day....once you start to sweat you feel unclean then it's another shower I cannot go out in the sun because if I do I just over heat and sweat is dripping off me...my children have seen the sweats and they say "Dad it's not living"

Death is near if I take the harmone treatment I will last a bit longer BUT lasting longer isn't in my makeup. THREE years I would be on this treatment it's just too far for me....

These six months have just been the worst in my entire life I love the sun and I can't go outside I need to be near a fan always to keep me from overheating....

Just like the man in Barnsley who couldn't live with a colostomy bag he chose to die I cannot live for 3 years on this Frankenstein chemical I've made my mind up and I won't change it....I have FAITH always and death has never frightened me I've had a brilliant life and want it to stay the same...NOT on Frankenstein chemical harmone treatment

User

Posted 20 Aug 2020 at 20:59

Hi Sisko,

You are right about the emotional effects on a man. The following thread is quite a good discussion on the matter:

https://community.prostatecanceruk.org/posts/t21271-Relationships

The sweats sound bad. I didn't get them that bad, but we are all different.

I sought of agree with your opinions on cancer treatments they are all barbaric. The problem is that cancer cells are our own cells so any attack on them is also an attack on us.

As for T3 meaning the cancer has microscopically spread, well it might have, personally I am an optimist, so I assume things are good until proved otherwise.

The longer you are on HT the longer it takes to recover and as you have said some people never recover. Reversing the bone loss and muscle loss may be possible, ANDY62 runs online sessions to help men deal with these issues, but again we are all different. If we choose to fight our cancer we will come away with scars.

You have had the most important HT, already which weakened the cancer prior to RT. As andy62 has said the DNA damage inflicted on the cancer cells keeps killing the cancer for months after the RT has finished, and if helped by HT it has the best chance of irradicating it.

Like you Sisko, I used to be highly sexed, and I'm also not afraid to die. I'm also not afraid of change, and living a new life. In fact I'm quite liking letting my brain make decisions instead of my dick. But if my dick does come back and start making decisions I think I'll let it, because it did lead me in to some funny situations.

Dave

User

Posted 20 Aug 2020 at 22:02

My father-in-law refused treatment because he didn't want his sex life to be spoilt and my husband stopped salvage HT early because he hated the side effects so I get where you are coming from. But, and it is a big but, don't kid yourself that if you chose death, you would be the way you are now right up to the end... that's not how it works. Many of the side effects of the hormone treatment are also side effects of terminal prostate cancer - no hot flushes but sleep is hard to come by if you are in pain or the tumour is pressing on your bladder and you have to get up to the toilet every hour or if you become incontinent. And sex ... there isn't much of that when you are incurable with lymphodema, bone mets and so on or when your partner has to wipe your bum and cut your toenails.

Having said all that, I don't think having the HT is as critical to you as you seem to believe; some oncos don't even put their patients on HT for a course of radiotherapy and you have done 6 months - no one is going to make you have it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Aug 2020 at 22:27

Sisko,

You are imagining you will get the worst effects from the hormone therapy, but you are actually a good candidate not to. You are in good shape and exercise - you could get minimal side effects. I don't get really bad effects - I was same age as you, fit and exercise (probably to a lesser degree than you), and this makes a massive difference, and with the same concerns as you. I was also down for 18-36 months HT, but at 18 months I've just been told I can stop anytime (I decided I'll do the next injection as I already have it, then stop). I am expecting the temporary side effects will reverse.

User

Posted 21 Aug 2020 at 07:26

Dave many thanks for your response the facts are clear taking hormone treatment to give you a bit more time is appealing to 99% of men.

Being castarated has been going on throughout the ages...you just have to Google "Eunuch" and see how your body becomes soft shoulders become rounded your penis & testicles shrink you put weight on around your stomach,bones become thin and your at risk of breaking them! You start to grow man boobs All these changes are occurring because your testosterone is turned off and it won't come back...You are turning into a Woman

This chemical brew will change your mindset and it's wrong...I don't want to die BUT I'm not prepared to sacrifice all that's made me the MAN I am today.The term of being a "Eunuch" a gender that has no place isn't my cup of tea...

The pictures of "Eunuch" men on Google is shocking you just have to read what's the definition of a " Eunuch" An ineffectual person... All what I've achieved in life will mean nothing because medical Science offers a chemical don't mean it's good for you...Most men will do anything to stay alive throw away all what made them a man to live as a Eunuch

In 2020 is this all what our so called cancer specialist can offer? Radiotherapy Chemotherapy & harmones.

The slogan on various media outlets "We going to beat cancer" it's a lie...They haven't moved on from medeviel methodology toxic brews made by mad scientist!

The 6 months I've been on the harmone treatment is shocking the changes to you as a person just to live a bit longer isn't for me..I hated the feeling of being weak then the longer your on it you gain female traits that's the facts clearly a gender of "Nothing"

I'm open for any treatment that don't mess about with my testosterone....

Someone far more eloquent wrote "To thine own self be true"

User

Posted 21 Aug 2020 at 09:23

Originally Posted by: Online Community Member

I'm open for any treatment that don't mess about with my testosterone....

If you've been on hOrmones for 6 months, it's probably time to learn how to spell the word. 😃

Or is it a 'witticism'? Harm One? If so, very good. I've read all your posts so far and missed it until now. 😂

Why wasn't surgery offered in your case? I think that's now the third time in this thread you've been asked that question (twice by me). I've read all your posts, but haven't spotted an answer.

Edited by member 21 Aug 2020 at 09:31 | Reason: Not specified

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 21 Aug 2020 at 09:56

Sisko,

Castration is permanent - your hormone therapy isn't.

Reduction in penis size - that's avoidable. I was also concerned about this, and got an ED clinic appointment right at the start before anything went wrong. The big message was "Use it or Lose it", and that's worked for me, together with daily low dose 5mg Tadalafil. You do have to put in the effort to use it though, because of loss of libido.

Reduction in balls - that's unavoidable but should reverse when you finish.

Breasts - there are two separate aspects, breast fat growth (moobs) and breast gland growth...

Moobs - careful control of diet will limit the extent, and diet and exercise when you finish should get rid of the excess fat. Many people struggle with the diet and exercise, but I get the impression you do that anyway, so it shouldn't be a problem.

Breast gland growth - if this is happening (you can feel more solid glands under the nipples or nipples are painful), ask your oncologist for Tamoxifen to prevent it. Tamxoxifen can also reverse recent breast gland growth, but not any that's been there for a long time. Tamoxifen has no impact on breast fat growth.

Bone thinning - calcium and vitamin D3 supplements, together with some very specific exercises to shock or stress the bones. I join an exercise class over Zoom 3 times a week which specifically addresses this.

You are spending too much time on Google, rather than talking with men actually dealing with this, so your perception is all the worse symptoms at their extremes which no one gets, rather than the reality.

I PM'ed you - do give me a call.

Edited by member 21 Aug 2020 at 11:26 | Reason: Not specified

User

Posted 21 Aug 2020 at 12:04

I though I had replied my oncologist the first thing which came out of his mouth was "I don't think a prostate operation in your case would do" I replied "I'm not in favor of being cut open and wearing Adult baby nappy for nearly 2 years "

He then stated harmone treatment for 6months and 37 radiotherapy sessions which now have been cut down to 20...I've never been able to spell it's called "Dyslexia" so others may laugh but people don't realize simple words take ages to spell....

I've just had another blast with proton radiotherapy waves and my technician stated that the harmone treatment is awful he's seen so many thousands of people and the one thing that they hate is "Harmone treatment"

Everyone has a choice and mine is live to 18 months or 3 years or 5 years I'm happy with any of those options....It will be me a man who lived and died....

Not a "Thing" thrown into a box just because I take any and all Frankenstein treatment the medical team throw at me....I want to check out with dignity as I've lived my life not as a "Eunuch" but a dignified MAN

Edited by member 21 Aug 2020 at 12:07 | Reason: Not specified

User

Posted 21 Aug 2020 at 12:15

"He then stated harmone treatment for 6months and 37 radiotherapy sessions which now have been cut down to 20..."

This is good news - you have done your 6 months HT and you are half way through the radiotherapy - hopefully you have 20 years or more ahead of you.

I am still not sure why you think stopping the HT is a big deal or will lead to an early death - this is most unlikely!

Edited by member 21 Aug 2020 at 12:15 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 21 Aug 2020 at 12:28

Originally Posted by: Online Community Member

Well. There you go again looking at worst-case scenarios. It doesn't have to be that way. I'm 50, only 7 years younger than you. After the catheter came out two weeks after prostatectomy I wore a pad on day 1 - had about 10 drops in it. Next day I wore a thinner pad. 2 drops. The next day I decided "I don't need these things."

Turns out I was right. Admittedly this is better than average, but my surgeon said "that's about what I would expect for your age and fitness".

If you're fit and 57, you probably wouldn't have had to wear pads for very long at all.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 21 Aug 2020 at 13:27

I have just got a letter from my hospital Royal Hallamshire and as I stated after 6 months of harmone treatment it ends and I've started 20 sessions of radiotherapy with a block of 8 remaining

My PSA is down to 3.2ug/L from a high PSA reading of 109

My prostate cancer is T3b both sides have cancer broken out so after the 20 sessions finish they retest me after 6 months I gather for a PSA test...

I'm pleased with what's gone on so far and I'm sure I've made the right decision not to be placed on harmone treatment for 3 years...

Many Thanks to all who have understood where I'm coming from...I'm a MAN as God made me in this world and if the worst comes I have no complaints I'm back to him in my coffin which I've already paid for.

User

Posted 24 Aug 2020 at 12:44

sisko,you can always look into trt some time in the future,if you are worried about your test not returning,good luck.

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