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salvage therapy

User
Posted 08 Nov 2018 at 15:54

2

User
Posted 08 Nov 2018 at 20:41
Mr Angry, you are a really angry guy.

I say it how it is for me and yes, RT and HT were and are no big deal - for me.

That is not stiff upper lip - it is how I feel.

I am concerned about the future and would like to see my grandchildren grow up.

Compared to that the occasional spring between the sheets is nothing.

Not trying to insult anyone but yes, we are all different.

User
Posted 08 Nov 2018 at 20:54
If you read my first post properly it says I have learned to live with the effects of HT.

You have to adjust your whole life and start afresh in a new way.

I like to think that I am well adjusted and intelligent and I have learnt to be happy in a different way.

I am lucky to have a wife and soul mate who really gets me and gets this whole thing.

And yes I am 66, had a riotous sex life in my younger days and now I am not that bothered any more.

There is more to life than just that.

User
Posted 08 Nov 2018 at 20:57

Alan48

After my prostatectomy, my PSA increased incrementally from 0.014 to 0.023.  I paid for a PSMA scan which, against all the odds, found where the remaining cancer was.  My pathology wasn’t great - T3b, Gleason 9, positive margins....  All of these things, and my age (48 when I had the PSMA scan) were taken into account.  I have had salvage radiotherapy and had some pretty nasty side effects.  I’m also on 18 months hormone therapy and that causes fatigue, affecting my ability to do my job.  No regrets, but, for me, SRT and HT have not been a walk in the park.  Proceed with caution and listen carefully to your doctor.

Ulsterman

User
Posted 08 Nov 2018 at 19:14
I hate to be confrontational because I’m not , but aren’t we all already on the long and slow downward spiral , whether it be RP or SRT or HT or Chemo ?? I detest the comments “ no sex in the graveyard “ or “ dead men don’t get erections “. Believe me there are so many men close to suicide because they can’t function , horrendously depressed , avoiding their wives and the issue in general. We are all so very different. I’ve learnt so much in life by having this cancer , and wll most likely not reach 60 yrs old. I’m just rolling with it

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2018 at 21:09

Originally Posted by: Online Community Member
Love the post!! Maybe not crass comments , but sometimes made by people who are in their late 60’s and not in their early 50’s who will be missing out on at least 10 yrs of joyful sex. I am inundated with messages from men torn by sexual dysfunction and wives also either frustrated or isolated completely by their partners. This disease at 70 is a different animal from being 50


It's a bugger Chris...make no mistake! .. 
I'm 67 ... with some urine leakage ( manageable ) and ED after a RP .. ( 50% nerves spared ) 
Losing my partner to cancer in the middle of all this was not easy at all I can assure you ... 
I'm very fortunate that I now have another lady in my life ( I know my late partner would approve, as we did talk about all this stuff before she passed away ) .... with the help of caverject or invicorp we have a good sex life ...although not spontaneous in the way that it used to be before surgery...
I can only imagine how I would have felt if in my early 50's if I had to endure the same experience as you.. 
I would stress that communication between partners is essential.. 
I appreciate we are all different, and what is important for some is not so important for others..

Best Wishes 
Luther  


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User
Posted 08 Nov 2018 at 16:17

Two and a half years post op .

PSA has risen from 0.04 to 0.15 . Surgeon referred me to Consultant radiotherapist .

She told me about 2 months hormone therapy , before 4 weeks radiotherapy followed by another 2 years hormone therapy . 

She also explained side effects , which didnt sound too inviting .

What I'd like some feedback on is at what point on the PSA scale people decided to plump for it and how they managed the side effects .

Although 70 I'm still playing footy , going to the gym and generally have an active lifestyle and at the moment cant make my mind up .

Any responses would be greatly appreciated .

 

 

User
Posted 08 Nov 2018 at 16:21
Click my picture and read my profile. I’m totally for QOL and my figures are atrocious and I’m 51. We are all different in our views but I reckon you could leave it for a good while yet. But I’m no doctor .....

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2018 at 16:36

Hi Alan48, My PSA suddenly started increasing about a year post op rising from 0.3 on 1/9/16 to 0.7 by November. So by the time I saw an oncologist I was way above the 0.2 which is regarded by most as a recurrence. That said clearly something is going on so if I were you I’d be seriously considering the HT and the RT as it is very likely (though not guaranteed) that you have a local reccurence due to the slow rise in PSA and time since surgery. I had a gadolinium enhanced MRI and a choline F-18 PET scan showing I had recurrence in the prostate bed and a seminal vesicle remnant.

This allowed my salvage radiotherapy to be very carefully planned to hit those areas plus the whole of the prostate bed.

My oncologist was very seriously concerned I would suffer life changoing side effects with terrible bowel issues but after a planning scan the risks were shown to be well within the tolerances he worked with.

He was also concerned I had distant spread in the form of micro metastasis which scans couldn’t pick up.

I had three months of HT and am still on that until January 2019. 

We wont know whether the salvage radiotherapy has worked until the HT comes out of my system.

I have increased side effects now where I leak urine randomly but espec when tired. I don’t leak massive amounts but it is enough to be embarrassing. I am also fatigued and suffer hot flushes from the HT. 

I gave up work recently and although I can get very tired I am active and enjoying life.

It is a big decision and as Chris says QOL must be considered. The alternative is that you may eventually have to go on HT if the PSA keeps increasing.

Best wishes,

Ian

Ido4

User
Posted 08 Nov 2018 at 16:42
Thanks Chris - Wow - all the best to you .

QOL and the return of incontinence are my particular concerns and I get fed up of people saying ' what do you expect at your age ' -I'm only a spring chicken in my eyes .

Thanks again - I'll keep chewing on things .

User
Posted 08 Nov 2018 at 16:46

Thanks Ido , that gives me more food for thought . Good luck .

User
Posted 08 Nov 2018 at 18:05
I had RP last July.

I have just had 6 months of HT with 7 weeks of SRT during the last period of active HT.

My PSA rose to 0.24 by the time I got shunted into the process.

I found the HT tiresome (tired, mood swings, weight gain) and the last few weeks post SRT have seen a massive increase in (hopefully temporary) fatigue.

I do not regret taking this choice even though on a bad day it is a bit crap.

Better some discomfort now for a chance of a cure or life extension later.

P

User
Posted 08 Nov 2018 at 18:58

Had RP surgery 2014. PSA hit 0.2 late 2017.
Had 33 sessions of Salvage RT plus HT. Still on HT. More details in profile.

RT was no big deal apart from driving through snow drifts to get to the hospital in February and March.

Experienced general fatigue and a bit of diarrhoea but nothing really horrendous.

All very bearable and not a major issue. Worked right the way through with only the occasional day off because of tiredness.

HT again is no big deal. I have learnt to live with the usual side effects without too much trouble.

My wife is very understanding.

What is the alternative ?

A long and slow downward spiral with an unhappy ending.

Edited by member 09 Nov 2018 at 12:03  | Reason: Not specified

User
Posted 08 Nov 2018 at 19:14
I hate to be confrontational because I’m not , but aren’t we all already on the long and slow downward spiral , whether it be RP or SRT or HT or Chemo ?? I detest the comments “ no sex in the graveyard “ or “ dead men don’t get erections “. Believe me there are so many men close to suicide because they can’t function , horrendously depressed , avoiding their wives and the issue in general. We are all so very different. I’ve learnt so much in life by having this cancer , and wll most likely not reach 60 yrs old. I’m just rolling with it

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2018 at 20:41
Mr Angry, you are a really angry guy.

I say it how it is for me and yes, RT and HT were and are no big deal - for me.

That is not stiff upper lip - it is how I feel.

I am concerned about the future and would like to see my grandchildren grow up.

Compared to that the occasional spring between the sheets is nothing.

Not trying to insult anyone but yes, we are all different.

User
Posted 08 Nov 2018 at 20:46
Love the post!! Maybe not crass comments , but sometimes made by people who are in their late 60’s and not in their early 50’s who will be missing out on at least 10 yrs of joyful sex. I am inundated with messages from men torn by sexual dysfunction and wives also either frustrated or isolated completely by their partners. This disease at 70 is a different animal from being 50

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2018 at 20:54
If you read my first post properly it says I have learned to live with the effects of HT.

You have to adjust your whole life and start afresh in a new way.

I like to think that I am well adjusted and intelligent and I have learnt to be happy in a different way.

I am lucky to have a wife and soul mate who really gets me and gets this whole thing.

And yes I am 66, had a riotous sex life in my younger days and now I am not that bothered any more.

There is more to life than just that.

User
Posted 08 Nov 2018 at 20:57

Alan48

After my prostatectomy, my PSA increased incrementally from 0.014 to 0.023.  I paid for a PSMA scan which, against all the odds, found where the remaining cancer was.  My pathology wasn’t great - T3b, Gleason 9, positive margins....  All of these things, and my age (48 when I had the PSMA scan) were taken into account.  I have had salvage radiotherapy and had some pretty nasty side effects.  I’m also on 18 months hormone therapy and that causes fatigue, affecting my ability to do my job.  No regrets, but, for me, SRT and HT have not been a walk in the park.  Proceed with caution and listen carefully to your doctor.

Ulsterman

User
Posted 08 Nov 2018 at 21:06
Thanks for all the responses . I guess the discussion highlights the fact that there is no easy decision and no miracle cure ,whatever choice is made . They say no gain without pain but this all seems a no win situation .

By the way Chris , this disease at 70 still feels really s..t and I really do feel for you but there is no way I'm going to be packing it all in just because of my age !

User
Posted 08 Nov 2018 at 21:09

Originally Posted by: Online Community Member
Love the post!! Maybe not crass comments , but sometimes made by people who are in their late 60’s and not in their early 50’s who will be missing out on at least 10 yrs of joyful sex. I am inundated with messages from men torn by sexual dysfunction and wives also either frustrated or isolated completely by their partners. This disease at 70 is a different animal from being 50


It's a bugger Chris...make no mistake! .. 
I'm 67 ... with some urine leakage ( manageable ) and ED after a RP .. ( 50% nerves spared ) 
Losing my partner to cancer in the middle of all this was not easy at all I can assure you ... 
I'm very fortunate that I now have another lady in my life ( I know my late partner would approve, as we did talk about all this stuff before she passed away ) .... with the help of caverject or invicorp we have a good sex life ...although not spontaneous in the way that it used to be before surgery...
I can only imagine how I would have felt if in my early 50's if I had to endure the same experience as you.. 
I would stress that communication between partners is essential.. 
I appreciate we are all different, and what is important for some is not so important for others..

Best Wishes 
Luther  


User
Posted 08 Nov 2018 at 21:10
Yes Pete I’m rapidly learning there is more to life than sex , but you have to remember there are people in just as bad a position as you , only 15 yrs younger , who are missing out on your past “ riotous “ love life ! Just saying !!

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2018 at 21:17

I had three spontaneous nocturnal ‘springs between the sheets’ following my prostatectomy😉.

I didn’t heed the advice on here to buy a mattress protector before my operation, and as a result I am currently sleeping on a map of Tasmania!

My whole PCa ‘journey’ - I hate that word - has been virtually painless and I am supposedly ‘cured’. Others have had post-operative PCa pain and incontinence for years. What I didn’t realise a year ago, was the extent of the damage and misery that metastatic PCa can cause. Sorry, Matron, for my naïvety.

But yes, Pete and Angry, it affects us all in different ways. I had no symptoms a year ago and apart from my missing 2” have no problem now. So to contrast me with a G10 stage 4 with a terminal prognosis is a different kettle of fish.

So try not to fall out girls, as life’s too short, especially ours....😉

Cheers, John.

Edited by member 09 Nov 2018 at 05:08  | Reason: Not specified

User
Posted 08 Nov 2018 at 21:25
Chris, I genuinely feel for guys who are diagnosed at a young age.

I know a guy who was diagnosed at 46 and can appreciate how he feels.

I am not bothered about the inability to have sex any more but I am truly scared s-itless about what the next 10 years has got in store for me if I make it that far.

User
Posted 08 Nov 2018 at 21:30
Agree.... way too short ..... it’s just every time I hear the “ no erections in a graveyard “ posts , when there are people who are suicidal post-op who are cured essentially, or wives that are totally locked out l etc. I spoke to an ex colleague recently who is 70 and had to have the op. I asked how he felt about sex and he simply said he wasn’t bothered about that although married. Who am I to question ?? Each to our own yeh !

If life gives you lemons , then make lemonade

 
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