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User
Posted 26 Nov 2016 at 13:03

Hello I am Jool's & new here

First time I have joined a group, my lovely hubby was diagnosed with Pca at the age of 50 , 9 years ago now, its has been a bit of a journey so to say.  

He had a TURP as they unable to removed the cancer as it had already spread out of the Prostate , radiotherapy for 6 weeks, hormone treatment, also  about 3 years ago he had a prostate cancer bladder tumour removed ,which we were told was quite rare.

Hubby had a stricture surgically removed about a year ago, he had blood in his urine and he was told his prostate is bleeding and had dead tissue but they could not do any surgery on it , things settled a little but now he is passing blood clots with dead tissue in it, he has an appointment to go back for another scope next week as becoming h difficult to pass urine at times.

Bless him he had so many difficult years, the tiredness, muscle aches, depression. anxiety , his PSA was on the rise and they switched his drugs which has shown a drop so that's good.

I am worried because I just don't know what they can do for him now, has anyone else had experience of slough/ necrotic and bleeding tissue from the prostate?

I think the oncologist said they might be able to do a little radiotherapy but do not normally like to treat the same area twice. after so many years you feel like you can not keep worrying friends and family. don't seem to have anyone to have a good honest talk with.

 We do talk as a couple, but hubby will not join any groups and when he meets friends and family he always says he is fine and keeping well. 

he has a massive fear of having to live with a catheter

On a positive note I make sure we get out and about as much as we can, ,and try to live life to the full and I always try to have something planned to look forward too.

It hurts so much seeing the love of your life going though such a hard time for so long.

Jools 

 

User
Posted 26 Nov 2016 at 19:18

Hello Jools and welcome from me too.

I'm like Andrew and don't have the experience you need but I'm sure somebody will offer advice.

The main thing now is that you've found us. Many of us have discovered that sharing our fears and sadness with the others on here does help. OK, we can't do much physically, but we can (and do) listen.

Any time it all gets a bit much then come and have a rant with us. I understand about your husband not wanting to share his story, mine's the same (these men eh?)

Best Wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
User
Posted 26 Nov 2016 at 19:28

Hi Jools
That's a lovely post from a lovely wife. I guess it's awful whether you are the sufferer or the carer or partner. I often stop to think how my wife is feeling. I'm not at the stage yet that your hubby is at , but I know even his mental suffering will have been immense. I can only wish you both hope.
Please talk ANYTIME xx
Chris

User
Posted 27 Nov 2016 at 09:15

Hi
First of all it's encouraging to hear that he is still here and relatively well 9 years after a dx of PCa that had spread locally.
There are men on here who have suffered intermittent flow issues but I am not sure about the passing of blood.

You could give the nurses a ring on here, the number is on the main PCUK website. They are very experienced and really helpful.

I hope you both get the answers and treatment you need

Bri

User
Posted 28 Nov 2016 at 23:20
Jools

Following RARP in 2014 I have had a problem with strictures and very slow flow rates for the last two and a quarter years and had about ten urethral procedures. My situation is not the same as your OH but I have also sat in the chair in anticipation of seeing the inside of my bladder only to be told it is too tight to get the camera in. My last procedure about five weeks ago involved cutting into my scar tissue and today I have a bladder infection and I am passing all sorts of debris. I did have a super pubic catheter for three months last year and although I would prefer not to have had it, it was not as uncomfortable has a urethral catheter can be. One of the members on here has had a SPC for a number of years,and seems to cope quite well.

Hope all goes well on Friday.

Thanks Chris

User
Posted 02 Dec 2016 at 19:55

Hi Jools, I don't know about growths in the urethra but bladder cancer looks like cauliflower florets and I think you said your IOH has had bladder cancer in the past?

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

User
Posted 10 Dec 2016 at 17:10
Jools

Hope all goes well with the surgery, sorry I cannot help with your question, but replying will bump you up the posts.

Thanks Chris

User
Posted 10 Dec 2016 at 17:31

Jools there isn't quite enough information on your profile. Did he only ever have bicalutimide or has he also had another hormone over the years? Is he still on HT? If not, when did he stop? You ask how can it not be showing on his PSA but I don't think you have told us what his readings have been over the last couple of years?

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

User
Posted 10 Dec 2016 at 22:35

Hi Jools have you tried calling the Prostate Cancer UK nurses on the 0800 number. I've found them to be very good.
I hope the op all goes well.

User
Posted 11 Dec 2016 at 01:59

Do they ever measure his testosterone level? It would be useful to know whether or not he has achieved castrate level. If he has got down to castrate level and still new tumours are developing that is more worrying than if the HT isn't getting him low enough.

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

User
Posted 22 Jan 2017 at 19:48

I would still be more interested in the test results that you haven't posted and may not know.

- what is his testosterone level? I would want yo understand whether the cancer is growing without testosterone or whether the hormones never really got him down below castrate level
- is this a rare prostate cancer? Have they actually told you it is the most common type, adenocarcinoma? Is it written anywhere on his test results, letters to GP etc? Or did they find a rarer type; some aspects of your case (low PSA generating, spread to odd places, not responding well to HT) suggest it needs confirming.

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

User
Posted 13 Feb 2017 at 10:01
Hi.

Hubby also hates talking about his high possibility to have PC, they are checking him on these days and I am rally scared. In one hour we'll be driving to Madrid to see his uroligist.

I mean, it's good that we, persons who need to share fears and feelings, have got to this friendly place.

He keeps his feelings and privacy to himself but I need other's help. I'm sure we'll find some relief by talking each other here.

Be certain that as far as I can I'll be always ready to listen to you.

Show Most Thanked Posts
User
Posted 26 Nov 2016 at 19:18

Hello Jools and welcome from me too.

I'm like Andrew and don't have the experience you need but I'm sure somebody will offer advice.

The main thing now is that you've found us. Many of us have discovered that sharing our fears and sadness with the others on here does help. OK, we can't do much physically, but we can (and do) listen.

Any time it all gets a bit much then come and have a rant with us. I understand about your husband not wanting to share his story, mine's the same (these men eh?)

Best Wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
User
Posted 26 Nov 2016 at 19:28

Hi Jools
That's a lovely post from a lovely wife. I guess it's awful whether you are the sufferer or the carer or partner. I often stop to think how my wife is feeling. I'm not at the stage yet that your hubby is at , but I know even his mental suffering will have been immense. I can only wish you both hope.
Please talk ANYTIME xx
Chris

User
Posted 27 Nov 2016 at 09:15

Hi
First of all it's encouraging to hear that he is still here and relatively well 9 years after a dx of PCa that had spread locally.
There are men on here who have suffered intermittent flow issues but I am not sure about the passing of blood.

You could give the nurses a ring on here, the number is on the main PCUK website. They are very experienced and really helpful.

I hope you both get the answers and treatment you need

Bri

User
Posted 28 Nov 2016 at 20:25

Thank you for your replies

Guess we will just have to wait until Friday and the scope to find out if there is anything they can advise

Every time so far they have tried to scope they fail and hubby is sent off for Pre assessment and scope under GA, hope that after stricture removal they can get in, and if he is awake he can talk to them during the scope and find more information.

Yes hubby is doing reasonably well 9 years after being told he had locally advanced PCa,  (at diagnosis they said 10 years ) one thing I pushed for was bone protection medication ,he is on Alendronic acid and Calcichew, it sort of made sense to me that if his bones were stronger then it would be harder for the Pca to spread to his bones.  

let you know how things go, meanwhile if there is anyone who had had the same symptoms it would be good to hear from you

thanks again Jools 

User
Posted 28 Nov 2016 at 23:20
Jools

Following RARP in 2014 I have had a problem with strictures and very slow flow rates for the last two and a quarter years and had about ten urethral procedures. My situation is not the same as your OH but I have also sat in the chair in anticipation of seeing the inside of my bladder only to be told it is too tight to get the camera in. My last procedure about five weeks ago involved cutting into my scar tissue and today I have a bladder infection and I am passing all sorts of debris. I did have a super pubic catheter for three months last year and although I would prefer not to have had it, it was not as uncomfortable has a urethral catheter can be. One of the members on here has had a SPC for a number of years,and seems to cope quite well.

Hope all goes well on Friday.

Thanks Chris

User
Posted 29 Nov 2016 at 14:35

Thank you Chris,

I did wonder if a SPC might be an option, urethral ones have always been very uncomfortable for hubby, also made him very upset as they seem to affect day to day living so much, a simple walk quickly turns into frustration when the bags fills up or the tubes start pulling. hope your infection settles quickly, they can make you feel pretty rough.

Jools    

User
Posted 02 Dec 2016 at 17:01

HI, well the scope actually went in this morning

They found a large broccoli looking growth in hubby's Prostate occupying pretty much all the space  ( he had a TURP 9 years ago)

it is pressing on his urethra and needs urgent operation ? to remove it 

hubby said it was bleeding a lot, 

he had pre operation assessment this morning after Cystoscopy so just have to wait for the admission appointment.

Sorry to keep asking but anyone else has this or heard of it ?

Thanks 

Jools 

 

 

User
Posted 02 Dec 2016 at 19:55

Hi Jools, I don't know about growths in the urethra but bladder cancer looks like cauliflower florets and I think you said your IOH has had bladder cancer in the past?

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

User
Posted 02 Dec 2016 at 20:27
Bladder is clear, definitely broccoli type growth filing prostate where tissue was removed when he had TURP.

Guess we will have to wait for surgery and biopsy to find out.

User
Posted 10 Dec 2016 at 06:57

Surgery booked for 23 December, it is a proliferative lesion in prostate. Pca.  it is growing up near the base of the urethra bit concerned it could be coming from a gland. 

hubby is due PSA in January, but his last Psa was going down with change in treatment, just wondering how his cancer can be growing so quickly but not showing on his Psa.

has anyone any ideas.

Jools

User
Posted 10 Dec 2016 at 17:10
Jools

Hope all goes well with the surgery, sorry I cannot help with your question, but replying will bump you up the posts.

Thanks Chris

User
Posted 10 Dec 2016 at 17:31

Jools there isn't quite enough information on your profile. Did he only ever have bicalutimide or has he also had another hormone over the years? Is he still on HT? If not, when did he stop? You ask how can it not be showing on his PSA but I don't think you have told us what his readings have been over the last couple of years?

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

User
Posted 10 Dec 2016 at 19:20
Hubby I think was on

Casodex 150 mgs daily

Tamoxifen 20 mgs a week

His PSA went up to 5.5

They changed his treatment to

Prostap injections and casodex 50 mgs daily, his PSa dropped to 2.2 but now he has this tumour in prostate space.

He was diagnosed at 50 PSa then was 7.2 he was graded at TBc. Gleason 8

They could only treat him with TURP, and radiotherapy.

Since then he has has problems with stricture

And now new fast growing tumour in space of TURP

User
Posted 10 Dec 2016 at 22:35

Hi Jools have you tried calling the Prostate Cancer UK nurses on the 0800 number. I've found them to be very good.
I hope the op all goes well.

User
Posted 11 Dec 2016 at 01:59

Do they ever measure his testosterone level? It would be useful to know whether or not he has achieved castrate level. If he has got down to castrate level and still new tumours are developing that is more worrying than if the HT isn't getting him low enough.

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

User
Posted 11 Dec 2016 at 09:20
I don't think they have checked his testosterone levels. we will ask them at next appointment

Even when he had Prostate Bladder cancer , which we were told was very rare as it was Prostate cancer spread to an independent site via blood his PSa was only 3.7

I get so confused because he doesn't seem to follow normal pattern specially his PSA, but excellent idea re asking for testosterone level.

And talking to nurse in phone .

Guess I am just very anxious for him and just trying to do my best.

Thanks again for all your replies

User
Posted 14 Jan 2017 at 07:02

Hi Jools.
Sorry to hear about your husband's condition. Hope he will recover soon. Have faith and god bless you all. Take care of your husband as well as yours.

User
Posted 22 Jan 2017 at 18:50

iI has taken a while, but things seem to be moving hubby had a second TURP  in December the histology confirmed prostate cancer growing fast despite PSA of 1.   I was always concerned his PSA did not ever reflect the cancer growth , they have confirmed hormone drug change is not working.

The plan now is for CT scan with contrast, appointment early feb for staging, then if no mets, MRI scan ? salvage prostatectomy, but if mets they are taking about chemotherapy.

bit confused as to why they did not consider surgery before, but he did change urologist as we were unhappy with the last one we had , along story. but this one seems on the ball so to say.

he has not seen anyone since surgery but we had a letter with the Plan and info from MDT. and scan and oncology appointments

hubby is only 59.

anyone had successful salavage prostatectomy sounds like a big operation.

thanks Jools 

 

User
Posted 22 Jan 2017 at 19:48

I would still be more interested in the test results that you haven't posted and may not know.

- what is his testosterone level? I would want yo understand whether the cancer is growing without testosterone or whether the hormones never really got him down below castrate level
- is this a rare prostate cancer? Have they actually told you it is the most common type, adenocarcinoma? Is it written anywhere on his test results, letters to GP etc? Or did they find a rarer type; some aspects of your case (low PSA generating, spread to odd places, not responding well to HT) suggest it needs confirming.

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

User
Posted 26 Jan 2017 at 17:08

had a good chat with Prostate Cancer UK nurse this morning,very helpful and informative

lots of questions to ask at next consultation, it just the waiting again now for scans and results.

 

 

 

 

User
Posted 13 Feb 2017 at 10:01
Hi.

Hubby also hates talking about his high possibility to have PC, they are checking him on these days and I am rally scared. In one hour we'll be driving to Madrid to see his uroligist.

I mean, it's good that we, persons who need to share fears and feelings, have got to this friendly place.

He keeps his feelings and privacy to himself but I need other's help. I'm sure we'll find some relief by talking each other here.

Be certain that as far as I can I'll be always ready to listen to you.

User
Posted 13 Feb 2017 at 15:03

Originally Posted by: Online Community Member
Hi.
Hubby also hates talking about his high possibility to have PC, they are checking him on these days and I am rally scared. In one hour we'll be driving to Madrid to see his uroligist.

I mean, it's good that we, persons who need to share fears and feelings, have got to this friendly place.

He keeps his feelings and privacy to himself but I need other's help. I'm sure we'll find some relief by talking each other here.

Be certain that as far as I can I'll be always ready to listen to you.




It always helps I think, to be able to talk frankly to others about PC, especially people like us, because we do know and we do understand what others in the same boat are feeling.

You'll always be looked after on here Lola is you need somebody to listen, somebody to share your load. Especially when for ssome of us, our husband's prefer the more stoic approach

 

Good luck to your husband today

We can't control the winds - but we can adjust our sails
User
Posted 13 Feb 2017 at 15:08

Thanks. We keep in touch for help here.

 
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