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Salvage Prostatectomy and Cystectomy

User
Posted 07 Apr 2017 at 06:30

Hi All

It has taken a few months to get CT and MRI scan done to check for mets, Hubby was told they were going to refer him to Guys for Salvage Prostatectomy if no Mets were found.

Yesterday at local hospital consultation hubby's oncologist dropped the bomb shell that he would need his bladder taken out as well due to prostate cancer in the bladder neck.

Hubby's is 59 diagnosed age 50 with stage TB3 he had a TURP -DXT -150mg Casoxdex, about 18 months ago ,changed to Prostap and 50mgs casodex as psa raising,  his PSA did fall but is on the rise again and yesterday they talked about adding a steroid but decided to wait until after the consultant at Guys has seen him.

Has anyone had Salvage prostatectomy and cyctectomy surgery , how did you cope with the surgery and stoma, also recovery time and complications.

it is such a big decision to make,  if hubby's does not go ahead with surgery he could end with with long term catheter in the future as bleeding from bladder neck area, some tumour has been resected in December last year but he has started bleeding again. 

How long are the steroids normally effective at knocking of the adrenal glands for ? 

such big life changing decisions any advice would be very helpful

kind regards

Jools

 

User
Posted 07 Apr 2017 at 17:36

I had my bladder and prostate, 18 lymph nodes (I think) and associated bits out four years ago, aged 69. I was advised that I would need a fortnight in hospital. Five days later, I was out, walking the dog (gingerly and carefully). That is probably unusual, but shows what is possible. The stoma was relatively easy to accept. I chose the site in an effort to miss the slips that I wear and avoid the belt to which I was accustomed, too. The tricky part was finding a leak proof pouch and I opted for a microskin one. The hospital ones were useless, given the little mound from which the stoma protrudes. My flat stomach was no more! With trouser fashion having changed to flat fronted, it has become a little harder to find pleated front trousers that give adequate room for the pouch and mound, but I have coped.

As I view things now, I have a much simpler Urinary tract than most blokes, less to go wrong and my way of life is largely unaffected.

Unfortunately, in my case, some PCa was left in the urethra stump and, despite Abiraterone, it spread into my lymphatic system, hence the chemotherapy that I'm one cycle into. Learning point there for the surgeon - do it the old fashioned way and take out the urethra, too. Apparently, that is easy, like pulling out a bootlace, as one Urologist told me. How I wish that had been done!

I certainly don't regret my decision to have the big op. It is well worth thinking about.

AC in Leics

User
Posted 07 Apr 2017 at 22:04
Jools

Following my RARP three years ago, I finished up with a urethral stricture. Then I had a recurrence of the cancer and needed salvage RT. Like your situation the consultant dropped the bombshell " I think it would be best to remove the bladder as the RT is likely to damage the urethra". I refused the bladder removal and have had a super pubic Catheter fitted in case the urethra closes up during RT. It is gamble and if urethral repair is required ,the op is probably as traumatic as the bladder removal but if it works I may get back to being my normal.

During conversations​ with my consultants one option was to relocate the urethra to another position on the bladder, again it is not a simple op and not a quick fix either and it may not be appropriate in your situation.

I was given counciling for the bladder removal but the very honest Urology nurse did put me off and I was given the opportunity to talk to people who have had the bladder removal.

The thought of having the boot lace pulled out has left with my legs tightly crossed.

Thanks Chris

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User
Posted 07 Apr 2017 at 08:35

Sorry life is being extra unkind for you both at the moment Jools.

I don't have the knowledge to help but hope somebody will come along with advice

We can't control the winds - but we can adjust our sails
User
Posted 07 Apr 2017 at 17:36

I had my bladder and prostate, 18 lymph nodes (I think) and associated bits out four years ago, aged 69. I was advised that I would need a fortnight in hospital. Five days later, I was out, walking the dog (gingerly and carefully). That is probably unusual, but shows what is possible. The stoma was relatively easy to accept. I chose the site in an effort to miss the slips that I wear and avoid the belt to which I was accustomed, too. The tricky part was finding a leak proof pouch and I opted for a microskin one. The hospital ones were useless, given the little mound from which the stoma protrudes. My flat stomach was no more! With trouser fashion having changed to flat fronted, it has become a little harder to find pleated front trousers that give adequate room for the pouch and mound, but I have coped.

As I view things now, I have a much simpler Urinary tract than most blokes, less to go wrong and my way of life is largely unaffected.

Unfortunately, in my case, some PCa was left in the urethra stump and, despite Abiraterone, it spread into my lymphatic system, hence the chemotherapy that I'm one cycle into. Learning point there for the surgeon - do it the old fashioned way and take out the urethra, too. Apparently, that is easy, like pulling out a bootlace, as one Urologist told me. How I wish that had been done!

I certainly don't regret my decision to have the big op. It is well worth thinking about.

AC in Leics

User
Posted 07 Apr 2017 at 18:53

Thank you so much AC for sharing your experience, I showed your reply to my hubby and he found it really helpful, it sort of confirms our theory to go with the surgery option as he would probably end up with long term catheter anyway, more comfortable and manageable from a stoma.
So sorry to hear that you are having to have chemo hope it goes well for you.and we must remember to get them to pull the bootlace.
kind regards Jools and hubby Steve.

User
Posted 07 Apr 2017 at 22:04
Jools

Following my RARP three years ago, I finished up with a urethral stricture. Then I had a recurrence of the cancer and needed salvage RT. Like your situation the consultant dropped the bombshell " I think it would be best to remove the bladder as the RT is likely to damage the urethra". I refused the bladder removal and have had a super pubic Catheter fitted in case the urethra closes up during RT. It is gamble and if urethral repair is required ,the op is probably as traumatic as the bladder removal but if it works I may get back to being my normal.

During conversations​ with my consultants one option was to relocate the urethra to another position on the bladder, again it is not a simple op and not a quick fix either and it may not be appropriate in your situation.

I was given counciling for the bladder removal but the very honest Urology nurse did put me off and I was given the opportunity to talk to people who have had the bladder removal.

The thought of having the boot lace pulled out has left with my legs tightly crossed.

Thanks Chris

User
Posted 08 Apr 2017 at 20:26

Thank you for your reply and sharing your treatment Chris. we both wish you the best outcome.
sadly hubby does not have any choice its either RARP and bladder removal or no surgery at all, apart from chopping Ca out as it grows and bleeds
He is also hormone resistant with PSA rising but no mets so limited on what drugs they are allowed to treat him with, he feels he is on a slippery slope, consultant was going to add steroid but decided to leave it until after been seen at Guys.
hopefully he will have plenty counselling.
kind regards
Julie & Steve

 
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