I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

2 Years on from RARP

User
Posted 23 Nov 2020 at 22:45

My 2 year anniversary is on the 11 December. I have just received confirmation that my PSA remains undetectable and whilst  I  have by no means come out of this unscathed, at least everything is working , albeit with 100mg of Viagra.  I am continent save for the odd drip when I am tired. I  have no idea whether this remission will continue but for now things are good. Best wishes and seasons greetings to all and once again thank you to those who have provided support and assistance since my diagnosis. 

User
Posted 24 Nov 2020 at 04:00
I’m going for my 2 1/2 year PSA test on Friday. All have been undetectable so far, and I am up to six-monthly tests.

With my post-op histology, the cancer is likely to return within fifteen years, by which time I might be dead of something else.

Nothing is working in the penis department, apart from the on/off tap.

Hey ho, keep smiling, keep breathing (without a ventilator if possible).

Cheers, John

User
Posted 24 Nov 2020 at 09:18

Great news Zebulon......happy ‘surgyversary’ for the 11th.

Good luck John and thanks for the chuckle!!

User
Posted 25 Nov 2020 at 15:09

Hi Zebulon,

You sound a great case.  It's good to read such cases.

My 4 year anniversary is 16th Dec and I went on annual psa tests last March.  I'm planning an earlier visit as I can tell my angst is slowly rising.  Unlike my whatsit. 

Show Most Thanked Posts
User
Posted 24 Nov 2020 at 04:00
I’m going for my 2 1/2 year PSA test on Friday. All have been undetectable so far, and I am up to six-monthly tests.

With my post-op histology, the cancer is likely to return within fifteen years, by which time I might be dead of something else.

Nothing is working in the penis department, apart from the on/off tap.

Hey ho, keep smiling, keep breathing (without a ventilator if possible).

Cheers, John

User
Posted 24 Nov 2020 at 09:18

Great news Zebulon......happy ‘surgyversary’ for the 11th.

Good luck John and thanks for the chuckle!!

User
Posted 25 Nov 2020 at 15:09

Hi Zebulon,

You sound a great case.  It's good to read such cases.

My 4 year anniversary is 16th Dec and I went on annual psa tests last March.  I'm planning an earlier visit as I can tell my angst is slowly rising.  Unlike my whatsit. 

User
Posted 25 Nov 2020 at 18:59
Hi Peter

The angst bit I fully understand. Never seems to get any better!

User
Posted 13 Jan 2021 at 19:36

Originally Posted by: Online Community Member
I’m going for my 2 1/2 year PSA test on Friday. All have been undetectable so far, and I am up to six-monthly tests.

With my post-op histology, the cancer is likely to return within fifteen years, by which time I might be dead of something else.

 

John  - How can they tell this ?  If the prostrate has been completly removed and they got all of the nasty stuff with it , shown by your undetectable PSA . How is it able to return if its got no where to grow ?

 

Cheers

User
Posted 14 Jan 2021 at 01:52

Originally Posted by: Online Community Member
John - How can they tell this ? If the prostrate has been completly removed and they got all of the nasty stuff with it , shown by your undetectable PSA . How is it able to return if its got no where to grow ?

 

Because Bollinge's post-op histology showed that they may have left a bit behind. It is called 'having a  positive margin' and happens quite often. 

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

User
Posted 14 Jan 2021 at 13:29

How lucky man you are

Had RP too 

Had many countless times visits to AE.

Suffering none stop with tummy,abdominal pains 

Suffering with lower side back pains.

UTI -urinary tract infections 

Hernia

Gallstones 

Before the Surgery operation of RP never stepped into hospitals. 

Now I do.

S.E.X Life...? WHAT IS THAT?????

User
Posted 08 Feb 2021 at 12:17

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
John - How can they tell this ? If the prostrate has been completly removed and they got all of the nasty stuff with it , shown by your undetectable PSA . How is it able to return if its got no where to grow ?

 

Because Bollinge's post-op histology showed that they may have left a bit behind. It is called 'having a  positive margin' and happens quite often. 

that makes sense thanks

:-)

User
Posted 08 Feb 2021 at 12:34
There are prognostication tools called Nomograms, which guess as to the likelihood of recurrence post-prostatectomy. You key in all your details, Gleason score, PSA level, years post op, post-op biopsy report, etc, and it will calculate the statistical chance of recurrence at 5, 10 and 15 years.

When I last checked, had a 70% chance of recurrence within fifteen years, at which point I might have to undergo salvage treatment.

You can check your forecast if you search for ‘MSK Nomogram prostate’.

Cheers, John.

 
Forum Jump  
©2021 Prostate Cancer UK