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User
Posted 07 Feb 2019 at 16:53

Hi 


i do not think i have not posted on here for since my robotic prostate op in October 2017.  The op went well, the catheter was awful but the recovery was fine.  Continence recovered well, ED has been a frustration but thats life, i carry on with the tablets and my partners encouragement.  Its a journey that takes some years, i accept that and learn to deal with it.  I keep up with things on this site by having a regular read through.


My regular blood tests had been fine and marked as undetectable until the one in September 2018 that was 0.04. The consultant recommended another in 4 months, the results today have shown as 0.05 and he has recommended another test in 4 months. Unfortunately there is that gnawing feeling of the psa results starting to go the wrong way. By chance i have a gp appointment tomorrow so i will chat to him/her in the morning.  


I guess i am not asking for anything from anyone by writing this but i need to express my rejuvenated fears to people who will understand my immediate concerns.  It feels like a long 4 months after just one day!!

User
Posted 08 Feb 2019 at 07:59
At my local hospital, the lowest they test to is 0.1, so <0.1 is classed as undetectable. I had one test at the Royal Marsden where their lower limit is 0.04, and I tested <0.04 there.

My surgeon and oncologist said the 0.1 threshold is perfectly good, and another oncologist said lower limit testing could be of use if there were consistent rises over many tests and years.

All five tests over the nine months following my surgery have been undetectable, so happy days.

Keep calm and carry on.

Cheers, John.
User
Posted 08 Feb 2019 at 16:03
Mine finally was T3N1M0 and neither of the oncologists I have discussed it with have mentioned adjuvant radiation. Or they might have mentioned it, but not at this stage.

And I am more than happy for them to keep their bloody ray-guns in their holsters.

For now......fingers crossed🤞

Cheers, John.
User
Posted 08 Feb 2019 at 16:34

Bollinge while I admire your positive attitude urologists / oncologists should at least have the discussion in high risk patients like you and I.
My urologist certainly did, he also recommended that in my case I didn't and that I should wait and see.
https://www.cancernetwork.com/news/adjuvant-vs-salvage-radiotherapy-high-risk-prostate-cancer


Fingers crossed he was correct in my case I will find out in June after my year off PSA Tests!

Edited by moderator 13 Jul 2023 at 18:07  | Reason: Not specified

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User
Posted 07 Feb 2019 at 18:38
Anything less than 0.1 is generally considered "undetectable", so you're talking about tiny variations that are below the recognised limit of detectability here. I won't say "don't worry", but at least try not to think about it too much.

All the best,

Chris
User
Posted 07 Feb 2019 at 18:56
If anything is going on it is a slow one so you have plenty of time to monitor and act. Easier said than done but relax and enjoy life.
User
Posted 08 Feb 2019 at 07:59
At my local hospital, the lowest they test to is 0.1, so <0.1 is classed as undetectable. I had one test at the Royal Marsden where their lower limit is 0.04, and I tested <0.04 there.

My surgeon and oncologist said the 0.1 threshold is perfectly good, and another oncologist said lower limit testing could be of use if there were consistent rises over many tests and years.

All five tests over the nine months following my surgery have been undetectable, so happy days.

Keep calm and carry on.

Cheers, John.
User
Posted 08 Feb 2019 at 11:54
Fabulous!
User
Posted 08 Feb 2019 at 14:31
Rappo, you can't really do any more at this stage unless you wanted early salvage radiotherapy. Fingers crossed your next one stabilises or goes down.

Btw you don't say what your final staging was? If it was a T3 or you had positive margins I would have expected the urologist to have discussed ajuvant RT.

It a real bummer not having that "less than" sign.
User
Posted 08 Feb 2019 at 16:03
Mine finally was T3N1M0 and neither of the oncologists I have discussed it with have mentioned adjuvant radiation. Or they might have mentioned it, but not at this stage.

And I am more than happy for them to keep their bloody ray-guns in their holsters.

For now......fingers crossed🤞

Cheers, John.
User
Posted 08 Feb 2019 at 16:34

Bollinge while I admire your positive attitude urologists / oncologists should at least have the discussion in high risk patients like you and I.
My urologist certainly did, he also recommended that in my case I didn't and that I should wait and see.
https://www.cancernetwork.com/news/adjuvant-vs-salvage-radiotherapy-high-risk-prostate-cancer


Fingers crossed he was correct in my case I will find out in June after my year off PSA Tests!

Edited by moderator 13 Jul 2023 at 18:07  | Reason: Not specified

User
Posted 08 Feb 2019 at 17:18

Frankly I am not bothered at all, and have never been ever since my raised PSA in November 2017.


I am lucky in that I have never had any symptoms, my surgery went smoothly with one of the top guys, no incontinenence, and the only downside is my truncated and lifeless penis. Her Loveliness is quite relieved!


If three specialists tell me there is no need for further treatment now, who am I to disagree? Especially as I am cured😉.


Cheers, John.

Edited by member 08 Feb 2019 at 17:55  | Reason: Not specified

 
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