Recurrence??

Hi sorry it is your PCa that brings you here.

I am sorry I can't answer your query but am aware of the seriousness of CKD stage 5 and you are right to ask (your Consultant specifically) how folow ups and treatment might be affected by this. I have read that radiology, scans and dyes used in scans may be a problem so this might limit your options. It could be appropriate for your CKD specialst and your cancer consultant liaise in your case.

Is it 0.28 as you originally posted , or 0.028 which you just posted ? If it’s 0.028 then someone may have just sneezed whilst operating the machine or handled salt and vinegar crisps. If it’s 0.28 then that is quite a rise but still indicative of very local recurrence which can be treated. Very sorry to hear of your double bad luck. Best wishes and stay strong

Okay - NICE says that biochemical recurrence in a man with no prostate is a PSA of 0.2 - or a PSA with 3 successive rises over 0.1

The unreliability of ultra-sensitive testing is now better understood and some top cancer hospitals have stopped offering them, offering PSA results only to 1 decimal point. The machines are calibrated regularly but it isn't only prostate cells that produce PSA, it also comes from the adrenal gland and other parts of the body. Women have an average PSA of 0.005 which can rise as high as 0.02 after orgasm and higher in breast milk.

Our urologist told me that if you took one blood sample and tested it in the exact same machine a number of times, the result could be anything from 0.01 - 0.05. In reality, most labs have more than one testing equipment anyway so the test from 3 months ago isn't necessarily from exactly the same machine, or the machine could have been recalibrated in between times. Or you could have been cycling or masturbated just before the second or third test, or have done something that stimulated your adrenal gland (been late for the appointment/found it hard to park/had a row with the boss/had to get a big piece of work completed?). We actually tested it with my dad - he had one blood sample tested twice on the same day and got 2 diffrent PSA results.

Your body may simply be settling into its new normal in terms of PSA production. My husband has no prostate but his new 'normal' hovers between 0.09 and 0.11 - he does do a lot of weights and also gets very stressed about some things so it might be down to that?

Looks at Franc's profile - that may reassure you a bit https://community.prostatecanceruk.org/default.aspx?g=profile&u=21040

It is important to listen to the onco of course but I would be very unhappy if a member of my family was told to have salvage RT/HT based on these tiny numbers. The exception would be if your medics already knew from the pathology that you had a positive margin, seminal vesicle invasion or lymph nodes affected.

Okay, slightly different then - in some areas, you would have been advised to have adjuvant RT/HT immediately after your surgery report while in other regions, they wait to see what the PSA does. It will be interesting to hear how your meeting with the onco goes but nothing you can do about it in the meantime so I hope you can put it to the back of your mind and have an enjoyable weekend

update: saw Onco yesterday (after waiting  hour and half)! He was quite rude argumentative and bordering aggressive. However he told me my first post op PSA was NOT good at 0.01 Saying it should have had the “less than” prefix.  So gave another blood sample and will be seen again in two weeks if it has risen again from nine weeks previous reading of 0.028. To discuss radiation /hormone treatment. Your thoughts folks please. 

Edited by member 23 May 2018 at 22:57  | Reason: Not specified

Can you double check all the numbers?

Sorry everyone for not being consistent with my numbers, ( maybe just in too much of a hurry to get opinions) . Checked all and they were: six weeks post op, 0.01 slight rise two years later to 0.02 followed by 0.028 ten weeks ago. Awaiting yesterday’s results with some trepidation. Radiation sounds awful and so intense . Driving to Sheffield in rush hours five days a week for 6.5 weeks.

Today is exactly three years since my surgery and to put things into perspective my psa is roughly 50 now. I rejected RT three times as they believe I have distant Mets. Look at your figures again. If you mean 0.3 , then RT is sensible and may provide cure

It’s being recognised that simply any tiny anomaly can cause changes that insignificant. Maybe someone ate crisps that day near the machine lol.

I’m clearly insane in refusing treatment over QOL , but frankly with your figures you have months yet before you need consider Salvage RT. As said 0.2 is a normal start point with full cure in mind. A friend of mine aged 49 ( I’m 51 ) was offered SRT but like me declined it. His psa has sat between 0.5 and 0.11 for 2 years now. He’s enjoying life and his erection and putting it off. It’s worth noticing that even SRT fails in 50% of patients over time yet can come with significant risks for a younger man.

Thanks for your input Franci, pre op I was Gleason 4+3 psa around 12, post op I was negative margins, t3a, N0, R0, psa 0.01. 

Ha ha - you wouldn't have much fun since the technique would require you to withdraw at the critical moment so that the woman's gush or ejaculate could be collected in a jug or something. They test for PSA to determine whether the gush is urine or ejaculate (a bit like what comes from the Cowpers gland) - useful knowledge for women who avoid sex because think they have stress incontinence.

https://www.ncbi.nlm.nih.gov/pubmed/10234897

https://pdfs.semanticscholar.org/8b8d/afaa37f6dce6ecc7081797302259e83ac596.pdf

https://www.healthline.com/health/women-health/female-prostate-cancer

https://www.sciencealert.com/where-female-ejaculation-comes-from-and-what-it-s-made-of

cheers !!!!

Edited by member 02 Jul 2018 at 22:56  | Reason: Not specified

So just back from hospital. Saw a new oncologist . She was very honest and didn’t candy coat it, which is how I like it. PSA same as six weeks ago (0.03) so we agreed to delay radiation therapy ( apparently the RADICALS trial is over now so couldnt have gone on it anyway) .   nex appointment in six months . HOWEVER! I looked her straight in the eye and asked her “ is my cancer 100% back?” and she said yes. i told her I thought my prostatectomy was a curative procedure, only for 80% she replied  ( lucky them).

Yes Chris the plan now is to put it right out of my mind now for six months and get on with my life. She was very definate in her answer  though so I guess she is right, although would obviously be highly delighted if she wasn’t.

Edited by member 03 Jul 2018 at 16:35  | Reason: Not specified

Hi it would help if you could update your profile with dates and PSA readings and your final pathology report. It is also essential you confirm there was no lymph node or seminal vesicle involvement as this ups the anti in favour of early radiation.

Assuming your cancer was the "common one" and your PSA is only  0.03 2 and a half years later whatever you have is incredibly slow growing so even if you never saw another doctor again there is a good chance you would die from something else.

This nomogram may help you consider the risk associated with waiting until 0.1 

http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

I ran your stats as I know them and waiting until 0.1 rather than 0.03 made 1% difference on the outcomes at 5 and 10 years. 

The bad news is while prostatectomy has a 20 to 30 percent failure rate salvage radiation is 50/50 so you probably want to avoid it if you can..

Fingers crossed your PSA will gave gone down like mine did after it hit 0.03 !!!