Recurrence??

Recurrence??

User

Posted 24 May 2018 at 08:49

Andy, it is quite hard to keep track if your results - at the beginning of this thread you said your first post op PSA was 0.001 and now the onco says it was 0.01. You posted most recent result as 0.28 and then amended it to 0.028.

Can you double check all the numbers?

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

User

Posted 24 May 2018 at 08:57

If your first post op PSA had been 0.1 that would not be good news as it should have a <

A first result of 0.01 is marvellous as is a first result of 0.001

A PSA of 0.28 would mean you still have an active cancer while a PSA of 0.028 is lower than your average orgasmic woman

I think all your numbers need double checking to make sense of the onco' s advice. It would make more sense if the surgeon had referred you to the onco because of your pathology rather than your PSA?

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

User

Posted 24 May 2018 at 09:11

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.

User

Posted 15 Jun 2018 at 13:18

Just a quick update folks, latest psa 0.03 , up from February result of 0.028. Also apparently I had 13 lymph nodes taken out during my prostatectomy 2015,( news to me) , they were enlarge slightly. My oncologist says this was very unusual so any thoughts please. he has recommended 4 and half weeks of radiation therapy to prostate bed. I’m not keen but suppose it has to be done.

Edited by member 15 Jun 2018 at 13:51 | Reason: Not specified

User

Posted 15 Jun 2018 at 14:05

0.03 is undetectable. Most hospitals only offer RT at a level of 0.2 or above , or if you have three successive significant rises in psa. Unless you have got your numbers wrong you are fine at the moment. I had 18 lymph nodes out and five were confirmed cancerous. Being enlarged isn’t the same as cancer ???

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

User

Posted 15 Jun 2018 at 14:32

Hi Chris and thanks for your input. yes I have the letter in front of me and the reading is 0.03. That makes it three consecutive rises and according to “RADICAL“ trials this defines Psa failure. According to my letter that is. Maybe a second opinion is in order?........

User

Posted 15 Jun 2018 at 15:05

Some hospitals now do not take notice of any readings, rises , falls etc under 0.1.

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.

User

Posted 15 Jun 2018 at 15:38

Ok your post op PSA numbers and dates look identical to mine BUT I can' t see your post op pathology, Gleason or staging anywhere (this IS important).

Check my profile when mine went to .03 I had 2 additional opinions because I too had read the report on 0.03 being the new 0.2 level for BCR.

All the consultants I saw inc oncologists and the current no1 rated Urologist said wait until 0.1, then geuss what next PSA test was 0.023!! So now been put on 12 month testing as they think it' peaked, hopefully in 12 months I will find out they were correct. Incidentally they all knew of cases like ours that did not progress.

There are also lots of papers on the optimum time for salvage therapy V success rate and none of them seem to show any tangible survival benefit for very early intervention (ie at less than 0.1). There may be some benefit for ajuvant RT therapy for stages T3A and above but the trial will not report for many years AND you are way past being considered "ajuvant"?

So I will certainly await the update on your case eagerly!!

User

Posted 15 Jun 2018 at 17:44

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.

User

Posted 16 Jun 2018 at 10:43

Interesting, the questions I would be asking your ONC are:

What actual benefit are you likely to have from this early salvage therapy? v waiting until 0.1 or even 0.05?

It must be slow growing whatever it is as a rise of 0.002 in 3 months is actually within the margin of error of the USPSA test. So does this latest really constitute a rise? What helped me with my decision was plotting PSA over time. My graph spiked early on and then flattened before dropping. Cancerous PSA will rise exponentially, wont it?

Ask about those lymph nodes and why he was concerned AND how is SRT going to help those? or is he going to include regional Lymph nodes? If he is you want to be sure as I believe you will be at much greater risk of lymphodema? ?

Has anyone ever measured the PSA of a post orgasmic woman?? Lyn keeps quoting this but I can' find anything about it in any papers! I was thinking of recruiting some ladies and doing my own testing!!

Finally you are 2 + years post op without an "official" BCR there are lots of papers that will show that that in itself is good news..

User

Posted 16 Jun 2018 at 12:22

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

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

User

Posted 16 Jun 2018 at 13:02

Andy, you should do whatever gives you most peace of mind but in our case, John was determined not to have any salvage treatment until it was absolutely definite that it was needed. At the 2 year point, his PSA had risen to 0.16 or 0.17 which seemed irrefutable and so the deed was done. 6 years on he is still at or below 0.1 so waiting doesn't seem to have harmed him.

If you were my OH / dad / friend I would want the oncologist to explain more clearly whether s/he thinks you have a biochemical recurrence or is recommending RT 'just in case' and clarification of whether this would be RT with or without HT. I would also want to know whether the machines have been re-calibrated / replaced in the months between your tests (our local hospital has replaced all the machines in the last 12 months so we were warned that PSA might appear to fluctuate during the replacement programme).

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

User

Posted 17 Jun 2018 at 01:23

Thank you for your input guys, I am really at my wits end since receiving my letter , ( which may I say was an absolute joke, full of numerical errors, spelled my name wrong , got my surgery year wrong and finally worst of all said my latest PSA was 0.3 !!!!!) thankfully by this time I guessed it was a mistake so it didn’t cause me too much stress and I rang onco secretary who confirmed 0.03. Needless to say I have little confidence in this man after only one consultation I found his attitude and accent difficult . I really don’t want radiation therapy for various reasons but feeling that this thing is growing somewhere inside me and will kill me is constantly in my head. Sometimes I think what’s the point? I’m already quite ill most days with my ckd (12% function) . Dialysis looms .... I’ll be struggling then. Apologies everyone.....just feeling sorry for myself x.

User

Posted 17 Jun 2018 at 11:07

Sounds like as a minimum you need to insist on a second opinion....

User

Posted 02 Jul 2018 at 14:41

cheers !!!!

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

User

Posted 03 Jul 2018 at 01:23

Sorry Andy but you said recently that that RT was recommended and you supposed this had to be done which seemed to indicate this would be the case. You now say you don't want RT for several reasons. You could defer a decision for a while but there can come a time when you have to make up your mind whether you are going to have the recommended RT or rely on systemic treatment. Having a second opinion may help you come to a decision.

Barry

User

Posted 03 Jul 2018 at 15:10

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).

User

Posted 03 Jul 2018 at 15:16

0.03 is undetectable ! I don’t get this at all. Most hospitals don’t look at figures that low now or use a super sensitive test any more. You’ll be good to enjoy the next six months brother !!

User

Posted 03 Jul 2018 at 16:34

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

User

Posted 03 Jul 2018 at 16:59

Yep! ..... I'm with Chris J on this one..... 0.03 is considered undetectable ..although.. I note you've had 3 consecutive minute rises ?
All pretty insignificant in my book ( I'm not a medic lol! )

If it were me ....I'd wait a little longer...just like you've decided to do...

Minute fluctuations can happen for a number of reasons ....not least because of equipment 'noise' / variation/ calibration etc...
Some hospitals only measure PSA to one decimal point....so if you were under one of those you would not be aware of any change in PSA levels anyway..
Enjoy the summer! ..
Cheers
Luther

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