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Recurrence??

User
Posted 17 May 2018 at 11:09
Hi all, joined forum today. Had RP 2015 but recent psa risen to 0.028 from 0.01 post op. Seeing oncologist next week to discuss treatments. I have ckd (stage 5). Does this restrict my options? Thanks ....Andy

Edited by member 18 May 2018 at 20:26  | Reason: Not specified

User
Posted 17 May 2018 at 14:55

Hi Andy

my husband has ckd 5. he is not on dialysis yet, the Onco should be aware of your kidney problems and will take this into account re any treatment you may need. Tony is on HRT at the moment . The ckd may affect some treatments eg if you need radiotherapy they will check if it will harm the kidneys more.

hope you get on ok

regards barbara

User
Posted 17 May 2018 at 15:13

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.

Barry
User
Posted 17 May 2018 at 16:06
Thank you Barry, and yes I’m not allowed the dye used for scans . Yes got news of psa yesterday , at 0.028 which is a small rise.
User
Posted 17 May 2018 at 16:17

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

If life gives you lemons , then make lemonade

User
Posted 17 May 2018 at 17:28

If your PSA is 0.028 you do not have a recurrence and I would be really challenging any onco that suggested salvage treatment to explain why they believe it is necessary.

Edited by member 17 May 2018 at 18:34  | Reason: Not specified

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

User
Posted 18 May 2018 at 18:58
Hi Chris , yes 0.028. And going to sea onco this Tuesday to discuss radiation treatment.
User
Posted 18 May 2018 at 19:02
Hi Lyn, my original psa post op was 0.001 then six months ago 0.020. Four months later 0.028. I am naturally a pessimist but this is growing somewhere . I’d be so happy if you disagree 😂.
User
Posted 18 May 2018 at 19:27

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.

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

User
Posted 18 May 2018 at 20:33
Thanks Lyn, feeling better now. However!! My histology is not great ..... clear margins, pni, Gleason 4+3 and “slight” capsular breakout (t3(b). Ps breakout is my word , I couldn’t think of correct terminology 😂 .
User
Posted 18 May 2018 at 21:27

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

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

User
Posted 18 May 2018 at 23:14
I had my op in 2015, initial PSA "less than" 0.008, then a steady rise over 2 years to 0.03 now 6 months later 0.023 (first drop) I was a T3A so qualified for ajuvant RT at the time but I declined it. Now I know my Gleason was a straight 6 and some people will argue that I wasn't worth treating at all but clearly as it turned out to be a T3A it was!

Your risks are higher with a G4+3 and a T3b and you need to consider your Oncos advise but you could wait for a month and have another test - There is a view in some forums that .03 should be the new 0.2 for BCR and further treatment and if it is on an inexorable rise it wouldn't be long before you hit 0.03..

When mine hit 0.03 6 months ago I saw 3 consultants (2 urologists and 1 radiation ONCO) none advised treatment I think largely because my PSA velocity was flattening and if it's an active PSA producing cancer it will tend to rise exponentially over time.

Make sure you have lots of questions ready for your appointment!

User
Posted 18 May 2018 at 23:47
Yes thank you for your input, one thing I will say is the “latest “blood test was unbelievably taken nine weeks ago so god knows what my psa is now!! I’m well used to such delays at Sheffield royal . Diagnosed in April 15 ..... surgery October 15 . 😡
User
Posted 19 May 2018 at 05:45
make sure they take one on Tuesday in fact I would try and get one done on monday so the result is ready for your consult. Nag the Oncos secretary Monday morning!
User
Posted 23 May 2018 at 22:55

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

User
Posted 23 May 2018 at 23:34

sounds sensible to me. Fingers crossed for stable or a drop when you get your result.

User
Posted 24 May 2018 at 00:34
Seems ridiculous to me - if you were my OH we would be seeking a second opinion
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 May 2018 at 06:04

Originally Posted by: Online Community Member
Seems ridiculous to me - if you were my OH we would be seeking a second opiniion

2nd opinions are always good but what about waiting for two weeks to maybe avoid additional treatment is ridiculous? ?

User
Posted 24 May 2018 at 08:45
No - saying that a post op PSA of 0.01 is not a good result is ridiculous. Proposing salvage RT at 0.028 is ridiculous. I would want to double check that all the decimal points are being read correctly and then I would want a second opinion on whether SRT is appropriate at this point and with the additional health condition.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 May 2018 at 08:49

Hi Lyn, thanks for input, can you elaborate on why you think it’s “ridiculous “ please. I’m genuinely interested, not being funny at all. Do you agree with him that my very first PSA reading of 0.01 was not good.

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

If life gives you lemons , then make lemonade

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.

If life gives you lemons , then make lemonade

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 !!

If life gives you lemons , then make lemonade

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 



User
Posted 03 Jul 2018 at 17:51

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 !!!

User
Posted 03 Jul 2018 at 17:52

Thanks Luther, feeling positive now. 

User
Posted 29 Nov 2019 at 13:30
Any update Andy?
 
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