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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

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.

 
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