2 of the things to avoid before a PSA test are :-
"Ejaculation can raise levels. Some doctors recommend you refrain from sexual activity for 2 days prior to lab testing
Bicycle riding may raise levels (due to seat pressure on the prostate)"
There are other factors that can give rise to increased PSA which one cannot prepare for as you are doubtless aware. Sorry, can't answer about possible effect of fasting prior to PSA, perhaps your GP could advise.
As regards your future journey, I think any speculation here would be so vague and uninformed as to be unhelpful because different types of cancer can advance/mutate at different speeds in individuals. Sometimes it does not develop sufficiently to warrant any/further treatment at any point whereas sometimes it can develop quickly, perhaps in steps, to the point that an appropriate treatment is recommended. Even your consultant, who is in the best position to give an opinion as he/she knows your case best and has the advantage of intimately knowing many case histories and studies, may well struggle to provide a helpful answer to your question at this early stage.
Edited by member 28 Apr 2021 at 00:01
| Reason: wrong word
Barry |
User
It will often depend on the speed that the PSA is rising Junior. Some hospitals start treatment again when the PSA gets to 2, others wait until 5 or 10. I think you have to see the last few years as a hormone holiday and be prepared to go back on the hormones at some point to get everything back under control. We have members here who have been able to control the cancer very well for many years (even longer than you have already done!) by starting & stopping the hormone treatment.
Your nurse may be able to tell you what PSA level would trigger going back on the hormones, or you might have to wait to discuss it at your next consultant appointment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Junior
My Oncologist signed me off and told me to keep having my PSA tests every 6 months and not to worry about ups and downs and to make an appointment again if the PSA reaches 2.0.
Gary
Edited by member 18 Oct 2016 at 09:33
| Reason: Not specified
User
Junior
Since I came off HT last February I see the oncologist every 4 months, she said as long as it doesn't reach 2 she's not too concerned
Arthur
User
i had a full body scan on 23/05/2017 and have just be advised by the oncology nurse that the results have shown nothing to be concerned about.
i will now continue with the psa checks starting with the next one w/b 24/07/2017 and 6-monthly thereafter.
could have been a lot worse i think (i.e. cancer spreading to bone).
thanks to everyone for their moral support.
User
Hi Junior, fingers crossed the PSA is fairly stable this time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Junior,
I am of the thought that with a Gleason score of 4+5 I would be looking to go
back on Hormones before the next PSA test at six months ,
I would ask for a monthly test
(CHECK MY PROFILE}
Good luck
Barry
Edited by member 25 Sep 2017 at 19:38
| Reason: Not specified
User
hi Junior, the rate of rise is fairly stable but 6 months does seem a long time to wait so I am surprised that the MDT suggested it. You might be under one of the hospitals that waits until the PSA rises to 20 before re-starting hormone treatment. Do you have a nurse specialist allocated to you? If so, could you phone him/her to ask whether 3 months might be better for the next test just to keep an eye on it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
That makes more sense, Junior. A lot of turkey and wine has never been raised as having an impact on PSA - happy Christmas!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I think your urologist will probably pass you over to an oncologist for further treatment. You would be well advised to remove your real name and phone number from your profile as an anti-troll measure! You have been at this for as long as me and with the same Gleason 9 diagnosis. We are a rare breed - well done!
AC
User
i had an appointment with the urologist on friday11may2018:-
i am now on hormone treatment as follows:-
bicalutamide(50MG) tablets daily from 15may with an intramuscular injection of decapeptyl(3MG) after 10 days on 24may(and every 4 weeks thereafter) - the tablets will continue and after 3 months another psa reading will be taken.
as usual comments/advice/moral support would be most welcome
User
That looks like the kind of treatment regime that many other members have had in similar situation to yours. Hopefully, your PSA will drop very quickly and if you are managing the side effects okay, you may eventually move to 3 or 6 monthly injections rather than every month.
Try to keep active - fatigue can play havoc so rest when you need to but try to do things like walking or swimming.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Sorry can't answer that but hopefully as your psa had gone down it wont cause any problems, good luck with next PSA test.
regards Barbara
User
Okay - this means that the hormone treatment isn't working quite as well as before but the rate of rise is still quite slow. There isn't a real concern at the moment - if the PSA gets to 5 or maybe 10 the onco may want to add additional treatment to help the hormone be more efficient - the nurse specialist might suggest to you in July that you have a testosterone test to see how well the hormones are working.
No panicking yet, Hashim - you are still doing amazingly well!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
My husband is in a similar situation with a rising psa over 3 consecutive tests whilst on HT....he has had a bone scan and it has returned with no significant changes which is amazing. He will have an MRI on the 31st Jan '22.
He was diagnosed in June 2020 aged 52 with a Gleason 9 T4N1. I'm hopeful that it is just the HT not working so may be switched or layered to keep his psa in check.
Good luck 👍
Show Most Thanked Posts
User
Hi Junior, I am not too sure about your results as am relatively new to the site as well(February this year) but looking at the gradual increase and listening/seeing to what others have said before about PSA increases generally I would imagine your urologist/specialist would be thinking about further tests to check it out.
These being MRI scan, bone scan and if anything shows some targeted biopsies.
Me answering this for you will bring it back to the top for someone else more experienced to see and comment on.
Hope all goes well
Regards Chris/Woody
Life seems different upside down, take another viewpoint
User
HI Junior
Firstly check whether you think its wise to display your personal details on your profile
From your profile I note RT ended June 2008 and Zoladex Jun 2011. Since then your PSA has fluctuated as you might expect with still having a prostate. Check my profile to see how my PSA also fluctuates. Hopefully that’s down to healthy cells recovering from RT and thus producing some PSA rather than anything sinister. But keep having those PSA checks.,
Ray
User
Hi Junior, these results look excellent - it must be a huge relief to you that the PSA is holding so well this many years after RT.
Some men wonder how it would be to have a treatment where you only know whether it has worked when it doesn't fail but you are a good example. To be holding a PSA of less than 2 some seven years after RT is probably the nearest you could get to confirmation that RT/HT was a good choice for you. Of course, 4 years after the hormone treatment finished you would expect the testosterone to be back up (and hopefully most of the side effects of low testosterone to be a distant memory) and your low but fluctuating PSA is in line with the healthy prostate cells regenerating so all in all, a big congratulations from me :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Junior,
I would be very pleased with those readings!
Yes it is going up, but slowly does it.
Well done.
Chris.
User
my psa has risen from 0.9(april 2016) to 1.1(october2016) -
the oncology nurse says that she is not overly concerned and i will be seen again in october 2017.
any comments would be most welcome
User
Junior, that's fantastic news. When we talk about people who were diagnosed with high Gleason who are still around years later, I think we sometimes forget about you! With a G9, it is brilliant that your PSA has remained so low for all these years. There was bound to be a slow rise after the hormones stopped but you have stayed well below the threshold for concern. I think in NHS terms, you would now be described as officially in remission.
It seems a long time till your next appointment though - 18 months? Is that a typing error?
Do something lovely to celebrate x
Edited by member 21 Apr 2016 at 16:02
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Soren Kierkegaard:-
typo - should have been 2016 -
your comment(re remission) is the most encouraging i could ever wish for -
if correct, i am sure that it is due to the fact that i have had nothing but a lot of tender care from all the individuals i have had to deal with at northamptonshire general hospital and the "health" regime that i have followed since being diagnosed.
i shall mention it to my mcmillan nurse when i next see her(i see her on the 1st tuesday of every month at our local support group) -
once again many thanks.
if you are correct, then i would like someday to let everyone know my history so that it will at least give some people hope and encouragement.
User
Your profile 0.9 in Oct 15 and 1.1 April 16 and PSA test every 6 months. So that makes next test in Oct 16?
I wouldn't be overly concerned but some concern as that's two consectative rises. But 1.1after all these years is pretty good going.
Ray
User
14/10/2016 -
my psa reading is up from 1.1 to 1.7 -
I have been advised that even though there is need to be concerned,
a further blood sample will be examined in around 6 weeks time in addition to examination of a urine sample.
any comments would be most welcome
User
As my profile shows 1.6 triggered another test in a months time. The result being quite a drop in PSA level. However this is your 3rd consecutive increase so still some concern there. I can't back thus up with science nor is it 100% consistant on keeping PSA under 1 but I still keep to having a quiet week as possible before the test.
Good luck
Ray
User
You will have seen from other threads on this forum the things that can slightly elevate PSA and thus should be avoided where possible prior to having a PSA test and I trust you have acted accordingly. Your PSA is still good for so long after treatment but the three latest rises are well above the general rate of increase and could be of concern. I sincerely hope this is not the case with you but sometimes PCa that appears to have been eradicated by RT/HT becomes active again, maybe through some cancer cells being radio resistant, not reached by the RT or a completely new tumour starting in the Prostate or elsewhere. I also had RT in 2008 but without HT thereafter. My PSA remained low for over two years but as shown in my bio, this began to rise slowly but persistently. My consultant at the Sutton Marsden suspected a growing tumour in the prostate and an MRI showed this was the case ,although my PSA was only 1.44. I was subsequently referred to UCLH for HIFU treatment within a study and my PSA was 1.99 immediately before this op and 0.39 after this treatment. (It has risen again since but that's another story).
I was fortunate to have a consultant who authorized an MRI scan notwithstanding my lowish PSA and this showed the tumour. Often, PCa with such a low PSA will not show cancer on an MRI scan, even on a 3Tesla high quality one.
The fact that a urine test is being done to check whether an infection is affecting your PSA and a further blood test seems to indicate that your PSA increase is not what was expected and calls for closer monitoring.
Edited by member 15 Oct 2016 at 00:51
| Reason: Not specified
Barry |
User
many thanks barry -
please remind me of the things
"things that can slightly elevate PSA"
so that i can avoid them before the next test.
User
ray,
many thanks for the reply.
User
i would be very grateful if someone could hypothesise on my future journey based on my psa results - best case & worst case - warts and all.
i fully appreciate that anyone who is not or has not been in the position i am in will only be giving me their informed opinion.
User
question? would a 14(fourteen) hour fast(not even water) before i gave the blood for the psa test affect the psa result?
i needed to the 14 hour fast for a simultaneous blood test that was required by my doctor for checks for chlorestoral, liver blood count etc. etc.
User
2 of the things to avoid before a PSA test are :-
"Ejaculation can raise levels. Some doctors recommend you refrain from sexual activity for 2 days prior to lab testing
Bicycle riding may raise levels (due to seat pressure on the prostate)"
There are other factors that can give rise to increased PSA which one cannot prepare for as you are doubtless aware. Sorry, can't answer about possible effect of fasting prior to PSA, perhaps your GP could advise.
As regards your future journey, I think any speculation here would be so vague and uninformed as to be unhelpful because different types of cancer can advance/mutate at different speeds in individuals. Sometimes it does not develop sufficiently to warrant any/further treatment at any point whereas sometimes it can develop quickly, perhaps in steps, to the point that an appropriate treatment is recommended. Even your consultant, who is in the best position to give an opinion as he/she knows your case best and has the advantage of intimately knowing many case histories and studies, may well struggle to provide a helpful answer to your question at this early stage.
Edited by member 28 Apr 2021 at 00:01
| Reason: wrong word
Barry |
User
It will often depend on the speed that the PSA is rising Junior. Some hospitals start treatment again when the PSA gets to 2, others wait until 5 or 10. I think you have to see the last few years as a hormone holiday and be prepared to go back on the hormones at some point to get everything back under control. We have members here who have been able to control the cancer very well for many years (even longer than you have already done!) by starting & stopping the hormone treatment.
Your nurse may be able to tell you what PSA level would trigger going back on the hormones, or you might have to wait to discuss it at your next consultant appointment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Junior
My Oncologist signed me off and told me to keep having my PSA tests every 6 months and not to worry about ups and downs and to make an appointment again if the PSA reaches 2.0.
Gary
Edited by member 18 Oct 2016 at 09:33
| Reason: Not specified
User
Junior
Since I came off HT last February I see the oncologist every 4 months, she said as long as it doesn't reach 2 she's not too concerned
Arthur
User
User
the following was received from my urology nurse as a result of my last blood/urine samples:-
"psa is 1.8ug/L – a fractional rise since the October blood test.
MSU showed no growth but 32/uL red blood cells were present.
MSU is to be repeated in a few weeks to see if it was the tail end of an infection.
Oncologist is not concerned in the psa rise as I am asymptomatic.
A rise to psa=5 will be the time to consider other treatment.
A follow up appointment will be made for april2017."
any comments, explanation of 1.8ug/l & 32 /uL would be most welcome
User
my latest appointment was a discussion on the phone with the urology nurse on 28/04/2017 as follows:-
"there has been a rise in my psa from 1.7 to 3.
as a result of this and my ongoing(diminishing) hip pains over the past 3 months, an appointment is being arranged for me to have an xray/mir scan.
has anyone come across a similar scenario."
User
Hi Junior,
As has been previously said, you have done very well coming from when you were diagnosed and the actual diagnosis. However, there have been other men on this forum who had a gradual but increasing PSA rise following many years when their PSA was fairly stable. Your cancer cells were attacked by the course of radiotherapy aided by HT. Sometimes any cancer cells that may have survived can be virtually dormant, perhaps for a number of years but for reasons that are not clear, at some point in time, perhaps through mutation or consolidation begin to become active again. Also where there is still a Prostate, even a radiated one, it is also possible for a new tumour to grow.
In some cases, even with a fairly low PSA, a good quality MRI scan may be able to identify where the PSA is being produced and appropriate further treatment started. But in other cases, dispersed micro cancer cells may not show on an MRI scan. In the latter case, If PSA continues to increase beyond a level decided by your consultant, It may well be decided to treat you with HT and or another systemic treatment. If it can be determined that there is cancer in the Prostate, you might be offered further RT, or focal treatment and possibly additional systemic treatment.
My original Gleason was lower than yours and I had HT/RT in 2008. After a couple of years or so my PSA began to increase very slowly. Though slow, every PSA thereafter showed a rise at an increasing rate. By the time it reached 1.4 I was lucky to be given an MRI scan which showed cancer was in the Prostate. A 50 needle Transperineal Biopsy revealed only one core with cancer and this was treated with HIFU which had the effect of reducing PSA to 0.39 and twenty one months on from HIFU to 0.66. There is still a suspicious area in my Prostate and also in an Iliac node which may be responsible for the PSA or there could be micro cancer cells elsewhere. Also, as I still have a Prostate, non cancerous cells could be wholly or partially responsible. Further treatment may or may not be required at some stage and I am being monitored.
You can't assume that your cancer journey will be the same as anybody else here even if they had a similar diagnosis and treatment. It's best to discuss with your consultant when your MRI scan has been assessed.
Barry |
User
barry,
many many thanks for your prompt and enlightening reply -
let's hope for the best when the next results appear.
User
i had a full body scan on 23/05/2017 and have just be advised by the oncology nurse that the results have shown nothing to be concerned about.
i will now continue with the psa checks starting with the next one w/b 24/07/2017 and 6-monthly thereafter.
could have been a lot worse i think (i.e. cancer spreading to bone).
thanks to everyone for their moral support.
User
had a telephone discussion with the urology nurse on my latest psa blood sample(given in august 2017):-
my psa has risen from 3 to 3.9 -
the mdt team have suggested that the situation be monitored and if the psa doubles in 6 months, then they may consider restarting hormone treatment -
i will be giving another sample in the next few days.
once again many thanks for all your support/comments.
Edited by member 06 Sep 2017 at 16:30
| Reason: Not specified
User
Hi Junior, fingers crossed the PSA is fairly stable this time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
my psa has now risen to 4.4(from 1.8 in october) –
a sample will be will reviewed in 3 months time with a view to starting hormone treatment if there is a significant rise in my psa.
sorry to be so brief, but i don't know what else to say - i would appreciate any guidance as to how is should be putting information on this forum.
as usual any comments/advice(especially from anyone who has been down a similar route) would be most welcome.
thanks in advance
Edited by member 26 Sep 2017 at 13:06
| Reason: Not specified
User
Hi Junior,
I am of the thought that with a Gleason score of 4+5 I would be looking to go
back on Hormones before the next PSA test at six months ,
I would ask for a monthly test
(CHECK MY PROFILE}
Good luck
Barry
Edited by member 25 Sep 2017 at 19:38
| Reason: Not specified
User
hi Junior, the rate of rise is fairly stable but 6 months does seem a long time to wait so I am surprised that the MDT suggested it. You might be under one of the hospitals that waits until the PSA rises to 20 before re-starting hormone treatment. Do you have a nurse specialist allocated to you? If so, could you phone him/her to ask whether 3 months might be better for the next test just to keep an eye on it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
apologies that should have read 3(three) months(i have corrected the post) - i plan to give the sample on 27/12/2017(hope the christmas celebrations do not affect my psa)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
User
That makes more sense, Junior. A lot of turkey and wine has never been raised as having an impact on PSA - happy Christmas!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Junior
Tony was diagnosed in 2006 gleason 9 t3B very similar to you, tony has been on and off hormones quite a few times usually when his psa had gone above 5, as soon as his psa has gone to almost zero he has been taken off them again.( he has usually has a mri scan before re-restarting them) the last rise he had at the end of last year went up rapidly , had a scan and it was in 1 lymph node, he is now on hormones permantly, will have another scan in November before seeing onco. the other times his psa had risen there had been no spread. he has no symptom at all (other than getting up 3 or 4 times in the night) try not to worry as hopefully it is just a blip and a short time on HT will sort it out.
regards Barbara.
User
i submitted a blood sample for a psa test on 27/12/2017 andi was give the result in february/march of 6.9(up from 4.4 in october2017).i submitted another sample on 20/03/2018 and have been told that my psa is now at 8.7 and that i will be given appointment with the urologist in about 2 weeks time.
sorry to be so vague/brief but as usual i would be extremely grateful for any comments(especially anyone who is on a similar route as myself(gleason----9)
Edited by member 27 Apr 2018 at 19:35
| Reason: Not specified
User
I think your urologist will probably pass you over to an oncologist for further treatment. You would be well advised to remove your real name and phone number from your profile as an anti-troll measure! You have been at this for as long as me and with the same Gleason 9 diagnosis. We are a rare breed - well done!
AC
User
Here is Junior's most recent thread for anyone trying to track progress
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
i had an appointment with the urologist on friday11may2018:-
i am now on hormone treatment as follows:-
bicalutamide(50MG) tablets daily from 15may with an intramuscular injection of decapeptyl(3MG) after 10 days on 24may(and every 4 weeks thereafter) - the tablets will continue and after 3 months another psa reading will be taken.
as usual comments/advice/moral support would be most welcome
User
That looks like the kind of treatment regime that many other members have had in similar situation to yours. Hopefully, your PSA will drop very quickly and if you are managing the side effects okay, you may eventually move to 3 or 6 monthly injections rather than every month.
Try to keep active - fatigue can play havoc so rest when you need to but try to do things like walking or swimming.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
many many thanks for your encouraging and optimistic post
User
well predicted LynEre on 15/08/2018 -
i saw the urologist today to discuss my latest psa and the news was fantastic as follows:-
my psa has reduced from 8.7 to less than 0.2 since my latest treatment started on 15may2018.
my decapeptyl(3MG) injections will now be given every 12 weeks (instead of every 4 weeks) and my psa will be checked every 6 months -
many thanks to those who gave me encouragement(even if in thought only) and as usual i always welcome comments.
User
really good results, you may even find you can come off the hormones if the psa stabilises.
regards barbara
User
I have just been informed by my doctor that I should have had decapeptyl injections at the higher dose in september and october -
I had been told by the urology nurse that I was going on 3 monthly after my last injection on 16august.
I am going to get a 3-monthly injection at 1155 today.
my next psa check is due in February 2019.
I am really concerned that by missing the monthly ones in september and october my progress may be impeded.
any comments would be welcome
User
Sorry can't answer that but hopefully as your psa had gone down it wont cause any problems, good luck with next PSA test.
regards Barbara
User
any observations/comments would be most welcome
latest news:-
psa is less than 0.1
i am receiving 6 monthly decapeptyl injections
the next one is due on 21 august 2020
User
Well that's excellent so unless the injections are causing other problems, I assume you would not wish to change unless advised by your oncologist to do so.
Barry |
User
'Less than' 0.1 means it's below what they can detect which is a good sign. All the best, Peter
User
User
as usual, any observations/comments would be most welcome
latest news:-
psa is now 0.17(previously <0.1(october2020)) -
as a precaution, i will have my next decapeptyl injection in july(rather than october)
User
latest result - psa up from 0.16 to 0.27 - next check will be in july 2022 - any comments or observations would be very much appreciated - good health to everyone