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User

Posted 26 Feb 2016 at 00:44

Following diagnosis of locally advanced prostate cancer my treatment comprised of radiotherapy and 2 years of hormone treatment

The final hormone injection was in November 2015

My blood test this week showed a rise in PSA level from undetectable to 0.2

I have been advised that this is good news as it demonstrates my body is getting back to normal and a small rise should be expected

Only if it reaches a level of 2 would there be any reason for concern

Obviously to get to 2 the PSA must rise

This is causing concern and obviously the next blood test in 3 months cannot come quick enough

I am therefore keen to hear from members who have had a similar experience

On diagnosis my PSA was 45 and Gleason score 7 (3+4) with localised spread only

User

Posted 26 Feb 2016 at 10:15

Hi PJ,

I was in a similar position to you back in 2011.

After completing RT and 3 years of HT, my PSA took about 2 years to rise from 0.2 to 2.

During that time I was feeling well and the side effects of HT had graduallly worn off.

But at the end of 2013 my PSA shot up from 2 to 6 in as many months, I was back on HT and had salvage Brachytherapy last year.

So I am like you although I am now coming off HT for the second time, my last shot was in November, my PSA in January was 0.1.

I think the important thing when your PSA starts to rise, is to hold your nerve and see how fast it rises, a gradual increase isn't too bad, it is when it starts to quickly double that you need to get treatment.

Dave

User

Posted 26 Feb 2016 at 21:44

Chris,

I knew I'd grab your attention in time !

I've read somewhere that after RT it can take up to 24 months to reach nadir. An early low level whilst great at the start , still needs to be monitored.

My PCa pal had reading 0.01, 4 months after RT , then to 0.1, 6 months later. Onco not worried .

That's why I'm grateful to Dave's post. I'll be more relaxed now.

And it's why I'll have at least another 4 years of monitoring.

It's a real pain having to play this waiting game with PCa. And Lyn's comments are true too, regarding remaining cells.

John

User

Posted 26 Feb 2016 at 21:58

Chris,

Forgot to add that I'll see you in the Long Haul Lounge too. Couldn't ask for a better travelling companion.

John

User

Posted 26 Feb 2016 at 22:02

hi John, yeah you and the others have my attention but not a big problem for me as I have short attention span!!

I think anyone with any form of cancer diagnosis will take good news and live with it, for as long as there is good news and until there is bad news it can stay in the positive camp. Being told that you are "cured" is, to me, effectively the same as being in remission. Who knows if it has gone or if it will return!

I am happy as I am at the moment and know that my PSA will be monitored so what's the point in worrying?

Looks like we will be yo-yoing with our results quite probably for the rest of our lives, let's hope it will be at the bottom of the scales though?

Regards Chris/woody

Life seems different upside down, take another viewpoint

Edited by member 26 Feb 2016 at 22:04 | Reason: Not specified

User

Posted 26 Feb 2016 at 22:12

Chris , ( and sorry pj for us hogging your post here )

Absolutely . It's good to look to the positives . You never know what may happen in the future but having achieved such a low score is always great.

I'm happy with 0.2 ( I believe any under 0.5 is good after RT and under 0.2 even better ) as long as there is no upward trend. If it goes lower then I'll be pleased too.

So let's just relax for a while and as you say , hopefully the scores will be at the lower end of the scales.

Keep well ( and to you others too )

John

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User

Posted 26 Feb 2016 at 10:15

Hi PJ,

I was in a similar position to you back in 2011.

After completing RT and 3 years of HT, my PSA took about 2 years to rise from 0.2 to 2.

During that time I was feeling well and the side effects of HT had graduallly worn off.

But at the end of 2013 my PSA shot up from 2 to 6 in as many months, I was back on HT and had salvage Brachytherapy last year.

So I am like you although I am now coming off HT for the second time, my last shot was in November, my PSA in January was 0.1.

Dave

User

Posted 26 Feb 2016 at 13:47

PJ, to be at 0.2 nearly three months after the last hormone treatment is cause for celebration! Don't compare yourself to others whose PSA remains down in the tiny numbers - you still have a prostate with healthy prostate cells in it which will be recovering from the battering they have had and starting to function again so even if your PSA rises in 3 months and again 3 months after that, it doesn't mean there is a problem unless it gets up to 2.

Have a look at Ray's profile - he is the master of fluctuating PSA and proof that healthy cells recover while the cancerous cells don't.

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

User

Posted 26 Feb 2016 at 15:44

Hi PJ

I had a similar diagnosis to you but with a higher PSA. when I saw the oncologist last month she said it was now undetectable and would see me 4 monthly instead of 6 monthly to monitor. I've now stopped the HT after 3 years. She said she wouldn't be concerned unless it rose to 2, so that seems that is a standard (if that's the right word) they go by.

Arthur

User

Posted 26 Feb 2016 at 18:13

Hello PJ9,

I am so glad that I've read your post today and the ensuing replies.

It's very timely for me as I am now 'stuck' on a Psa score of 0.2 for the second time. So Dave your reply was great and helpful.

It gives me comfort. The Onco said she wasn't worried at all and I'll be checked 6 monthly unless the trends show cause for concern.

So many thanks,

John

User

Posted 26 Feb 2016 at 21:18

Hi PJ, all the waiting causes problems doesn't it? You would think that we would get used to it, my PSA has just been recorded at 0.01 (not rubbing it in John) and am very relieved at that but having read your post and Daves it has taken the shine off it a bit and has suddenly struck home that nothing should be taken for granted and only time will tell. Again waiting will be a chore but will have to live with it.

Up until now I had not taken the idea that PCa might resurrect itself as a big concern, having not actually read anyone else's posts regarding it, so all of a sudden you two guys ( how many more) have opened my eyes.

I know I am on the add Asprin trial for the next five years and this is to see if Asprin has an impact on cancer cells reforming after RT so will be monitored closely, at the moment PSA test every three months, and would think that if there is the slightest rise it will trigger a response from the trials team.

Quite probably nothing will occur until after ending HT so have one more year on that and will have to wait for the effects of HT to wear off to see if things change.

Looks like I am in for the long haul now.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 26 Feb 2016 at 21:44

Chris,

I knew I'd grab your attention in time !

I've read somewhere that after RT it can take up to 24 months to reach nadir. An early low level whilst great at the start , still needs to be monitored.

My PCa pal had reading 0.01, 4 months after RT , then to 0.1, 6 months later. Onco not worried .

That's why I'm grateful to Dave's post. I'll be more relaxed now.

And it's why I'll have at least another 4 years of monitoring.

It's a real pain having to play this waiting game with PCa. And Lyn's comments are true too, regarding remaining cells.

John

User

Posted 26 Feb 2016 at 21:58

Chris,

Forgot to add that I'll see you in the Long Haul Lounge too. Couldn't ask for a better travelling companion.

John

User

Posted 26 Feb 2016 at 22:02

hi John, yeah you and the others have my attention but not a big problem for me as I have short attention span!!

I am happy as I am at the moment and know that my PSA will be monitored so what's the point in worrying?

Looks like we will be yo-yoing with our results quite probably for the rest of our lives, let's hope it will be at the bottom of the scales though?

Regards Chris/woody

Life seems different upside down, take another viewpoint

Edited by member 26 Feb 2016 at 22:04 | Reason: Not specified

User

Posted 26 Feb 2016 at 22:12

Chris , ( and sorry pj for us hogging your post here )

Absolutely . It's good to look to the positives . You never know what may happen in the future but having achieved such a low score is always great.

I'm happy with 0.2 ( I believe any under 0.5 is good after RT and under 0.2 even better ) as long as there is no upward trend. If it goes lower then I'll be pleased too.

So let's just relax for a while and as you say , hopefully the scores will be at the lower end of the scales.

Keep well ( and to you others too )

John

User

Posted 26 Feb 2016 at 22:47

Hi PJ9,

My situation and treatment is almost the same as your's (mine being 48.85 PSA at diagnosis, Gleason 7).

I've had radiotherapy and will soon be finishing 2 years of Hormone Treatment.

My PSA is now 0.027 and I asked my Oncologist what it might be once my treatment finished.

She said that when I finished HT she expected my PSA to rise at first but to settle down to a new normal level.

She said she would be happy with my figure being 2 to 2.5. She would regard that as being successful.

Hope that helps.

Steve

Edited by member 27 Feb 2016 at 02:35 | Reason: Not specified

User

Posted 27 Feb 2016 at 16:19

Steve,

A PSA of 2 plus your nadir is the widely accepted biochemical failure point for RT so I can understand why an onco would be happy if it was within these limits. You don't know by how much HT is holding down your PSA and it will probably take a year or so after you have ended it to get a better idea of how all the treatment has left you. Still as always a waiting game.

Barry

User

Posted 28 Feb 2016 at 17:02

Thanks for all the interesting comments

It's clear to see there are a number of us in a similar situation

It seems also strange to celebrate a PSA rise but the logic is sound

However as also stated we need to hold our nerve moving towards the next tests

One question that comes to mind however is the benefit of a partially functioning Prostate going forward ?

I will update when I have my next results and would also appreciating hearing how the rest of you progress

Thanks again

PJ 9

User

Posted 28 Feb 2016 at 19:12

Hi PJ,

In answer to your question "...One question that comes to mind however is the benefit of a partially functioning Prostate going forward ?..."

You may be pleasantly suprised, I certainly had my moments.

However the important thing to bear in mind, is to refrain from sexual activity for 48 hours prior to your PSA tests, because even a partially recovered prostate produces more PSA when it is excited.

Dave

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