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Rising PSA - Advice Please

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User
Posted 21 Dec 2015 at 13:12

Hi everyone, it has been a while since I was last here but I am in need your help again http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

The story so far:

09.06.09 - "He had a prostate biopsy for PSA of 4.07ug/l. He had a slightly suspicious nodule in the left lobe of his prostate. The biopsy initialy suggested a very small focus of Gleason 3+3 adenocarcinoma affecting the right lobe (2%). After further histological review, it was suggested that the right sided biopsies had shown high grade PIN with out-pouchings and the left sided biopsies were inadequate for assessment" His prostate volume was mesured at 22cc, and the protocol for the repeat biopsy was extended from 12 to 16. 

01.07.09 - "Unfortunately, the repeat biopsy has shown a Gleason 4+3 adenocarcinoma affecting 70% of the left sided biopsy materal. Prostate volume was measured at 25cc" "Right side lobe reported as Normal"

Mike's RP performed in September 2009, followed up by his first PSA being in the 'undetectable' range <0.05 until about June 2012 the results are as follows:

 
         June  December
2012 0.06   0.09
2013 0.12   0.15
2014 0.19   0.24
2015 0.23   0.29

His post op biopsies showed no spread to lymph nodes (15 removed) or seminal vessels, but tumour regraded to T3 as it involved both sides.

He has only ever seen his Consultant Urologist who performed his RP and he has been telling him 'it is nothing to worry about' as it 'probably won't affect him for years' but he is worried, we know that Biological Recurrence is defined at 0.2 and it is creeping towards 0.3. he 'badgered' his Consultant for a second opinion after his last PSA test, we have now got a referral to the Christie -( name removed by moderator) Consultant Clinical Oncologist

I suppose my concerns is that initially he went from a small focus to a T3 in 3 months, which I presume would mean it was probably an aggressive tumour, if this was the case would his relapse be the same? 

Do you really have to wait for it to metastasise before it can be 'treated' with Radiation?

How soon does he need to act on this given he is aged 55? 

Any help/advice as to how to proceed would be appreciated.

Thanks

Sharron

Edited by moderator 22 Dec 2015 at 10:19  | Reason: Not specified

User
Posted 21 Dec 2015 at 21:09

MIke should be getting care via a Multi-Disciplinary Team, involving both Oncology and Urology with periodic consultations with an Oncologist. That should be standard NHS practice. Perhaps that will happen now he's about to see an Oncologist. If radiation is advisable, she'll arrange it. Plenty of time at those PSA levels, no need to panic. Explore other treatment options with the Oncologist though. There may be a trial available, for example.

Good Luck

AC in Northants

User
Posted 22 Dec 2015 at 00:02

Hi Sharron,
a bit sad to see you back here - we joined at about the same time as you and Sally&Mike. I have never been away :-( I have to say I am a bit shocked for you that it has been left this long; after RP in January 2010, John had salvage RT/HT in 2012 when his PSA rose to 0.15 and sadly is looks like it has come back again so we are waiting for a new scan in January.

Biological recurrence after surgery is usually considered to be either a PSA of 0.2 or above, or three successive rises so by my reckoning, you should have been referred to oncology in 2013. Perhaps the private urologist is concerned about his outcome statistics now they all have to publish them? It might be interesting to ask the onco what she thinks about the delay.

One way or another, you are at least going to see a specialist now - maybe they will suggest a new scan to see if they can see anything (general view is that it is hard to see where it has spread when the PSA is below 2 but worth asking) and then presumably RT with HT.

By the way, in the intervening years you may have forgotten that it is against the rules to name the medical staff on here so perhaps a good idea to edit your post? The main change to the forum a couple of years ago was to make it open to public searches via Google etc so don't post anything with your personal details or or others :-(

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

User
Posted 22 Dec 2015 at 00:06

PS I forgot to say that it was unlikely that he went from a small focus to T3 in three months - more probable that the scan just didn't show it up well. It certainly doesn't appear to be aggressive as his doubling time is in excess of 18 months.

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

User
Posted 22 Dec 2015 at 14:08

Check out my profile.

When the post RP  psa rose to 0.22 I was given RT with no HT which has held me in good stead for 4 years.

Kind regards

Ray

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User
Posted 21 Dec 2015 at 21:09

MIke should be getting care via a Multi-Disciplinary Team, involving both Oncology and Urology with periodic consultations with an Oncologist. That should be standard NHS practice. Perhaps that will happen now he's about to see an Oncologist. If radiation is advisable, she'll arrange it. Plenty of time at those PSA levels, no need to panic. Explore other treatment options with the Oncologist though. There may be a trial available, for example.

Good Luck

AC in Northants

User
Posted 21 Dec 2015 at 23:15
Thanks for your response AC, the reason why he has not had any other Consultations is due to being dealt with under Private Medical Insurance provided by his Company, he hadn't seen an Oncologist since he was first diagnosed, so effectively all that has been happening is 6 monthly PSA tests and a quick consult with his Urologist. I expressed concerns about follow up's etc after his RP, but was quickly informed by his Urologist that he dealt with everything, and of course we had no reason not to accept this.

Mike has been told, they won't do anything until his PSA reaches at least 5, Possibly 10!

Really appreciate your advice, we are seeing Oncologist tomorrow, will let you know what is discussed.

Many thanks again.

Sharron

Edited by member 21 Dec 2015 at 23:16  | Reason: Not specified

User
Posted 22 Dec 2015 at 00:02

Hi Sharron,
a bit sad to see you back here - we joined at about the same time as you and Sally&Mike. I have never been away :-( I have to say I am a bit shocked for you that it has been left this long; after RP in January 2010, John had salvage RT/HT in 2012 when his PSA rose to 0.15 and sadly is looks like it has come back again so we are waiting for a new scan in January.

Biological recurrence after surgery is usually considered to be either a PSA of 0.2 or above, or three successive rises so by my reckoning, you should have been referred to oncology in 2013. Perhaps the private urologist is concerned about his outcome statistics now they all have to publish them? It might be interesting to ask the onco what she thinks about the delay.

One way or another, you are at least going to see a specialist now - maybe they will suggest a new scan to see if they can see anything (general view is that it is hard to see where it has spread when the PSA is below 2 but worth asking) and then presumably RT with HT.

By the way, in the intervening years you may have forgotten that it is against the rules to name the medical staff on here so perhaps a good idea to edit your post? The main change to the forum a couple of years ago was to make it open to public searches via Google etc so don't post anything with your personal details or or others :-(

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

User
Posted 22 Dec 2015 at 00:06

PS I forgot to say that it was unlikely that he went from a small focus to T3 in three months - more probable that the scan just didn't show it up well. It certainly doesn't appear to be aggressive as his doubling time is in excess of 18 months.

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

User
Posted 22 Dec 2015 at 14:08

Check out my profile.

When the post RP  psa rose to 0.22 I was given RT with no HT which has held me in good stead for 4 years.

Kind regards

Ray

User
Posted 22 Dec 2015 at 17:40

Hi AC,Lyn and Roly

 

Thanks for your help, just back from seeing Oncologist, she has recommended 20 days Radiation with a view to cure, as it has taken so long for his PSA to rise from 0.00 to 0.29, and with his doubling time being more than 2 years (at present), she feels it is more likely to be recurrence within the prostate bed rather than distant.  

So after lots of questions regarding side effects etc, Mike opted for treatment at the Christie starting sometime in the New Year, his philosophy is that he will need it done at some point so wants to get it out of the way, rather than allow more cells to grow making it harder to treat in the future. The Oncologist agreed saying that "it is easier to get rid of a say 10 cells than 100", she also felt that Hormone Treatment would not be necessary at present, but would still be an option at a later date. 

I trust you all keep well and Lyn I hope that you get a good result in January.

Best wishes

Sharron

 

 

 
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