Gleason 9 PSA rise after HT and RT

User

Posted 13 Sep 2018 at 10:51

Hi all

I've not been on this forum for quite some time as Dad has been doing well. He's just had an appointment with his consultant and I could do with some advice to help me think rationally. Background in my profile but briefly: diagnosed May 2012 Gleason 9 3TB. Been off HT 2.5 years and finished RT 5.5 years. steady rises in PSA 6 monthly, most recently 0.9, 1.1 and latest 1.7. consultant not concerned and won't consider further treatment until PSA 4 or 5, this seems really high to me. Also suggested PSA again in 6 months, this seems too long with this latest rise. Any advice or experience would be greatly appreciated. I find myself falling into that place of worry and uncertainty as I did when Dad was first diagnosed.

Many thanks

Sarah

User

Posted 13 Sep 2018 at 11:01

How old is your dad, Sarah? "Normal" PSA levels do increase with age, and a PSA of 3 or 4 would be entirely normal for a man in his 70s, for example.

Chris

Edited by member 13 Sep 2018 at 11:03 | Reason: Not specified

User

Posted 13 Sep 2018 at 17:39

Hi Sarah,

Long time no hear from you

Please read some of my profile too long to write it all up

But 6th months appointment is far too long with a gleason score of 4+5

Taken from my profile

5th May 2016 PSA 1.11 Testro 16.6

Update on the UCLH ,in London my efforts on getting an AUS fitted takes another step this Friday 22nd May 2016
I go in for another stretch as it is closing up again

27th May 016
Had a stretch at the UCLH , when I came home I went straight into retention cathetering a couple/three times a day

10th August 2016 PSA 1.15 up .04

Oct 2016 1.73 Psa up .6

Nov 2016 1.52 Psa down .21

Jan 2017 1.40 Psa down .12

June 2017 3.2 Psa doubled and a bit

Scan results tomorrow

Had PET/CT Scan results on the 27th July

Opps not so good three hot spots
neck
shoulder
groin

Back on Hormones Prostap

Onco said that he will put me forward for a few trials if my groin tumor is outside the RT area, well that was a non starter, I suggested early chemo and long term hormones,
he said that he would look at it,
I then paid for a private chat and got early Chemo , started on the 21Sept 2017

Psa now down to 0.06.

21st Sept 2017.
Had first Chemo some scares will fill in later but first one done out of six.
Bone pain days 6,7,&8

!2 Oct 2017,
Had second chemo no probs

2nd Nov 2017
Had third Chemo .

23rd Nov 2017
Had fourth chemo
PSA 0.05
14th Dec 1917
Had Fifth Chemo
PSA 0.06
Had sixth Chemo
2nd Jan 2018
PSA 0.05
Had PSA test done at the RM on 28 Feb 2018
Then had appointment on the 1st March with my Onco
When the Prof walk in I thought more bad news as I normally
only see the Prof when it is bad news
She pushed a printed PSA results form over the table with a smile
it read 0.04 undetectable ,
She put me back on three monthly but I will see my doctor after two months and get a PSA test
I don't know if it is a result of chemo or my Prostap or a combination of both

21st June 2018
PSA 0.04
Been almost a year since I have been back on treatment
13th Sept 2018 PSA 0.04

Barry

Edited by member 13 Sep 2018 at 17:58 | Reason: Not specified

User

Posted 13 Sep 2018 at 21:17

Dad still has a prostate, and so long after RT some of the healthy prostate cells will have regenerated which means they give off PSA. NICE defines recurrence after RT as 2.0 or above so they won’t do anything until your dad is above that. If dad’s PSA does rise over 2 then it means his RT/HT was unsuccessful and the only treatment he is likely to be offered is long term HT and maybe chemo (depending on the area in which he lives) - in this case, the science suggests that delaying starting the HT is okay because it delays the point at which HT will stop working. Some oncos won’t actually put a man back onto the hormones until his PSA gets to 10 or even 20.

There is nothing to stop dad requesting a PSA test at 3 months from his GP practice but even if it is over 2.0 the specialist is unlikely to take any action earlier than the next review.

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

User

Posted 14 Sep 2018 at 08:18

If you can afford it or can persuade the NHS what about a PSMA scan? if there us a recurrence in a lymph node that hasn't been irradiated this could be an option? Or maybe what old Barry had done??

User

Posted 14 Sep 2018 at 13:01

What Lyn says is the norm I believe but some Oncologists are more proactive than others and each case should be considered individually. I had very slow but persistent rises in my PSA following RT in 2008 and my oncologist felt this very likely indicated some cancer still in my Prostate. An endorectal MRI scan (when my PSA was 1.44 from memory) showed a tumour and it was recommended I had salvage Focal Therapy as salvage treatment for failed RT within a study being done at UCLH. After various scans and tests I was eventually given HIFU some 7 months later when immediately before the procedure my PSA had reached 1.99. I think this successfully dealt with that tumour and my PSA fell to 0.39. However, PSA has risen over the 3 years since my op and a PSMA scan showed cancer in the Prostate. I am due to have a Template Biopsy in the next 2-3 weeks and if this shows significant cancer more Focal Therapy may be offered. I would prefer having this rather than go on to HT, although HT may be necessary at some point, particularly if some cancer cells escaped the Prostate and establish elsewhere .

The PSMA scan was helpful because it showed the cancer was in the Prostate and not in an iliac node about which there was some doubt, making Focal Treatment a possibility. It wouldn't be offered if it had shown the cancer outside the Prostate so for me as for many the PSMA affected treatment possibilities. However it should be noted the scan does not work for everybody as our member Chris found.

Edited by member 14 Sep 2018 at 14:22 | Reason: to correct error

Barry

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