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A New Chapter

User
Posted 10 Sep 2018 at 22:58

Thank you, everyone, for your kind replies. 


The PSA results did come as a surprise.  I just suddenly thought that my journey could be shorter than I had hoped for if my main treatment showed signs of failure so soon.  


I needed to let the news sink in and decide what to do for the best.  I'm not due to see the oncologist until December and next week I'm should have my next Zoladex implant.


If that's not working for me then I wondered if I should change to Prostap rather then commit myself to 3 more months of Zoladex.


Anyway I've decided to have a testosterone test in the next few days to see what the situation is.  Maybe have another PSA test next month just to see how things are going.  I know trends are more important than individual tests so I'll see what happens.  If it does continue to rise then I feel I should see my oncologist earlier. 


I think at this stage, she would say let's see how things go over the next few months. 


Steve 

Edited by member 10 Sep 2018 at 23:02  | Reason: Spelling

User
Posted 10 Sep 2018 at 23:11
I think another injection and then another blood test is a sensible approach. You may just have had a bad batch last time that didn't last quite long enough.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Sep 2018 at 23:12
Hi Steve have you thought about a psma scan to try and locate the recurrence? If it's still localised you could be a candidate for more local treatment??
User
Posted 18 Sep 2018 at 02:22

Hi, 


Just had my testosterone test result come through, which was 0.8.


In June last year, I had a result of 0.3, even though, at that time, I had ended my original hormone treatment nine months before.  Does this mean that this time the Zoladex isn't working as well for me? Could this be the reason why my PSA has increased recently?


My next Zoladex implant is due tomorrow morning. 


Steve 

User
Posted 18 Sep 2018 at 08:27
No - you are very very close to castrate level. It may just be because you are so close to having your next jab.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Oct 2018 at 19:18

Hi, 


I had a PSA Test a few days ago to see if the test I had last month was just a "one off". Then the result was that my PSA had risen to 1.30 from 0.75 in mid June and 0.925 at the end of June.  This was in spite of restarting my Zoladex treatment again in March when I was told my PCa was incurable as my PSA had been doubling every 10 weeks. 


I was hoping that my PSA would fall again but this evening my results show that it's risen again to 1.40.  Only a small rise but the trend is still upwards.


I'm not due to see my oncologist until January.


Steve 

User
Posted 30 Oct 2018 at 20:09
Hi Steve ,
I know we are all different But have a look at my PSA results and treatment from

15th Nov 2015 0.6,

15th Dec 2015 1.14,

15th Jan 2016 1.2 slowed at last.

22nd Feb 2016 0.9 going down testro 16.04

Appointment at the RM back on six monthly

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
User
Posted 30 Oct 2018 at 23:53

Steve


None of us like to see a PSA increase, no matter how small.


Ulsterman

User
Posted 31 Oct 2018 at 10:59

Hi Steve,


Sorry to hear your PSA has risen again, try to keep positive.


Best wishes


Arthur

User
Posted 31 Oct 2018 at 12:10

Sorry to hear this Steve. Is it worth contacting your specialist nurse or the oncologist‘s secretary to see what their thoughts are?


Ian

User
Posted 31 Oct 2018 at 15:55
Sorry this has happened Steve.

Thinking of you all
We can't control the winds - but we can adjust our sails
User
Posted 01 Nov 2018 at 08:19
Time for a psma scan, to see what's been missed and if it's locally treatable.
User
Posted 01 Nov 2018 at 14:13
Agree a PSMA scan might be helpful. You could check whether you could have this on the NHS.Certain hospitals have already indicated they wish to do this and I am not sure whether lack of implementation is due to any one or more of three considerations, namely NICE approval for NHS, lack of funds, the need to have nearby source of generating the ligand. Unfortunately, the cost of the scan privately is of the order of £2500 depending where you go which unless things have changed recently means in the London area for UK.

If only a very few hotspots are found it may be possible to treat these and slow the progression of cancer, either as stand alone or with systemic treatment.

In view of your other medical condition it would be best to establish whether the foregoing would be helpful.
Barry
User
Posted 01 Nov 2018 at 19:22
Sorry to read your latest result. Worth asking for an earlier than planned onco meet?

Ray
User
Posted 02 Nov 2018 at 08:22

The oncologist at the Royal Marsden Hospital told me they have a PSMA scanner there but it’s only available for patients within their catchment area. I think it would cost me more than £2600 to move from Coventry to Sutton in Surrey to be included in that group, should I ever need such a scan!


I think there is also one at UCLH, and at the Mount Vernon Hospital: https://www.stricklandscanner.org.uk/


There does seem to be a dearth of these sophisticated scanning facilities in Britain and the Birmingham Prostate Centre say they have had to send over 30 patients to Germany for such scans in the past. So much for the miracle of the NHS (although it has been miraculous for me recently).


A recent post here noted that a new Thorium isotope is showing good promise as an even better PET tracer than Gallium 68, the gold standard up till now. This nuclear medicine is advancing rapidly, almost daily, so we all might be completely cured one day soon! 😉


Cheers, John.

Edited by member 02 Nov 2018 at 08:30  | Reason: Not specified

User
Posted 03 Nov 2018 at 09:38

Thanks everyone for replies and good advice. 


I would really like to have a PSMA scan just to let me know what's going on. It's the "not knowing" that's the worst thing.  If there's nothing much they can actually do once they have the information then I suppose they would regard it as an expensive way to deal with my curiosity.


Sometimes I feel frustrated that I know if I spoke to to my oncologist now, I'm sure nothing would change.  She'd say "Well it's not going up (PSA) as quickly as it was before we put you back on treatment".  I would have expected the figures to remain around the level they were in June, especially this early in the treatment plan.


Steve 

Edited by member 03 Nov 2018 at 13:17  | Reason: Not specified

User
Posted 03 Nov 2018 at 16:34
There are lots of cases out there who really seem benefit from further salvage radiation if there are only a couple of hot spots to deal with.

I think it would be worth asking about.
 
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