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A rise on this test

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User
Posted 30 Jan 2023 at 14:17
Forgot to update. So last July my PSA went from 0.55 to 0.57
Just had todays consultation and it has risen to 0.69

Medics still not concerned as relatively small rises and still under 1. Had a lengthy conversation about PSMA Scans but medic says not in their protocol to do one at this stage unless there was rapid rise or it got to about 2. She said my next line of treatment would be HT but they would delay for as long as possible.
She seemed to acknowledge that a PSMA scan can pick up earlier but said as I am incurable there is no real benefit to me. I mentioned SABR and she said she does this. I mentioned paying private for a PSMA and she said it may give me some peace of mind. I said surely picking up something earlier would be beneficial but I seemed to get a non-committal response ie anything identified could not be cured as Sabr does not cure it helps to manage the cancer. So left a little confused whilst understanding they do not have a money tree. Also forgot to ask at what point chemo would be a positive’ eg before commencing HT 🤷🏻‍♂️

Any wise informed words appreciated.

Heres my PSA reading from 2018 onwards

May 18 - <0.01
Nov 18 - 0.08
Feb 19 - 0.12
May 19 - 0.12
Nov 19 - 0.14
Aug 20 - 0.17
Mar 21 - 0.31
Jul 21 - 0.37
Nov 21 - 0.44
Mar 22 - 0.55
Jul 22 - 0.57
Jan 23 - 0.69
User
Posted 30 Jan 2023 at 21:24
Brainssac did you have whole pelvis salvage therapy or just the prostate bed?

If it was just prostate bed you still have options for pelvic lymph nodes if that is where the cancer is.

I would seek a second opinion if I was in your position re the PSMA scan.
User
Posted 30 Jan 2023 at 21:36
Oh franci ...
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Jan 2023 at 22:16
?? Just repeating what I have been told by 2 oncologists from different parts of the UK.



User
Posted 30 Jan 2023 at 22:18

Originally Posted by: Online Community Member
Brainssac did you have whole pelvis salvage therapy or just the prostate bed?

If it was just prostate bed you still have options for pelvic lymph nodes if that is where the cancer is.

I would seek a second opinion if I was in your position re the PSMA scan.


Francij thank you. I am not sure I could have further RT to or near the prostate bed. 
However I do need to consider how I can get a 2nd out of area 2nd opinion about the PMSA scan and possible subsequent treatment 

User
Posted 30 Jan 2023 at 22:19
User
Posted 30 Jan 2023 at 23:47
The onco actually does SABR but doesn't consider you suitable. It would perhaps be a different kettle of fish if she was one of these dinosaurs that just isn't aware of SABR or other modern approaches. I can see where the ambivalence comes from - an identified met is highly unlikely to be an orphan; CC has recently gone through all this, apparently unsuccessfully. I am not saying don't get a second opinion but don't set your expectations too high - your onco has done well by you this far.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Jan 2023 at 00:03

Lyn, you know of my onco,5 years ago he would not entertain PSMA or similar scans, two years ago he said we would wait until the PSA got to 10 before he would scan, 7 months ago at somewhere around 1.4 he decided a scan was a good idea. 


Thanks Chris.

User
Posted 31 Jan 2023 at 05:01
The jury is still out on CCs case IMHO. I guess if you are still healthy and HT free in 10 years you would be happy with that CC?

We may never know if treating your lymph node has helped but given you have had no serious toxicity from the treatment (unlike previously) it hasn't done any harm.

Get the second opinion brainsac if you can...
User
Posted 31 Jan 2023 at 07:57

Franci, hopefully the jury is still out, I don't seem to be able to find any personal experiences of the same treatment to compare with.


HT free for ten years would certainly be a bonus. 


Brian, something to consider about going for an out of area second opinion,  you need to know that oncologist favours PSMA type scans and local SABR treatment.


Thanks Chris 

User
Posted 31 Jan 2023 at 17:01
Good point franci - I stand corrected!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Aug 2023 at 22:19
Still waiting for my May appt 😡. Are others having missed appts? They are not even returning my calls when I leave a message. So frustrating particularly when they made the decision to see me every 4 months
Gggrrr
User
Posted 02 Aug 2023 at 01:09

Must be so frustrating for you, maybe try an email and a phone call every day and see how you get on. That is usually my approach if I’m waiting for answers.


Are you waiting for another PSA test at this appointment? If so would it be worth speaking to your GP to get your blood test done ‘in the community’ ?  I get Rob’s done like this and then I just send the results to his consultant or gp recently sent to oncology.


Really hope you get sorted soon 🤞🏼

User
Posted 02 Aug 2023 at 08:07
Thanks Elaine. I thought about asking my GP for a blood form to do the PSA but then i would probably find myself more frustrated if there was a significant change but could not get to speak to an oncologist

Bri
User
Posted 02 Aug 2023 at 23:32

Brian, when under the NHS I was fortunate that our oncology department had two oncology nurses who I could ring at anytime. Does your oncology department have any specialist nurses you could ring.


Thanks Chris 

User
Posted 03 Aug 2023 at 20:34
Hi Chris
I was never given the names of any speciality nurses at Weston Park. Think its time to contact PALs
User
Posted 18 Sep 2023 at 19:07

Managed to get my latest Oncol review albeit 4 months late. The PSA is now 0.81 so a rise but pretty much what I expected. So thats a rise of 0.12 in about 8 months
Discussed scans etc and further treatment. Oncol said in their Trust they offer scans when PSA reaches 2. Discussed how people I know had PMSA scans and treatment to identify PCa in areas like lymph nodes with lower PSA results. . The oncol said that this will only delay the start of HT rather than cure. I said I would want to delay the start of HT if possible. The outcome is that she will refer for a PMSA scan to see if they will accept it.
I know the chances of identifying anything with my PSA is low but seen others on here with lower or similar PSA’s who had PSMA scans that did detect rogue cancer cells.

Edited by member 18 Sep 2023 at 21:19  | Reason: Not specified

User
Posted 18 Sep 2023 at 19:26

Well I'm not in your position, but if I were I too would be in no hurry to start HT. If the PSMA scan were to show a small number of mets then presumably SABR would be a credible option, and if it shows more than a few then HT is presumably the only option.

Dave

User
Posted 18 Sep 2023 at 20:55

I presume so Dave. I am unsure whether I did the right thing asking for the PSMA scan now or if I should have waited until the PSA did reach 2. My thoughts where at 2 it may be HT as the scan might pick up quite a bit of PCa here and these. 

i guess my thinking is to hit it with RT if possible and as soon as  But then it may also mean starting HT sooner than I would want…….aarrgghh…what to do 🤷🏻‍♂️


Would welcome people’s thoughts


Cheers


Bri

Edited by member 18 Sep 2023 at 21:00  | Reason: Not specified

User
Posted 19 Sep 2023 at 00:12

Brian, the waiting time for PSMA scans is quite long in some areas, so your PSA may be slightly higher by the time you get a scan. 


Thanks Chris 

 
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