A rise on this test

Just read through the whole post Bri, you’re doing amazing…hopefully you are feeling that too. I’m already dreading my husbands next PSA but really don’t want it to control our lives. Very difficult to switch off from PCa I find!

Although I’m sure no rise would be so much better, it does seem good news that these are just small rises and fingers crossed it will just settle at some point. Wishing you all the very best.

Bri , I just keep going and don't worry about it. 

Thanks Chris

Cheers Chris. Tbh I’m not really worrying. Obs would prefer it to stall but it is what it is. Hope you are ok mate

Bri

Cheers Chris

Hooe you are both well. Im kind of resigned to it. Tbf when first dx I did t think I’d see 60. But it’s 10 years this year since I was dx 

Bri 

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

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 

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...

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 🤞🏼

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 

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

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

Your doubling time is probably relevant here as it's > 2 years? Which is very slow and hence NOT indicative of micromets.

I think you are doing the right thing having a PSMA scan. If you have £2000 spare a private PSMA scan and a second opinion would not hurt.

Prostate bed I believe

Thanks

Brian

Hi,  it's surprising that they only do psma scans at psa of 2.  I've read that having treatment much earlier is more likely to be successful.  My hospital said they'd refer me to Oncology at 0.2 and a psma scan at 0 5.  They also said patients get private scans and they'll use them.

There are probabilities on line for what might be found at different psa levels.  A single lesion could be seen well before 0.5, much lower in some cases,  but the more it's divided the less probable it will be seen.  If you're paying yourself I'd be trying to get a scan now, although if the hospital refer you and you are confident they will then you could stay with them. You need to keep them on board I'd feel you know. I haven't read your profile as yet so hope there isn't some other factor   All the best Peter