Hi All, my husband has stage 4b, Gleason 10. He got diagnosed last January with a PSA of 186 and after triplet therapy, we got down to 0.03 two months ago. He has PSA tests every month, and last month there was a slight jump to 0.05 which we tried not to worry about. But we’ve just got the PSA result today and it’s 0.1. He does have a slight cold, and has also got a shoulder rotator cuff issue (we had an MRI to rule out any cancer) but I have to admit I’m panicking. We’ll follow up with the oncologist but obviously won’t hear anything over Christmas and I just wondered if anyone has any words of wisdom or advice as to what next steps will likely be. It feels really shitty timing with Christmas and I’m worried this means he’s becoming castrate resistant
Hi Anna42 , sorry to hear about your husband. We all panic and worry but sadly it won’t make any difference. Normally 3 rises or a PSA of 2 trigger a response from the medics but with a clear MRI recently and a very low 0.1, I doubt they will take action but a PSMA PET might pick something up if the PSA goes over 0.2.
I was always confused about the castrate resistance and assumed that once HT stopped holding the PSA then the game changed. However, when my PSA started to increase a small metastasis was found. This was zapped with RT and I am back with the original HT still working. So in my layman’s terms, the metastatic cancer was the only bit castrate resistant.
Try and enjoy Christmas and make some happy memories.
Best wishes, David
Please remember that I am not medically trained and the above are my personal views.
Hello Anna, yes, it is ‘shitty timing’ but what we were told was that ‘ rises of 0.0 something are ‘minuscule amounts’ and can sometimes be put down to different equipment measuring PSA in different labs.
I am no medical expert in PSA measuring but I am an absolute expert in worrying and anxiety! I think we all worry and panic at PSA testing and result time. PSA becomes life controlling in some ways! So, I recognise absolutely your fears . But our worries and anxieties and the huge amount of energy they take up do not change anything! They just wear us down! I wish I could stop them - for all us wives- especially at PSA testing time!
I am wondering whether your oncologist’s secretary is working today or has an answer phone up and running so you can express your concerns for early action next week?
This will enable you to feel somewhat that you have taken a bit of control?
it would seem that your husband’s team are keeping a very close eye on things and, if there is a need to act ( and I emphasise ‘if’ cos I don’t know whether these small rises are significant or not) they will do so appropriately.
Apart from that, I hope you can push all the ‘what ifs?’ To the back of your mind and enjoy the festivities?
Thanks so much David. I’d love to know if anyone else has had the same thing? As in, a small metastasis that became hormone resistant that was able to be zapped. I fear this is fairly unusual but holding out hope that if my husband’s PSA is rising (as opposed to a bounce) then we’re able to zap and contain any castrate resistant cells…
Anna42 you don’t need to start worrying about mets at this stage. If one or two happen later on, then depending on where they arrive, it is possible to attack them with a very high dose targeted (SBRT or SABR) radiation. I was lucky in that my bone met arrived in my sternum and the radiologist was able to get a line of site avoiding heart and lungs (I hope).
Best wishes, David
Please remember that I am not medically trained and the above are my personal views.
Hi David2017
I hope it’s ok to ask a question around the ‘zapping’ of metastases found after the initial diagnosis.
Did you have metastases to begin with and what treatment was given? I’ve not looked at your profile and maybe you’ll direct me there.
I ask because since April 2024, when my husband was diagnosed with PC, the only treatment he has ever had is hormone therapy (Degaralix) every 4 weeks.
At diagnosis his PSA was 20 but the cancer had already metastasized to hip, pelvis, lower spine, femur and liver. He’s Gleason 9. Current PSA is 0.01
The only monitoring of his PC is PSA level. I’m wondering if we should be asking for more and what? This question to the wider community.
thank you
Jenny
Thanks David. To be honest, my mind is jumping ahead and worrying he’s becoming castrate resistant generally. So the idea of it potentially being one or two small isolated spots that we could zap is weirdly reassuring. I know I’m jumping ahead but I’m just panicking. We feel like we just got it down to 0.03, just felt like things were getting under control and now it’s 0.1 and seems to be rising
I don’t think once a year is unreasonable to push for, particularly if you’re pushing for a whole body MRI (which is much cheaper than a PET scan and doesn’t have the radiation concerns). If your husband’s PSA is stable and remains so low, you probably don’t need it but we wanted one for peace of mind and got one last June (six months after diagnosis) xxx
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