When to act when to wait anxiety

[SimMartin]

I know this is such a common anxiety issue but it still causes me untild anxiety- after finishing 20 months of ADT last May 2024 of which 17 was post RT for localised G9 (yes I know ! Not optimal but complex reasons-what’s done is done !)

I had from end of RT to end of ADT PSA <0.01 and T around 0.6 (17.3) and <0.5 (14.5) last year.

Post end of ADT 3 months PSA <0.01 T 0.8 (23) - 6 months post ADT PSA <0.01 PSA T 2.8 (80) - 9 months post ADT PSA 0.1 !! and T 16 (461) ! So much for being told my T aged 74 would take 18-2 years to recover and even then maybe not fully. So they were counting on longer suppression and control based on my disability and age ! ! ? ?

I am somewhat clear in my mind that my blood test this week will likely confirm early BCR but my concerns about the jump in PSA last time was the result of the T fueling PCa remaining cells. It is frustrating to constantly be told it isn’t BCR until it reaches +2 from nadir according the phoenix- but my original prostate was small 28cc and I had HIFU (unfortunately as it turned out as Dx G7 then) and I had no BPH so my logic is …. This is very unlikely benign prostate recovery especially as I have a G9.

whats others experience or advice as early action I think is now considered a best option for longer term control rather than dismissing it until it get to 1.

My trust in wait and see hasn’t been a good policy or the advice re when and how much to treat not always been appropriate for my more comolex situation

I may be panicking too early or unnecessarily but I like to be ready for the oncologist refrain —- don’t panic and let’s wait and see it’s more probably benign normal remaining prostate and if not low grade anyway given it didn’t rise earlier anyway !

They MAY be right but they’ve been wrong often with false reassurance it’s become hard to calm my anxiety and feel i have to be my own doctor, and given i did work in the area years ago maybe too much knowledge and maybe too little faith doesn’t help my mental state !

[Miko710]

I'm sorry that you're going through this. I'm 73, Gleason 4+3, some 8. T2A. SBRT, 18 months Eligard, which wrapped up in November 2024. Last PSA was .02. It's been hovering around there since ADT began. Last T was .024 (.035 before that, so sadly still very low), with the optimum range being 8.5 – 29.5 units here in Canada. Starting to recover chest hair, but energy is low, minimal erections. I see my RO on April 28. BCR is the worry for us all. I'll follow your post

[SimMartin in reply to Miko710]

Thanks - I’ll keep posting as and when I know

[Tall_Allen]

I found that psychotherapy and learning to practice mindfulness helped my anxiety.

[SimMartin in reply to Tall_Allen]

yes thanks - I did start psychotherapy a year ago and ‘do my best’ with meditation practice - but maybe as my oncologist said to me once - being a health professional and having a bit too much previous experience makes it harder for some. Ignorance may not be great for us with this disease but the phrase ignorance is bliss sometimes seems attractive!

[Mgtd]

Sim if this is any value to you I had the same issue. My T returned 2 months after last shot. When it came back my PSA came with it. This caused because you still have a prostate.

[SimMartin in reply to Mgtd]

Well good to know I’m not that unusual just a bit disappointing that as my T cane back the PSA jumped from <0.01 to 0.1 in just 12 weeks.

[T911]

I don't know about HIFU but if you had been treated with radiation and ADT your post treatment numbers would be considered very good. Remember you still have live prostate tissue that expressed a PSA of 0.86 before your cancer started growing. Due to my father's very aggressive prostate cancer I had my PSA done every six months for 24 years. It always read between 0.8 and 1.6 before my cancer started growing. I was always told that was just normal numbers. I anticipate a return to that range again.

[SimMartin in reply to T911]

Yes - I do expect SOME PSA it’s more that it juno so fast to .1 as soon as T came back when it was undetectable before when T suppressed

[Mgtd in reply to SimMartin]

Just returned from my MO visit and my PSA fell. She wanted to know what I was doing. No change except increased my exercise. Maybe that would help you too.

[SimMartin in reply to Mgtd]

great news ! Exercise isn’t easy for me as old polio means I’m not so good at walking these these. Had my PSA done yesterday and will check it on my APP before my oncologist appointment next Thursday …. Don’t want to spoil my weekend looking at it before then ! Glad you’re doing well