Dad diagnosed with T3a at 63

Thank you all for your continued support.

We had an initial conversation with the oncologist that left me feeling hopeless but it might be that I didn’t interpret it correctly. I didn’t think it was appropriate that the first thing they asked was why did you decide to go for the operation. They were part of the team that recommended an operation but I remember at the time they were trying to convince us to go for RT. It made me feel like they feel they might have chosen not the best part because the 4+5 Gleason score was missed at biopsy and got upgrade after the operation.

The surgeon was adamant that it’s likely local because of the positive margin but the oncologist mentioned they are doing the PSMA PET scan in case it has spread elsewhere. They haven’t been able to schedule it until the 6th March and I’m really worried it might spread rapidly by then but don’t know how likely this is. I’m hoping a PSA score of 0.12 means it’s likely local and will get resolved with HT and RT. 

I understand that they don’t want to promise anything and probably assume worst case scenario but this is mentally affecting us a lot harder than a year ago. We’ve both decided that we want to attend a session at Maggies and talk to others that are going through the same thing.

So sorry to hear that your dads PSA is rising. He is pretty much following the same path as my husband so we can understand how you are feeling. We went into the operation knowing of spread already to one lymph node so maybe we were expecting the recurrence even more.

As soon as Robs PSA started to rise I was getting his psa tested every 6 weeks so we could keep an eye on how quickly it was doubling.

Its really good that they’re moving on this asap, I would maybe try to put your dad forward for any PSMA pet scan cancellations so hopefully he might get in earlier 🤞🏼keep ringing to check.

Rob had the RT and didn’t have too many problems during treatment. Just had a few issues over Christmas which we’re not sure if treatment related just waiting to hear from oncology.

Don’t despair though, no one wants to be in this position but I think it has to be looked at in a way that curative treatments are still available and no reason why your dad won’t be just fine.

Take care

Elaine

Hi all,

Hope everyone is well. 

We got the good news that the PET scan is clear today. The oncologist started him on hormone treatment the next day after the scan and he’s also on the injections now.

I might have misunderstood but the oncologist said once the PSA falls to 0.1 or 0.01 that they would start RT. Given that the scan didn’t pinpoint the recurrence anywhere, is it possible that the HT could cure it and that he wouldn’t need RT at all? Or do they still do RT around the area as a precautionary measure 

Thanks LynEyre that makes sense. 

Hi all,

Sometimes I can’t believe it’s been almost 2 years since my dad’s original diagnosis. Time really does fly past. He’s just finished 33 sessions of RT on Monday. Mostly didn’t have much symptoms until the second to last week with some bowel issues which is good because I was worried he’d experience a lot of fatigue and other symptoms. Hopefully that will be the end of treatment for a long while. 

Good news that your dad seems to have breezed through the RT. Hopefully he can look forward to ending HT soon and pulling undetectable PSA for many years to come. My bowel symptoms took a while to gradually go away but everything did go back to normal.