Hi everyone,
It's been a long time since we (Pete and Alison) were on here.
Pete was diagnosed 2014 with stage 3 PC. Spread to a couple of nearby lymph nodes but no Mets. He had surgery based on MRIs but when they went in they found it had actually spread outside of the prostate area to bladder neck.
Any way, he had radiotherapy and then hormone therapy for 3 years, he stopped 2 years ago as So far all his PSA readings were undetectable.
Until this one.
We got a phone call from the surgery. The receptionist told us 'there has been a marginal rise in PSA. Please book another test in 6 weeks to compare'.
I think because he'd stopped treatment and had undetectable PSA, this news has shocked us. Although his Gleason score was 9, so we knew the chances of it returning were high.
Just wondered from others what might happen next. Marginal rise in PSA, no symptoms. Would he start hormones again or do they watch and wait?
I have panic disorder as it is, and very worried. We have a 10 year old daughter. My husband is being very calm and stoical at the moment.
Any advice / thoughts very appreciated
All the best to you all on your journeys, we're in it together xx
'Sorrow looks back, worry looks around, but faith looks up' |
User
User
Alison, sorry about the news you both had, although you definitely need to wait for a retest result.
Do you know what the PSA readings are, now and historic?
If there is a rise, it's possible they will do nothing for quite a while, even if PSA is rising and there's an acceptance that treatment will be required, but that doesn't mean there's necessarily any benefit on leaping to treatment quickly at this stage. Most likely, your oncologist will say something like wait until PSA hits 2 or 5 or whatever their preferred figure is, before considering hormone therapy.
I would push for a PSMA PET scan to see if the cancer can be found before restarting hormone therapy, but your PSA is probably too low for much chance of the PSMA PET scan finding anything yet. That might also tie in well with not doing anything for the moment and waiting for PSA to rise higher, when a scan is more likely to work. There is a small chance the PET scan might find something that is treatable with curative intent, and even if it isn't, for me, I'd still like to know where it was.
User
Thank you so much. I tend to jump ahead to all the worst case 'what if?' scenarios...but what you say is sensible and reassuring. Yes, will need to see what the levels are. I guess my worry is, is this the beginning of the end', although rationally I know there must be lots that can still be done. Thank you x
'Sorrow looks back, worry looks around, but faith looks up' |
User
Thank you very much, Arthur.
'Sorrow looks back, worry looks around, but faith looks up' |
User
What was the actual PSA reading? A marginal rise might just be machine noise or a change of lab or the lab equipment has been recalibrated or his normal (healthy) PSA level is settling.
John is 10 years past RP and 8 years past salvage RT. In the last 6 years, his PSA has climbed from undetectable to 0.1 and then 0.11 and now hovers at <0.1 so either there is a recurrence but it is moving extremely slowly OR he just has a quite high level of healthy PSA. My dad has a confirmed recurrence but his PSA is rising so slowly the urologist has calculated that it could be 20 years before he needs treatment!
In your situation, biochemical recurrence is defined as PSA over 0.2 or three successive rises above 0.1. As stated above, even if you have hit the recurrence level, that doesn't necessarily mean that Peter will go back on treatment any time soon - some oncos will wait until the PSA hits 5 or 10 while others will wait until the doubling time is less than 6 months.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you very much, Lynn.
I'm sorry you have two of your key men in your life battling the disease, but very glad that they both seem to be doing well and on the right track.
Your words of reason are very needed, thank you. With my own anxiety disorder I do need to work hard to not let imagination run away with me, and stick to the facts, and I understand prostate ca has lots of good treatments. It's a head v heart thing.
I just don't want to lose him. Thank you for your replies xx
'Sorrow looks back, worry looks around, but faith looks up' |