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My husbands recent diagnosis of advanced prostate cancer

User
Posted 22 Mar 2023 at 15:49

Originally Posted by: Online Community Member

Elaine, any rise no matter how small is always unwelcome. It took me three years to get from 0.03 post op to 0.23. I kept being told it could level off at 0.1, sadly it didn't, my surgeon did say he had many patients at 0.1.

Good look for next test.

Thanks Chris 

 

 

Thanks Chris. It’s difficult to know how long to give it to see if it will level off. Rob’s surgeon originally said 0.3 for a PSMA pet scan but after this test he’s said it would be good to start discussions on the pro’s and cons of radiotherapy and when. It could maybe be with it being a fairly significant rise in just 6 weeks.

 

User
Posted 22 Mar 2023 at 15:51

Also if anyone has any recommendations of good oncologists at Christie’s Manchester could you please private message me. 

Thank you x

User
Posted 22 Mar 2023 at 17:28

Originally Posted by: Online Community Member

It’s difficult to know how long to give it to see if it will level off. Rob’s surgeon originally said 0.3 for a PSMA pet scan but after this test he’s said it would be good to start discussions on the pro’s and cons of radiotherapy and when. It could maybe be with it being a fairly significant rise in just 6 weeks.

Hi Elaine,
How long to wait to see if it levels off is a good question.   From what I've read if your psa rises fairly quickly after surgery it's better not to wait too long.  On the other hand reaching a point where a PSMA scan is useful is also regarded as better.  My hospital said it would be 0.5 before they'd put me in for a scan.  Although the nurse said  some patients have private scans before then.

From what I've read and watched on video a case like your OH should be reading about intense treatment; RT, with HT and chemo in parallel for quite a while.   I noticed your onco said pros and cons of RT, for me the cons will be what I have to tolerate and not a reason to avoid.  When the time comes we'll see.

I've found this is a hilly track.  My psa shot up then went down and then crept up taking a year to pass its previous peak so you can't be certain from individual readings.  So good luck, I wish I was at Christies as they have all the gear and reputation although Preston is pretty good except it hasn't a psma scanner so uses Liverpool's.

 

User
Posted 22 Mar 2023 at 18:42

Originally Posted by: Online Community Member

Hi Elaine,
How long to wait to see if it levels off is a good question.   From what I've read if your psa rises fairly quickly after surgery it's better not to wait too long.  On the other hand reaching a point where a PSMA scan is useful is also regarded as better.  My hospital said it would be 0.5 before they'd put me in for a scan.  Although the nurse said  some patients have private scans before then.

From what I've read and watched on video a case like your OH should be reading about intense treatment; RT, with HT and chemo in parallel for quite a while.   I noticed your onco said pros and cons of RT, for me the cons will be what I have to tolerate and not a reason to avoid.  When the time comes we'll see.

I've found this is a hilly track.  My psa shot up then went down and then crept up taking a year to pass its previous peak so you can't be certain from individual readings.  So good luck, I wish I was at Christies as they have all the gear and reputation although Preston is pretty good except it hasn't a psma scanner so uses Liverpool's.

 

Thanks Peter. Yes I think I’ll be reluctant to wait too long. Having a retest in 6 weeks and then appointment with local urology and then will make appointment to see surgeon and gather some opinions. I’m guessing we wouldn’t get a PSMA on the NHS with low numbers so may just have to pay again. 

It must have been a shock to go above undetectable after 5 years, it looks like it’s pretty slow and steady though so hopefully all will be ok for you.

Do you go to clatterbridge for your scans?? I hear good things about them too. We’re lucky to have Christie’s close, although I hoped we’d never have to see the inside of it. 

User
Posted 08 May 2023 at 22:30

Latest PSA 0.115 😥 quite a significant rise in just 6 weeks. Is there any hope that this isn’t cancer 🤷🏻‍♀️ I obviously don’t think so but  worth an ask! I’m assuming with the quick doubling time and increased momentum this is likely to be mets rather than prostate bed left over cells?

We have a local appointment this week and then London next week with surgeon so will see what opinions and information we get then.

Really not what we wanted but just need to re group and get some plans in place, hopefully that will help.

Hope everyone is doing ok 👍 

User
Posted 08 May 2023 at 23:04

Lots off things can cause a rise in psa stay positive could be anything 👍

User
Posted 08 May 2023 at 23:15

Originally Posted by: Online Community Member

Lots off things can cause a rise in psa stay positive could be anything 👍

Thanks Gaz. It’s 3 consecutive rises now and the latest was a bit of a leap….I could kick myself for booking an afternoon blood test though when I never usually do. Will see what happens the next couple of weeks anyway and next PSA I’ll book 5 weeks from now. 

Hope all going well with you x

User
Posted 08 May 2023 at 23:19

Yes ok thanks Elaine  I give a lift to a guy who's psa keeps fluctuating found out he had bladder infection  stay positive 👍

User
Posted 08 May 2023 at 23:44

Elaine, I was hoping my sudden rise could be an oddity but unfortunately or fortunately we have found the reason.

I took two years for my PSA to go from 0.03 to 0.15, my salvage RT reduced the PSA but not completely. It looks like I had cancer cells in the prostate bed and already outside of the prostate bed. 

There has been alot of advice about getting a PSMA scan before SRT but also articles that suggest in certain circumstances SRT before 0.25 can be beneficial.

Hope you get some answers with your next appointments.

Thanks Chris 

User
Posted 08 May 2023 at 23:49

Originally Posted by: Online Community Member

Latest PSA 0.115 😥 quite a significant rise in just 6 weeks. Is there any hope that this isn’t cancer 🤷🏻‍♀️ I obviously don’t think so but  worth an ask! I’m assuming with the quick doubling time and increased momentum this is likely to be mets rather than prostate bed left over cells?

We have a local appointment this week and then London next week with surgeon so will see what opinions and information we get then.

Really not what we wanted but just need to re group and get some plans in place, hopefully that will help.

Hope everyone is doing ok 👍 

 

Actually, that rise is fairly consistent with the previous one - your OH's doubling time is around 4 weeks. It could be cells left in the prostate bed but they usually show up as a slow, steady rise rather than rapid like this so yes, I suspect that more scans will be ordered and a careful look at that original suspected met plus the wider lymphatic system. Disappointing but you gave it your best shot.  

Edited by member 09 May 2023 at 08:51  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 May 2023 at 00:10
Probably need to be seeing an oncologist now rather than a surgeon.

An early scan would be great to rule out distant spread, you should then have the option for salvage RT asap.

User
Posted 09 May 2023 at 06:40

Sorry to read this, Elaine. Hopefully, everything gets found and sorted.

 

Ivan

User
Posted 09 May 2023 at 11:24

Heart out to you both Elaine.. Fingers crossed that you have answers and strategy as soon as.

 

Jamie

User
Posted 09 May 2023 at 11:49

Originally Posted by: Online Community Member

Elaine, I was hoping my sudden rise could be an oddity but unfortunately or fortunately we have found the reason.

I took two years for my PSA to go from 0.03 to 0.15, my salvage RT reduced the PSA but not completely. It looks like I had cancer cells in the prostate bed and already outside of the prostate bed. 

There has been alot of advice about getting a PSMA scan before SRT but also articles that suggest in certain circumstances SRT before 0.25 can be beneficial.

Hope you get some answers with your next appointments.

Thanks Chris 

Thanks Chris.

I think we’d be silly to go ahead with RT without a PSMA pet scan to be honest, especially knowing it was in his lymphatic system and with the first opinion suspecting a bone met initially. I emailed consultant though and he said no to scan at the moment, will speak to him properly next week. He did say initially probably 0.3 to scan but at this rate we’ll be there before we know it and it does worry me we’ll wait to long 😥 x

User
Posted 09 May 2023 at 12:06

Originally Posted by: Online Community Member

Actually, that rise is fairly consistent with the previous one - your OH's doubling time is around 4 weeks. It could be cells left in the prostate bed but they usually show up as a slow, steady rise rather than rapid like this so yes, I suspect that more scans will be ordered and a careful look at that original suspected met plus the wider lymphatic system. Disappointing but you gave it your best shot.  

His lastest 3 PSA results were 0.029, 0.044 and now 0.115.  These have all been every 6 weeks so the latest one seems to have jumped quite a bit more.  

Hopefully we can get scans sooner rather than later and find out what is going on.  Will see what happens but like you say we did give it the best shot and still wouldn’t change our choices.  And certainly not defeated we’ll crack on and hopefully get him sorted 👍 x

User
Posted 09 May 2023 at 12:15

Originally Posted by: Online Community Member
Probably need to be seeing an oncologist now rather than a surgeon.
An early scan would be great to rule out distant spread, you should then have the option for salvage RT asap.

I suspect we’ll get referred at the appointment this week.  We’ll need to rule out the original suspected bone met but that came back negative on the initial PSMA pet scan 🤷🏻‍♀️. I was going to book a scan before next week’s appointment in London but he’s said no for now.  Will get 2 different opinions over the next week and hopefully a quick referral to oncology for another one 👍 x

User
Posted 09 May 2023 at 12:18

Originally Posted by: Online Community Member

Sorry to read this, Elaine. Hopefully, everything gets found and sorted.

 

Ivan

 

Thanks Ivan.

We always knew it was a long shot to stay in remission for any significant time, but he’s had a good 18 months of hope and positivity which he would never have had had he not gone for the op….so no regrets just onwards and upwards 👍 It’ll be all the waiting again that will drive me mad 🤦🏻‍♀️😥 

Hope all still really good with you x

User
Posted 09 May 2023 at 12:20

Originally Posted by: Online Community Member

Heart out to you both Elaine.. Fingers crossed that you have answers and strategy as soon as.

 

Jamie

 

Thanks Jamie.  Let’s hope so, will be better when we know what’s going on…I hope 🤦🏻‍♀️

Hope you’re doing well x

 
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