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User
Posted 29 Jul 2021 at 14:25
Keep the faith and get some beer in him ….
Best wishes

If life gives you lemons , then make lemonade
User
Posted 29 Jul 2021 at 17:21

As GoalHanger says the PSA rise has slowed down. You probably don't realise how good that result is. When he was on HT and had no testosterone his PSA was artificially low, and when he came off HT and testosterone recovered then his PSA should return to it's "normal level". Now no body knows what "normal level" is for David, because all the time you have been aware of his PSA he has either had cancer or been on treatment for it.


Oncologists consider under 2.1 to be normal for someone who has had RT. If you plotted David's psa against time during and since treatment you would see a low flat line whilst on HT followed by a steep rise about a year after finishing HT and most importantly now signs of it levelling out at a "new normal level" which looks to be about 1.2. 


I know I am always optimistic and who knows what might happen, but if my PSA behaves like David's in the next couple of years (I'm about two years behind him) I will be very happy. So get down that pub and celebrate a levelling out of the PSA at a number well below what an oncologist would consider troublesome.


 

Edited by member 29 Jul 2021 at 20:02  | Reason: Not specified

Dave

User
Posted 15 Nov 2021 at 17:41

It’s that time again. David had his PSA on Friday and its come back at 2.3 the third rise in a row. As his PSA was only 8.8 at diagnosis the urologist is suggesting PET PSMA scans, not what we wanted to hear, he’s already been advised he can’t have HT due to his recent heart attack, and the urologist was reluctance to offer treatments in his last letter if the PSA went the wrong way. Having a low PSA at diagnosis with a high Gleason evidently needs monitoring closely.  He was due to have a t/c consultation tomorrow but this has been cancelled and rearranged in January. I’ve since spoken to the urologist’s secretary and sent an email to be passed on to him. ( this is Wales we can’t email the consultant directly, we might make a spelling mistake, or something heinous) so hopefully he can discuss the situation quite soon.  
This is not what he’d hoped for, but with a Gleason 9T3b has he just been lucky so far. Lots of colourful expletives come to mind but I’ll spare you, and leave it to your imagination. So we wait to hear from the urologist and try and keep positive.


Such a pain David is a very young 71, has lots of living to do and we are not ready to get old yet!! Such a bl**@y pain. 


Comments and advice, welcome.


Leila 


 


 


 


 


 


 


 


 


 


 


 

User
Posted 16 Nov 2021 at 08:48

Sorry to hear David’s PSA has gone up again . Let’s hope it doesn’t go up anymore as it’s only just above the 2.1 they say is ‘normal’…


January is a long wait for his next consultation and I’d keep trying to bring it forward. Hope they will have some options ready then in case David’s PSA does rise again.


Thinking of you both .


Phil


 

User
Posted 16 Nov 2021 at 10:25
Thanks Phil,
Our concern is, if it has returned David can’t have hormone treatment because of his recent heart attack. I see from you profile the HT seems to have reduced your PSA quite a bit,that’s good to read.
Hopefully he’ll get a call from the urologist after the email was sent off yesterday. David has been doing so well, he’s a stressy type who has found the last couple of years hard going, then who hasn’t. This last bit of news hasn’t done him any good.
Hope you are managing ok these days.
Thanks again for your support.
Leila
User
Posted 16 Nov 2021 at 12:14

I didn’t know that heart problems restricted use of HT. Thats quite a blow and I understand your worries. Hopefully you’ll get into see the consultant before Christmas  and they’ll have some plan to move forward.


I must say the Zoladex is doing it’s job . Feels very different to the Prostap. I think more physical side effects but not so bad on my mind, so I’m grateful for that.


Take care


Phil

User
Posted 16 Nov 2021 at 17:04

Sorry to hear about the PSA rise Leila, I think this has definitely turned it from a just returning to normal, into something which needs watching. I hope that next PSA isn't too far above this one. If HT isn't available I have no idea where to go next.

Dave

User
Posted 16 Nov 2021 at 17:17
It may be a case of 'do no harm' ... while the PSA is still low it isn't going to kill him whereas heart problems might. Possibly, when the PSA gets much higher, it tips over the other way and the HT will be introduced because the benefit / risk analysis is clearer.

Trevor Boothe had serious heart problems including two heart attacks while on HT but they never stopped prescribing it. Steve has also had HT after a heart attack.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Nov 2021 at 18:19

Awaiting a call from the consultant, who is a real belt &` braces character. David's heart attack wasn't the worst, he only had one stent, and was told the other ' blockage' wasn't pivotal to his wellbeing. After a discussion with the consultant we will have a better idea.I just wish the cardiac team and and the other lot would converse a bit better. What we want to get discussed is the effect of the heart meds on his prostate etc, but this seems to be a bridge too far at the moment. Hey ho. 


Thanks for the replies.


Leila 


 

User
Posted 27 Nov 2021 at 12:57

So, David saw the urologist and he recommended a PSMA pet scan as the PSA has gone up to 2.3. David then receives a letter from the urologist apologising, and informing David he had been told David has to have a CT scan and an MRI scan before a PSMA pet scan will be considered. It seems the urologist has been overridden. I know his PSA is still low, but it was low at diagnosis which is the concern.
Now trying to get a quick discussion with the urologist to ascertain what’s the best move, cut to the chase and pay for a PSMA thingy, have the CT and MRI scan offered and see what happens. CT scan next week, MRI mid December.
Getting to discuss options with the urologist is not easy.
This is a pain, he’s recovered well from the heart attack, feels well and he has a lot of living to do. What he doesn’t want is a second rate service due to budgetary restraints or consultants pulling rank.


David hates hospitals with a vengeance and situations like this leave him running for the hills.
I’m trying to logically assess the best way forward as its my role.


Suggestions welcome.


Leila.

Edited by member 27 Nov 2021 at 16:31  | Reason: Not specified

User
Posted 27 Nov 2021 at 13:54

Hi Leila,


You are not having to wait too long for the MRI and CT scan, if you start pushing for a PSMA scan you may delay these two useful scans, and as many people have posted on this site a PSMA scan can be cancelled several times due to problems with the tracer. So I would go with the flow, and once those two scans are done start pushing for the PSMA.


I can see that this is a lot more hospital visits than David would like. Maybe you should offer him a treat every time he goes to hospital. I'm told a trip to Peppa pig world is very good🐷.

Dave

User
Posted 27 Nov 2021 at 14:05

Dave, you’ve made my day! Peppa Pig World it is then. 

We have been chatting and decided to try and talk to the urologist  calling his secretary Monday morning. 


What we want to know is will having both scans and the PSMA scan over load  him with radio waves. I don’t want a glow in the dark husband. 😉


Leila 

Edited by member 27 Nov 2021 at 15:17  | Reason: Not specified

User
Posted 27 Nov 2021 at 16:41
I am with Dave & the urologist here - go with the MRI and CT scan and then push for PSMA - the data from all three is much more reliable than the data from just one of them as we have seen with other men on here.

I think the risk from the prostate cancer is greater than the risk from the scans, and more short to medium term!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Dec 2021 at 14:58

Tomorrow is the third scan, David’s has had a CT,MRI and tomorrow he’s having an radioistropic scan. He seems to have recovered well from his heart attack in July, and been signed off. I hope one day the different medical teams will talk to each other, this doesn’t seem to happen now, sadly. His last PSA was 2.3, we hope to see the urologist in January to discuss the outcomes of his three scans. Fingers crossed for a good outcome and the appointment not being cancelled again. 

We have been doing all our usual stuff, David feels well, and we are planning a small but good Christmas with a few celebrations. 
We have been part of this group for over five years, a group that given us smiles tears, support, good advice and clear information.


So, may we wish you all a Merry Christmas and a Happy New Year, and a heathly, 2022 to  each one of us.


Thanks for being there all of you.


Leila x


 


 

User
Posted 20 Dec 2021 at 11:01

Hi Leila. 
Hope the scan went ok yesterday, and you get to see/hear from your consultant. I always felt my consultant was on top of things and knew all that was happening. I wonder if some hospitals are not so good at communicating internally amongst their own staff as others.
Good news David had recovered well from the heart attack. A weight off your minds.


Wish you and David a Merry Christmas and a Happy New Year. Let’s hope 2022 is a better year for everyone.


Phil

User
Posted 20 Dec 2021 at 14:45
And a happy, sociable and safe Christmas to you Leila
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Dec 2021 at 21:36

Hi Phil,


I was a day in front with my post, we were at the hospital today. Just got home, the hospital with this scanner is over an hour and a half away in Pembrokeshire. All done, and a letter posted to the consultant suggesting an appointment in January. We’ve done all we can do for now, just enjoy our  Christmas. 
While he was being scanned I secretly bought a cheeky bottle of champagne 🍾 


Hope you and yours have a good Christmas and New Year, thanks for your support Phil, it makes a difference.


Leila x


 


 

User
Posted 20 Dec 2021 at 21:41

Thanks Lyn, We are planning a pleasant sociable safe Christmas, leaving all the scan stuff till next year.


I hope you and yours have a Safe Sociable and Happy Christmas.


Thanks for holding us together, your advice, common sense, and practical approach amongst all the emotional angst that can sometimes swamp us is invaluable. 


oh, I forgot the blessed humour and dry wit. 


Leila 


 

User
Posted 20 Dec 2021 at 21:50
🤣🤣🤣

I don't think there are many head teachers or local authorities who would describe me as humorous right now - rough time for anyone who isn't doing their absolute best to protect children :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Dec 2021 at 22:00

I’m sure you are the right gal for the job. I’m not practicing these days or having to make such decisions. I’m doing some supervision and other bits…. It’s hard times Lyn, keep doing the right thing.
Leila


 

Edited by member 20 Dec 2021 at 22:01  | Reason: Not specified

User
Posted 20 Dec 2021 at 22:13

Always gotta do your best for the kids , I should know . Respect for your work 👏

User
Posted 21 Dec 2021 at 01:13

Quite, and we always will


Leila x


 

User
Posted 21 Dec 2021 at 10:35

Originally Posted by: Online Community Member


I’m sure you are the right gal for the job. I’m not practicing these days or having to make such decisions. I’m doing some supervision and other bits…. It’s hard times Lyn, keep doing the right thing.
Leila


 



If you ever fancy taking on a bit more, we should talk - I have a waiting list of supervisees! 

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