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Post RP and SRT journey - Jan 2021 update

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User
Posted 27 Aug 2020 at 10:48
I’ll probably move up to four then six if that goes well
User
Posted 23 Oct 2020 at 21:00
Moved my next test to Jan after talking to the nurse about pre-test blues. I suggested a month delay and she suggested January as a test just before Xmas, well, duh!
User
Posted 23 Oct 2020 at 22:42
Good plan Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Oct 2020 at 22:51

Pete, just spent the past hour or so reading your full thread. Trying to pick up hints and tips as my husband awaits his first session of RT. He will be 14wks post RALP when he begins. PSA was 0.2 post op.

Prior to reading  your thread I spent an age trying to locate his “tattoos” 🧐🧐

Wishing you well.

User
Posted 24 Oct 2020 at 09:51

That seems sensible. 

Ido4

User
Posted 24 Oct 2020 at 15:11

Originally Posted by: Online Community Member

Pete, just spent the past hour or so reading your full thread. Trying to pick up hints and tips as my husband awaits his first session of RT. He will be 14wks post RALP when he begins. PSA was 0.2 post op.

Prior to reading  your thread I spent an age trying to locate his “tattoos” 🧐🧐

Wishing you well.

 

Hi Lexi

Hope it helped. I can be a bit of a drama queen so don't let that worry you :)

My main takeaway from doing all this is as follows:

Make time around the hospital trips to get ready and rest afterwards - it can get tiring

Stick to the restricted diet to allow the bowel to empty easily

Get Sudocrem as the laxatives can make the bum sore

Keep an eye on the emotions - the HT plus the stress of the routine can cause wobbles

Be on the look out for an emotional "drop" once the treatment ends - going from 100 to 0 overnight is unsettling

Stay positive

Expect and work around fatigue but keep exercising

Cheers

P

User
Posted 12 Jan 2021 at 12:37

Feb 2019: 0.07

Jul 2019: 0.05

Nov 2019: 0.09

Feb 2020: 0.09

May 2020: 0.05

August 2020: 0.06

Jan 2021: 0.07

Next check 4 months, new machine coming in with undetectable < 0.025 instead of < 0.04.

Slightly unsettled.

Edited by member 12 Jan 2021 at 12:38  | Reason: Not specified

User
Posted 12 Jan 2021 at 15:05

Good news overall PP. The result is within the range of figures you have had, all less than 0.1 which is great.

Why has the new machine an undetectable of <0.025?

All the best,

Ido4

User
Posted 12 Jan 2021 at 15:18

They are moving to a more accurate machine. No idea why if numbers less than 0.1 are more unreliable.

User
Posted 12 Jan 2021 at 15:22
Presumably, the equipment can undertake more than one kind of test - perhaps the increased sensitivity is important to other departments as well as urology?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jan 2021 at 15:23
I know it’s less than 0.1 but I hate rises and trends
User
Posted 12 Jan 2021 at 15:33

Makes sense. Having one machine for each blood test is expensive.

 What are your thoughts on my latest numbers?

User
Posted 12 Jan 2021 at 16:42

Pete 

My 11 week post SRT test was 0.08, it went down to 0.05 and within two years was 0.22, so yours looks pretty good to me. 

Wonder if the new machine is a requirement of the new trial.

Thanks Chris

 

 

 

User
Posted 12 Jan 2021 at 17:34
Cheers Chris

That is a reassurance to captain worry.

At what point or PSA level did they start saying “we’ve got a problem here” for you?

User
Posted 12 Jan 2021 at 17:48

Pete 

Post surgery 0.1 was the trigger for "we need to keep a close eye on you". 0.2 post surgery was the trigger for "we need to take action."

Post SRT 0.2 was the trigger for "you have a biochemical recurrence".My onco nurse has said tracer type scan at possibly 1. Oncologist has said 2,4 or even 8.

Once it gets to one I will be asking for a definitive plan.

Thanks Chris

 

 

 

User
Posted 12 Jan 2021 at 17:58

My wonderful nurse was relaxed and said “yeah, five or six months for review but I know you get stressed so what about four” which I agreed to. I guess the only one fretting about my numbers is me 🙄😂

I just worked out this new result is actually a gnats arse over the average of all seven post srt results so that is better. I just didn’t like three in a row.

Thanks again for your input. I hope your numbers stay low.

User
Posted 12 Jan 2021 at 18:21
Chris

No idea about new machines for trials. What is afoot?

User
Posted 12 Jan 2021 at 18:32

Originally Posted by: Online Community Member

Feb 2019: 0.07

...

Feb 2020: 0.09

...

Jan 2021: 0.07

Well I'm a glass half full type of person, and I would look at these numbers and say, yo!! my PSA is 20% lower than it was this time last year and no higher than it was two years ago. 

Dave

User
Posted 12 Jan 2021 at 18:50

Pete 

There is a vaccine trial just starting with the aim of preventing the cancer going metastatic.

Thanks Chris

 

 

User
Posted 12 Jan 2021 at 19:24
Please don’t take this the wrong way but it seems unsettling that you are stressing so badly over numbers this minuscule. These numbers are saying you are cured if there is ever a cure. Certainly not worth wasting mental effort on Pete. You have years and years ahead. But that’s the nature of the disease isn’t it. Even with numbers like this it is eating away at you. Dr Chris J has very high hopes for you so try to go with it

Best Regards

If life gives you lemons , then make lemonade

 
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