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User
Posted 09 Nov 2019 at 16:25

So, just plucked up enough courage to look at my latest PSA results and predictably I have plunged into a state of depression!  Up from 0.04 approx a year ago to 0.08. Surgery four years ago, with a six week post op PSA of 0.01.  Can anyone give me any much needed words to lift me I am so low now(a kidney function of 9% only adds to my woes). Can't face six weeks of daily motorway commute to recieve R.T.........Thanks in advance   Andy

User
Posted 10 Nov 2019 at 10:51

Really sorry to hear this Andy. On the plus side the PSA is still very low even if it is evidence of recurrence. This is definitely something to hang on to as curative treatment is still a possibility albeit with RT.

On the commute thing, I had my treatment at Clatterbridge on the Wirral and this was done in 20 sessions. It was a 70 mile return trip mostly on the motorway and it was doable for me as most of my sessions, being retired, were out of the rush hours. Towards the end I was getting a bit tired so I pulled off at Chester services for a quick Costa and a 10 minute nap which did the job.

User
Posted 10 Nov 2019 at 10:58
My friend had his psa rise slowly from 0.05 after surgery. He prefers QOL like me at the moment and is 4 1/2 yrs on. His psa reached 0.14 and has stayed steady for 18 months. Your reading is basically undetectable still and many areas won’t start RT till you reach 0.2. I would question seriously whether you need it yet
User
Posted 10 Nov 2019 at 12:03

Originally Posted by: Online Community Member
Cancer had JUST escaped capsule.
Sounds like T3a.

If it's one errant result, you really need to get it repeated in a few weeks before you allow yourself to worry. A single PSA result is never conclusive, as so many non-cancer factors can affect it. Probably more so in your case!

Hang in there!

Edited by member 10 Nov 2019 at 12:05  | Reason: Typo

User
Posted 10 Nov 2019 at 12:21

Thank you for being so positive Chris, very much appreciated,( maybe I’ll get out of bed now) . Feeling sorry for myself won’t help, I know.  

User
Posted 10 Nov 2019 at 17:07
I don’t know but it is worth asking your doctors these questions.

To be honest, a rise from 0.04 to 0.08 in a year could be the result of new testing equipment, a change of laboratory or the recalibration of existing equipment. Also, with a rise from 0.01 to 0.08 over 4 years, even if it is a recurrence it is a very small cluster of cells and not very active; it has taken my dad 19 years to get to 0.3 and the urologist predicts it will be another 25 years before it kills him.

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

User
Posted 10 Nov 2019 at 17:52
Hi Andy

are you on dialysis yet at 9%? Tony is hovering between 8 and 9 and has been told he will probably go on it at 7%. Tony is starting RT in Dec as his cancer has recurred but that was after about 12 years, had chemo all over last xmas from oct last year to may

this year, it wil be an almost 100 mile round trip for the RT. I have never heard that you can get a false reading from having ckd but have never asked that question so do not know. You psa is still really low and as others have said is still classed as undetectable so if I was you I would try not to worry. It is hard when you have kidney disease so really feel for you.

regards barbara

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User
Posted 10 Nov 2019 at 10:51

Really sorry to hear this Andy. On the plus side the PSA is still very low even if it is evidence of recurrence. This is definitely something to hang on to as curative treatment is still a possibility albeit with RT.

On the commute thing, I had my treatment at Clatterbridge on the Wirral and this was done in 20 sessions. It was a 70 mile return trip mostly on the motorway and it was doable for me as most of my sessions, being retired, were out of the rush hours. Towards the end I was getting a bit tired so I pulled off at Chester services for a quick Costa and a 10 minute nap which did the job.

User
Posted 10 Nov 2019 at 10:55
Andy you don't say what your staging and Gleason was??

User
Posted 10 Nov 2019 at 10:58
My friend had his psa rise slowly from 0.05 after surgery. He prefers QOL like me at the moment and is 4 1/2 yrs on. His psa reached 0.14 and has stayed steady for 18 months. Your reading is basically undetectable still and many areas won’t start RT till you reach 0.2. I would question seriously whether you need it yet
User
Posted 10 Nov 2019 at 11:39

Thanks Chris, please excuse my ignorance but what is QOL? Is it  watchful waiting ? I’m probably over reacting but it’s all getting me really very down. What with my kidneys situation and all. ( dialysis very soon I believe) I’ve been in bed since I checked my results yesterday afternoon and don’t have the desire to do anything. 

User
Posted 10 Nov 2019 at 11:43

Gleason 4+3 , cancer had JUST escaped capsule. I’ve forgotten the correct terminology ( maybe t3(a))?

User
Posted 10 Nov 2019 at 12:03

Originally Posted by: Online Community Member
Cancer had JUST escaped capsule.
Sounds like T3a.

If it's one errant result, you really need to get it repeated in a few weeks before you allow yourself to worry. A single PSA result is never conclusive, as so many non-cancer factors can affect it. Probably more so in your case!

Hang in there!

Edited by member 10 Nov 2019 at 12:05  | Reason: Typo

User
Posted 10 Nov 2019 at 12:08
Quality of life Andy. People think I’m a bit nuts but I’m 4 1/2 yrs post surgery and so far have refused any treatment as was told it wouldn’t be curative because I had lymph node involvement. I totally recovered from surgery so decided enough was enough whilst I felt fine. To put things in perspective my psa is now over 200. I have had CT and Bone scans every 6 months with no indication of spread. Also 2 PET scans. I know it will all go ti**t’s up but I decided on my way to deal with it. So sorry to hear you have kidney involvement too. You just have to keep trying to go on ! I was retired but got a job as a school caretaker which takes my mind off all. Also I took up paint by numbers which is my first true hobby.

Best wishes ok , it sounds like your cancer is the last of your problems at the moment and is still technically just a few stray cells in the prostate area which could be curable but doesn’t seem urgent yet .......

User
Posted 10 Nov 2019 at 12:21

Thank you for being so positive Chris, very much appreciated,( maybe I’ll get out of bed now) . Feeling sorry for myself won’t help, I know.  

User
Posted 10 Nov 2019 at 13:51
It is still below the NICE threshold for 'detectable' which is officially 0.2 and you have not yet reached biochemical recurrence which is:

> 0.2 or

3 successive rises over 0.1

Did anyone point out that kidney problems may raise your PSA slightly?

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

User
Posted 10 Nov 2019 at 14:04

No they haven’t mentioned that . I will ask consultant next week when  I see her. Do you know the reason ? Is it due simply to electrolyte imbalances?

User
Posted 10 Nov 2019 at 16:20
I'm not sure - perhaps just because people with kidney disease are more likely to have frequent or chronic UTIs?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Nov 2019 at 16:50

Sorry to bother you again Lyn , you got me thinking about possible alternative reasons for my increase . In the summer I had a lupus flare up which caused my crp ( inflammation marker) to rise dramatically do think this could have influenced my PSA rise at all?  Thanks Andy.

User
Posted 10 Nov 2019 at 17:07
I don’t know but it is worth asking your doctors these questions.

To be honest, a rise from 0.04 to 0.08 in a year could be the result of new testing equipment, a change of laboratory or the recalibration of existing equipment. Also, with a rise from 0.01 to 0.08 over 4 years, even if it is a recurrence it is a very small cluster of cells and not very active; it has taken my dad 19 years to get to 0.3 and the urologist predicts it will be another 25 years before it kills him.

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

User
Posted 10 Nov 2019 at 17:52
Hi Andy

are you on dialysis yet at 9%? Tony is hovering between 8 and 9 and has been told he will probably go on it at 7%. Tony is starting RT in Dec as his cancer has recurred but that was after about 12 years, had chemo all over last xmas from oct last year to may

this year, it wil be an almost 100 mile round trip for the RT. I have never heard that you can get a false reading from having ckd but have never asked that question so do not know. You psa is still really low and as others have said is still classed as undetectable so if I was you I would try not to worry. It is hard when you have kidney disease so really feel for you.

regards barbara

User
Posted 10 Nov 2019 at 18:12
I don't think it is a case of false PSA readings, just that it might raise the PSA slightly?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Nov 2019 at 19:37

Hi, yes my egfr is bouncing around between 10/9 so neph said will start p.d. around 8. The thought of which also terrifies me. Also they are currently deciding whether or not i'm allowed on the transplant list, as the immune suppressant drugs would allow my cancer to flourish.(apparently)

User
Posted 11 Nov 2019 at 11:36
Hi Andy

Tony is terrified as well, he has had a fistula done in his arm ready for it. He has been told that he can't have a transplant as he has active cancer and the anti rejection drugs would cause it to grow but he is in the incurable camp. Lyn sorry misread your post but did not no that, also when Tony was on chemo he was told some of his kidney results could be higher or lower while he was on it, double edged sword really juggling between treatments.

onwards and upwards lol.

regards barbara

 
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