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Anxiety

User
Posted 10 Apr 2017 at 21:55

I think you are under the same Mr P as most of my family and if you have read any of my old stuff you will know that in my opinion he is the best thing since sliced bread but can tend towards a tad over optimistic :-/ With a positive margin the likelihood of recurrence is higher (though not as high as with PNI) so important to monitor PSA closely

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

User
Posted 10 Apr 2017 at 22:00

PS did anyone explain to him that shoulder pain is very common after LRP? Most popular surgeon / nurse explanation reported on here is that it is a result of being tipped head down for a few hours.

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

User
Posted 11 Apr 2017 at 06:54

No, no-one explained about shoulder pain post op. He was too stressed out about other things I think. The shoulder pain precedes the op so I think probably another cause although it could of course have been made worse by the procedure. Thanks for the heads up.
Julie

User
Posted 11 Apr 2017 at 07:13

Julie, I've been treated by a psych for years. I tend to feel anxiety, fears etc etc. I couldn't do without my treatment. It helps me deal with issues and not get out of my mind when I come into problems. I hope the pshy will help -I assume he has accepted taht help-?

Best wishes, great wife!

Lola.

User
Posted 11 Apr 2017 at 16:23

Julie, 

I'm not sure anxiety or anxious describes how I felt or feel, but the whole issue does "cast a shadow" over ones life. For me the shadow isn't as strong 2 years down the track, but it is still there.

On a positive note, I genuinely feel that the psychological impact has been quite cathartic. I now know what is really important to me, I'm far less judgmental and I think it has bizarrely made me a much happier and hopefully better person. 

Pablo

User
Posted 11 Apr 2017 at 21:54
Hi Julie,

Here are my suggestions

1. Ask your surgeon to explain the pathology results to you both. If, as it appears, they consider the cancer to be contained in the prostate, and the surgical margins clear, there's a good chance that they have effected a cure. Ask the surgeon to explain what surgical margins means.

2. Ask your surgeon to explain what will happen if you get a PSA rise at any point. Ask him what this actually means if there is a PSA rise. Does this mean that OH has an incurable cancer (it doesn't). Ask him to explain salvage radiotherapy.

3. Ask your surgeon what would happen if SRT fails. What next? Ask him to explain hormone therapy.

I'd like to add more questions, but I don't know what comes next!

My father was diagnosed with local spread to seminal vesicles in 2001 age 61. He's 76, and well.

My OH had surgery age 60 in 2014, and salvage RT this year. We're still expecting a cure.

It's a very overwhelming disease in the early days. You either read everything and want to move quickly (me) or read nothing and agree with everything the doc says (OH). Your husband obviously requires information and reassurance.

User
Posted 05 Oct 2017 at 21:31

Update.
PSA has been measured a further 3 times since last post with readings of
0.004, yay still going down
0.005, OMG it's going up, panic
<0.003, happy days or at least it should be but instead this result is obviously wrong and really it is still rising.
So on the cancer front all is good and it is looking very promising that the cancer has had it's butt kicked out of the park.
On the anxiety front we have had several steps forward and several steps back again. We will keep battling this one.
All the best everyone.
Julie

User
Posted 13 Oct 2017 at 22:14
Hi Wife,

Those are low results. I'd think a variation of 1 or 2 could be noise in the system or just body reactions. I was anxious but re-assured pre-op when the surgeon's assistant said how successful their team had been over 5 years. There are thousands of PCa operations every year and your case sounds a low risk one.

Regards

Peter

User
Posted 13 Oct 2017 at 22:41

The variation is so minute that blood could be taken for PSA test 3 times in any one day and give these results. Some hospitals have dropped testing to a further decimal place because results are unreliable and only cause unnecessary concern to patients who think such small differences are significant.

Barry
User
Posted 28 Jan 2018 at 16:19
So one year on from surgery and the latest PSA result <0.003

Happy days. Consultant very happy and suggested going to 6 monthly check ups. Don't think we'll get to that just yet. Hubby has only just managed to stretch it to the full 3 months before anxiety gets the better of him.

So prostate cancer treatment a total success. Anxiety still as bad as ever.

User
Posted 28 Jan 2018 at 17:22

Well done, great news.

I do understand your husband not wanting to extend the PSA to 6 months.

I would prefer for John to continue on 6 months but it has been extended to a year and since it doesn't seem to fret him, who am I to worry (ha!)

Congratulations

Time to celebrate

We can't control the winds - but we can adjust our sails
User
Posted 09 Aug 2018 at 08:09
So after 4 readings of <0.003 on the super sensitive test we got a 0.004. Due to the inherent error in these tests there is a very good chance that this reading is also exactly the same as the previous <0.003 readings and is not an indicator of anything more sinister. Unfortunately due to husbands health anxiety this is the worst possible outcome and in his mind can only mean that the cancer has come back. Just when we were starting to get life back on track, he went back to work 3 weeks ago, we are supposed to be going on holiday next week and now everything has come crashing back down around our ears.**?/%$*

Nothing more to say really, I know all the data on test error for the array being used, I know that some people don't use the super sensitive tests any-more, I know that they can cause unnecessary anxiety, etc. etc. However we are where we are, as the super-sensitive test was used for the first PSA readings after his op we are kind of stuck with it due to the aforementioned anxiety.

Appointment booked to see Mr P tonight, he is going to say don't worry, this is not a significant result, Mr C is going to ignore all of this and try and discuss treatment options, we will go round and round in circles. A retest next week might be an option and just pray that it comes in again at <0.003

User
Posted 09 Aug 2018 at 08:54
Sorry to see this Ellie, I hope Mr P is emphatic enough for your OH to get back to stable ground. I suspect you need that holiday.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Aug 2018 at 09:15
I met with one of Britain’s leading Professors of Urology on Tuesday and asked his opinion of super PSA testing to the nth degree - 0.00? He said he doesn’t regard it very highly as it is too hyper-sensitive and prone to “noise”.

Therefore, I am thrilled to bits with my two successive “primitive” readings of <0.1 = ‘undetectable’ post-prostatectomy, which is as accurate as it gets round here.

As Matron occasionally points out, post-orgasmic ladies and lactating females can have PSA levels measurable on these super-sensitive assays.

User
Posted 10 Aug 2018 at 07:12

Unlike Bolinge and Lynn I am a fan supersensitive but you have to accept it is just that "supersensitive! "

Your husband had a confirmed 3+4 and now has an incredibly low PSA all good news to be celebrated!  Even that small positive margin was probably killed by the trauma of the op and the very liw PSA supports that.

If it gets above 0.03 then he should take notice.  My own PSA "jumped" to 0.014 6 months after a less than 0.008. It peaked at 0.03 (I hope!) and is currently back down to 0.023. All the urologists and oncologists I have seen (because I stress too!!) have told me the same thing - stop worrying ,  start living but keep testing! !  I gave moved to annual though because PSA roulette is not fun!

 

User
Posted 10 Aug 2018 at 07:46
Oh gosh, all you who have had RP worrying whether it is .01 or .02 when we who had RT are happy if it has gone down from 0.7 to 0.6. My next test next month (2.5 years after RT), I would be delighted if it was down to your figures but know it won't be.

User
Posted 10 Aug 2018 at 08:06

The difference is you still have a prostate which will produce PSA so your comparison is completely invalid.

After prostatectomy we shouldn’t have a PSA reading, a PSA of 0.2 and rising for a post prostatectomy man is defined as biochemical recurrence. Hence all the very real angst. My PSA rose to 0.3 about a year after prostatectomy and rose quickly to 0.7 and was doubling in 1.2 months. I have since had salvage radiotherapy and am still on hormone therapy.

Men having had radiotherapy (usually combined with HT) also understandably have PSA angst. The definition of biochemical recurrence in men having had radiotherapy is 2 above the nadir. 

See below from a study on this.

Defining BCR

The definition of BCR differs depending on whether men have undergone RP or have received primary curative RT. After RP, PSA typically falls to an undetectable level, and BCR is defined as 2 consecutive PSA values higher than 0.2 ng/mL and rising [19]. After RT, PSA levels do not typically fall to zero, and BCR is defined as any PSA increase greater than or equal to 2 ng/mL higher than the PSA nadir [20]. The risk of PCa-specific mortality differs depending on whether the PSA recurrence was after RP or primary RT, and it is therefore important to interpret BCR endpoints in the context of the initial treatment [1].

 

Edited by member 20 Aug 2018 at 07:07  | Reason: Correcting Typo/autocorrect

Ido4

User
Posted 19 Aug 2018 at 20:01
Hi Francij, thanks for your reply. So after RP your PSA has settled above the undetectable level of the supersensitive test? How long has it been like that?

Consultant refused to do a retest as he says it is not necessary and will not show anything so we are stuck for 3 months waiting for a retest with OH in a very heightened state of anxiety.

Nothing I or Drs can say will help. What a mess.

User
Posted 19 Aug 2018 at 21:28
It seems from the way it reads that francij has moved to annual tests as his choice which I find somewhat paradoxical for somebody who is an advocate of the super sensitive PSA test but we each have our own reasons or motivation for dealing with tests the way we do but consultant's are best placed to interpret the significance of movement.

Just as a matter of clarification, I rather think that Ido4 made a typo in his last post when he said "Men having radiotherapy (usually combined with RT)....." meant combined wit HT.

Barry
User
Posted 19 Aug 2018 at 21:51

I did make a typo, thanks for pointing out. I did mean RT combined with HT. autocorrect on iPad I think.😬

I think the rest is fine.

 

Ido4

 
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