Worrying more now, 6months after RARP

User

Posted 22 Dec 2019 at 12:56

Last posted about 8 months ago, so an update is well overdue.

I had RARP at the beginning of June. The physical recovery went well. Dry(ish) pretty much straight away after removal of catheter. Pelvic floor exercises helping to reduce the accidents when coughing, rising from a chair etc.. I did note that after a short period of forgetting to do them, the accidents began to increase again, so I now ensure I do my 3 sets per day and all seems fine!

Mentally I'm a bit up and down, although mostly up. My first 2 PSA tests came back at <0.1, which is good news.

I had my 3rd test on Friday (20th Dec) and I must admit, I'm wobbling a bit waiting for the result. My pathology showed that I was Gleason 7 (3+4), my pc was quite extensive measuring 36 x 27 x 21mm and was right up against the edge of the prostate, although not extending out of it. I have a number of positive margins around the bladder neck area, totalling approx 33mm (in his most recent letter to my GP, the consultant stated 30ml. not sure if this is a typo, and he meant mm, I think he dictates letters over the phone to his PA). I asked him, given my results, what are the chances of a biochemical recurrence (BR)? He stated about 50% (although I'm not sure over what time period, I think he said within the next 5 years).

Keeping fingers crossed I don't get a BR, but would be interested to hear from anyone on here have similar experience, especially around the bladder neck, and what next steps they took given that situation?

I must say that I have found the openness, honesty and support shown by everyone on this forum really useful, and it really helps when looking for advice and guidance, and read the stories of others in this group.

Best wishes for the festive period,

Chris

User

Posted 22 Dec 2019 at 13:51

I don’t think it ever completely goes away, the PSA anxiety, and for some it seems to get worse over the years.

John had bladder neck involvement which led to an unexpected bladder redesign job during the RP. His PSA went up and down a bit for a couple of years but his coping strategy was mostly to pretend it wasn’t happening before he gave in and had salvage RT.

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

User

Posted 24 Dec 2019 at 09:40

My GP surgery receptionists were unaware of the importance of the ‘less than’ < symbol, and when I queried my PSA result I was told ‘We’re not clinically trained’.

And evidently not mathematically trained either, despite having probably at least eleven years education in the subject...

I am turning into a grumpy old git, but Merry Christmas everybody anyway!

Cheers, John.

User

Posted 23 Dec 2019 at 14:06

The tension about US testing only applies below 0.1 ... once it rises above 0.1 all labs will report to 2dp, e.g. 0.11, 0.14, 0.36, etc. So if your score has been reported as 0.1 it will be 0.1

Having a test at another lab will not give you any peace of mind as you will not be able to judge reliability - each lab will have its own calibrations. For example, we had Dad’s PSA rested in Leeds and Harrogate on the same day and the results were 3.0 and 3.2 - it is common knowledge in our region that results from Harrogate hospital are higher than everywhere else.

Edited by member 23 Dec 2019 at 14:11 | Reason: Not specified

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

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User

Posted 22 Dec 2019 at 13:51

I don’t think it ever completely goes away, the PSA anxiety, and for some it seems to get worse over the years.

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

User

Posted 23 Dec 2019 at 13:15

I got my PSA result this morning. Previous scores have been <0.1 (July), <0.1 (October) , Today's score is 0.1. All scores have come from the same place.

I asked where the 'less than' symbol had gone, they told me it was not less than, but couldn't tell me the exact amount. So, my score has increased, but I don't know to what extent.

I find the scoring to one decimal place very annoying, especially when I need to monitor my score should it be rising towards 0.2

I did ask for a more sensitive score (as I have on all 3 occasions now), but they always look surprised when I tell them that I am post RP (it doesn't seem to show on their computer system), and need to closely monitor things.

Does anyone know where I can go to get a more accurate scoring (2 decimal places)? I'm happy to pay for a private test, so long as the hospital they send the blood samples to give a more sensitive result.

Many thanks,

Chris

User

Posted 23 Dec 2019 at 14:06

The tension about US testing only applies below 0.1 ... once it rises above 0.1 all labs will report to 2dp, e.g. 0.11, 0.14, 0.36, etc. So if your score has been reported as 0.1 it will be 0.1

Edited by member 23 Dec 2019 at 14:11 | Reason: Not specified

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

User

Posted 23 Dec 2019 at 14:23

Thanks Lyn,

I'll relax a little now.

..until the next test is due at least! 🙄

User

Posted 23 Dec 2019 at 15:18

Out of interest, who gave you the PSA result? We have found in the past that a GP admin person transferring the results from the system to John's record didn't bother with the < because she didn't know what it meant, and there have been cases on here of the lab missing off the < in error.

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

User

Posted 23 Dec 2019 at 16:44

Good point Lyn.
The health centre admin told me the result and printed it out. Not sure if they have a form that they fill out, or whether they cut and paste the hospital form. I’ll have to ask them.

many thanks,

Chris

User

Posted 24 Dec 2019 at 09:40

My GP surgery receptionists were unaware of the importance of the ‘less than’ < symbol, and when I queried my PSA result I was told ‘We’re not clinically trained’.

And evidently not mathematically trained either, despite having probably at least eleven years education in the subject...

I am turning into a grumpy old git, but Merry Christmas everybody anyway!

Cheers, John.

User

Posted 30 Nov 2020 at 16:37

It's been a while since my last post, so have updated my profile.

My PSA test in the summer came back at 0.08, a drop from 0.10.

The next test came back at 0.12, so had a consultation with my Onco, who said given this rise plus the fact I have 33mm of positive margins (seen as substantial) I could commence SRT straight away, or have another PSA at the start of December to see if: 1) it spiked again (indicating that the cancer may have moved into my lymph nodes and/or escaped elsewhere), or 2) if it stayed put / had a small rise.

My Onco suggested that a spike would result in my having a PSMA-PET scan followed by some HT, then SRT. However, a slow rise would mean straight into SRT in the New Year.

I currently have a long distance flight booked in early March, and another 3 weeks after that (these may get postponed yet, due to Covid-19). I would be interested in the experiences any of you have had with SRT, and also if you think it would be OK / wise to fly long distance only 2 weeks after my SRT finishes (if that is the outcome).

Many thanks,

Chris

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