Another one bite the dust

User

Posted 04 Sep 2021 at 07:49

Very sorry about the positive margin issue. I dont know enough about the issue to offer an opinion im afraid but we are all rooting for you.

I also found the consultants optimism slightly disconcerting. How could he be so sure? But in the meantime I would try and put the upcoming psa test to the back of your mind. There really is no point in worrying as there is nothing you can do. Of course Thats easier said than done! Good luck

User

Posted 04 Sep 2021 at 08:07

@Jeremys,

Thanks for your kind message. I too cannot understand why my surgeon consultant is so optimistic. I will drop him an email and ask him to elaborate as his answers over the phone can be very dry. He is very good at responding to emails.

One day at a time...

User

Posted 04 Sep 2021 at 08:23

Plug your to numbers in here to work it out for yourself
https://www.mskcc.org/nomograms/prostate/post_op

What the surgeon has described is correct and not unreasonable. The big test will be that first post op PSA. Unfortunately you have to grin and bear it until then.

User

Posted 04 Sep 2021 at 09:05

Hi Francij1 and many thanks for the link. It's a good one. I was aware of it and did plug in my data which gave me a 10-year disease free survival rate of 61%, much lower than the 90%-95% quoted by my surgeon. My surgeon may have mixed up 2-year and 10-year probability, which is why I asked him to confirm the probability he gave me were for 10 years. I will get back to him and ask him which nomograms he is using...

One day at a time...

User

Posted 04 Sep 2021 at 10:22

I wonder if there are different types of positive surgical margins with some significant than others...?

One day at a time...

User

Posted 04 Sep 2021 at 11:33

The size of the margin and the Gleason grade at the the margin. TBH the recurrence rate of positive and negative margins is very similar and this supports your surgeons assertion that the trauma of the op and the hot knife fatally damages cells beyond the excision.

The good news for positive margins is should you have a recurrence it makes salvage RT more successful.

Try to forget about all this s*** until your next PSA!

User

Posted 04 Sep 2021 at 12:13

Jonathan, thanks for the insight! I know I suffer a lot from health anxiety and wish I could approach things differently but it's hard. I have emailed my consultant surgeon and asked him some detailed questions. I'm hoping he will come back with some more elaborated answers that substantiate his optimism.

I really hate this cancer business...

One day at a time...

User

Posted 04 Sep 2021 at 21:26

Originally Posted by: Online Community Member

I must confess I am really feeling down and could do with some support...

This positive margin business is really dragging me down...

If the surgeon thinks you're probably alright, try to accept it. None of us have cast-iron guarantees, even those with negative margins.

I also had a small positive margin. My surgeon said it was "diathermied" which pretty much means it would have been fried by the heated snippers of the DaVinci robot.

If your PSA is low and stays low, you're OK - for now. It's a bit sad, but that's about as solid as the reassurance gets. But your attitude of 'one day at a time' is spot-on and is the right approach.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 04 Sep 2021 at 21:45

Hi Bob!

As Alex says there are no guarantees in this game. But so far the stats and data are on your side. It’s very much a roller coaster ride through and through. I pretty much expect mine to come back at some point but the longer I can push that back gives the science more time to evolve. Chin up and enjoy the bubbly as you defo have had a good outcome so it’s celebration time 🍻🥂

User

Posted 05 Sep 2021 at 08:25

@alex_cycles, you're right, I should accept my surgeon's explanation and go with the flow. After all, why waste energy on something that cannot be changed? I just need to accept the hand I have been dealt with and make the best of it. It's the PSA test that will tell me how successful the RP has been.

One day at a time...

User

Posted 05 Sep 2021 at 08:34

@TechGuy, hey good to hear from you!

That's one thing I have noticed with prostate cancer: it forces you to live more in the now and less in the future.

One day at a time...

User

Posted 30 Jan 2024 at 12:29

Hello survivors,

A bit of an update as it has been a while since I last posted.

I had my RP surgery followed by PSA monitoring, which is arranged through my local GP clinic.

I have been slowly recovering and my PSA for 2 years was recorded as "< 0.01 ug/L". My consultant said it was undetectable. I was happy. 😀

At 2.5 year mark, my PSA test came back as "0.1 ug/L" on the letter. 😟

It represents a 10-fold increase over 6 months, which is a source of great anxiety.

Also, I have noted that they dropped a decimal in the test results. My consultant initial reaction was to suggest a change in 'reference range'. I tried calling the pathology lab at Epsom & St Helier NHS trust and the person I spoke to is not aware of any change in test protocol. I do not know if the same lab was used for the previous tests (there is only mention of the lab name on the last test result letter) so I am a bit at a loss.

My questions are:

is the dropping of 1 decimal significant and could a possible change in test lab or set-up explain the difference?

has something similar happen to someone else on the forum?

One day at a time...

User

Posted 30 Jan 2024 at 12:56

Totally understand the anxiety. Do you have the blood report? A copy should be available to you if not. Could be missing a < sign. Definitely consult with your doctor. My urologist always said we need at least 3 data points to determine a pattern and to have every 3 months if concerned.

User

Posted 30 Jan 2024 at 13:15

I know a number of hospitals now only test down to 0.1 and my last 4 or so test results have all shown less than 0.1. Previously my results were given as less than 0.04 (The previously lowest testing range). It could well be that the hospital, or the testing lab, has changed the test range and your results are only missing the less than sign. I would certainly want to clarify this with the hospital before deciding on what to do next.

Ivan

User

Posted 30 Jan 2024 at 13:20

Thank you for your replies.

I have now spoken to the lab and they have confirmed that my test assay has not changed and has always been the same. My test result is indeed 0.1 ug/L. So I went from <0.01 ug/L to 0.1 ug/L in 6 months.

Not great... wondering what is the next course of action.

One day at a time...

User

Posted 30 Jan 2024 at 14:58

This has not met the criteria for recurrence, so no immediate panic. Get a retest, then get tests every three months to see what is happening.

Dave

User

Posted 30 Jan 2024 at 15:40

Bob, for many of us, a post surgery PSA of 0.1 will bring us back under the umbrella urology. For me it meant more frequent PSA tests and as I approached 0.2 I was also referred to oncology. Treatment didn't start until I was just over 0.2. protocol is charging all the time and they may let you get beyond 0.3 before starting treatment.

Wondering is fine, worrying won't change the future results.

Thanks Chris

User

Posted 30 Jan 2024 at 15:54

Bob, we are in the same boat - RARP in May 23, initially a PSA of < 0.01 and then, 6 months later it's at 0.12. Next PSA test is March so we will see what's going on - if > 0.2 then I am to be referred for SRT.
Oh what fun! NOT

User

Posted 03 Feb 2024 at 07:42

Thanks for the sound advice. My main problem is the anxiety. I wish I could be ad level headed as you!

One day at a time...

User

Posted 03 Feb 2024 at 07:48

Thanks Chris. The latter from my gp states the psa level is satisfactory (in spite of tenfold increase from less than 0.01 to 0.1) so I guess 0.2 is the threshold triggering action... but does it make sense to wait that long ? A colleague of mine with PC had RP. His psa was 0.05, then 0.12 3 months later and 0.14, at which point he was referred to RT, which brought his psa to undetectable. It seems that, in his case, they did not wait for 0.2...?

One day at a time...

User

Posted 03 Feb 2024 at 08:00

Steve,

Sorry you're on the same boat! Hopefully, the radiotherapy (if needed), will bring you psa back to undetectable. That certainly was the case for a colleague of mine.

One day at a time...

User

Posted 15 Feb 2024 at 08:28

Saw the oncologist and had a repeat psa test which came back as less than 0.1 (the lab test accuracy does not provide result below 0 1). A drop from my previous results of 0.10. I have reintroduced cinnamon in my diet and added agaricus blazei. SRT is off the table. For the time being, that is... Oh the joy of living with Damocles' sword hanging over my head!

One day at a time...

User

Posted 15 Feb 2024 at 09:46

Hi Bob.

I'm still a little confused. Earlier you said that your PSA tests were all done at the same lab.

Originally Posted by: Online Community Member

My test result is indeed 0.1 ug/L. So I went from <0.01 ug/L to 0.1 ug/L in 6 months.

These figures indicated the lowest they measure to is 0.01.

In your last post you say that their lowest measurement is 0.1.

Edited by member 15 Feb 2024 at 09:49 | Reason: Typo

User

Posted 16 Feb 2024 at 07:35

Adrian,

Yes, the situation is confusing to say the least. My last test showing less than 0.1 was from a different lab. All my previous tests were by the same lab and showed less than 0.01 until the penultimate test which showed 0.1 exactly.

One day at a time...

User

Posted 28 Feb 2024 at 09:46

Ok, so here are my last 4 PSA test results:

08/23: <0.01 ug/L (usual lab)

29/01/24: 0.10 ug/L (usual lab)

13/02/24: <0.1 ug/L (different lab, test made just after consultation with oncologist)

23/02/24: 0.10 ug/L (usual lab)

It seems my PSA is exactly 0.10 ug/L, so just detectable.

My question is: should I proceed with SRT or wait? My oncologist has prepared the consent form for SRT. With a psa of 0.1, she thought that, while I am still in the safe zone (i.e. <0.2 ug/L), there is no point in waiting further and is proposing SRT. However, the 13/02 test result came back as <0.1 and she said there was no rush. My PSA is probably somewhere between 0.09 and 0.1 and different lab assays return slightly different test results, hence the confusion.

I know NHS will not trigger SRT until PSA reaches or exceeds 0.2 ug/L. Maybe the private health sector is happy to be more proactive?

Any views on this?

One day at a time...

User

Posted 28 Feb 2024 at 09:53

did you get this number from the lab blood report? I’ve noticed sometimes the person typing in the number on GP systems misses the rather crucial < sign. Happened to me with my most recent as was entered initially on the GP system as 0.025. When in fact the blood report showed <0.025. This was later corrected on the GP system.

User

Posted 28 Feb 2024 at 10:09

Originally Posted by: Online Community Member

With a psa of 0.1, she thought that, while I am still in the safe zone (i.e. <0.2 ug/L), there is no point in waiting further and is proposing SRT. However, the 13/02 test result came back as <0.1 and she said there was no rush.

She seems to have drastically changed her opinion purely on the lack of the < sign.

User

Posted 28 Feb 2024 at 11:10

Less than sign, < , can be significant. My last four annual tests via my GP were <0.04, <0.04, <0.07, <0.01 compared with <0.003 annually over the same period measured at a private hospital in London where I had my prostatectomy.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 28 Feb 2024 at 12:14

Originally Posted by: Online Community Member

Less than sign, < , can be significant.

But on the rare occassion, like Bob's, can be exactly the same.

Very nice avatar. 👍

User

Posted 28 Feb 2024 at 14:22

Yes, of course and thank you!

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 28 Feb 2024 at 19:34

Originally Posted by: Online Community Member

I know NHS will not trigger SRT until PSA reaches or exceeds 0.2 ug/L. Maybe the private health sector is happy to be more proactive?

NHS threshold is 0.2 OR three successive rises above 0.1 so my husband was referred to oncology at 0.12 and it was 0.16 by the time he saw the oncologist and agreed to salvage RT. That was through the private sector. I don't think it has anything to do with being more or less proactive - it is a scientifically based threshold. Any private practitioner who was rushing patients into salvage treatment earlier than necessary would be running the risk of being struck off.

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

User

Posted 02 Jun 2024 at 10:54

Well, 4 months after that test of January 2024 that showed by PSA rising from <0.01 to 0.1, my PSA remains at 0.1. Not in a rush to do anything, but, clearly, the salvage radiotherapy is lurking in the corner...

One day at a time...

User

Posted 02 Jun 2024 at 11:39

Hi Bob,

I'm pleased that there's been no further rise. I'd do the same as you and hang fast.

Good luck mate.

User

Posted 02 Jun 2024 at 12:38

Hi Bob,

Thats good it hasn’t risen again and look at it this way….at least you have a plan B if it does rise which would hopefully kill off anything left.

All the best,

Derek

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