My SRT three years post surgery

User

Posted 08 Nov 2022 at 16:03

Rambling post:

Today marks my third RALP anniversary and three months since salvage radiotherapy.
My PSA was undetectable for the best part of two years following surgery, but my post op histology showed a positive margin so the possibility of follow up treatment was not unexpected.
Three successive but small PSA rises (0.07, 0.1 then 0.12) later and I was having a conversation with my oncologist about salvage radiotherapy.
I had a choice..
1; bearing in mind my positive margin, go for 20 fractions of salvage radiotherapy to the prostate bed without HT.
2; wait for my PSA to reach 0.2 then go for a PSMA scan, hopefully giving a precise target for the radiotherapy.

(Ironic that I didn't fancy radiotherapy as primary treatment but here I was with Hobson's choice.) I took the first option for three reasons:
My oncologist's advice that my margin and PSA rises followed a pattern that was understood.
That my SRT would not include HT. This floated my boat as I just didn't fancy HT.
The treatment was likely to be in summer holidays when M25 traffic is more bearable (with a potentially unpredictable bladder.)

The treatment was easy enough, but I had to adjust my water intake compared to the planning scan, the slightest delay meant an uncomfortably full bladder and the radiographer stating the obvious.. "your bladder is overly full today Mr T"
I kept up exercise throughout and didn't really suffer fatigue, the main side effects for me were urinary urgency and loose stools. I still have the sudden urge to pee but I can clench for a few seconds until the sensation goes.

Anyway, my PSA is now back down to 0.07 so it's going in the right direction and my oncologist expects a further drop as more cancer cells die off. I'm being discharged back to urology and my next test is due in February so fingers crossed.
For me, this was a shot in the dark and undoubtedly like others here, the what ifs never left my mind, but so far so good.

Over the last few months I have been reading all your posts and stories on radiotherapy/SRT to improve my understanding, this definitely helped so thanks for sharing your experiences and expertise.

Good luck everyone!
Kev.

User

Posted 20 Mar 2024 at 22:00

Hi Kev,

Great news regarding your last test results.

It seems unbelievable that your last two consultations have both been cancelled and have left you wondering about the frequency of future tests.

Are you hoping the tests will be remain at 3 months intervals or be extended to 6 months?

I had RP just over a year ago. Since then my PSA checks have been done via my GP who is in a different Trust to where I had surgery. The communication between the two Trusts regarding my 3 monthly PSA checks have been appalling. Fortunately all the results so far have come back undetectable.

About a month ago during my yearly follow up consultation, the consultant didn't even have my last two PSA results and I had to give them to him!

Today, I've had to spend a couple of hours trying to get a message to my GP and my urologist asking them to get their heads together so that I know who and how often they will be conducting tests over the next year?

Patients shouldn't be having to organise their own treatment, but I believe if you don't, you'll just be forgotten about. It's disgraceful.

Edited by member 20 Mar 2024 at 22:21 | Reason: Additional text

User

Posted 21 Mar 2024 at 07:39

Thanks for the replies, I would certainly like to stick to 3 monthly tests, or at least have one more bite of the cherry.

Although I'm a bit disappointed about the cancelled appointments, it would be nice to touch base with my urologist. I have recovered well from both RALP and SRT (without HT), and now with the latest PSA results I'm definitely in a good place.

So if anyone else has rising PSA and is looking at more treatment (SRT), hopefully my outcome will give some confidence.

Good luck.

Kev.

Edited by member 21 Mar 2024 at 07:42 | Reason: Typo

User

Posted 08 Nov 2022 at 16:21

Thanks for the update, my next PSA is soon last one was 0.1 so not expecting good news 4 months on...

User

Posted 08 Nov 2022 at 17:37

Kev, best wishes for the future.

Thanks Chris

User

Posted 12 Nov 2022 at 12:10

Thanks for update Kev. Here’s hoping any stray cells are dead or dying and your PSA stays low from now on.

Ido4

User

Posted 17 Feb 2023 at 16:35

Kev T, great news,just shows how two similar situations can have totally different outcomes.

Thanks Chris

User

Posted 17 Feb 2023 at 21:25

Encouraging news.

Barry

User

Posted 17 Feb 2023 at 21:30

Great news Kev. Enjoy Fuerteventura and those raised glasses!!

Jamie.

User

Posted 17 Feb 2023 at 22:22

Great news Kev, have a fabulous holiday

User

Posted 17 Feb 2023 at 22:27

Great news - an educated guess by the onco, based on years of experience and the data from thousands of men before you!

Have a wonderful holiday

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

User

Posted 07 Jun 2023 at 23:12

Really great news Kev, long may it continue 👍

User

Posted 20 Mar 2024 at 22:27

My take. Until I am told different I keep going for 3 monthly blood tests, 18 months after surgery. I know that the hospital will not contact my DR so will just keep waiting for that tap on the shoulder.

User

Posted 20 Mar 2024 at 22:39

Kev, great news on the result. From discussions with my oncologist it is more about rate of rise than value.

Thanks Chris

Show Most Thanked Posts

User

Posted 08 Nov 2022 at 16:21

Thanks for the update, my next PSA is soon last one was 0.1 so not expecting good news 4 months on...

User

Posted 08 Nov 2022 at 17:37

Kev, best wishes for the future.

Thanks Chris

User

Posted 12 Nov 2022 at 12:10

Thanks for update Kev. Here’s hoping any stray cells are dead or dying and your PSA stays low from now on.

Ido4

User

Posted 17 Feb 2023 at 13:54

Just had a call from the Macmillan nurse with my latest PSA result of 0.04 which is yet another drop following SRT so happy days!

In my case, my oncologist's educated guess of doing SRT to the prostate bed without waiting for a scan seems to have paid off, but at times I had my doubts.

Next week's urology appointment has been cancelled so I'm guessing I'm still on three monthly PSA tests.

We're off to Fuerteventura next week, where we'll be raising several glasses to all those involved in my treatment and to everyone on here.

Good luck,

Kev.

Edited by member 17 Feb 2023 at 14:11 | Reason: Typo

User

Posted 17 Feb 2023 at 16:35

Kev T, great news,just shows how two similar situations can have totally different outcomes.

Thanks Chris

User

Posted 17 Feb 2023 at 21:25

Encouraging news.

Barry

User

Posted 17 Feb 2023 at 21:30

Great news Kev. Enjoy Fuerteventura and those raised glasses!!

Jamie.

User

Posted 17 Feb 2023 at 22:22

Great news Kev, have a fabulous holiday

User

Posted 17 Feb 2023 at 22:27

Great news - an educated guess by the onco, based on years of experience and the data from thousands of men before you!

Have a wonderful holiday

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

User

Posted 07 Jun 2023 at 22:34

Ten months post SRT and my latest PSA result is 0.03, I'm happy with that.

The only lasting side effect of the radiation now is the occasional urge to pee, but a quick clench of my pelvic floor keeps that under control. This has much improved over the last months and happens less often now.

ED wise.. things are improving all the time, it pretty much works on demand now, and I still have tadalafil on repeat prescription.

Had a good telephone call from my urologist, agreed to next PSA test in October and consultation in November which will be around my 4 year RALP-aversary.

Good luck everyone!

Kev

User

Posted 07 Jun 2023 at 23:12

Really great news Kev, long may it continue 👍

User

Posted 20 Mar 2024 at 21:26

Well it's now 19 months after SRT, and my latest PSA result is <0.010 matching October's, so that's two in a row now.

As November's consultation was cancelled. I wasn't really sure how often I should be tested, so I contacted my urologists secretary. A PSA test and appointment was arranged but unfortunately the new telephone appointment has been cancelled again.

So I have a question.. what should be the PSA testing schedule following SRT?

The first year, it was every three months, does it go to six monthly after that, or stay at three monthly intervals?

Cheers,

Kev.

Edited by member 21 Mar 2024 at 07:17 | Reason: Typo

User

Posted 20 Mar 2024 at 22:00

Hi Kev,

Great news regarding your last test results.

It seems unbelievable that your last two consultations have both been cancelled and have left you wondering about the frequency of future tests.

Are you hoping the tests will be remain at 3 months intervals or be extended to 6 months?

About a month ago during my yearly follow up consultation, the consultant didn't even have my last two PSA results and I had to give them to him!

Patients shouldn't be having to organise their own treatment, but I believe if you don't, you'll just be forgotten about. It's disgraceful.

Edited by member 20 Mar 2024 at 22:21 | Reason: Additional text

User

Posted 20 Mar 2024 at 22:27

User

Posted 20 Mar 2024 at 22:39

Kev, great news on the result. From discussions with my oncologist it is more about rate of rise than value.

Thanks Chris

User

Posted 21 Mar 2024 at 07:39

Thanks for the replies, I would certainly like to stick to 3 monthly tests, or at least have one more bite of the cherry.

So if anyone else has rising PSA and is looking at more treatment (SRT), hopefully my outcome will give some confidence.

Good luck.

Kev.

Edited by member 21 Mar 2024 at 07:42 | Reason: Typo

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