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User

Posted 02 Jul 2020 at 06:24

Originally Posted by: Online Community Member

Catheter out today. Small dribble. Pleasantly surprised how well I can hold in, but need to keep concentrating on it. Tena 3 less of a fuss than I had imagined.

Many leaks along the way. Getting out of car, passing wind, bending over.

Onwards with the pelvic floor exercises!

Glad it went well. Enjoy being bagless. 😀

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 13 Aug 2020 at 13:48

Well I got my post RARP PSA result yesterday. 0.2! I could have cried. I phoned the doctors again this morning to make sure there was no mistake. Confirmed at 0.2.

Silly question but I assume I have moved into the salvage RT population?

I have a call with the surgeon tomorrow.

Jim

User

Posted 13 Aug 2020 at 13:58

Sorry to hear this. What was your histology post surgery?

I suspect RT of prostatic base is a pretty normal pathway assuming they don't take another PSA just to be sure.

Conversation with the surgeon so at least provide reassurance when you have more info.

User

Posted 13 Aug 2020 at 14:05

Sorry to hear that Jim. How was the post op histology on the prostate?

A friend of mine had a similar PSA after surgery and they are monitoring for now.

User

Posted 13 Aug 2020 at 14:23

Thanks Techguy and MikeW. I get histology tomorrow. Had the PSA done in prep for discussion.

Jim

User

Posted 13 Aug 2020 at 14:32

Please keep us posted!

User

Posted 13 Aug 2020 at 14:47

Fingers crossed for you.

User

Posted 13 Aug 2020 at 15:10

Originally Posted by: Online Community Member

Hi LynEyre. Met with Onco yesterday. Upgraded to T3a. Tumour close to edge of prostate and they are assuming it could have leaked. No lymph node involvement.

It seems the onco you saw in February was spot on with his / her advice - it had already leaked. I would ask for a referral back to the same specialist now - don't let the surgeon persuade you to wait for a few PSA tests 'to see whether it drops further'.

It won't be salvage RT - it is called adjuvant RT if it is either pre-planned or is required immediately following the primary treatment.

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

User

Posted 13 Aug 2020 at 19:21

Thanks LynEyre.

I guess that it has leaked or something left behind? Nerves fully spared on right side and partially on left. Maybe an issue here.

Histology tomorrow. Hopefully that may shed some light.

Apologies if you get two replies. Thought I sent something today but can't see it anywhere.

Jim

User

Posted 13 Aug 2020 at 19:24

Sorry to hear this.

Suggest you do some reading up / review of posts here on RT to get a feel for the preparation, execution and follow up.

It isn't as overtly tough as RP but is more of a slog with (sometimes) bowel and bladder issues.

Keep up the kegels and penis rehab and stay positive.

User

Posted 13 Aug 2020 at 19:41

Good advice Pete and I will.

Jim

User

Posted 13 Aug 2020 at 22:08

Burghboy

I had SRT to the Prostate bed but it still didn't get the cancer. I would be pushing for one of the tracer type scans, if you can. The histology may provide some more data. I assume your first PSA was close the recommended minimum Six weeks post op. My surgeon has any post op result in excess of 0.09 retested immediately.

Thanks Chris

User

Posted 14 Aug 2020 at 07:08

Thanks Chris. The PSA was done a few days after the 6 weeks post op.

Talking with surgeon this morning and will have more info.

Jim

User

Posted 14 Aug 2020 at 10:08

Hope that consult goes well Jim and that you get answers to all your questions and a clear way forward 😃

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 14 Aug 2020 at 16:35

Thanks Alex.

Histology shows cancer has broken out. More extensive in Prostate than previously diagnosed. Originally left side Apex, but now also base and positive margin there.

No Lymph node involvement. Gleeson confirmed at 7 (4+3).

Surgeon was immediately indicating RT. Going before MDT now for plan.

Jim

User

Posted 14 Aug 2020 at 17:42

That sounds decisive at least and that it's moving forward. Sorry to hear about the breakout though. Not the best news. 😃 Sounds like they will have a pretty good idea of where to target with the RT though.

Edited by member 14 Aug 2020 at 17:43 | Reason: Not specified

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 15 Aug 2020 at 08:32

Not the best news Jim but seems they know where to target. Best wishes

User

Posted 15 Aug 2020 at 09:58

Thanks Alex and Mike.

Yes hopefully they can target the right place with RT. Right now I feel like I am at the top of the slippery slope.

Jim

User

Posted 02 Sep 2020 at 15:12

Update. I met with the Oncologist yesterday (1/9/2020). She was very positive about my histology. Only 1 mm of remaining positive margin at the base and she is confident to treat.

She has asked for a repeat PSA in 3 months. If the same as post surgery at 0.2 or above, then will move to RT and HT (2 years).

Any thoughts on this most welcome.

Jim

Edited by member 02 Sep 2020 at 15:12 | Reason: Spelling

User

Posted 20 Nov 2020 at 08:52

First post for a while.

Gleason 7 (4+3). Surgery June. Positive margins and PSA 0.2.

Oncology wanted to wait 3 months before a decision on next steps. They were not concerned with the short delay and time to ensure the surgery had healed. Particularly the new join to base of the bladder.

Got my new PSA yesterday. 0.5! You could have knocked me over! Can't believe it has risen so quickly. Any thoughts on this from the community?

Apart from the positive margins, the surgery has been good. Dry from night one. Fairly quickly off pads. I moved to 5mg Tadadifil and that has help. Getting erections just about strong enough for penetration. Also nocturnal movements.

This progress is about to be stopped as I will definitely be starting RT/HT in the very near future. Can the community remind me the advice on pumps to keep things healthy downstairs. Both NHS and the cheaper web site products.

Many thanks for your help.

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