Radio Therapy or Surgery??

User

Posted 08 Sep 2023 at 23:49

Originally Posted by: Online Community Member

It is, but my biopsy was G7 and I had the RARP and then the lab upgraded it to G9 T3bN0M0 - so it's a tricky one. Would my surgeon have proceeded with the RARP if they had know the state of the PCa beforehand?
Post RARP PSA was <0.01 so although it means I may still need RT later, initial results are promising.

Steve I suppose we'll never know if she would have changed tack but you're doing very well and you didn't find out 6 months after your operation that your psa was rising, so, good decision and as time passes treatment just keeps improving.

With regard to Dave's comment about the inaccuracy of staging, I'd guess [?] that it's more likely that there'd be an upgrade than a downgrade after removing and analysing a Prostate. Interesting question though.

Jules

Edited by member 09 Sep 2023 at 11:26 | Reason: Not specified

User

Posted 09 Sep 2023 at 09:14

Downgrades do happen, but upgrades are much more common.

Prostatectomy isn't often offered for T3b, and I think the number of surgeons willing to do it is quite small. However, if only discovered to be T3b during the procedure, that's a different matter.

User

Posted 09 Sep 2023 at 09:33

I have read that the MRI is only 60 % accurate and can

diagnosis diseased areas when they are negative but they are usually more accurate in diagnosing areas that are disease free.

My MRI seem to suggest the disease was all over both sides of my prostate but my biopsy confirmed that one side only had disease in one out of twelve cores taken which was confusing that the time.

Maybe you only really know when they take it out and pathology do their thing!

User

Posted 09 Sep 2023 at 13:02

Steve, when you say only a few surgeons will do T3b do you think that is more to do with the politics of the NHS and individual hospitals?

I know some hospitals won’t do it but the Christie told me they cherrie pick patients depending on their circumstances..

User

Posted 09 Sep 2023 at 13:23

Thank you all for your thoughts and responses.

I have looked at both sides and considered the possibilities and have decided to go for the RARP.

I am hoping it will be done the week after next and hope and pray that I will at least get a decent amount of time if I have a relapse and need SRT.

Thanks again everybody

Hope you are all keeping positive and strong.

Best

Mark

User

Posted 09 Sep 2023 at 13:40

Good luck with your decision - if you need a blow by blow breakdown of what to expect then just let us know - a lot of us have been through it :)

User

Posted 09 Sep 2023 at 17:49

Thank you Steve

User

Posted 09 Sep 2023 at 19:46

I’m glad you’ve come to a decision Mark and I hope it works out for you. It’s good you’re getting your Op so soon, if you’ve not already done so get doing these Pelvic Floor exercises!

Dont look back and worry if you’ve made the right choice…..look forward to getting cured in the knowledge that if you are unlucky and they don’t get it all you have SRT as a backup. At your young age😊 I’m sure your recovery will be good.

All the best and keep us posted!

Derek

User

Posted 10 Sep 2023 at 01:45

Glad you've made your choice. You've taken a month to think about it and know the risks (at least as much as anyone can) so now go through the treatment and hopefully live happy ever after.

Keep us updated, people are more likely to hang around on here if they have problems. We would have a much more representative (and positive) view of prostate cancer if the 70% of successfully treated people stayed on the forum.

Dave

User

Posted 10 Sep 2023 at 06:57

All the best for your treatment Mark. It should take the pressure off once you get going.

Jules

User

Posted 10 Sep 2023 at 09:28

Thanks Dave & Jules,

I will certainly keep you up dated.

The site has been invaluable to my decision making as well as the support it has given me over the last 6 weeks since diagnosis. I’ve been in a dark place over this time and have never experienced mental health like this before. As a result I have a completely different out look on mental health and the extreme effect it can have in a person.

Thank you all again for the messages and support. Not sure what I would have done without them!

Best wishes to everyone

Mark

User

Posted 13 Sep 2023 at 17:36

Hello .You have made a very wise decision to have the prostate removed .I dont know if you have read the excellent book by DR Patrick Walsh called Surviving Prostate Cancer in which he describes the cancerous prostate gland acting as the mothership sending out chemical messages to any cancer cells in the blood stream to grow.Read my profile to see the journey I have been on I needed salvage RT and hormone treatment after my prostate was removed but for four years now my PSA as I write this is undetectable and has been since I started Enzalutimide and the hormone therapy .I had the RT six months after starting Enzalutimide but my PSA had already dropped like a stone to undetectable 4 weeks after starting Enzalutimide ,I was offered it instead of chemo because of Covid .No scan can pick up very tiny micro mets and cancer cells can hide for years in the body. Without the cancerous prostate acting as a mother ship these cells are without the chemical instructions from the prostate even though treated with RT the prostate is still there . .There is a trial underway at the moment testing this theory on men who would not normally be offered RP because their cancer had spread .They are being given RP and follow up RT if required to see if they do better long term than those have RT .I am very glad mine was removed i had no continence problems at all .I hope all goes well with your operation and yòur outcome is as encouraging as mine has been .

User

Posted 13 Sep 2023 at 20:28

Hi Librajc,

Thanks so much for the message.

I know I’m doing the right thing for me.. I just hope any SRT isn’t needed for a while but I know there are no guarantees..

I will certainly get the book you recommended and give it a read.

My Op is a week today so it will be all done this time

Next week.

Still all seems a bit surreal that 8 weeks ago I was walking round so happy and now this. But I suppose it’s the same for anyone diagnosed with this horrible disease.

Anyway thanks again and I hope you stay undetectable!!

Best wishes

Mark

User

Posted 13 Sep 2023 at 21:15

Hi Librajc. I've just read your bio. Similar journey and diagnosis to me. It just goes to show you can't always rely on active surveillance. I was wondering about the upgrading of your staging post surgery to T3bN1. Did your RP include removal of local lymph nodes (which suggests the original diagnosis was locally advanced)? Or was the N1 picked up on a scan after surgery? Chris

User

Posted 14 Sep 2023 at 10:07

Chris - probably best to start another thread or PM as I'm sure Mark will want to keep this one updated with his progress.

Mark - that's great news and very quick which is nice to hear in these troubled times of the NHS! If you need any advice on preparing for the surgery or what to expect afterwards then just ask - it's waaaayy less scary that you are probably imagining :)

User

Posted 14 Sep 2023 at 10:59

Really pleased you’ve come to a decision Mark and your surgery has been booked in quickly. Everyone is of course different. Take your time with recovery and don’t try to rush back to normal….wishing you all the best and happy to offer any details of our experience if needed.

Elaine x

User

Posted 14 Sep 2023 at 19:56

Hello .My PSA did not drop very much after my prostectomy so I had a Pet scan that revealed spread to local lymph nodes .However recent scans show no cancer in the lymph nodes or anything else of concern .I am very grateful to the team at the Oncology section of our NHS trust for the wonderful treatment i have received .My initial diagnosis was in 2016 when I was also found to have superficial bladder cancer and after treatment I have been completely clear for 6 years now .I had my yearly cystoscopy checkup last month and am still completely clear .Enzalutimide for me has been a wonderful drug despite the side effects which are manageable .

User

Posted 14 Sep 2023 at 23:37

Librajc, have you been given a time frame for the duration of your treatment with Enzalutamide [and other drugs]?

Edited by member 15 Sep 2023 at 04:55 | Reason: Not specified

User

Posted 15 Sep 2023 at 00:58

Originally Posted by: Online Community Member

No scan can pick up very tiny micro mets and cancer cells can hide for years in the body. Without the cancerous prostate acting as a mother ship these cells are without the chemical instructions from the prostate even though treated with RT the prostate is still there

I don't want to intrude on Mark's thread, so maybe I'll follow up elsewhere, but while I realize this is an idea from Dr Patrick Walsh's book, I'd like to know if it's backed by any research he's done or referred to. It's a pretty big call!

Jules

Edited by member 15 Sep 2023 at 01:11 | Reason: Not specified

User

Posted 15 Sep 2023 at 07:48

I think the research is ongoing.

Given RT and prostatectomy have similar outcomes I doubt the mothership effect is significant.

I think it's more likely related to the fact that clearly if something is removed it cannot shed further metastasis. If it is only damaged eg by RT it might, although of course the damage inflicted by RT specifically targets cancer cell reproduction and repair.

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