Radio Therapy or Surgery??

User

Posted 06 Sep 2023 at 16:59

I remember my confusion at the onset. The only difference was that, I did not have the benefit of this wonderful site, when I got my diagnosis. I booked a meeting with all the various consultants - my main concern was ED. However, I soon got to understand that each path carried a risk of ED and/or incontinence. I even went left of field and requested a session with the HiFU team @UCLH. I made it to that treatment by the skin of my teeth. I had do another MRI scan and a second biopsy just to check if I was a good candidate for HiFU. The choice in the end boiled down to HIFU or surgery. I even took myself off the surgery list. What made my mind up was the opinion of the HIFU consultant when I asked him what he would do if he were me, he did not mince his words he said, giving my age late 50's he would go with surgery. That was that!

User

Posted 06 Sep 2023 at 18:05

I had a similar conversation with my urologist Gee Baba. I asked her if it was her husband sat in my place, what would she tell him. She was very honest, and said he’s 60, so she’d tell him to get it removed asap. That made my mind up for me 👍

User

Posted 07 Sep 2023 at 10:37

.... and all I can say is "ditto' - my urologist said exactly the same and she performed the surgery admirably. I wonder if urologists and oncologists have different preferred treatments?

User

Posted 07 Sep 2023 at 12:37

There is a built in bias within each group of specialists. My urologist insisted that I should consult an oncologist even though we had already made up our minds. There is a great deal of confidence building up in the RT field which is a good thing but oncologists, particularly the young ones, are trying to build their customer base. It is more difficult to navigate your way through all the treatments available now than it was when 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 07 Sep 2023 at 13:30

Yes, urologists will usually advocate surgery which is understandable as it is the area they know best and favour where the patient is suitable. But in my case the surgeon told me he would operate if I wanted but his view and that of the MDT was it was unlikely that he could remove all the cancer so recommended I have RT instead. Oncologists are more familiar with RT and apart from taking cases like mine that the surgeons don't want, feel that one of the forms of RT is just as good an option as surgery, particularly as major advances have taken place in RT over the last 10 or so years. There was a prominent member of this forum and great character and researcher user name 'Athalays' (You can see his profile here)- https://community.prostatecanceruk.org/default.aspx?g=profile&u=2673 He expressed great confidence in his Oncologist who claimed whatever a surgeon could do, he could do just as well with RT.
So it's good that specialists have confidence in their area of expertise where there are not contra aspects. Certainly, there was a time when surgery was largely considered the 'Gold Standard'. My second opinion who was a radiation specialist told me this was his view in 2007. However, with great RT refinement in the intervening years, this view is now contestable. Other individual considerations now may be given more weight by patients in coming to a treatment decision.

Edited by member 07 Sep 2023 at 13:36 | Reason: to highlight link

Barry

User

Posted 07 Sep 2023 at 16:46

I am guessing that it will also come down to what is available in your area/hospital?
I can imagine that the RARP Da Vinci is now pretty universal surgery equipment but are the various RT treatments that have evolved over the last few years universally available - or are they only in specialist centres with corresponding queues?

This is usually what happens as new treatments become available but maybe someone knows what the current RT landscape looks like?

User

Posted 08 Sep 2023 at 06:02

It’s a really difficult decision to make and everyone is different depending on their circumstances and medical situation. If I was recently married or in a new relationship with someone 20 years younger then that maybe a major consideration in any decision. As it is I am 30 years married. I was in that position in February and was presented with a whole menu of treatment options. I was encouraged (told!) to see at least the surgeon and oncologist before making any decision. What swayed it for me to surgery was the oncologist when asked said in my circumstances they would choose surgery. Good luck.

User

Posted 08 Sep 2023 at 06:13

The choice for those who were/are G7, T1 or T2 is quite different to the dilemna for those who are G9, T3b.

Jules

User

Posted 08 Sep 2023 at 11:49

Originally Posted by: Online Community Member

The choice for those who were/are G7, T1 or T2 is quite different to the dilemna for those who are G9, T3b.

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.

User

Posted 08 Sep 2023 at 13:01

Yes Steve, diagnosing the exact stage of the cancer is impossible. Even post op when the histology report was good, we have seen people on this site with recurrence due to unknown distant mets. The medics can only work with the information they have at the time.

I was T3N0M0, G9, PSA 25, with extra prostatic extension. The view of the medics was that surgery would be pointless on me. Five years later PSA is currently<0.1 . I don't consider myself cured, if someone is not interested in statistics I will used the phrase 'cured to all intents and purposes'.

I think someone who has undetectable PSA more than ten years after surgery, probably is cured. For me statistics suggest I will die of prostate cancer 15 years from today. That date moves forward one day a time, until I get to 70 then the statistics shift to suggest I will die of something other than prostate cancer in less than 15 years time. If my PSA rises above 2.1 the statistics change from 15 years to 5 years.

I don't have any problem living with these probabilities, I accepted I was not immortal at the age of 48, after my dad died (in his 80s).

Had I have had surgery it would improve my statistics slightly, but at the costs of the side effects of surgery, in the opinion of the medics the slight benefit was not worth it, I am inclined to agree with them.

Dave

User

Posted 08 Sep 2023 at 22:49

Originally Posted by: Online Community Member

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 10:26 | Reason: Not specified

User

Posted 09 Sep 2023 at 08:14

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 08:33

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 12:02

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 12:23

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 12:40

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 16:49

Thank you Steve

User

Posted 09 Sep 2023 at 18:46

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 00:45

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 05:57

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

Jules

User

Posted 10 Sep 2023 at 08:28

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 16:36

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 19:28

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 20:15

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 09:07

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 09:59

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 18:56

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 22:37

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 03:55 | Reason: Not specified

User

Posted 14 Sep 2023 at 23:58

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 00:11 | Reason: Not specified

User

Posted 15 Sep 2023 at 06:48

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.

User

Posted 15 Sep 2023 at 11:53

Hi Elaine,

I have sent you a PM but your inbox is full.

maybe you could delete an old message to allow mine to be delivered.

thank you

mark

User

Posted 16 Sep 2023 at 11:56

Hello .In answer to your question no I havnt been given a specific time table .Initially they said 2 to three years but on going research into Enzalutimide indicates that whilst its working there is no reason to come off it as the research has indicated very good results in overall survival and inhibition of progress the longer a man with my prognosis remains on it .Some men are still taking it after 5 years and upwards of five years .Enzalutimide is being trialed for many types of cancer now including brain cancer and bladder cancer . This disease is nasty and I am under no illusions as to the fact that it may return but I am considered in remission and happily living my life !

User

Posted 24 Sep 2023 at 12:03

Hi Everyone,
So had the RP which was a nervous experience.
Glad I’ve had it done now. Surgeon managed to save nerves on one side and most on other.
Continence is good so far.
Just need to wait on histology now. Hoping there is no node involvement and I have negative margins!
This waiting is very difficult..
best wishes to everyone
Mark

User

Posted 24 Sep 2023 at 12:42

Great to hear from you again Mark and I’m pleased it went well and you’re making progress.
Yes, the waiting is always the worst part, I was like a bear with a sore head waiting on my first PS a test after RT. You do get use to it though and need to keep yourself busy to keep your mind off it.
All the best with your recovery!
Derek

User

Posted 24 Sep 2023 at 12:45

Glad it's done and remarkably fast for the NHS. Give yourself plenty of time for recovery. Waiting on test results will be your future from now on, worrying about them won't change them, so chill out.

Dave

User

Posted 24 Sep 2023 at 13:49

Thanks both

User

Posted 24 Sep 2023 at 14:36

Hope recovery continues to go positively Mark. That’s great if you already think continence is going well. No avoiding the horrible wait for results but whatever they are you will know and can then plan accordingly - it’s the not knowing that is horrible we found.

User

Posted 24 Sep 2023 at 16:58

Thank KD123,
All sorts of things are going through my head. I think I google too much too and I get ahead of myself.
My staging was T3b N0 M0 and after a PSMA pet scan it stayed that way.
Just hoping it isn’t worse.
Prepare for the worst but hope for the best!!
🙏🤞

User

Posted 24 Sep 2023 at 19:53

So glad it’s done and you’re feeling ok Mark. Wishing you a full and speedy recovery.

I’m so sorry aswell that I’ve just seen your message from the 15th about my inbox. I’m just on holiday and left on the 15th so I missed it! I have deleted some messages now so please feel free to message anytime x

User

Posted 24 Sep 2023 at 20:05

Mark,take it easy but keep mobile, hope your recovery goes well.

Thanks Chris

User

Posted 24 Sep 2023 at 20:10

Very best wishes for a rapid recovery, Mark!

Chris

User

Posted 24 Sep 2023 at 20:59

Thank you to the two Chris’s

User

Posted 24 Sep 2023 at 21:01

Thank you too Elaine..

hope you enjoyed your holiday

best wishes

Mark

User

Posted 27 Sep 2023 at 16:20

Hi Everyone,
So had my RP which went well.
Continence is v good and feeling better everyday.
Just had histology results.
Downgrade from 5/4 to 4/5 Gleason.
Clear margins
1 out of 22 mode invaded.
Urologist has recommended PSA in 3 months.
Could I have everyone’s opinion on this please.
Mainly if you think I should be having RT and hormones straight away.
Thanks
Hope everyone is keeping positive.
Mark

User

Posted 27 Sep 2023 at 16:29

Good news on the downgrade but unfortunate about the node involvement. You should have a PSA 8 weeks after the RP to see where it at. Ideally it should be <0.001 (mine was) and then it's a case of monitoring.
I don't think they will start or even consider HT/SRT at this stage - you need to get that first PSA result and that will guide them on any next stages that might be needed.

Good luck

User

Posted 27 Sep 2023 at 17:55

Agree with Steve, wait and see and try not to worry…I know it’s difficult.

if it does need treatment could they not use SABR, I’m not sure whether that would require HT as well though.

Stay strong no positive for the sake of you’re recovery💪

Derek

User

Posted 27 Sep 2023 at 17:56

As above concentrate on recovery and ask why the PSMA PET didn't spot the lymph node.

User

Posted 27 Sep 2023 at 19:03

I’m not sure my have PSMA didn’t spot it.
Maybe it was too small.
It’s been taken out now but not sure what it’s left behind or damage it’s done or there are more..
Was hoping this was it for a while but not so sure now!

Best to everyone

Mark

User

Posted 27 Sep 2023 at 21:03

Unfortunately when your T3b, node involvement is always a strong possibility. I had one out of 34 nodes which came back positive. You have also had quite a few nodes removed so chances are any undetectable micromets have been removed with them. It's now a case of sitting tight until the PSA test (easier said than done). The good news is you have no positive margins on the prostate. My surgery was 19 months ago. Since then I've had SRT to my prostate bed (I had a positive margin on the prostate). My PSA has remained undetectable since, which seems to suggest there was no further cancerous lymph nodes left behind. Hopefully you should be the same. Chris

User

Posted 27 Sep 2023 at 22:12

Thank Chris.
Thats reassuring. Hopefully they got it all out for both of us and that’s the end of it!
🤞🤞🤞
All the best
Mark

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