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Radio Therapy or Surgery??

User
Posted 24 Aug 2023 at 15:57

I am in a dilemma.. I’m 55 with a Gleason if 5+4 t3b N0M0 so far although paying for a PSMA pet scan hopefully within a week to confirm this. 
I have spoken to two urologists regarding treatment. The first has recommended a radical prostectomy and the second seems to be steering me to RT as he said that I will Probably need SRT after the surgery anyway! 

Could I ask if anyone could give me the pros and cons to both.. like everyone I am hoping to beat the horrible disease but wanted followers opinion on both treatment..
Thanks 

Mark

User
Posted 29 Aug 2023 at 03:04

Originally Posted by: Online Community Member
I do really want it out to be honest and deal with anything else afterwards.

Please keep an open mind on your decision Mark. Your first shot is your best shot and if that fails, the follow up treatment is likely to be less successful.

The big distinction is that a prostatectomy can be a clear choice if there's no cancer in the seminal vesicles, or breakout from the capsule. On the other hand, if the cancer is not contained, dealing with "anything else" afterwards is most probably going to be a less effective option than choosing RT initially where one process will take on the whole problem, possibly with additional hormone therapy.

Read the bios of others here. There's some clear examples of poor choice/advice leading to prolonged issues that might not have occurred had better choices been made in the first place.

Jules

Edited by member 29 Aug 2023 at 03:08  | Reason: Not specified

User
Posted 29 Aug 2023 at 22:23

Steve,

in my case and I've seen and heard of it in others here, once my urologist knew that there was some level of breakout from the prostate, he wasn't willing to go ahead with a prostatectomy because there was a fair chance something would be left behind and in consequence he believed that RT was a better option. In retrospect I think it was a wise decision. I'm confident in saying that many urologists will take the same position, though I realize that some are willing to do surgery knowing that the cancer is not contained.

I know there's a tendency to think that once the prostate is out it will solve the problem and if the cancer is contained that's a fair call. If the cancer is not contained, with clear margins the story gets more complex and if it gets into the lymphatic system, it's on a railway line to the rest of your body where progress is unpredictable. In that case the prostate itself is not so much the issue as the spread, which is the real killer.

My own path ... G9, high risk locally advanced, T3bN1M0, cancer in 3 lymph nodes, RT and HT 2 years ago, now psa <.01 and no residual issues of any sort. If I'd been offered a choice I probably would have gone with a prostatectomy and follow up but in retrospect I'm more than happy I had to go RT/HT. Now, I take the position that it makes more sense to go through the process once, with a good chance of a "curative" treatment than to have to return for more scans, more treatment and possibly lifetime HT. I think we all tend to downplay the seriousness of PC, as a coping strategy, but it can be to our detriment when we're deciding on treatment options.

Steve, you're asking me why a prostatectomy followed by an RT clean-up is not as good as starting with RT and I don't know the answer, though I have read here in a number of threads that your first chance at treating cancer is your best chance and the probability of success reduces with subsequent treatments.

At this stage Mark is dealing with conflicting opinions from "consultants". Post scan results this might change and I hope that the consultants involved are representing both surgical and radiotherapy opinions.

Jules

 

 

 

 

Edited by member 30 Aug 2023 at 07:55  | Reason: Not specified

User
Posted 30 Aug 2023 at 22:05

Hi Mark,

When I started HT it brought on dreadful anxiety …I just couldn’t function at all. It got better as the day went on but I was in a really bad way. I remember a trip to Arran with my son and 2 lovely grandsons and they just couldn’t understand why I wasn’t able to join in the fun….it was one of the saddest days of my life so I decided to do something about it. I had heard sertraline had helped various members on here and my sister-in-law has also been taking it for anxiety. I contacted my GP who put me on a low dose…it takes a few weeks to get into your system but it has made a HUGE difference to me…I can now deal with most things that are thrown at me on this journey. I do still have a few ‘down’ moments but generally am able to get on with my life. I would normally try and stay away from anti-depressants but I thought to myself ‘I’ve got at least 3 years of this treatment and I want to have some QOL’ ….Sertraline has certainly given me this.

Oh, and Maggies has also been such a help to me, I always feel better when I come away from meeting the other guys there.

Im sure once you have your results and made your treatment choice you will start to feel better…you are right, the waiting is the worst….I was like a bear with a sore head waiting on the results of my last PSA test…it was so important to me as it was the first following RT.

All the best…and stay strong💪💪💪

Derek

User
Posted 05 Sep 2023 at 18:59

Both your staging and your Gleason are high risk. With this, micro-mets (mets too small to show on scans) in the area around the prostate, seminal vesicals, and lymph nodes must be a possibility too. I would be looking to hit it hard first time.

If your hospital offers HDR boost, I would ask if they think it's suitable. This is a radiotherapy combination where about half the dose is given using HDR brachytherapy to prostate and seminal vesicles, and the other half is given using external beam radiotherapy to same areas, but also including area around prostate and pelvic lymph nodes at a lower dose. This puts a higher dose into the prostate than can be achieved with external beam radiotherapy alone (prostates handle high doses well), but also aims to mop up any micro-mets in the most likely places, i.e. just around the prostate and in the pelvic lymph nodes (at a lower prophylactic dose). This will come with a period on hormone therapy too, probably at least 2 years. Although this hits the cancer hard, the side effect profile is not usually excessive.

I had this treatment although my diagnosis wasn't as high as yours. I'm very happy with the outcome, but there are no guarantees of course.

Edited by member 05 Sep 2023 at 19:05  | Reason: Not specified

User
Posted 06 Sep 2023 at 00:24

One can consider the pros and cons of various treatments but this should be vary much related to the individual patient whose considered views should also be part of decision making. As in this thread, even with all the information available to different Consultants they may advocate a different way of treating an individual patient.

Maybe a patient would like the views of a number of Consultants on his case and be persuaded by a majority view but this is not practical. Perhaps it might help to some extent to read what several Consultants say on the subject of Surgery v Radiation. Only this evening I came across a video on this subject where some interesting points were made and I was going to post as a separate thread but feel it might be useful here. https://www.youtube.com/watch?v=ryR6ieRoVFg

 

Edited by member 06 Sep 2023 at 00:24  | Reason: to highlight link

Barry
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 06 Nov 2023 at 21:09

Sorry to hear it wasn’t the result you hoped for Mark. Wait and see on the next test and hopefully it may go down a bit more 🤞🏼 

If that isn’t the case and it goes up then I think SRT will be required, I think there is a certain amount of time that they would wait post op to allow you to heal, so it might be that they would start you on HT in the meantime.

Really hoping all will be ok for you. I know you may feel if it goes up that you made the wrong decision, but there is alot of talk these days about removing the main tumour, and even if that hasn’t put you into remission then the hope is it will slow down any progression. I always hope this has been the case for Rob.

Best of luck for your next PSA and keep positive and keep us posted.

Elaine x

User
Posted 06 Nov 2023 at 22:54

Sorry Mark, that's not what you wanted to hear.

I would push for a PSMA PET scan to try and find it, but your PSA is currently too low for that to have much chance of finding anything, so you will probably need to wait until it's risen some more. They might do some other scans in the mean time. Did you have a bone scan during diagnosis? If not, that's one you could have now.

User
Posted 07 Nov 2023 at 00:20
Sorry to see this.

Testing 6 weeks post-op is fairly standard in the UK and more than enough time for the PSA reading to be considered fairly reliable. As the result is well above 0.1, the surgeon should really have referred you straight to oncology to discuss adjuvant RT with or without HT. The results of the next PSA test will help inform next steps but I wouldn't let the surgeon delay any longer than that.

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

User
Posted 04 Dec 2023 at 12:43

So sorry to hear this Mark and I can understand why you’re feeling gutted. I suppose that’s the risk you take when surgery is kind of borderline. As I’ve said before,  in Scotland they wont do surgery if there’s any risk of spread which is why I wasn’t given that option, which I would have chosen if it had been….and then quite possibly I’d been where you are now. That’s not much help to you but theres  many on here who have had SRT and can advise you better than me and  I wish you all the best with any further treatment required. I’m sure you’ll cope well if SRT is required and hopefully the side effects will be minimal.

Derek

User
Posted 04 Dec 2023 at 18:57
So sorry Mark to hear about this - can’t fully imagine how stressful it must be for you. Hope the PSMA scan result is as positive as possible and that any treatment required is as tolerable as possible. Such a ruddy rollercoaster all of this x
User
Posted 24 Aug 2023 at 16:48

This thread covered a lot of treatments and reasoning behind them. I would start by working your way through it.

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

 

Dave

User
Posted 24 Aug 2023 at 20:59

Everyone who is diagnosed with prostate cancer naturally wants to know what is the best treatment. The problem is that you will get anecdotal evidence from people who have had treatment. Some will say that they regret their choices but others, like me feel very lucky that I made the right  choice - probably only because I have survived the disease for 12 years, not withstanding the fact that I did not regain 100% continence ( I tend to leak when sexually excited!) and for practical purpose erections were of no use after surgery. My ED was age induced which was made worse by surgery although my nerves were preserved. However, we managed to establish a new normal and with the help of a VED (penis pump) we managed to re-establish our sex life. Surgery was successful (?), recovery was challenging as I had expected but we are leading a good life. The question we ask ourselves is am I cured? I woulds like to think so but no one knows. All my consultant says to me is that my PSA is low enough and stable  and not to think about further treatment. Does that help? All I can say is that if your cancer is well contained with clear margins surgery is not a bad route if you can find a very experienced consultant with good track record. I am sure there are men here who have had other treatments like me are satisfied. Whatever choice you make be confident and travel with hope and I wish you a lot of luck. 

 '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 24 Aug 2023 at 21:01

Hi Mark. It is undoubtedly difficult decision. I had a similar diagnosis to you (Gleason 4+3 & 4+4, T3bN0M0). I was given the options of surgery or RT/HT. I was unsuitable for Brachy. I chose surgery because the MDT favoured that option and I didn't fancy up to three years on HT. Also part of me wanted to be rid of the dammed thing as soon as humanly possible. Like you, I was warned the there was a strong possibility of SRT after surgery and that turned out to be the case.

Any regrets? Maybe some. I had extensive lymphodenectomy with the surgery which led to side effects I was not really prepared for. However one of the 36 lymph nodes removed turned out to be cancerous. On the plus side it does seem to have done the trick. I'm now 10 months post RT and my PSA remains undetectable.

Do make sure you get the opportunity to discuss the options with both the urologist and the oncologist. Also find out whether the surgery will be nerve sparing and whether there will be any lymph nodes removed. Not all surgeons favour it.

User
Posted 24 Aug 2023 at 21:21
I was also finally diagnosed as Gleason 4+5 T3bN0M0 and had my RARP on May 12th. Post surgery PSA was <0.01 so far so good. Whether I will need salvage RT in the future remains to be seem but it's an option.

But there are side effects - incontinence (now very minor) and permanent ED (but we have other solutions for bed time LOL) so you need to be sure that you can handle these.

Best of luck!

User
Posted 27 Aug 2023 at 14:53
RT is the conservative option for your stage Marky1.

Having had RP myself along with a load of life threatening complications I still take comfort from knowing I don't have a prostate to worry about.

So RP is the radical option BUT post OP you would at least have the comfort (or not) of knowing the exact extent of your cancer in the prostate and seminal vesicles.

You would also post OP know with some certainty if they have got it all.

Hopefully the PSMA scan will help guide your treatment but with that 5 and T3B you should not be hanging about waiting for scans.

User
Posted 27 Aug 2023 at 20:03

Hi Mark, In answer to your question, I had my surgery at a private hospital in Worcester. The only reason I went private was because the NHS was unable to commit to any date for surgery because of a large waiting list. They were talking about several months. 

Knowing what you know now would you still have had the RP?

I would still have gone for RP but I would have tried to get a PSMA PET scan before the op. That would have hopefully picked up the Lymph node tumour which could have been separately zapped with a focal treatment and avoided the extensive lymph node removal. 

User
Posted 27 Aug 2023 at 20:37
Water under the bridge now Chris and a 'what if?' but I think you meant local such SRT rather than focal as this would not extend to a node, your Prostate having been removed. As a point of interest, when it was thought I had cancer in an iliac node they wouldn't attempt HIFU and I even checked this with a Focal Prostate specialist clinic in Germany. However, a PSMA scan I paid for showed no cancer in the node but a small tumour in my Prostate, so they did then carry out another HIFU.
Barry
User
Posted 29 Aug 2023 at 13:29

Originally Posted by: Online Community Member
On the other hand, if the cancer is not contained, dealing with "anything else" afterwards is most probably going to be a less effective option than choosing RT initially where one process will take on the whole problem, possibly with additional hormone therapy.

Jules

Do you have any evidence of this being the case, or is this just your opinion?

I've never come across this statement before which is why I ask.

Thanks

User
Posted 30 Aug 2023 at 18:18

Mark, in the meantime you’d probably be put on HT. I was told I would be on it for life if it came back, but I’m not just going to accept that if it happens, I will be searching around for a second opinion.

Hope you get your scan result soon, things might become clearer then.

Derek

User
Posted 30 Aug 2023 at 18:32

Originally Posted by: Online Community Member
I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.

What happens in tbe mean time??

Sounds like it's time to realise you're not immortal. The great philosopher Lemmy Kilmister wrote a treatise on this topic called "The Ace of Spades" which he set to music.

https://m.youtube.com/watch?v=PMavhk16FJU&feature=shared

If you can't hear the words.

https://genius.com/Motorhead-ace-of-spades-lyrics

 

Dave

User
Posted 30 Aug 2023 at 21:34

Originally Posted by: Online Community Member
Thank you both for your views.
I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.



Try to be more positive that the treatment will work Mark. I know it can be difficult but there’s really no reason why your primary treatment won’t. 

We’ve made some positive lifestyle changes too, this helps us focus on how to generally be healthier and keep feeling well. Life can still continue and be good even when living with cancer….you just have to believe it and try to enforce it. (I know it’s easy for me to say but I take this stance with rob) 

I honestly think you’ll feel better when you get the scan results. If you’re struggling maybe try and contact them to tell them this and hopefully they could get the results to you asap 🤞🏼

Keep strong, things will be ok x

User
Posted 31 Aug 2023 at 12:40
That's fantastic news Mark and hopefully gives you a sense of relief.

Now you just need to decide which treatment is best for you. I know what I would choose but every decision has to be a personal one, taken with the input and support of your family members.

Best of luck with whatever you decide and know that we are here to support you and many of us are walking the same path.

Steve

User
Posted 31 Aug 2023 at 21:05

Great news indeed Mark and I suspect you have already decided which treatment is best for you. I look forward to hearing what your decision is…once you’ve made it you will feel much better and can start to plan for the future.

all the best with your decision.

Derek

User
Posted 31 Aug 2023 at 23:47

Excellent news Mark. You can breather easier now as you move on to the next bit.

Jules

User
Posted 05 Sep 2023 at 18:47

If you decide to go for RP make sure that the consultant has had a lot of experience. I don't know about other treatments but in my case, because I had private health insurance,  I was able to pick a top guy who had performed about 60 robotic procedures (that was a lot in in 2011). In my case the surgery turned out to be rather complex and difficult, lasting over 6 hours. However I did come through with very good outcome. That was 12 years ago. You are in a good position, whichever route you take; there is a lot more experienced consultants out there. Good luck.

 '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 05 Sep 2023 at 21:15

Gleason score 3+4, 4+3. I had prostatectomy 12 years ago. I am afraid at that time information I was given was very limited, in spite of the fact that I had private treatment. The most important thing my very friendly and kind consultant said to me was 'I am delighted to tell you that your cancer is well contained with ample margin. If you decide to choose prostatectomy I will be more than happy to treat you'. So he was happy and I was very happy and lucky! I am amazed how much information patients are given now. A good thing but I guess it can be confusing without detail discussion.

 '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 06 Sep 2023 at 15:57

Hi Mark

 

I was diagnosed last week, and after a lengthy conversation with my Urologist I am opting (I think) for surgery. She said there is "quite a lot" of cancer in there, even though it is luckily still contained, so I want it gone. We did discuss RT or Brachy, but I was told that after one lot of treatment via either route, it wouldn't be possible/advisable to repeat if it comes back. At least with surgery, if there is a future issue it can be attacked with RT etc.

I am aware of the side effects that can go with surgery, but at 59 I am willing to tolerate them in order to be rid of this thing (hopefully).

Just waiting for a meeting with the surgeon to discuss, so nothing concrete yet, but I can't see me changing my mind.

Good luck with whatever option you choose. I am sure we will be updating each other via this forum!

Take care. 

Ian.

User
Posted 06 Sep 2023 at 16:00

As a footnote, I'll close with a comment I made off the cuff last week, which made my wife smile (for the first time in a while)

"You've got to be alive to p**s yourself"

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 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 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 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 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 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 05:57

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

Jules

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 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 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 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 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 20:10
Very best wishes for a rapid recovery, Mark!

Chris

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 06 Nov 2023 at 19:33
Hi everyone,

So first post op PSA and it’s 0.14 which is a little disappointing.

I know I had one node involved but was hoping that I would be undetectable for a good few months.

Can anyone give me some info on what I can expect next please.

I’m having another test in 4 weeks to see where the PSA then.

Thanks

Hope everyone is doing well and saying strong

Best wishes

Mark

User
Posted 06 Nov 2023 at 20:08

Sorry to hear that Mark, I’m sure there are many on here who are more qualified to give you advic.

User
Posted 06 Nov 2023 at 21:33

Sorry to hear - that’s  really tough so early on. Can only hope the next reading stays the same or even improves. Think we might be close behind given my OHs lymph node involvement. Good luck x

User
Posted 04 Dec 2023 at 11:40

Hi all,

so latest PSA is 0.32 which is disappointing.

Was hoping for some time before I needed SRT. 

Not sure what I’ll be offered as waiting to see onco.

Any advice would be very welcomed.

im pretty gutted to be honest.

Hope everyone is doing ok.

rRegards

Mark 

User
Posted 04 Dec 2023 at 13:26

Not good news Mark. I've been there and I know what it feels like. Yours seems to have doubled in the four weeks since your first post op PSA. It is getting to a level where something might be detectable with a PSMA PET scan but Oncos all seem to have their own magic number that triggers a referral. The big question is, is it just confined to the prostate bed or is it in another node? I had my PSMA PET scan performed when my PSA would have be around 0.4. It didn't pick up any hotspots, although it did seem to indicate I have an arthritic spine (that comes as no surprise). My Onco decided just to do SRT on the prostate bed (educated guess). It's now over a year since SRT and so far so good. However PSA test is due next week 😬. Good luck with your journey.

User
Posted 04 Dec 2023 at 18:39

Thanks for the reply Chris.

It is quite demoralising when this happens, especially so soon after surgery.

Im speaking to my onco about a PSMA scan which he is organising for me so will take it from there when it’s done.

its a scary time again too:. Just like when you are diagnosed!!

good luck with your PSA test. Let me know how you get on.

All the best

Mark 

Show Most Thanked Posts
User
Posted 24 Aug 2023 at 16:48

This thread covered a lot of treatments and reasoning behind them. I would start by working your way through it.

https://community.prostatecanceruk.org/posts/t26986-Can-t-understand-why-anyone-would-choose-surgery-over-Brachytherapy--I-must-be-missing-something

 

Dave

User
Posted 24 Aug 2023 at 20:59

Everyone who is diagnosed with prostate cancer naturally wants to know what is the best treatment. The problem is that you will get anecdotal evidence from people who have had treatment. Some will say that they regret their choices but others, like me feel very lucky that I made the right  choice - probably only because I have survived the disease for 12 years, not withstanding the fact that I did not regain 100% continence ( I tend to leak when sexually excited!) and for practical purpose erections were of no use after surgery. My ED was age induced which was made worse by surgery although my nerves were preserved. However, we managed to establish a new normal and with the help of a VED (penis pump) we managed to re-establish our sex life. Surgery was successful (?), recovery was challenging as I had expected but we are leading a good life. The question we ask ourselves is am I cured? I woulds like to think so but no one knows. All my consultant says to me is that my PSA is low enough and stable  and not to think about further treatment. Does that help? All I can say is that if your cancer is well contained with clear margins surgery is not a bad route if you can find a very experienced consultant with good track record. I am sure there are men here who have had other treatments like me are satisfied. Whatever choice you make be confident and travel with hope and I wish you a lot of luck. 

 '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 24 Aug 2023 at 21:01

Hi Mark. It is undoubtedly difficult decision. I had a similar diagnosis to you (Gleason 4+3 & 4+4, T3bN0M0). I was given the options of surgery or RT/HT. I was unsuitable for Brachy. I chose surgery because the MDT favoured that option and I didn't fancy up to three years on HT. Also part of me wanted to be rid of the dammed thing as soon as humanly possible. Like you, I was warned the there was a strong possibility of SRT after surgery and that turned out to be the case.

Any regrets? Maybe some. I had extensive lymphodenectomy with the surgery which led to side effects I was not really prepared for. However one of the 36 lymph nodes removed turned out to be cancerous. On the plus side it does seem to have done the trick. I'm now 10 months post RT and my PSA remains undetectable.

Do make sure you get the opportunity to discuss the options with both the urologist and the oncologist. Also find out whether the surgery will be nerve sparing and whether there will be any lymph nodes removed. Not all surgeons favour it.

User
Posted 24 Aug 2023 at 21:21
I was also finally diagnosed as Gleason 4+5 T3bN0M0 and had my RARP on May 12th. Post surgery PSA was <0.01 so far so good. Whether I will need salvage RT in the future remains to be seem but it's an option.

But there are side effects - incontinence (now very minor) and permanent ED (but we have other solutions for bed time LOL) so you need to be sure that you can handle these.

Best of luck!

User
Posted 24 Aug 2023 at 22:19

Thanks Dave 

User
Posted 26 Aug 2023 at 19:50

Thanks Steve.

have had PASM scan yesterday so waiting on results to see which way I go!

will keep you updated 

All the best

Mark 

User
Posted 26 Aug 2023 at 19:58

Hi Chris,

That is great news for you. Your diagnosis is exactly the same as mine but I am just waiting for the results of a PSMA scan I had yesterday.

Where did you have your surgery?
I have spoken to two consultants, one favours RP and one favours the RT and HM route.

I need to make a decision soon as time is ticking on!

All the best 

Mark  

 


 

User
Posted 26 Aug 2023 at 20:20

Hi Chris,

reading your feed you have had to have SRT which seems to be doing the trick with the PSA.

Knowing what you know now would you still have had the RP?

regards

Mark 

User
Posted 27 Aug 2023 at 14:53
RT is the conservative option for your stage Marky1.

Having had RP myself along with a load of life threatening complications I still take comfort from knowing I don't have a prostate to worry about.

So RP is the radical option BUT post OP you would at least have the comfort (or not) of knowing the exact extent of your cancer in the prostate and seminal vesicles.

You would also post OP know with some certainty if they have got it all.

Hopefully the PSMA scan will help guide your treatment but with that 5 and T3B you should not be hanging about waiting for scans.

User
Posted 27 Aug 2023 at 20:03

Hi Mark, In answer to your question, I had my surgery at a private hospital in Worcester. The only reason I went private was because the NHS was unable to commit to any date for surgery because of a large waiting list. They were talking about several months. 

Knowing what you know now would you still have had the RP?

I would still have gone for RP but I would have tried to get a PSMA PET scan before the op. That would have hopefully picked up the Lymph node tumour which could have been separately zapped with a focal treatment and avoided the extensive lymph node removal. 

User
Posted 27 Aug 2023 at 20:37
Water under the bridge now Chris and a 'what if?' but I think you meant local such SRT rather than focal as this would not extend to a node, your Prostate having been removed. As a point of interest, when it was thought I had cancer in an iliac node they wouldn't attempt HIFU and I even checked this with a Focal Prostate specialist clinic in Germany. However, a PSMA scan I paid for showed no cancer in the node but a small tumour in my Prostate, so they did then carry out another HIFU.
Barry
User
Posted 27 Aug 2023 at 20:42

Thanks for your replies both,

I do really want it out to be honest and deal with anything else afterwards.

I did read an interesting article that said mpMRI often upstage cancer staging especially with seminal vesicles invasion. You can only be sure after a PSMA scan or post surgery. 
My MRI said the disease was bilateral but my biopsy found nothing on the left hand side which was confusing.

Just waiting on the results of the PSMA  scan and I’m hoping and praying it’s all clear with no other disease anywhere else, especially in the bones. I did have a bone scan that was clear so hopefully it’s clear but they aren’t 100% accurate. 

I’ll be straight on it as soon as I get my results back to have the RP probably privately.

thanks again both, anything else you think may help would be gratefully received.

keep well

Mark

 

User
Posted 27 Aug 2023 at 20:46

Very much water under the bridge, Barry and probably best not to dwell on that. I perhaps misused the term focal treatment as I was thinking more the SABR to treat the lymph node

User
Posted 29 Aug 2023 at 03:04

Originally Posted by: Online Community Member
I do really want it out to be honest and deal with anything else afterwards.

Please keep an open mind on your decision Mark. Your first shot is your best shot and if that fails, the follow up treatment is likely to be less successful.

The big distinction is that a prostatectomy can be a clear choice if there's no cancer in the seminal vesicles, or breakout from the capsule. On the other hand, if the cancer is not contained, dealing with "anything else" afterwards is most probably going to be a less effective option than choosing RT initially where one process will take on the whole problem, possibly with additional hormone therapy.

Read the bios of others here. There's some clear examples of poor choice/advice leading to prolonged issues that might not have occurred had better choices been made in the first place.

Jules

Edited by member 29 Aug 2023 at 03:08  | Reason: Not specified

User
Posted 29 Aug 2023 at 13:29

Originally Posted by: Online Community Member
On the other hand, if the cancer is not contained, dealing with "anything else" afterwards is most probably going to be a less effective option than choosing RT initially where one process will take on the whole problem, possibly with additional hormone therapy.

Jules

Do you have any evidence of this being the case, or is this just your opinion?

I've never come across this statement before which is why I ask.

Thanks

User
Posted 29 Aug 2023 at 22:23

Steve,

in my case and I've seen and heard of it in others here, once my urologist knew that there was some level of breakout from the prostate, he wasn't willing to go ahead with a prostatectomy because there was a fair chance something would be left behind and in consequence he believed that RT was a better option. In retrospect I think it was a wise decision. I'm confident in saying that many urologists will take the same position, though I realize that some are willing to do surgery knowing that the cancer is not contained.

I know there's a tendency to think that once the prostate is out it will solve the problem and if the cancer is contained that's a fair call. If the cancer is not contained, with clear margins the story gets more complex and if it gets into the lymphatic system, it's on a railway line to the rest of your body where progress is unpredictable. In that case the prostate itself is not so much the issue as the spread, which is the real killer.

My own path ... G9, high risk locally advanced, T3bN1M0, cancer in 3 lymph nodes, RT and HT 2 years ago, now psa <.01 and no residual issues of any sort. If I'd been offered a choice I probably would have gone with a prostatectomy and follow up but in retrospect I'm more than happy I had to go RT/HT. Now, I take the position that it makes more sense to go through the process once, with a good chance of a "curative" treatment than to have to return for more scans, more treatment and possibly lifetime HT. I think we all tend to downplay the seriousness of PC, as a coping strategy, but it can be to our detriment when we're deciding on treatment options.

Steve, you're asking me why a prostatectomy followed by an RT clean-up is not as good as starting with RT and I don't know the answer, though I have read here in a number of threads that your first chance at treating cancer is your best chance and the probability of success reduces with subsequent treatments.

At this stage Mark is dealing with conflicting opinions from "consultants". Post scan results this might change and I hope that the consultants involved are representing both surgical and radiotherapy opinions.

Jules

 

 

 

 

Edited by member 30 Aug 2023 at 07:55  | Reason: Not specified

User
Posted 30 Aug 2023 at 13:21
Thanks Jules

In my case my G7 all contained led to my RARP and that became a T3bN0M0 on the lab table with it not being fully contained. Post RARP PSA was <0.01 but it's now a waiting game to see whether I need RT and/or HT down the road.

I don't know whether the surgeon would have done the RARP if she had known the complete diagnosis beforehand - it reinforces the argument that the MRI and Biopsy is only a guesstimate until it ends up being sliced up in the lab.

My urologist seemed pretty certain that post RARP RT would be very successful if it was needed - but I guess it comes down to the individuals situation - there is no 'one size fits all'.

Cheers

Steve

User
Posted 30 Aug 2023 at 17:06

Originally Posted by: Online Community Member
it reinforces the argument that the MRI and Biopsy is only a guesstimate until it ends up being sliced up in the lab.

Quite so Steve. Mark might have the advantage of the PSMA scan to inform him better. I know I would have been stuffed without a PSMA-PET scan which showed up my 3 lymph node mets. Had they not been picked up when they were I could easily have been in deep trouble by now.

Jules

User
Posted 30 Aug 2023 at 18:12
Thank you both for your views.

I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.

What happens in tbe mean time??

Still waiting on the PSMA Pet scan result.

Will keep you updated..

Thanks again, keep well

Mark

User
Posted 30 Aug 2023 at 18:18

Mark, in the meantime you’d probably be put on HT. I was told I would be on it for life if it came back, but I’m not just going to accept that if it happens, I will be searching around for a second opinion.

Hope you get your scan result soon, things might become clearer then.

Derek

User
Posted 30 Aug 2023 at 18:32

Originally Posted by: Online Community Member
I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.

What happens in tbe mean time??

Sounds like it's time to realise you're not immortal. The great philosopher Lemmy Kilmister wrote a treatise on this topic called "The Ace of Spades" which he set to music.

https://m.youtube.com/watch?v=PMavhk16FJU&feature=shared

If you can't hear the words.

https://genius.com/Motorhead-ace-of-spades-lyrics

 

Dave

User
Posted 30 Aug 2023 at 19:06
Thanks Derek.

This waiting is awful .. I’ve got so much love and support around me but it’s still a lonely place. I’ve been advised that I may need something to help me deal with the anxiety.

Any recommendations as I’m all over the place!

Regards

Mark

User
Posted 30 Aug 2023 at 21:34

Originally Posted by: Online Community Member
Thank you both for your views.
I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.



Try to be more positive that the treatment will work Mark. I know it can be difficult but there’s really no reason why your primary treatment won’t. 

We’ve made some positive lifestyle changes too, this helps us focus on how to generally be healthier and keep feeling well. Life can still continue and be good even when living with cancer….you just have to believe it and try to enforce it. (I know it’s easy for me to say but I take this stance with rob) 

I honestly think you’ll feel better when you get the scan results. If you’re struggling maybe try and contact them to tell them this and hopefully they could get the results to you asap 🤞🏼

Keep strong, things will be ok x

User
Posted 30 Aug 2023 at 22:05

Hi Mark,

When I started HT it brought on dreadful anxiety …I just couldn’t function at all. It got better as the day went on but I was in a really bad way. I remember a trip to Arran with my son and 2 lovely grandsons and they just couldn’t understand why I wasn’t able to join in the fun….it was one of the saddest days of my life so I decided to do something about it. I had heard sertraline had helped various members on here and my sister-in-law has also been taking it for anxiety. I contacted my GP who put me on a low dose…it takes a few weeks to get into your system but it has made a HUGE difference to me…I can now deal with most things that are thrown at me on this journey. I do still have a few ‘down’ moments but generally am able to get on with my life. I would normally try and stay away from anti-depressants but I thought to myself ‘I’ve got at least 3 years of this treatment and I want to have some QOL’ ….Sertraline has certainly given me this.

Oh, and Maggies has also been such a help to me, I always feel better when I come away from meeting the other guys there.

Im sure once you have your results and made your treatment choice you will start to feel better…you are right, the waiting is the worst….I was like a bear with a sore head waiting on the results of my last PSA test…it was so important to me as it was the first following RT.

All the best…and stay strong💪💪💪

Derek

User
Posted 30 Aug 2023 at 22:32
Hi Derek,

Thank you so much for the reply. Two friends have mentions this drug and my wife has encouraged me

Ask the Doc for some.

I get so down in the mornings I can’t get out of bed.

When I read things on the internet it completely depresses then I get in a very dark place. I know I’m putting pressure on my family too when I’m like this because they worry about me more.

I will try and get some from the Doc and hopefully it will help.

Thanks again Derek.

Replies are so much appreciated

Take care

Mark

User
Posted 31 Aug 2023 at 12:31
Hi all,

Just had results back from PSMA scan and it’s all clear.. no metastatic disease so I’m so relieved.

Just need to choose my treatment path now.

Will keep the feed updated!

Keep well everyone

Mark

User
Posted 31 Aug 2023 at 12:40
That's fantastic news Mark and hopefully gives you a sense of relief.

Now you just need to decide which treatment is best for you. I know what I would choose but every decision has to be a personal one, taken with the input and support of your family members.

Best of luck with whatever you decide and know that we are here to support you and many of us are walking the same path.

Steve

User
Posted 31 Aug 2023 at 21:05

Great news indeed Mark and I suspect you have already decided which treatment is best for you. I look forward to hearing what your decision is…once you’ve made it you will feel much better and can start to plan for the future.

all the best with your decision.

Derek

User
Posted 31 Aug 2023 at 23:47

Excellent news Mark. You can breather easier now as you move on to the next bit.

Jules

User
Posted 05 Sep 2023 at 16:04
Hi everyone,

Just on way back home from another oncology consultation.

The oncologist who was extremely nice and informative has recommended HR, Brachytherapy then high dose of external RT.

So not sure what I do.. surgery or the above..

All thoughts gratefully received

Hope everyone is staying positive and strong unlike me!!!💪

Mark

User
Posted 05 Sep 2023 at 16:58

Hi Mark,

Glad it went well. The only advice I can give you is to find someone neutral to speak to who can help you rationalise the options and allow YOU to make your own decision.Your Clinical Nurse Specialist(CNS) would be my first port of call, or one of the Specialist Nurses on here, or find a support Organisation such as Maggies.

In Scotland you wouldn’t be given the option of surgery but that doesn’t mean you shouldn’t choose that route.

Once you’ve made your decision it will be easier, but don’t look back and wonder if you’ve done the right thing, look to the future and getting this disease knocked on the head!

Good Luck!

Derek

User
Posted 05 Sep 2023 at 17:11

Hi Mark, I had the same treatment, all good so far. Would you also have HT with the brachy? I had two years of HT, I was OK with that, but there are plenty on here that don't like it.

Dave

User
Posted 05 Sep 2023 at 17:23
Did you discuss RP with the oncologist or did you just ask for their recommendation? Did they discount it or was it that they preferred the RT route?

I don't think there is any 'right' answer - my biopsy result was G7 but ended up on the lab bench as the same as yours G9 (actually 4+5 rather than 5+4) T3bN0M0 and my post surgery PSA was <0.01 but I am on 3 month PSA tests. I don't know what advice I would have received if I had had the G9 diagnosis before the surgery.

Mentally I am happy to have had the mothership out of me - but as to what happens in the future, I don't know although there are still plenty of RT/HT options.

The RP side effects are well documented so you should be fully aware of them before you make any decision.

The best of luck moving forward!

User
Posted 05 Sep 2023 at 18:24
Thanks Guys,

Oncologist didn’t dismiss the surgery but was more keen on his treatment path.

The brachytherapy wold be HDR so would like to hear from anyone who’s had this.

Yes I would have HT first before the Brachytherapy.

It’s very confusing now as I was all set for surgery!

Best wishes

Mark

User
Posted 05 Sep 2023 at 18:27
Dave,

What brachytherapy did you have?

What was your staging and G score?

Mark

User
Posted 05 Sep 2023 at 18:37
I’m looking for a plan b if the first attempt fails.

Onco told me if I have surgery then radiation for SRT isn’t as powerful due to the surgery.

What if there are micro mets in my body and I have surgery?

What happens when the HT stops working or I have relapse after the ratio therapy route?? What are the option? Is that it??

User
Posted 05 Sep 2023 at 18:47

If you decide to go for RP make sure that the consultant has had a lot of experience. I don't know about other treatments but in my case, because I had private health insurance,  I was able to pick a top guy who had performed about 60 robotic procedures (that was a lot in in 2011). In my case the surgery turned out to be rather complex and difficult, lasting over 6 hours. However I did come through with very good outcome. That was 12 years ago. You are in a good position, whichever route you take; there is a lot more experienced consultants out there. Good luck.

 '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 05 Sep 2023 at 18:50

I was started on HT for two years. Six months in I had one session of HDR brachy with a general anaesthetic, then 15 fraction of EBRT starting a week later. 

Aged 53, I was diagnosed G4+5, T3 Extra capsular extension, PSA 25. 

Surgeons were not interested in treating me, if I had a relapse it would have upset their statistics. I don't think anyone keeps statistics on radiotherapists so they were happy to have a go.

Very few treatments are possible post RT, however as HDR is confined to the prostate and doesn't do much damage outside the prostate and the EBRT is only given at half strength, it maybe possible to have more RT (I have no evidence for this).

Old Barry had HIFU many years after RT. This would only be possible if the new tumour was in exactly the right position.

Five years on my PSA is <0.1, but as discussed on another thread, you need to look at statistics not just one person's good or bad luck.

Dave

User
Posted 05 Sep 2023 at 18:59

Both your staging and your Gleason are high risk. With this, micro-mets (mets too small to show on scans) in the area around the prostate, seminal vesicals, and lymph nodes must be a possibility too. I would be looking to hit it hard first time.

If your hospital offers HDR boost, I would ask if they think it's suitable. This is a radiotherapy combination where about half the dose is given using HDR brachytherapy to prostate and seminal vesicles, and the other half is given using external beam radiotherapy to same areas, but also including area around prostate and pelvic lymph nodes at a lower dose. This puts a higher dose into the prostate than can be achieved with external beam radiotherapy alone (prostates handle high doses well), but also aims to mop up any micro-mets in the most likely places, i.e. just around the prostate and in the pelvic lymph nodes (at a lower prophylactic dose). This will come with a period on hormone therapy too, probably at least 2 years. Although this hits the cancer hard, the side effect profile is not usually excessive.

I had this treatment although my diagnosis wasn't as high as yours. I'm very happy with the outcome, but there are no guarantees of course.

Edited by member 05 Sep 2023 at 19:05  | Reason: Not specified

User
Posted 05 Sep 2023 at 19:37

Hi Pretab,

Thanks for your reply.

can I ask what your staging and Gleason score please.

Thanks

Mark

User
Posted 05 Sep 2023 at 19:37

Sorry Pratap

User
Posted 05 Sep 2023 at 21:15

Gleason score 3+4, 4+3. I had prostatectomy 12 years ago. I am afraid at that time information I was given was very limited, in spite of the fact that I had private treatment. The most important thing my very friendly and kind consultant said to me was 'I am delighted to tell you that your cancer is well contained with ample margin. If you decide to choose prostatectomy I will be more than happy to treat you'. So he was happy and I was very happy and lucky! I am amazed how much information patients are given now. A good thing but I guess it can be confusing without detail discussion.

 '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 06 Sep 2023 at 00:24

One can consider the pros and cons of various treatments but this should be vary much related to the individual patient whose considered views should also be part of decision making. As in this thread, even with all the information available to different Consultants they may advocate a different way of treating an individual patient.

Maybe a patient would like the views of a number of Consultants on his case and be persuaded by a majority view but this is not practical. Perhaps it might help to some extent to read what several Consultants say on the subject of Surgery v Radiation. Only this evening I came across a video on this subject where some interesting points were made and I was going to post as a separate thread but feel it might be useful here. https://www.youtube.com/watch?v=ryR6ieRoVFg

 

Edited by member 06 Sep 2023 at 00:24  | Reason: to highlight link

Barry
User
Posted 06 Sep 2023 at 02:16

Compelling Youtube clip Barry!

Jules

User
Posted 06 Sep 2023 at 09:38

Originally Posted by: Online Community Member
Maybe a patient would like the views of a number of Consultants on his case and be persuaded by a majority view but this is not practical. Perhaps it might help to some extent to read what several Consultants say on the subject of Surgery v Radiation. Only this evening I came across a video on this subject where some interesting points were made and I was going to post as a separate thread but feel it might be useful here.

It should be noted that clinician has been anti-surgery for a long time. That's a newer video than he used to have on the topic. I thought the old one was quite biased and unbalanced, but this one is better. It doesn't address the issue of very young men being diagnosed which I think introduces some additional considerations.

User
Posted 06 Sep 2023 at 11:46

Old Barry

I could not agree more. Men who have just be diagnosed come to this site and others to find the best treatment available - there is no such thing. we should encourage them to think about what is the most appropriate treatment for them. I am very lucky that I had a very successful prostatectomy but make sure that there is no bias in my response. 

I also warn newly diagnosed men that consultants can be quite biased;  this was my personal experience. Also there are private clinics, particularly one in London, kept ringing me up because I had made an enquiry. 

 '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 06 Sep 2023 at 12:28

Great video, thanks Barry.

even more confused now!! 😫😫

User
Posted 06 Sep 2023 at 15:57

Hi Mark

 

I was diagnosed last week, and after a lengthy conversation with my Urologist I am opting (I think) for surgery. She said there is "quite a lot" of cancer in there, even though it is luckily still contained, so I want it gone. We did discuss RT or Brachy, but I was told that after one lot of treatment via either route, it wouldn't be possible/advisable to repeat if it comes back. At least with surgery, if there is a future issue it can be attacked with RT etc.

I am aware of the side effects that can go with surgery, but at 59 I am willing to tolerate them in order to be rid of this thing (hopefully).

Just waiting for a meeting with the surgeon to discuss, so nothing concrete yet, but I can't see me changing my mind.

Good luck with whatever option you choose. I am sure we will be updating each other via this forum!

Take care. 

Ian.

User
Posted 06 Sep 2023 at 16:00

As a footnote, I'll close with a comment I made off the cuff last week, which made my wife smile (for the first time in a while)

"You've got to be alive to p**s yourself"

 
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