Removal or radiotherapy

Well it looks like my prostate cancer has moved up a notch and has spread (although apparently still contained within the prostate): I now have a Gleeson of 3+4 so still at a manageable point.
I have been presented two options by my urologist: 5-day radiotherapy to blitz the whole prostate or removal via da Vinci robot procedure. I have started consultancy appointments to discuss these options further. I appreciate that both options have pros and cons, side effects and life changing impacts. I would be very interested in hearing if others have faced a similar situation: the choice you made, your experience of the treatment and any post procedure findings. I have to say that it is quite a unique thing to be able to post such a request on this forum!

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I am sorry to read your cancer has gone up a notch. Have you looked at the Macmillan Website for info? They are usually a good source of information, well they were for my cancer. Macmillan also has forums for many types of cancer where you can discuss issues around treatment and after effects with others who have gone through or are going through treatment.

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Paul - no personal experience but Prostate cancer has affected my close family. It’s a subject that is not discussed enough given the forum demographic and the chances of developing this form of cancer !

All the very best with whatever treatment you decide on.

James

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Thanks Paul, I am in research mode at the moment so thanks for the helpful pointer!

Thanks James, this was one of the reasons why I thought that I might get some feedback (or to get a conversation going) by posting here. This was the cause of my dad’s passing which is why I am taking this seriously.

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Paul, I am sorry to hear your news. I was where you are almost one month short of 5 years ago. I had to wait five months for surgery even though the MRI showed it was locally advanced. They took out the nerves on the one side, which is not good for ****ile function!

With my 5 year test due soon the previous ones have been zero.

I think you need to think very hard about choices. I would say that surgery before it gets advanced offers a cure, which afterwards the surgeon said to me he expected even though initially they though it was locally advanced. I had a bone scan as well because they won’t operate if it has spread.

Radiotherapy in general is a one way route. It does work.

Our relationship is as strong as ever as we learn different ways to comfort each other. This is incredibly important. Don’t be afraid of that downside of surgery.

Phil

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I went through a similar set of choices back in 2019 although things were somewhat complicated by the fact that I take an anticoagulant.

I found the radiotherapy consultant a much more engaging and reassuring individual than the surgeon. That and avoiding surgery with the blood thinners complication swayed my decision.

My radical radiotherapy was each weekday for four weeks so not exactly comparable to what’s been offered to you.

The procedure itself is totally painless and takes only a few minutes per session. However, the bladder has to be full and the bowel empty when the prostate is zapped so I had to spend a while beforehand doing the prep (mini enema and a couple of pints of water.

The fun starts if there is a delay with the machine. You end up searching for an elastic band to hold back the flood. :smile:

I guess I was lucky in that I seemed to experience few side effects other than extreme tiredness towards the end and problems peeing which was eased with medication.

I would echo what’s been said about McMillan nurses. They truly are wonderful and will talk you through all your anxieties.

Three years on and my PSA test results are low (0.14) and have been falling for the past two tests. My waterworks are normal and probably better than for several years.

I would strongly encourage male forum members approaching 60 to get a PSA test. Probably saved my life.

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I’m so sorry Paul, I meant to say at the end of my last post that I wish you well with whichever choice you make and am rooting for you.

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Many thanks for your story Phil, it is really appreciated! Yes, there is some serious thinking going on at the moment: the removal appears to be the most basic, hopefully sorting things approach but with obvious impacts. I think your comments regarding the relationship is such a valuable one; luckily I have a wonderful partner and she is with me all the way on this.

Paul

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I am also pleased that your results are good and that this has worked well for you!

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Many thanks Badger. and thanks for another recommendation for the MacMillan nurses. I must admit that this route did have some appeal; it appears less invasive, the sessions can be easily managed in the day - my only concerns are the possible bowel side effects and the slight risk that by following this route that surgery then becomes a little more tricky (not impossible) if needed. On the other side of the scales is the removal which sort of blitzes the situation. I love your elastic band requirement! fingers crossed that if I follow this route that the machines are up & running!
I am really pleased that this option has worked for you and that your scores are now so low - also that you experienced less of the side effects.

Paul, There is absolutely no reason to worry about that! I won’t go further here.

Phil

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Paul,
I’m sorry to hear about it and thanks having the courage to share it here. Unfortunately it seems men still find it hard to talk openly about it.
I wish you all the best with whatever treatment you chose.

ATB
Tony

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Hi Paul

You are correct that there are options available to you, though I would suggest that your specific details will have been discussed at a urology/prostate cancer MDT (multidisciplinary team meeting) with members of all relevant professions from surgeons, radiologists to oncologists present.

Make sure you ask relevant questions from all potentially concerned with your treatment as informed patient decisions are essential for treatments in this day and age.

Best Wishes

AC

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Thanks Tony…

Many thanks AC, wise words & advice appreciated; .there is a lot of talking/consulting still to be done. My urologist is the consultant surgeon and he & the consultant radiologist work hand in hand which is good. Thanks once again.

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Best wishes to you Paul.

Only this morning I read an article in The Times which interviewed Jools Holland about his prostrate cancer, and he went down the radiotherapy route. It also mentioned that Elton John went for removal. Both appear to be thriving.

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Paul,
I have come through the process.
Was diagnosed 5 years ago and best solution/clinical advise for me was surgery and removal on prostate.
Consultant offered option of keyhole surgery or robotic, but robotic option was only available on private basis (Ireland).
He also genuinely advised that process and outcome were the same for both and he admitted robotic was a “boys with toys” thing.
I had the keyhole removal and all was fine and painless.
Now reached 5 year anniversary and totally clear since the operation.
The waterworks have been a challenge but improving, and hey, least of my worries compared to other possible outcomes.
Other personal side effects still being managed, but life is good.
Linking the story back to hifi, the process made me re thing the important things in life. Resulted in me selling the 552/500 set up and being happy with the lower level stuff.

Hope all goes well for you

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Similar story to @badger1954, last year but without the anticoagulant. 20 days radiotherapy which was no trouble, PSA now v low. I was put off surgery by possibly side effects and because keyhole wasn’t an option.

The worst part of my treatment was the anti-testosterone drug Prostap 3 which caused regular hot flushes 24/7, not to mention loss of libido. These side effects lasted for several months after my last injection but I feel fine now.

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See my first post. They talked about 40 days (8 weeks) radiotherapy for me and two years of hormone treatment. Surgery was an easy choice with the risk that if PSA didn’t go to zero I would still need radiotherapy.

I do known one person who took the surgery risk and was not as lucky. I also know a choir member who went for radiotherapy and two years hormone treatment and ended up with bladder cancer (not implying a connection). Sadly he died a year ago.

I recommend lots of exercise and even managed to walk from Pamplona to Santiago de Compostela a year after surgery to raise £5k.

Now I need to get fit again!

Phil

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