I am writing this as I recuperate from robotic RP surgery yesterday, and await what will hopefully be a good news PSA result in about 6 weeks time.
Surgery was such a hard decision, but it was the right one for me, and I think I went into it eyes wide open. I know the hard work is not over, that's just about to start on my part as I work towards a return to continence and sexual function.
For me quality of life decisions were foremost and the loss of libido that accompanies hormone therapy, as well as the weight gain and hot flushes was enough to put me off the HT RT route.
Ultimately, it's a numbers game. X% of men recover continence in Y months/years. W% of men recover natural erections in V months/years with nerve sparing surgery, which I was lucky enough to have(right side only)
I was also mindful of the fact you can treat incontinence with artificial sphincters in the worse case scenario, and of course, there are numerous treatments and devices to help manage ED. None of those ED restorations would be any good if you no longer have any libido or sexual desire.
As a youngish, otherwise healthy 62 year old who enjoys a sex life, I figured my best chances were with surgery. And yes, I did look at HIFU, brachytherapy, etc, etc, as championed by those with the resources to go private or fortunate to have an NHS authority that offers them.
My surgeon told me on the day of surgery that my water pipe was slightly shorter than the average 14-15 mm so puts me at higher risk of incontinence. Statistics again! I wonder if he was also preparing me for having a shorter penis, which he had told me previously, though pointed out that erect length wouldn't change. As my penis is currently with catheter and all scrunched up, it's hard to verify that.
On thing I didn't expect was incredibly painful bloating, the day after surgery. I mean totally incapacitating. Never experienced anything so painful. This is the result of pumping your abdomen full of CO2 in RARP. The other gentleman who also had surgery yesterday, seemed to have only mild problems, so every case is different. My relief on finally opening my bowels after about 10 hours and producing three magnificent farts was palpable.
A slight twist in the tale is worth sharing. I was asked to take part in a Phase I chemo trial, which I did. It was called Ascertain, and is a window trial that starts exactly three weeks before surgery. If successful, the two drug combination of Darolutamide and Saruparib could be given in future to delay and improve surgical outcomes. One of the tests in the trial is PSA, and I couldn't help noticing in the impressive results. Mine dropped from about 21 to 2 in three weeks. And with very mild side effects.
It's a great reminder that cancer research is continuously evolving and the tough choices we have today, are better than our fathers would have had, and our sons will likely be better than ours. How long before we see a national screening program, or a vaccine for prostate cancer? Not as long as you may think.
I wish everyone the best in their PC journey!
I hope that you have the easiest of recoveries, and that the trial is successful for you.
A really rational assessment leading to strong optimism.
It seems to me that there a good chance you have already beaten this disease on the mental level, and may already be beating it on the physical level.
Keep on keeping on.
Steve
Changed, but not diminished.
What a great post!
I had a similar positive surgery experience, as you said the state of research today gives us amazing opportunities compared to my father’s experience 25 years ago. And although I hope they never experience it, my son’s should have even better options if it happens to them.
I can relate to the gas thing. I know the poor nurse in the recovery room had to put up with me continuously banging on about needing to poo or fart while I was drunkenly come round. He was very patient! And in the night the guy in the next bed - who had RP in the morning (I was afternoon) - let out a massive fart at around 1am and we both cheered .
I was dry at night immediately after catheter removal and pad free after 9 weeks - pelvic floor was my saviour! Incontinence can be an issue, but as you said it is X%, hopefully you are in the Lucky side like me.
The desire side didn’t go away for me (my reasoning was similar to yours - I couldn’t face the idea of HT, hot flushes, loss of libido, loss of energy, etc) and I had one sided nerve sparing too. Still no real spontaneous erections after 5 months - just a little twitching and reaction, BUT the vacuum pump is bloody marvellous! Things are the almost same as before with some manual faffing, and the feelings are very similar (dry is a bit odd at first, but you get used to it).
I really hope your recovery carries on well! My profile has a bit of an early history of my first few weeks if you fancy a boring read. All the best wishes!
Rob
Thanks for this post. I am due for surgery on Aug 20 and like you have read numerous posts about it. Lots of positives ones but then the odd bad one gets you down. I am a bit like you, I didn’t want ht and rt and decided that surgery was the best option mentally for me. I started this journey in late march and while I know it’s not over yet, I’m hopeful that I am in the latter stages of it The waiting for results has been the hardest for me Thanks Simon
Hi Simon,
There's a lot of noise out there, and if you're like me, you'll have doubted your decision many times over, but only you can know that it is the right decision for you. The mental health aspect is an important component and I knew that with my history of anxiety and depression I didn't want a prolonged treatment pathway. It has been a 10 year journey for me, since my first elevated PSA test to my surgery on Tuesday.
Like you, the waiting has been the killer for me. The constant grey cloud on the horizon obscuring your future and not letting you get on with life.
I wish you well with your surgery. It has been a lot tougher than I expected, probably because I've never had any major surgery, but each day and part of day is getting incrementally better.
All the best.
Good luck with your surgery, Nick.
You're going to have some tough days, but it will get better each day, as you realise there are more and more things that you can do. My big achievement today was getting out of bed on my own. Yesterday I had zero strength in my abdominal muscles. I think this afternoon the bloating has finally gone. Hurrah!
Hi All
What a positive set of posts! I had my surgery 7 months ago, for exactly the same reasons as you, and have certainly not regretted it. I was back to feeling normal very quickly afterwards, especially once my catheter was out. I have now had three PSA tests below 0.01 and whilst I still have ED issues, as others have said, the pump comes in very useful. I have just had my dose of Tadalafil increased from 5 to 20mg and that too has made a positive impact - still a way to go but heading in the right direction!
Good luck to all of you with your impending surgeries and wishing you all a speedy recovery.
Cheers
Dave
Thanks Dave. Good to hear your story.
Day three and I'm coping ok with the catheter, but the bloating and muscle cramps have been hard to bear. Yesterday was wind day, today is whiplash day; it feels like I've been in a car wreck. The area around my 6 surgical wounds are turning blue black, so that fits the metaphor!
I had no idea how much you use your abdominal muscles, even for little things like clearing your throat, which causes a small tug on your belly. Even lifting a kettle to make a cup of tea is beyond today's skill set. And as for putting on the Kevlar surgical stockings after a shower, that is a Herculean feat of strength that even challenges my wife, as there's no chance I can do it! It's quite humbling to be totally dependent on your partner. In sickness and in health, and all that. Makes you very appreciative of them as they are taking on all the heavy lifting, literally.
My head has not yet registered what three medical people have said to me. Take it easy- you've had major surgery!
All the best.
Stewart
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