Another one bite the dust

All three of them had what’s called biochemical recurrence within a few months after surgery, and had to undergo radiotherapy to kill off the remaining cells. Should they have gone with RT in the first place?

This is hardly a scientific survey with a cohort of just four, but we are all doing fine now, and you might see one of us in the Royal Box at Wembley tonight. I will be watching at home…

Cheers, John.

A quick update: I have now spoken with both surgeon and oncologist. Both steered me towards surgery (RP) because of my age and relative good health. The oncologist is thinking along the lines of: "you would be expected to live 20+ years and in that timeframe, you are likely to suffer from long-term side effects from radiotherapy". Similar story to what @Alex_cycles mentioned...

I did talk about HIFU with the oncologist and urologist but both were dismissive. They were not convinced it would remove the cancer in my case, merely delay RP or RT by a mere few years at most... I guess it's because the cancer is in both lobes and it would be difficult to eradicate it completely? The urologist also mentioned risk of fistula associated with HIFU...

I also discussed proton beams with the oncologist; she said that while side effect my be lesser in the short term (when compared with standard form of RT), long-term side effects from proton beam would be on a part with other RT techniques ("radiations are still radiations"), so for a young patient like me, it's still not the preferred treatment path.

Bottom line is: everything points to RP.

I have now booked Retzius Neurosafe Robot Assisted RP with a leading surgeon professor at London Bridge Hospital. He is a high-volume surgeon (BAUS website) and all I can do is hope it goes well (i.e. cancer is fully removed, any continence and impotence issues are temporary, etc.).

@Jeremys, I will definitely look at the TechGuy conversation.

Bob , You are in the right place at LBH with one of what TechGuy calls the “Ninja” surgeons. Mine, the Irishman I call him, was a real Ninja and with a similar diagnosis to yours Gleason 3+4 and T2bN0M0 managed to save the nerves. You are young and have improved your odds substantially of a good result Im sure by choosing a high volume surgeon. I am now nearly 4 weeks post op at LBH and am continent and no problems with ED. I do wear pads Tens 2 but only need them for dribbles when I get up or try to squeeze a fart. Am wanking daily on doctors orders as I don’t like the somaerect pump they recommended. I did lose a bit of Length which I could Ill afford but can live with that. The orgasms without ejaculation are very nice indeed - in some ways better than before- as they were so unexpected after all the fears I had. They seem to last longer and this compensates for the lack of ejaculate. I’m driving now and walking but taking it easy generally. 

Suggest you go for the extra local anesthetic they offer before the general as this meant I had very little pain.

The worst bit is the catheter for the first couple of days but after that you will get used to it unless you have a Malfunction as I did and have to have it changed. And expect some catheter bypass and blood from your penis when doing a poo. This worried me as no one warned me but is normal when you have a bladder neck reconstruction apparently. That’s cleared up now. Also take the laxatives they recommend I suggest. I tried to make sure My bowel was empty before I went in as I didn’t want the worry of constipation post op. 

My histology report post op was very good with no upgrade to staging and negative margins both on the day and post op. Im still worrying though about the PSA test at 8 weeks as this will tell me whether it was really a success or not but fingers crossed

wishing you the very best of luck. I pray you have the same experience  as me. Try to not to worry. You have done all you can and got yourself the top surgical team. So relax and leave it up to them. 

@Jeremy, @TechGuy,

Thank you both for your kind messages of encouragement.

I actually had the operation a few days ago at the HCA hospital (which looks like a spaceship from a science fiction movie set). I still cannot believe this prostate cancer thing. It came so abruptly, so quickly. The past 2 months have been a hell of a roller coaster. Now back home, getting on with my surgery recovery journey. The operation went as planned with the Professor (not to name him) able to spare my Retzius and my neurovascular bundles on both sides. The intraoperation frozen section showed clear margins.

Now dealing with catheter (which seriously limits how far I can walk outdoors as it fills up pretty quick) and constipation. Glycerol suppository seems to be doing the trick until movicol kicks in. Shoulder pain went away, which is great...

I recently tumbled on an interesting articles:

Through my cancer, I have found the key to a good life | George Monbiot | The Guardian

Congratulations! Very glad that you are now post op and hopefully will make a speedy recovery. The worst bit is the catheter but its only a couple of weeks and you will get used to it Im sure. Its obviously worrying waiting for the post op histology report and then the PSA in 8 weeks. So fingers crossed for that ! My histology was good but Im still waiting to do my PSA in 3 weeks time and crossing everything. You were definitely in the right place with a great surgical team so have improved your odds but lets pray for a bit of luck as well and that they got it all out first time. Wishing you all the best and I hope your journey will be smooth as mine has been so far.

In terms of recovery Im feeling pretty good now after 5 weeks with no pain recently at all except for a little twinge last night which I think must have been a bit of debris coming down the uretha. Thankfully all seemed fine this morning. Am walking 10,000 steps most days and getting my strength back. My biggest problem the last couple of weeks has been gout in my feet which seemed to not be clearing with the surgical socks I was wearing so I took the decision to take off the socks and the gout is now clearing. I was not prescribed the daily injections and just hoping I dont get a blood clot as a result of removing the socks a bit earlier than advised.

hope you will keep us updated with your progress

jeremy

Yes Bob, perfectly normal. You’ll get all sorts in it for a while even after they remove the catheter. Just keep hydrated and revise Netflix :-)

Enjoy your Sunday!

@TechGuy, your knowledge is much appreciated! 😀 Hope your recovery is going smoothly.

@Jeremy, yes, the Prof did spare my nerves on both sides so I guess it's wait and see. Am relatively young, which should play in my favour but I'm not holding my breath: everybody is different... I know you said you hated the pump but why not give it another try as it might help with the lost length/girth (at least, in my simplistic mind, I can see how injecting blood under pressure into the penis could help with those problems)? Anyway, I'm sure the frantic wanking must do some good re blood flow. 😁 

My mp-MRI, which is quite recent showed a big 9mm tumour so I'm expecting a big % of my prostate to be cancerous too. Our cases are not that different. I wish you luck with your first post-op PSA test. I hope it goes well. I thought I would be in the clear after the operation (i.e. the cancer is gone) but I realise that with that kind of disease, the best one can hope for is temporary reprieve, which is why it's even more important to live "in the now" and avoid projecting oneself into the future. I know it's easier said than done.

For the first PSA test, did you have to tell the lab that does the analysis that you had RP?

Bob