Just diagnosed with multifocal 3+4 T2Bn0m0

User

Posted 09 Jul 2021 at 17:44

Thats quite reassuring TechGuy and quite scary Chris! I hope I am not leaking out of the joint. I assume I would just feel really rotten if I was?

In preparation for trial without catheter any tips appreciated. What should I take to the appointment except for pads and nappies?

I suppose I will find out pretty quickly whether im continent or not . Im still planning to take the ferry to France on Tuesday night and drive slowly down to the south over 3 days. Ive purchased the honest johns and a portable potty for the car on Amazon so hope it will be ok.

by the way TechGuy what is a ninja surgeon? I think mine was on the same team as yours and certainly was very experienced and exudes competance. I suppose I will find out just how good when the catheter is removed. I confess I am a little worried and hope i am one of the lucky ones. The incident on Sloane Street made me realise how difficult incontinence would be!

User

Posted 09 Jul 2021 at 17:50

Forgot to add that when discussing the histology report with my surgeon he said the odds of a recurrence ( based on his personal stats) was reduced from 17% pre report to 7% now as negative margins and no change in grade. This was obviously encouraging but to date he has never said anything negative to me so I cant really judge this statistic particularly as the PSA test is still to come! . I suspect I will still spend a lot of time worrying anyway !

User

Posted 09 Jul 2021 at 18:49

Jeremys.

Apologies , it was not meant to scare you, quite the opposite. .

Good news on the histology. Hope all goes well for the twoc and the journey home, I did post some tips earlier in the conversation.

Thanks Chris

User

Posted 09 Jul 2021 at 18:55

No worries Chris I would rather the whole truth and appreciate your honesty.

I've reread your earlier post which is very helpful!

User

Posted 09 Jul 2021 at 19:24

I’d say PS falls into the ninja category :-)

top histology results…many are upgraded. Fingers crossed for the future and enjoy a cold beer with Amos to the skills of the surgeon. Odd game this cancer stuff and as I learnt through family very much a roller coaster ride in terms of ups and downs. But at the very least with intervention you hope to buy more time for new treatments to come online.

User

Posted 09 Jul 2021 at 19:57

Well I hope DC is also ninja catagory -:)

It certainly is an odd game! Ive just read colwickchris story and found it very upsetting that anyone should have to go through this. Chris, you are a very brave man for sharing your journey with such fortitude and grace. Im praying i wont have a stricture and have to do any self dilatation. As for the SPC thats truly terrifying .

User

Posted 09 Jul 2021 at 20:33

Yeah DC is also a ninja. I passed him and the prof at 7am on my morning of surgery. They were both kitted out for theatre…kinda surreal one of them was for me 👀

hopefully soon immunotherapy will evolve to a point where it will have a wider reach for more patients. My ex works in this field….she said it’s evolving but every time you think it’s ‘breakthrough science’ it’s just another door to another order or magnitude of detail. Fingers crossed for all of us mate.

User

Posted 09 Jul 2021 at 23:01

Fingers crossed ? Everything is crossed !

User

Posted 12 Jul 2021 at 11:33

Off to LBH this morning for my TWOC. Nervous is an understatement! Have drunk plenty and taking along pads and nappies. Fingers crossed

User

Posted 12 Jul 2021 at 12:31

Should be fine. Just take your time. I took a couple of bottle of water with me. They will do a quick scan to check bladder emptying properly and then you are good to go.

I did get stung though as think I drank too much. The 90mins train journey en route home was interesting as loo on my half of the train was shut. Spoke to the guard and he found the front half of train loo was fine although he was prepared to open one for me so I could use the travel John as a last resort. 🤪

Best of luck and hope it all goes ok.

User

Posted 12 Jul 2021 at 17:49

Thankfully all went well today. Nurse was horrified I was planning to travel tomorrow and initially advised against. However she found a solution and gave me an immediate appointment with the radiologist 2 floor down who took a bladder scan with a trace dye which proved my bladder neck reconstruction was not leaking. That was a relief and the TWOC went well. I seem to be continent apart from a few dribbles so very relieved. Apparently there is a about a 20% chance of a stricture at some point and I hope I am one of the lucky ones to avoid this.

thanks for all the support. Its greatly appreciated and I would have found the whole process much more daunting without the wise counsel available on this site.

Fingers crossed for the PSA in 6 weeks time.

User

Posted 12 Jul 2021 at 17:58

Fantastic news. Don’t be tempted to lift/carry anything even though you may feel fine 😵‍💫

Have a great trip!

User

Posted 12 Jul 2021 at 21:37

Jeremy

Sounds like you were well looked after. Take it easy but keep mobile.

I assume you are not doing any of the driving. We have lots of posts on here about driving after surgery, the most frequent advice is ring your insurance company before resuming driving. The advice from medical teams varies enormously but you have a contract with your insurance company.

Take care and have a safe journey.

Thanks Chris

User

Posted 12 Jul 2021 at 22:00

Thanks Chris. Good advice. I intend to use this as a perfect excuse to ask the wife drive!

User

Posted 20 Jul 2021 at 18:30

3 weeks post op and made it safely back to home in France without incident. I am surprised by how well I feel. My stomach wounds have healed really well and I am not taking any painkillers. So far so good on the waterworks. My flow rate was described by the urologist as pitiful before the Op and now is much improved. Hesitation, which was a big feature before, has gone which is great although sometimes I wish there was a bit more hesitation and a bit more warning as Ive been caught out a couple of times. The dribbles at the end are manageable and picked up by the Tena pads. Do they ever disappear I wonder? As for erections I seem to be one of the very lucky ones so far and am in pretty much in full working order. The nerve sparing obviously worked. Size is a little less and firmness about 90% and improving daily. I tried the Somaerect pump a few times but dont like it at all. I was not prescribed the daily injections against clots ( one of the benefits of Brexit i was told) but am still wearing the compression socks which I have got used to. Im still taking it very easy for now with light walking the main exercise. I do worry about the PSA test in 5 weeks time ( particularly as I did not have a bone scan or PET scan) but have crossed everything and try not to think about it. Thanks for all your support throughout the process.

User

Posted 20 Jul 2021 at 19:04

Jeremys

All sounds good,not sure about using the pump quite so soon. I didn't get mine until a few weeks after my 6 week check up

Hope all goes well.

Thanks Chris

Edited by member 20 Jul 2021 at 19:05 | Reason: Spelling

User

Posted 21 Jul 2021 at 00:37

Ditto with my pump. But then it sounds like you don't need it anyway.

User

Posted 11 Aug 2021 at 13:12

Am trying to get myself mentally prepared for my post surgery PSA test on 24th August.

As I will be having these tests at a private laboratory in France can anyone tell me should I be requesting any other tests ( apart from a normal blood profile ) at the same time ? Or just the PSA? How about Free PSA? And perhaps Testosterone? And are there any other cancer marker blood tests I should request as I usually can request this lab to do whatever tests I like. I was referred to a genetiscist by my onco as my Mum died of Ovarian Cancer at 63 and Uncle of Prostate cancer at 89 but have been unable to get an appointment that works so should I see if I can get the Genetic tests done at the same time just in case and does anyone know the technical specifications for the these genetic tests. Is it BRCA or something like that and are there any others? Any help with this greatly appreciated.

User

Posted 11 Aug 2021 at 13:24

Just standard PSA should be fine so long as it will give resolution to <0.01. I have super sensitive PSA done by default and the resolution goes to <0.006 but had created anxiety when there have been slight movements possibly due to machine/assay error/noise. BRCA only implicated in very few prostate cancer I think. Speak to the London team for guidance and reassurance but I suspect they will say the same. The prof and his partner are always great in answering questions so ping him an email maybe? At my GP’s I always ask for a copy of the blood report. Useful for completeness of data.

Edited by member 11 Aug 2021 at 13:26 | Reason: Not specified

User

Posted 11 Aug 2021 at 14:16

Free PSA and testosterone are irrelevant to you. Free PSA is useful for men with PSA between 4.0 - 10.0 and ambivalent MRI results who are reluctant to have a biopsy. Testosterone is useful for men on long-term HT who suspect their HT is failing.

BRCA is thought to account for about 5% of prostate cancers. Your mum's ovarian cancer could be significant but your uncle probably isn't- the familial trend for BRCA is close female relatives with ovarian cancer, close female relatives diagnosed with breast cancer at a young age, close male relatives diagnosed with prostate cancer at a young age (50 or below) and / or a number of close relatives all with hormonal cancers. It may be interesting to have the tests but if you have children, do consider xarefully what the unintended consequences might be for them if you test positive ... difficulty getting life insurance or mortgages, for example.

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

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