Just diagnosed with multifocal 3+4 T2Bn0m0

User

Posted 12 Jul 2021 at 16:49

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 16:58

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 20:37

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 21:00

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

User

Posted 20 Jul 2021 at 17:30

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 18:04

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 18:05 | Reason: Spelling

User

Posted 20 Jul 2021 at 23:37

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

User

Posted 11 Aug 2021 at 12:12

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 12:24

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 12:26 | Reason: Not specified

User

Posted 11 Aug 2021 at 13:16

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

User

Posted 23 Aug 2021 at 21:37

Heading off to the lab tomorrow for my 8 week PSA test and very stressed out about it. Saying a few prayers tonight…

User

Posted 23 Aug 2021 at 21:45

Hi Jeremy's.

Hoping it is good news. Saying a prayer for you.

Jim

User

Posted 23 Aug 2021 at 22:00

Thank you Jim ! Much appreciated.

User

Posted 24 Aug 2021 at 10:50

Good luck today 🤞

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

User

Posted 24 Aug 2021 at 11:09

Thank you Lyn! And for all your wise counsel. Its in the lap of the gods now….

User

Posted 24 Aug 2021 at 13:18

PSA result was <0.03

The lowest it could have been was <0.006 at the laboratory I used so I assume this means there is some cancer still there and I will need RT ?

Any advice greatly appreciated

User

Posted 24 Aug 2021 at 13:33

No it doesn't, so don't worry.

Less than 0.03 comes under 'undetectable', which is exactly what you want.

Don't get too hung up on fractions of points and how many zeros you have. You have an undectable result which is excellent news.

User

Posted 24 Aug 2021 at 13:37

Thank you Littlewren. I hope you are right. I sent the result to my consultant and await his response hopefully today. God this is all so stressful. I absolutely dont want to do Hormone or SRT if I can help it.

User

Posted 24 Aug 2021 at 13:51

My OH was also <0.03 post op. They were really pleased with his result and it has remained undectable since... they have just signed him off 3 monthly psa tests and it will now be 6 monthly and the surgeon doesn't want to talk to him for 12 months.

As long as it comes back undetectable, you will fine.

Some hospitals don't give results down to how many zeros you have, knowing anxious men can fixate or anxious wives like me :)

They just say it's undetectable, it's fine, see you in 3 months. Some men like their results in detail, some are happy with the word undetectable...and that is the magic word. And Its what you've got.

When you have your post op consultation, just throw the magic word into the conversation and he will reassure you.

User

Posted 27 Aug 2021 at 12:07

My surgeon and Onco confirmed that <0.03 was undetectable and not to worry. Next test in 3 months. Very relieved

User

Posted 27 Aug 2021 at 12:26

Good news Jeremys. Long may it continue. 👍

Jim

User

Posted 02 Sep 2021 at 21:01

Just read through this post Jeremys, sounds like a really successful journey. Congratulations on your undetectable PSA result brilliant news.
Not sure if my husband will be eligible for surgery but would hope it would go this well if he is. Best of luck for the future

User

Posted 02 Sep 2021 at 21:47

Best of luck with your dear hubby. Im glad you found this forum. It helped me a hell of a lot. This disease once youve got it is a journey and it helps to have likeminded people to chat it thru.

User

Posted 02 Sep 2021 at 21:59

Thank you Jeremys. I’ve just realised looking at another post, if he is eligible for surgery then it looks like the same surgeon you had. We should hear tomorrow if mets confirmed or not so can start making decisions. It is really good to hear from people in similar situations. Take care

User

Posted 02 Sep 2021 at 22:07

Elaine

The team at RMH and LBH are amazing and i would recommend my ninja surgeon without reservation. I do hope surgery is an option for your hubby and no doubt you will keep us posted.

User

Posted 04 Sep 2021 at 07:45

That's great news Jeremy. So pleased for you. I am anxiously waiting for my first psa test which will be in 6 weeks time... my histology was not great...

One day at a time...

User

Posted 24 Sep 2021 at 21:24

For the first time since my catheter was removed 9 weeks ago I noticed some Rose colored urine ( similar to the bypass when I had the Catheter in) when I was passing a stool this evening ! Is this anything to worry about ?

Otherwise all feels fine. No pain. Hopefully this is a one off and will not happen again but I wondered what any of you thought it could be and whether anyone else had had this happen.

Grateful for your thoughts

User

Posted 25 Sep 2021 at 21:32

Nothing comes to mind. Worth pinging the urology team for a view?

User

Posted 26 Sep 2021 at 19:47

I sent the surgeon the same enquiry email as I posted here and he simply responded “ Its ok at this timepoint”. Which I suppose I have to take at face value. The rose urine has not reoccured so hoping it was just a one off…

User

Posted 26 Sep 2021 at 20:23

Sounds like the response I would want. I’m acutely aware of my knowledge limits and with questions like this if the clinician doesn’t panic there is no reason for you too. I figured it might be cool but just don’t know. Bit of a roller coaster journey all this but objective views from professionals add reassurance when needed. And you had a ninja surgeon so you know it’s on the money.

User

Posted 26 Sep 2021 at 20:35

May be the dissolving stitches at the anastomosis (new urethra/bladder neck join) finally popping out.

User

Posted 26 Sep 2021 at 20:41

Yeah that makes sense as they start to ‘pop’ around week 5 from reading my post-op notes.

User

Posted 27 Sep 2021 at 18:58

Thank you Andy62 for your comment and insight which was reassuring. That sounds like a very logical explanation to me and having read your profile you are clearly a real expert on all this. Many thanks again

User

Posted 28 Sep 2021 at 14:16

Hi Jeremys,

Similar here... at about 6 weeks whilst engaged in the same activity 😏 I passed a load of debris. It also marked a step change improvement in continence.

Cheers

Upkeep

User

Posted 28 Sep 2021 at 14:38

5 weeks were definitely a turning point on continence for me. I had a few drips here and there up to this point. The Prof told me it’s when the stitches around the bladder neck start to soften and break up. They can hold the area slightly under tension which is why drips/leaks can occur. When they soften things settle pretty quickly. :-)

Edited by member 28 Sep 2021 at 14:40 | Reason: Not specified

User

Posted 26 Nov 2021 at 18:16

Hi Jeremy,

Hope you are doing really well.

Wondered if you could help me with the pre op procedure for your prostatectomy? Rob (hubby) is booked in for RARP just before xmas…we have the date and time for that but haven’t heard anything about any other appointments beforehand. I’m pretty sure same hospital and surgeon as you and just wondered what your experience was.

I need to book accommodation and it’s a bit more difficult over the festive period so don’t want to leave it too late.

Any advice would be greatly appreciated

Thanks

Elaine

User

Posted 01 Dec 2021 at 16:36

Hi Elaine. Sorry for delayed reply. I was in France until 3 days before my op and had a Pre op assessment for MRSA and Cardiac etc at Tooley Street just two days before the op. Hope that helps. Wishing your old boy a good experience. Its really ok and he will manage. Happy Xmas

User

Posted 03 Dec 2021 at 16:35

Thanks Jeremy.

They have been in touch now and we have pre op booked for 3 days before and a zoom call the week before. Thanks for getting back to me 👍🏽

User

Posted 09 Dec 2021 at 14:21

I have been exceedingly stressed in the run up to my second post op PSA test at 6 months and even downed a diazepam tab this morning while waiting for the results. In the end it was < 0.03 so no change from the first test and still undetectable so feeling very blessed and will enjoy my Christmas a lot more now !!

User

Posted 09 Dec 2021 at 15:03

Fantastic news. It’s just one of those times we can’t dodge I find. On the plus side the time gaps get quicker if favourable results continue.

Will raise a glass to you and all the other folks on here over Xmas 🍻🍾

User

Posted 09 Dec 2021 at 15:08

Great news Jeremy. Must be a big relief. I’m sure it will long continue that way too. Enjoy your Christmas, all the best

User

Posted 09 Dec 2021 at 17:11

Thanks TechGuy and Elaine. Very relieved!

Elaine I hope your mans op goes well. Keep us informed.

User

Posted 09 Dec 2021 at 17:27

Excellent news.🍾

Dave

User

Posted 09 Dec 2021 at 18:26

Thanks Jeremy. On countdown now. Getting ready for Christmas & New year in London aswell. Will update after the op 👍🏽

User

Posted 09 Dec 2021 at 20:57

Great news Jeremy. Always a big relief.

Ido4

User

Posted 28 Dec 2021 at 19:42

Hi Jeremys, thanks for posting on ‘my’ thread and signposting me to yours. This is invaluable, I am so pleased the results have been so good for you. I have bookmarked this thread and will return to it often if I opt for surgery ( which is at least for now my preferred option ). You have so many hints and tips that will prove useful.

My only fear is the catheter (especially removal ) but can tolerate that to be treated.

One quick question, since I can work from home (office job ), I am hoping I’d be able to do some work (calls, emails) in week 2 post op - am I kidding myself ?

Regards, GG

User

Posted 28 Dec 2021 at 19:53

You're welcome GlasgowGuy. Can I suggest you also read TechGuy ‘s main thread. That was a great help to me before my op and he gets much more technical so very educational.

User

Posted 28 Dec 2021 at 20:06

Could you send me a link to TechGuys main thread ? - struggling to find it.

( feel free to then delete this post , it probably belongs better as a message but not allowed to send PM’s yet )

regards, GG

User

Posted 25 Jan 2022 at 06:31

7 month post RARP Im 100% dry and with no ED problems and last PSA was <0.03 so undetectable. So very good news

However on the minus side of the ledger Ive noticed a marked deterioration in flow rate over the last 2/3 months and hesitation has also returned. Im up 2 0r 3 times a night which is annoying. I assume this must be a build up of scar tissue after the bladder neck reconstruction. Nighttimes I often have to wait 10 secs before flow starts and then it will stop when not fully empty and I have to wait to start again. Daytimes if Im full flow seems better but I do seem to have to push hard on my stomach towards the end to feel fully empty.

grateful on advice as to what my next steps should be. Presumably a cytoscopy to check the problem? And then a dilation? And then self catheterisation from time to time.?

User

Posted 25 Jan 2022 at 10:40

Great news!

I had similar flow issues sometimes but it’s gets easier over time. So long as you are able to still empty no need to panic just yet. My biggest gotcha was retention which just started out of the blue month 6 post op. Turned out that caffeine is my nemesis. I got things going against with ~200ml Sauvignon Blanc which relaxed the muscles causing the retention. Avoided caffeine since and not hit the problem again.

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