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Just diagnosed with multifocal 3+4 T2Bn0m0

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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...

 
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