Just diagnosed with multifocal 3+4 T2Bn0m0

User

Posted 25 Jan 2022 at 19:42

Sounds really good news with PSA, continence & ED Jeremy.

Sorry you’re having a bit of a setback though, hopefully like techguy says it will just sort its self out in time.

I’m constantly asking rob about his flow 🤦🏻‍♀️ (driving him mad I’m sure) it certainly isn’t what it was before but hopeful this will improve. He never had any waterworks problems pre PCa so all takes some getting used to.

Really hope you can get everything sorted out soon Jeremy.

User

Posted 28 Feb 2022 at 11:04

My 3rd quarterly post RARP PSA test result came in as still undetectable at <0.03 so massively relieved !

on the negative side Im almost immobile with terrible lower back pain for the first time in my life so am going for a diagnosis and MRI tomorrow. Hope it’s not related to Prostate cancer as I did not have any bone or PET scans pre opp. Fingers crossed it’s something simple !!

User

Posted 28 Feb 2022 at 11:08

Brilliant news Jeremy 👍🏽

Sorry to hear about your back pain though. I would have thought if it was PCa related it would show in your PSA? Good that your getting it checked so quickly. Hope all goes well x

User

Posted 28 Feb 2022 at 17:10

Great news.

Ido4

User

Posted 28 Feb 2022 at 18:17

Yes, great news Jeremys.

Not been having any large ladies walk up and down your back recently?

User

Posted 01 Mar 2022 at 12:03

Elaine am just waiting for my MRI ! And no never again will I allow an overweight Thai lady to tread on me !!

User

Posted 18 Apr 2022 at 13:35

Following my RARP in June 2021 I enjoyed peeing like a horse for a few months but this has gradually changed and I now have many of the pre op symptoms of hesitancy and poor flow. I assume this is down to scar tissue building up as others have commented. It has not bothered me so much yet as its still much improved on the situation pre op. I am getting up twice a night to pee as ooposed to 3/4 times pre op. Im just hoping it does not deteriorate further to become a stricture that needs dealing with. I have not informed the surgeon yet and I try not to think about it. Any advice though is welcomed

User

Posted 18 Apr 2022 at 14:15

Hopefully things will go well, but if the medics start talking about catheters I would read my comments on this thread.

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

Dave

User

Posted 18 Apr 2022 at 17:24

Jeremys, one of the things that created an issue a few weeks post op was a twin or split stream, this made standing to pee a problem. At home I started to use a urine bottle with a measurement scale on it. Following a few flow tests at hospital I the started to time the length of time to urinate. Volume (mls) divided by seconds gives an average flow rate, my consultant was quite impressed by the accuracy of my ave flow results. It proved useful, as my flow declined it enabled me to get treatment in a timely manner. I did get down to 0.5mls/second on occasions.

Don't ignore the issue, believe me urine retention is not pleasant and can be potentially dangerous.

Certainly report it to your surgeon.

Thanks Chris

User

Posted 21 May 2022 at 08:20

Phew. What a relief. My quarterly PSA test result just received as still <0.03

User

Posted 21 May 2022 at 09:08

Top notch news! 🍾🍻😎

User

Posted 21 May 2022 at 09:47

Great news Jeremys and long may it continue

Ivan

User

Posted 21 May 2022 at 10:24

Brilliant news Jeremy. How are things now with flow and your back pain? Hope you’ve got everything under control 👍

User

Posted 21 May 2022 at 11:52

J, great news on the PSA , how are the waterworks ?

Thanks Chris

User

Posted 29 Jun 2022 at 16:04

Today is the 1 year anniversary of my RARP at London Bridge. I’m very happy with my result and my 4th PSA test recently remains below 0.03.

Today I woke up with a small slightly throbbing lump under my right armpit - a swollen lymph node I suspect- and am worried my cancer may have spread. Could it have spread if my recent PSA is still under 0.03? Interested if anyone has an opinion on this ? I am a worrier and wonder whether I should get down to the hospital to have it looked at. I did have a particularly vigourous deep tissue massage yesterday from a Balinese lady and maybe that could be an explanation.

other observations 1 year on are that my erections seem to be fine (about 95%) when Im on my own rather than with a partner which is annoying. Maybe its nerves as I recently met a nice girl and whilst I am having amazing orgasms (much better than pre op and all body) the old fellow is not really cooperating when it comes to penetration which was embarrassing and unexpected on my first proper sortie post op. Ive tried 20mg cialis and that didnt seem to make much difference either. I have not been taking Tadalafil daily post op as I didnt think I needed it but maybe I should start? I’m loathe to try viagra again as the only time I took it pre op I thought I would have a heart attack. Perhaps I should consider the injections when Ive company which someone said were really good? Thankfully she does have good a sense of humour but Any feedback appreciated.

My continence is 100% and I cant remember last time I leaked. Very happy with that. But flow rate is much worse than immediately post op when it was like a horse. But does not cause me any real problems yet. Some days its better than others and I cant work out why. I just hope I dont get a stricture from scar tissue eventually. Fingers crossed

Generally Im in very good spirits most of the time apart from in the run up to the 3 monthly PSA test. My cancer at 57 has made me realise life is short so I am enjoying life much more now and try to say yes to everything. Bought a boat and an apartment in Spain and generally trying to make sure I spend it all much quicker than before.

Good luck to everyone going through this journey and once again thank you to all on here who helped me massively with support etc.

Jeremy

User

Posted 29 Jun 2022 at 17:07

Great update Jeremys. Your PSA result is very reassuring.

Ido4

User

Posted 29 Jun 2022 at 17:17

It's entirely normal to think that every ache and pain is due to cancer after what most of us here have gone through. It's certainly not necessary to go to hospital! If it worries you, have a word with your GP.

Glad that you're doing so well a year on!

All the best,

Chris

User

Posted 29 Jun 2022 at 17:46

Sore swollen lumps in the arm pit are often lymph nodes and usually indicate that you have an infection - do you have a temperature, sore throat, anything like that? It could also be crap collecting in the lymph node as a result of yesterday's massage. It is the job of your lymph nodes to collect up rubbish floating round your body. Another possibility is an ingrowing hair, cyst or boil.

Highly unlikely to be anything to do with prostate cancer - the lymph nodes are not painful.

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

User

Posted 29 Jun 2022 at 17:51

I think the medics would advise you that you are unsuitable for injections - for a man who can achieve natural erections but has some performance issues, the injections could be dangerous. Better that you approach this from a psychological point of view - you need to get your confidence back.

If you didn't like the viagra, try Levitra but if you are over-anxious, it is less likely to work

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

User

Posted 29 Jun 2022 at 18:15

Good news Jeremys

Re the Tadalafil, like you I stopped taking it (5 mg a day) after about a month as I try not to take pills unless I really have to. The consultant I spoke to 3 months after my operation advised me that I should continue to take it for at least 6 months as it helps repair the damaged nerves following the removal of the prostate. Obviously, if all your nerves were removed along with the prostate then I guess the Tadalafil would not be any use in repairing the damaged nerves. I was told that if I want to get particularly hard for a "session" then I should up my Tadalafil dose to at least 20 mg 24 hours beforehand.

Ivan

User

Posted 29 Jun 2022 at 19:37

Tadalafil I believe stays in the system for a day or so and my doctor suggested after surgery that I take 5mg every other day. I didn’t tolerate it that well as felt like I had a mild head cold. Agreed with him to take 2.5mg daily post op and then as and when needed. This seems to work well and is well tolerated for me. I’m generally good with penetrative erections but if I’m tired or not done recent exercise things need a boost.

User

Posted 22 Aug 2022 at 19:12

3 months passes very quickly these days but thankfully once again I am very lucky to still be <0.03. Always a great relief.

User

Posted 22 Aug 2022 at 19:49

Jeremys, great news on the PSA ,how is the flow these days.

Thanks Chris

User

Posted 23 Aug 2022 at 08:22

Great news Jeremy 👍 really pleased for you and hope it continues that way x

User

Posted 01 Sep 2022 at 07:51

Thanks Chris and Elaine

my flow seems to be ok at present. Some days its better than others and I dont understand why. I’m up probably twice a night on average which is less than before. anyway i really cant complain.

User

Posted 12 Nov 2022 at 17:00

Big Day today ! Went for another PSA test and waiting for results. But more exciting than that - today was the first time I tried Edex 10 (called Caverject in the UK). While my erections post op have been absolutely fine on the practice range I have found them less than courageous on the real battlefield. Stress perhaps I dont know but as shes very pretty I dont think shes used to problem erections. Sometimes this has caused embarrassment, shame and disappointment as penetration has been problematic. Ive tried Viagra and Cialis and neither worked and both gave me headaches. But today an 80 year gay friend of mine in the village who had his prostate removed 13 years ago introduced me to EDEX 10. He swears by it and offered to show me how to use it and when I turned up he was still in his dressing gown!. I politely declined the full monty but he showed me how the set up works and the easypen applicator and I repaired to my bedroom with a few doses he kindly gave me. And what a surprise. No pain at all with the injection using the easypen and lo and behold after 5 mins a teenage erection that made the heart sing. So I was very impressed and I hope she will be too when I see her in 10 days time. Definitely recommend and Im glad he only gave me the 10mg dose as Ive still got a semi after 90 mins and Im writing this to try and distract it…..

Edited by member 12 Nov 2022 at 17:01 | Reason: Not specified

User

Posted 13 Nov 2022 at 01:09

Wouldn't be allowed to have it in the UK except on prescription and under medical guidance. Did your friend explain that if the erection goes on for 4 hours you must go to accident & emergency department? A prolonged erection can cause permanent damage.

A cool shower and / or walking up and down the stairs might help

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

User

Posted 13 Nov 2022 at 08:14

Using someone else's medication without medical advice honestly isn't the best idea in the world. I really would speak to your doctor about it.

Cheers,

Chris

User

Posted 13 Nov 2022 at 09:40

Agreed it was highly irresponsible and I will go and get my own prescription going forward…

User

Posted 21 Nov 2022 at 14:24

Very relieved once again to receive results of PSA test showing still undetectable at <0.03. Phew !

User

Posted 21 Nov 2022 at 15:33

Excellent result!

All the best,

Chris

User

Posted 21 Nov 2022 at 22:34

Great news Jeremy 👍 really pleased. Long may it continue x

User

Posted 15 Mar 2023 at 20:15

Another nail-biting wait but worth it for another undetectable PSA result this month. Very relieved.

User

Posted 15 Mar 2023 at 21:26

Great news.

Dave

User

Posted 19 Mar 2023 at 23:35

Great news again Jeremy 👍 long may it continue x

User

Posted 20 Mar 2023 at 17:47

Great news Jeremys

Ido4

User

Posted 25 Nov 2023 at 09:21

Just had a 6 month scan and results were still <0.03 so PSA undetectable. I hate the build up to the test so Always a relief when results are as you wish. Erections are improving a bit but I find the caverject injections work well and ensure there is no stage fright on the night.

User

Posted 25 Nov 2023 at 11:14

Happy days! A great Xmas present. The build up to bloods is certainly character building to say the least. Got my annual PSA early December too

User

Posted 11 Jul 2024 at 13:26

Hello Folks it’s 3 years exactly since I had my prostate removed and I have been monitoring PSA every 3 months at the same Lab with all readings <0.03 ( which is the lowest they calibrate down to). I was staring to get a little complacent but Today I had a test and the result was 0.04 which is a definite rise from undetectable and I wanted to ask whether I should be worried or not? Any feedback appreciated.

I will return to the same Lab for a second test in a couple of days just to see if it was a rogue result.

i think I remember reading there was nothing worth doing until it reached 0.1 but any advice gratefully received.

User

Posted 11 Jul 2024 at 13:46

I’d say nothing to worry about as need more data points. Probably machine noise or calibration related.

User

Posted 11 Jul 2024 at 14:11

Thanks TechGuy. Fingers crossed you are right.

User

Posted 12 Jul 2024 at 12:12

Hi Jeremys - I think we are in the same boat. After 2.5 years of <0.01 (after RALP) I was discharged back to my GP. First test at 3 years comes back as "0.03". GP didn't bother telling me and I found out by chance. That really hit me hard. Repeat after a month comes back as "<0.03". So it seems the assay used by the lab the GP uses has a lower limit of quantification of 0.03 ng/mL (same as micrograms/L), rather than the 0.01 I was used to. I'm beginning to suspect that some muppet at the lab missed off the all important <. Second repeat in a couple of weeks. If it's another <0.03 I may get myself a more sensitive private test just to be certain.

I spent 20 years developing and validating bioanalytical methods and my gut suggests we may both be victims of the inherent variability that bioassays demonstrate at their limit of quantification (and/or lab staff cock up). Doesn't fill us with confidence though, does it?

Cheers
Ian

Edited by member 12 Jul 2024 at 12:32 | Reason: typo

User

Posted 12 Jul 2024 at 13:52

Yes perhaps we are in The same boat. Will wait for the retest. Good luck !!

User

Posted 16 Jul 2024 at 09:56

Many hospitals now only test down to 0.1, as Addenbrookes in Cambridge do when testing my post surgery PSA. Initially, it was tested to 0.01 but they changed to 0.1 on the basis that any small changes from 0.01 were probably meaningless and caused worry when such small increases were reported. My next 6 monthly test is tomorrow and, hopefully, that will come out at less than 0.1.

Ivan

Edited by member 16 Jul 2024 at 10:15 | Reason: Not specified

User

Posted 16 Jul 2024 at 10:09

Originally Posted by: Online Community Member

Ivan

_________________

Might be worth asking for a copy of the blood report. I’ve found what’s reported can be different that what’s reported….suspect to reduce ‘noise’ anxiety as you say. When I started my post RARP routine PSA blood I found my GP would report <0.01 when the actual value was <0.006. But as we all know further treatment isn’t usually considered until >0.1. Quite a few trusts have now adopted the new Abbott Method which reports to <0.025 on the lab blood report.

Edited by member 16 Jul 2024 at 10:10 | Reason: Not specified

User

Posted 16 Jul 2024 at 10:22

Thanks for that and I will mention it to the specialist nurse when I speak to her after my test.

Ivan

User

Posted 23 Jul 2024 at 16:50

I had a re test of PSa following my 0.04 reading last week and it was 0.03 so still detectable and higher than all my previous undetectable readings of <0.03

On Monday i had a consultation with the oncologist who said to not worry too much at this stage and simply monitor every 3 months. He said it was either a recurrance in which case he would expect it to rise further quite quickly prompting salvage radiotheraphy or it could just as easily be benign prostate tissue left behind that was giving off some PSA and that if this was the case he would expect it to fluctuate a bit. So it has fluctuated down to 0.03 from 0.04 and im pinning my hopes on it being that but will monitor quarterly. Next call with him only necessary if it rises again to 0.05 but even that would not necessarily trigger SRT immediately. Feeling somewhat reassured anyway….

User

Posted 23 Jul 2024 at 17:22

That’s good news. Did you get a copy of the blood report? I found a couple of times the < was missed off in the GP reporting system then corrected later. I always ask for the printed report from the lab which reduces scope for error.

User

Posted 24 Jul 2024 at 19:03

I did check with them in person and they said they had not missed off the < sign sadly.

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