Just diagnosed with multifocal 3+4 T2Bn0m0

User

Posted 30 May 2021 at 17:40

Just diagnosed with multifocal 3+4 T2Bn0m0 aged 56

have been on AS since 2005 when insurance medical discovered largish prostate and PSA 2.6 which rose to 3.87 by 2019. Two MRI’s in 2019 and 2020 were Pirads 2/3 but showed nothing outside prostate. DRE’s always completely normal. Recent jump to 6.33 prompted a panic TP biopsy last week and now due to see the Profs partner next week. My consultant says RP likely best option with nerve sparing if poss but also can consider RT but he wouldn’t if it was him. Bit shocked to be honest ( but not surprised as have been aware it may happen for years) as it was me rather than consultant who was pushing for the biopsy. Had to abort first biopsy under local as too painful and then had general with 32 cores taken i believe but dont yet have the details on how many cores were positive

Was advised i could not have RP until 6 weeks after TP biopsy?! Is that right although to be fair Im still suffering a bit with tenderness and blood in semen.

advised that for my age RP best option for a full life expectancy (isnt that a bit optimistic?) and will solve my waterworks problems at the same time which have been bothering me for years with pitiful flow rate, hesitancy and 2/3 visits a night ! ? Apparantly risk of RT is that it comes back on the other side and makes surgery more complicated i think he said ( maybe mistaken with that bit?)

now need to make a decision. Complicated because i dont live in the UK - I live in Cyprus and move around a lot . Would prefer to recover in France where i have nice holiday home and speak fluent french. Does anyome know if surgeons up to the same standards ( and same equipment) as the Prof or his partner exist in France? Or if i have the op in the UK with the prof or his partner how quickly could i leave the UK to go and recover in France.

all help with these questions greatly appreciated

User

Posted 19 Jun 2021 at 14:14

please check my thread as I’ve been on a similar journey at LBH under the Prof Whocannotbenamedhere. Very smooth journey. Can be an early start depending on surgery time. I booked the night before up the road at London Bridge Hotel. If you are going private I think there may be a special room rate. Arrival is smooth and welcoming and the Guy’s rooms are spacious with large wet room en suite. Worth taking a media player with you as there is wifi and the Samsung tv’s at the end of 2019 had hdmi input at the rear. Bit of a slight fiddle getting plugged in so worth doing before you go in for surgery I’d say as you have a bit of time to burn.

you might be offered the spinal anaesthesia pre putting you under in the theatre prep room. I’d definitely recommend this…but of discomfort during the short procedure but the team were brilliant and I had no post operative pain or discomfort.

post surgery was smooth. I was hooked up to leg massagers overnight and catheter bag for pee. You will only get light liquid foods until day after surgery. Recommend a good meal day before surgery.

I also took lactulose liquid with me in anticipation of constipation. I helped a lot with that but be conservative with dose. I was told off by the nurse for self prescribing but she said all I need to do is let you know when I take it and how much for the notes.

Leaving solo is the only issue you may have as it’s recommended not to carry or pull any weight due to the surgery. Try and travel as light as you can.

I bought 3x Canterbury full length zip track trousers (only really needed one pair in the end)from amazon. These were a godsend when needing to service the catheter bag to empty or check on levels etc

try and maintain a high fibre/veg diet after leaving as constipation can be an issue. I also bought prunes, nuts and also took lactulose when needed. Apart from 3 and 4 things resolved pretty quickly.

Then just need to follow all the guidance give on the FAQ notes for post surgery.

The urology nurse for LBH called me every other day during the week until catheter removal to check I was ok. I did have a couple of minor blockages but thanks to the great folk on here was able to fix it myself by ensuring I kept fluids going plus trying to lay down on back or side to clear the block which usually occurs inside the bladder where the filter for the catheter starts. It can have a tendency to get blocks with scabs and debris as the bladder is irritated by the device. Using gravity to move this debris around sorted it after some perseverance in all cases :-)

User

Posted 16 Jul 2024 at 10:09

Originally Posted by: Online Community Member

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 we come out at less than 0.1.

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 31 May 2021 at 00:20

France has been one of the leading medical countries for many years and will have a mix of highly experienced and less experienced surgeons just like in the UK. As you speak fluent French you should be able to make enquiries about how to go about finding a highly regarded one. It could mean that this would be some distance from your holiday home though.

Barry

User

Posted 31 May 2021 at 11:37

I suggest you discuss treatment with an oncologist, as well as a surgeon.

You could have surgery in Britain and repair to France for recuperation after the catheter is removed around day 10, but bear in mind Brits are banned from travel to France currently.

Best to have your surgery and convalescence in the same place, I would think.

Bon Chance!

Cheers, John.

User

Posted 31 May 2021 at 14:34

You are allowed to visit France for "essential" reasons, which I would have thought medical treatment certainly qualifies as. 7-day quarantine on arrival.

Chris

User

Posted 01 Jun 2021 at 11:54

Hi,

None of us are professionals but here's my opinion.

3+4 is near the best case of 3+3 and your psa is fairly low. In general that should be good news. Although it can depend on just where the lesions are located. They might be well within the prostate or nearer the edge. You haven't mentioned a bone scan so perhaps aren't having one, I think most people do have one but not necessarily so.

If it's well contained it is possible to completely remove it right away and then as your Prof says live happily ever after. My prejudice some think is towards surgery as it can remove it completely whereas with RT there are hormones and then the radiation to shrivel it and it can be well over a year before it settles and you're likely to be on hormones for that time at least.

After an operation your waterworks should have a much bigger flow whatever happens. There is a chance it might be difficult to control but most recover by 6 months.

If you have an op you might be better to rest for a few weeks, then you're likely to have your first consultation after 6-8 weeks when your psa should be almost zero. After that it's 3 monthly blood tests for 1-2 years then 6monthly, then annual forever.

With RT you're likely to need hormones for up to 2 years plus the blood tests.

If all goes well after the first 1 or 2 meetings you shouldn't really need to meet anyone as telephone consultations should do. Although doctors prefer to see you in the early period as they get an indication from seeing and talking to you and might get some hint from you of things they can do improve matters, e.g. incontinence or erectile dysfunction or random pains. It took 2 years before I was allowed telephone consultations, and they were with a nurse, and to be honest there was nothing much to say although she was very good at checking if there was anything I needed.

Hope that goes some way to answering your questions.

All the best, Peter

Edited by member 01 Jun 2021 at 11:56 | Reason: Not specified

User

Posted 18 Jun 2021 at 21:08

Interesting what you say about feeling "better" now you have a plan of action as I felt "better" once I knew the results of my biopsy and had decisions to make as to the best way forward.

I am not in a position to comment re surgery, but others on here who have experience of it will I am sure. Good luck with the surgery and post-op recovery

Ivan

User

Posted 18 Jun 2021 at 22:21

I had difficulty reaching down to my catheter bag as it was strapped to my lower leg, especially for the first few days following surgery because my abdomen was swollen and staples were tight. If you're single, it might be worth considering how you can empty your catheter bag and night bag, maybe you can request a shorter catheter set-up that is easier to get at.

Recovery wise, things were a lot better at 10 days when the catheter and staples were removed. Nothing strenuous and no lifting for a few weeks, I was jogging at around ten weeks.

Good luck.

Kev

Edited by member 18 Jun 2021 at 22:29 | Reason: Typo

User

Posted 18 Jun 2021 at 23:18

Originally Posted by: Online Community Member

thanks for any thoughts on convalescence and whether its possible to do this solo. Im keen not to catch Covid during convalescence so tending towards trying to cope on my own.

Unless you are very unlucky, you shouldn't need to pay for a nurse to come in and out but if you don't already have an account for online delivery from a supermarket, worth setting it up now. You won't be wanting to push a shopping trolley around or carry heavy bags for a few weeks. Also, if you have a freezer, perhaps get some ready meals in stock so that you can warm something up easily and perhaps plenty of soup in the cupboard.

A shopping list of useful things to buy in now:-

- a bucket to stand the night bag in

- waterproof sheet (Dunelm sell one with a cotton top side which is more comfortable than rubber) or puppy training pads from any good pet shop

- pants in a size larger than you usually wear; Y-fronts or jockeys rather than boxers as your testicles may be very swollen and will appreciate the support

- track suit bottoms / joggers made of sweatshirt material with a drawstring or elasticated waist and ideally in a dark colour (M&S usually have them in black or navy)

- check whether the hospital will send you home with some local anaesthetic for the eye of your penis, which can get quite sore with the catheter tube rubbing against it. If the hospital doesn't provide it, buy some from the chemist before you have the op

- the hospitals usually send you home with a few incontinence pads when you have the catheter removed but in most areas, you then have to buy the rest yourself. Rather than buy huge amounts now (you may be lucky and not need them, or at least not need them for long) perhaps just a couple of packs of Tena Men and a pack of Boots own brand so that you can see which ones you find most comfortable. You can ask your GP whether they are provided on the NHS in your area but most CCGs have stopped offering continence pads unless you have been incontinent for more than 6 months.

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

User

Posted 19 Jun 2021 at 14:41

Also some supportive pants are a good call. Like swimming trunk Speedo type. Not tight but supportive as it will help keep the pipe/catheter stable. My catheter was mounted via a thigh attacked stat-lok clip which was very easy to use. I attached the second one I was given to the other leg so I could move the pipe between the two. This was really effective with managing any soreness on one side of my penile opening. Also recommend getting some surgical tape for a pharmacy as one clip kept popping out and this mitigated that issue fairly effectively. Also get hold of a measuring jug as you might be asked to measure flow over the two week period.

Post surgery you will probably also be on anti coagulation injections. I was supplied 7 days on leaving which you are billed for. You can go for more which are more expensive than if you get you GP to write you a prescription. For me the most comfortable place to administer the daily injection (super fine needle) was my thigh rather than stomach fat. Just work with the nurse to figure out what works best for you. Obtaining some men’s tena pads level 2 & 3 is a good idea plus some tena bed protectors for reassurance.

Edited by member 19 Jun 2021 at 14:42 | Reason: Not specified

User

Posted 22 Jun 2021 at 19:24

Thank you so much for all the helpful information. It is greatly appreciated.

I now have a shopping list and am much better prepared for what lies ahead. Techguy your story is very inspiring and has helped me and Im sure countless others enormously! I pray my surgery goes as well as yours did but I know nothing is guaranteed.

i have also watched the 4 pre admission videos from the Royal Marsden which were also very helpful about what to expect particularly the catheter management

Since being diagnosed Ive come across many people who have been touched by prostate cancer. Mostly the feedback has been positive for obvious reasons - they are still alive.

fingers crossed for Tuesday. Hope he gets it all!

User

Posted 03 Jul 2021 at 22:08

Recovering well after my op last Tuesday. Apparently went well and surgeon was happy. First day or so was pretty weird getting used to catheter and the few blockages were pretty scary. Now seem to have resolved. Stayed in for 2 nights and now recovering at home. Blood in urine seems to have resolved finally and happy to have finally evacuated properly following a fear of constipation. Some abdominal pain and shoulder pain still. Taking it easy now but already feeling stronger. Fingers crossed for the catheter removal and histology in a couple of weeks and the PSA in a couple of months. So far so good. Praying continence returns quickly….

thanks a lot for everyones support. Was very reassuring !

User

Posted 04 Jul 2021 at 14:09

Great to see you are making good progress. Won’t be long until the catheter is out! Makes you appreciate not having one full time as always amazed me how quick they fill up. I was almost tempted to plug is an expansion tank on my lower leg but was advised against this. The urology nurses earned their wages with an engineer suggesting things at the end of the phone :-)

I wasn’t one of the patients totally continent from day one after TWOC. Initially I was continent and tested it en route home as the toilet on the train was out of order 🥶 The minor leaks and dribbles stopped week 5. I still have the occasional drip if I have a full bladder and sneeze or lean over the kitchen sink without tensing my pelvic floor. But 99% of the time it’s perfect and no issues at the gym or walking etc i don’t really think about it at all as significantly exceeds expectations. Same with erectile function as assumed that would be ‘game over’ post op but very much in working order…. some of the time I need ~2.5mg tadalafil to give it a boost.

Please shout if you have an questions during your journey.

Edited by member 04 Jul 2021 at 14:12 | Reason: Not specified

User

Posted 09 Jul 2021 at 16:44

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 17:55

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 12 Jul 2021 at 10:33

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 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 12:24

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 21:45

Hi Jeremy's.

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

Jim

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 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 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 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 25 Sep 2021 at 21:32

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

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 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 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 17:27

Excellent news.🍾

Dave

User

Posted 09 Dec 2021 at 20:57

Great news Jeremy. Always a big relief.

Ido4

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 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.

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 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 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 19:49

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 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 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 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 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 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

Ivan

Edited by member 16 Jul 2024 at 10:15 | 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….

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User

Posted 31 May 2021 at 00:20

Barry

User

Posted 31 May 2021 at 11:37

I suggest you discuss treatment with an oncologist, as well as a surgeon.

You could have surgery in Britain and repair to France for recuperation after the catheter is removed around day 10, but bear in mind Brits are banned from travel to France currently.

Best to have your surgery and convalescence in the same place, I would think.

Bon Chance!

Cheers, John.

User

Posted 31 May 2021 at 14:34

You are allowed to visit France for "essential" reasons, which I would have thought medical treatment certainly qualifies as. 7-day quarantine on arrival.

Chris

User

Posted 01 Jun 2021 at 11:54

Hi,

None of us are professionals but here's my opinion.

After an operation your waterworks should have a much bigger flow whatever happens. There is a chance it might be difficult to control but most recover by 6 months.

With RT you're likely to need hormones for up to 2 years plus the blood tests.

Hope that goes some way to answering your questions.

All the best, Peter

Edited by member 01 Jun 2021 at 11:56 | Reason: Not specified

User

Posted 18 Jun 2021 at 17:50

Thanks to everyone who responded. I have decided to have surgery later this month at LBH in the UK. A bit nervous but Im pleased to say both the oncologist / radiologist I saw ( absolute top Prof) and my top surgeon both agreed surgery was the right route for me. So at least there was not much room for uncertainty. Just preparing myself mentally for it now but generally in good spirits and sleeping much better than Ive done for a while which I dont understand at all. Perhaps the stress of AS being over ( after 15 years) and action being taken is calming in my case?!

Not sure what to expect after surgery and how long recovery is? I think Im staying in for 2 nights only and then back to a hotel for a couple of weeks. Will I be able to look after myself after surgery and during a 2 week convalescence. Or should I book a nurse to visit every day?

thanks for any thoughts on convalescence and whether its possible to do this solo. Im keen not to catch Covid during convalescence so tending towards trying to cope on my own.

User

Posted 18 Jun 2021 at 21:08

Interesting what you say about feeling "better" now you have a plan of action as I felt "better" once I knew the results of my biopsy and had decisions to make as to the best way forward.

I am not in a position to comment re surgery, but others on here who have experience of it will I am sure. Good luck with the surgery and post-op recovery

Ivan

User

Posted 18 Jun 2021 at 22:21

Recovery wise, things were a lot better at 10 days when the catheter and staples were removed. Nothing strenuous and no lifting for a few weeks, I was jogging at around ten weeks.

Good luck.

Kev

Edited by member 18 Jun 2021 at 22:29 | Reason: Typo

User

Posted 18 Jun 2021 at 23:18

Originally Posted by: Online Community Member

thanks for any thoughts on convalescence and whether its possible to do this solo. Im keen not to catch Covid during convalescence so tending towards trying to cope on my own.

A shopping list of useful things to buy in now:-

- a bucket to stand the night bag in

- waterproof sheet (Dunelm sell one with a cotton top side which is more comfortable than rubber) or puppy training pads from any good pet shop

- pants in a size larger than you usually wear; Y-fronts or jockeys rather than boxers as your testicles may be very swollen and will appreciate the support

- track suit bottoms / joggers made of sweatshirt material with a drawstring or elasticated waist and ideally in a dark colour (M&S usually have them in black or navy)

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

User

Posted 19 Jun 2021 at 14:14

post surgery was smooth. I was hooked up to leg massagers overnight and catheter bag for pee. You will only get light liquid foods until day after surgery. Recommend a good meal day before surgery.

Leaving solo is the only issue you may have as it’s recommended not to carry or pull any weight due to the surgery. Try and travel as light as you can.

Then just need to follow all the guidance give on the FAQ notes for post surgery.

User

Posted 19 Jun 2021 at 14:41

Edited by member 19 Jun 2021 at 14:42 | Reason: Not specified

User

Posted 22 Jun 2021 at 19:24

Thank you so much for all the helpful information. It is greatly appreciated.

i have also watched the 4 pre admission videos from the Royal Marsden which were also very helpful about what to expect particularly the catheter management

Since being diagnosed Ive come across many people who have been touched by prostate cancer. Mostly the feedback has been positive for obvious reasons - they are still alive.

fingers crossed for Tuesday. Hope he gets it all!

User

Posted 24 Jun 2021 at 00:51

Best of luck for Tuesday. It’s daunting leading up to the event but in expert hands I felt very comfy and well looked after as soon as I walked in the door.

Any questions during your journey please shout here!

This amazing discussion group was instrumental in resolving a number of questions and adding reassurance. we have got your back! 🦾🖐🏻

User

Posted 29 Jun 2021 at 12:19

Waiting to go into theatre at LBH for my RARP. Strangely calm. Thanks for all your advice. See you on the other side.

User

Posted 29 Jun 2021 at 12:35

Originally Posted by: Online Community Member

Waiting to go into theatre at LBH for my RARP. Strangely calm. Thanks for all your advice. See you on the other side.

Good luck

Bob.

User

Posted 29 Jun 2021 at 12:39

Thanks Bob. Im glad yours went well!

User

Posted 29 Jun 2021 at 12:53

Hi Jeremy

.thanks yes everything went well im actually at hospital today for follow up must admit its a great forum to be in many positives from other men like ourselves keep in touch be nice to hear how you get on take care

Bob

User

Posted 29 Jun 2021 at 12:54

Yes, good luck

User

Posted 29 Jun 2021 at 18:01

Hope all goes well

Ido4

User

Posted 03 Jul 2021 at 22:08

thanks a lot for everyones support. Was very reassuring !

User

Posted 04 Jul 2021 at 12:57

Good news. Hope the shoulders feel less sore today (take as many painkillers as you need, there are no prizes for being brave as they say). The one thing I wish I'd known is that the catheter really hurts if it's sitting too low on your leg (should have asked TechGuy for advice, clearly!) The thought of the bag pulling the tube downwards still makes my blood run cold. Use Instillagel or equivalent if you need it, as I surely did. On the bright side, having the catheter tube taken out was no more painful than walking across the room, and lasted nowhere near as long :-)

I think I was given 20 TENA pads and used them, then after that had one in the night for "just in case" briefly (gave it up when I had put the same dry one back in my shorts 3 nights running). You'll probably still discover things which make you leak a tiny bit six months or even a year later - leaning sideways to reach for the salt while sitting, or whatever.

Whatever you're offered to speed up erectile recovery, take it - a vacuum pump keeps the blood flowing and stretches it out to reduce "shortening" of the schlong, and you should get tablets to help gets things moving... There's a lot of good advice available here about all aspects of the recovery. Keep us posted when you get the good news about clear margins.

Sounds like you've got the right attitude to this, and I hope you'll be able to go from one day to the next without thinking about prostate cancer two or three years from now

Edited by member 04 Jul 2021 at 12:59 | Reason: paragraph break, punctuation

RP 07.03.20, PSA 4.1, Gleason 3+4=7

User

Posted 04 Jul 2021 at 14:09

Please shout if you have an questions during your journey.

Edited by member 04 Jul 2021 at 14:12 | Reason: Not specified

User

Posted 05 Jul 2021 at 17:06

Thanks a lot everybody.

I must say part of me will miss the catheter! Its amazing how quickly you can get used to it and its wonderful being able to sleep all the way through the night instead of waking several times as was the case before. The urine is now clear having been rose for a few days. I do find after a long walk or climbing stairs it will go rose again for a while. Apparently this is normal

I am dreading the first few days after its taken out in case I am leaking constantly. Ive purchased all the gear and pads and nappies etc so will manage somehow. The day after Catheter removal Im Planning to travel back to South of France in a car taking 3 days to do it as the wife will drive. Is that very unwise or doable do you think. I just want to get home after a month in a hotel.

Surgeon did say he managed to do nerve sparing on both sides which was encouraging. regarding ED unless I am mistaken I did feel a morning glory the last 2 days. That surprised me a lot. It seems to have shrunk a lot though (and I could ill afford that anyway !) but the hardon must be a good sign I believe that the nerves have been preserved. Anyway time will tell.

Im thinking of getting a pump. Any recommendations gratefully received on models and methods of use!

thanks for all the support

User

Posted 05 Jul 2021 at 17:44

Yes, rose is perfectly normal as the retaining balloon in the bladder moves around and irritates the bladder lining. Soon settles as you have seen.

two days after surgery I got a 90min train ride home. Was walking several Km’s per day and driving after 3 weeks. Only think you might want to consider is padding out rear of the car with some pillows and sleeping bag maybe so you can relax. I found sitting upright could get sore for a while (mainly home office execu chair) so a reclined position may be more comfortable on a long drive.

Have a good trip down and I bet you are looking forward to the utilising local analgesic* once again (*wine)

User

Posted 05 Jul 2021 at 17:53

Originally Posted by: Online Community Member

Yes I liked that, and going down the pub and drinking a few jars of ale and just checking the leg bag every so often then emptying it very quickly and easily before starting the next few jars of ale.

I did not have surgery so my catheter experience may not be comparable to yours. The day it comes out is called Trial Without Catheter (TWOC) if you can't pee they put another one in. It would not be beyond the realms of possibility that things would be fine for a day or two and then you could find yourself back in A and E to have another one fitted if things started going wrong (blood clot blocking urethra). I too would be keen to get home, as long as you have a healthcare system in place in France should you have problems, then go for it. If you could postpone your departure for a week it would probably be safer but it might just mean another week of sitting in a Hotel, so on balance I would take the risk.

Dave

User

Posted 05 Jul 2021 at 22:27

Jeremys

I have had around 12 trial without catheter and never failed, I always made sure I was well hydrated before getting to the hospital. Far better to leak after removal than not be able to pass urine and need a catheter refitting. At the hospital I was told to drink slow and steady and not to gulp the water down. If the weather is warm some extra fluid may help.

I was almost dry four days after catheter removal and from memory I would not have fancied a three day car journey. You sound like you have prepared for the journey. I did not get much notice from getting the urge signal to the flow starting. I soon got into the habit of squeezing those pelvic muscles and slowly standing up. Even if a pad can absorb say 150 ml it may not absorb that amount in one go. I got kitted up in the shower and tested how much the pad would absorb before running down my leg.

Trying to pee in a proper urine bottle whilst sitting in a car seat is not easy. Sitting in s wet pad is neither advisable or comfortable, perhaps some wipes for a quick freshen up may help and elasticated waist trousers are a must. Make sure you have some towels some for under you and some to cover your modesty when stuck on the motorway next to a coach full of people.

Due to work I frequently stopped in hotels a few weeks after my op. I would wear a pad in my underwear with some incontinence pants over them and sleep on a towel with a small water proof pad on the bed. At that point I was 99 percent dry.

Don't be surprised to see more blood and debris over the next few weeks.

Hope all goes well.

Thanks Chris

User

Posted 06 Jul 2021 at 21:32

Bit of a drama this afternoon just as things seemed to be going so well.

Walking down Sloane Street I was horrified to find my catheter leaking at the point where it is held in place on the inner thigh. The rubber hose had split for some reason. Wet trousers, busy street, rather embarrassing to say the least.

After calling LBH in a panic I made my way to there to see the nurses who had never come across this problem before. It seemed they could not deflate the balloon as there was no suction because of the leak. Rather worrying time as they worked out what to do. My urologist told the lovely irish nurse on the phone that he thought the balloon was probably already deflated and go give it a tug and see if it came out. As you can imagine the idea of that made me very nervous ! In fact he was right and she managed to pull out the catheter a week before it was due to come out! …..and then replaced it with another one there and then despite my protestations that a general anaesthetic was surely required to do that. And then she sent me on my way.

I can feel the new catheters balloon internally and its quite painful when i walk. seems to be rubbing against something which causes pain. I was assured it was in the right place and properly inflated. Hopefully this will settle down and in the meantime Im staying in bed with painkillers!

not a great end to day 7!

hopefully tomorrow will be better

User

Posted 06 Jul 2021 at 21:37

Forgot to add and more importantly that the histology report was very good apparently. Still Gleason 3+4. Negative margins everywhere and no sign of the cancer having spread beyond the gland although the tumour did take up 30% of the prostate. I think ive been very lucky despite my difficult afternoon.

User

Posted 06 Jul 2021 at 21:50

I'm glad histology is good. Catheters are general good but they do sometimes have problems. You don't want general anaesthetic just for a catheter change it might not be comfortable but it's not that bad.

I am surprised you say you can feel the balloon inside you, seems a bit odd. I could never feel mine.

Dave

User

Posted 06 Jul 2021 at 21:53

Wow that was a whirlwind event. That rubber tube is pretty sturdy so I guess one of those things. Hopefully you will have a easier time up until TWOC and things settle. The Irish nurse is very good. They all had the patience of saints when I was the patient 🤣

For your journey back a travel John from amazon might be a good idea. It’s a gel bag designed for getting caught short or camping. I buy a few of them. Didn’t use them in the end but useful back up. Came in very handy when camping as saved a freezing walk up to the loo block at 4am in 2C. Bit odd to use initially but pretty drip proof and the gel soaks everything up and sets very rapidly with no smell.

Edited by member 06 Jul 2021 at 22:01 | Reason: Not specified

User

Posted 06 Jul 2021 at 21:53

I could not feel the old balloon either. I think its the balloon Im feeling but cant be sure. Its just not comfortable walking around and a bit painful. Hope it's not an infection. How would I know if its an infection?

User

Posted 06 Jul 2021 at 21:56

Great news on the histology. If it feels swollen of uncomfortable in the morning give the LBH urology nurse a quick call. I suspect they will call you anyway as I got a call Monday/Wed/Friday until removal.

it’s probably very sore. Keep taking the pain killers and see if things settle. So long as you can pee and the pain isn’t bad that’s a positive.

Edited by member 06 Jul 2021 at 21:58 | Reason: Not specified

User

Posted 06 Jul 2021 at 22:00

I met three different Irish doctors/nurses while I was in LBH and they were all absolutely lovely. All No nonsense but with great senses of humor and she certainly needed that with me today!

i will look up the Travel John and get some.. thanks for the advice.

User

Posted 06 Jul 2021 at 23:15

Jeremys

Catheters are normally quite robust, as a permanent Catheter user I belong to a catheter site ,not a common occurrence but as you found it happens. Have you got the fastening strap around the wider part of the catheter not the balloon port spout. Most internet images are not the best way of securing a catheter.

You may have had slightly less water in the previous balloon or more likely it is a slightly different position to the other one.

Good news on the histology, hope all goes well for the twoc and road trip.

Thanks Chris

User

Posted 06 Jul 2021 at 23:42

Thats interesting Chris about the less water or it being in a different position. It certainly feels different and much less comfortable. I just hope its not an infection.

User

Posted 07 Jul 2021 at 06:30

I did get an infection, but it wasn't painful. Despite the nurse's assurance if it's still painful today I would make a fuss.

I had a problem with a blockage and ended up in A&E. Lesson learned - if you feel wrong don't just grin and bear it.

User

Posted 07 Jul 2021 at 06:47

Thank you. Thats good advice. It still does not feel right

User

Posted 09 Jul 2021 at 15:59

New Catheter has settled down thankfully but cant wait to have it removed on Monday. I understand that I will have had the catheter in for slightly longer than normal as a bladder neck reconstruction was needed in my case. Whilst my urine is straw coloured I do still have some watery blood that squirts out the end of my penis when I do a poo or stand up from the loo. This worries me a bit but nurses say its not unusual. I suppose this must mean the bladder neck reconstruction is not yet fully healed so perhaps they will decide to keep the catheter in for longer of it still has not healed by monday.

I've been feeling quite tired following the catheter change over which definitely knocked me a bit. Also if Im not mistaken I've had one or two hot flushes that did not last long but which I had never experienced before and was not expecting.

User

Posted 09 Jul 2021 at 16:33

Yeah had similar for 14days after bladder neck reconstruction. Think it’s cautious approach when margins wider. Ninja surgeons are key for this.

I had intermittent blood in urine until removal. Nothing to worry about unless you have significant pain.

mainly it’s the balloon moving around in the bladder. The bladder material is sponge like and doesn’t like anything inside. Just normal inflammation that with settle within hours after removal.

you’ve had major surgery although it doesn’t feel like it. So will feel tired and all over the shop for a few weeks. Quite a astounding when you think about it as when I had tonsils removed I was in hospital for a week. When mates popes over day 5 after surgery they were amazed I was standing and looked normal…..think they expected me to open the door in a wheelchair and speech synthesiser 🤷🏼‍♂️😵‍💫🤔😄

User

Posted 09 Jul 2021 at 16:34

Jeremys

I do dislike the use of Normal and not unusual. I did bypass frequently when passing a motion, this is where blood and urine come out the end of the penis, it can be quite uncomfortable.

I was told that if urine leaks through the new joint into the abdominal cavity you would know about and be quite ill, I think we have had a couple of guys who had leaking joints.

As always if in doubt get medical advice. Nurses and doctors can sometimes be quite dismissive of symptoms and don't always recognise the unusual.

Has the extended catheter changed your road trip plans ?

Thanks Chris

User

Posted 09 Jul 2021 at 16:44

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?

User

Posted 09 Jul 2021 at 16:50

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 17:49

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 17:55

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 18:24

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 18:57

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 19:33

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 22:01

Fingers crossed ? Everything is crossed !

User

Posted 12 Jul 2021 at 10:33

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 11:31

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.

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