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10 months post surgery.

User
Posted 19 Feb 2023 at 08:00

Hi;

Diagnosed PC on 22/12/22.

Had op on 31/01/23 robotic surgery back home after 18 hours , catheter out 7 days later. Since then very up and down I've had odd days of feeling ok ish and some leakage this past week worse everytime stand up I leak also getting very uncomfortable sitting so struggling to know what to do for the best do I walk more and put up with leaking or stay sat or lay down to lessen the impact but get discomfort.

Pretty confused as to what recovery should feel like , got histology results on 20th Feb happy with my consultant but very limited on recovery feels like I'm on my own .

 

Edited by member 30 Oct 2023 at 17:34  | Reason: Not specified

Vern.

User
Posted 23 Jun 2023 at 09:45

Morning,

Just phoned up and got my PSA results 5 months post surgery.

0.009.

Comments please.

Vern.

User
Posted 17 Mar 2023 at 16:10

Vern,  you are not yet two months post op. I didn't get full energy back for many months and I am sure you are expecting too much from yourself and overdoing it. Give your body a chance. Your legs are entitled to be tired after a three mile walk. And it is quite normal for continence not to be a straight line progression.

Peter

User
Posted 30 Oct 2023 at 17:43

Hi All,

I'm now 9 months post op and was doing ok but last couple months have crashed on hopeless thoughts involving my health both physical and mental, very disturbed sleep which doesn't help I'm 4 years into retirement and should be doing better .

Any advice to how I go about improving things would be appreciated, feeling I need more than 10 minutes in GP surgery.

 

Regards to you all.

 

 

Vern.

User
Posted 30 Oct 2023 at 19:19

Hi Vern,

I am 2 years post surgery, but I do recall many dark days and moods approaching the first anniversary - ( even though like you my PSA was undetectable at 0.006) - perhaps a delayed post trauma reaction. Perhaps it is with darkening days of autumn ?  Don't beat yourself up - I think it is just being human.

I retired post surgery, and keep myself busy with art painting as my main pastime, getting out and walking in nature for birds, orchids, butterflies, or fungi now as autumn progresses. Always trying to find small pleasures each day. What are your main hobbies ?

The first year was hard with slow recovery over incontinence, now only 1 pad a day, minor leaking.  Ongoing ED a definite source of dark moods, but in this 2nd year there is recovery and progress in this area too.

I think it is thought, "oh one is healed from the surgery, so all should be ok", but it is more complicated and more drawn out than that.  So I concur with the rollercoaster of moods and thoughts. Here for you.  

P.

Edited by member 30 Oct 2023 at 19:21  | Reason: Not specified

User
Posted 30 Oct 2023 at 19:34

Ey up Vern.

Like you, I'm 9 months post RARP.

An examination of the removed prostate revealed Gleason 9 (4+5), Grade Group 5, Extraprostatic extension pT3a, left posterior, radial distance 1 mm. I've been told there's a 50% chance of recurrence but fortunately my last three PSA checks have been: <0.02, <0.05, <0.02 which are classed as undetectable.

My incontinence has virtually gone but I still wear a pad during the day just in case.

I'm prescribed Invicorp which is generally successful.

I'm fairly upbeat, I think my gallows sense of humour helps. However, like the vast majority of cancer suffers, there are times when I feel down in the dumps. Sites like this and speaking to online specialist nurses have helped lift my mood enormously.

Speak to one of these nurses they don't, unlike most GPs, have 10 minute time limits.

Best of luck pal.

Adrian

 

Edited by member 30 Oct 2023 at 19:51  | Reason: Spelling.

User
Posted 30 Oct 2023 at 19:40

Thanks Adrian,

I might give nurses a call I'm old school and don't find asking for help very easy .

Vern.

User
Posted 07 Dec 2023 at 15:14

Hi All,

Time moves on and I'm 10 months post surgery I had PSA results today and its   < 0.006 down again from 0.007 last time and 0.009 six months ago, Consultant very pleased and put me on six monthly testing now.

My best wishes to you all.

 

Vern.

Edited by member 07 Dec 2023 at 17:22  | Reason: Not specified

Vern.

User
Posted 18 Dec 2023 at 11:44

I'd like to thank everyone for their help and encouragement on my journey this year it really has helped, helping each other is so important when things are difficult so let's keep it up.

So looking forward to going to football with my son on boxing day and making more memories.

Wishing you all a Happy Christmas.

Vern.

User
Posted 01 Feb 2024 at 17:03

Hi All,

Been for camara job at hospital today carried out by surgeon who proformed the Prostate operation a year ago .

He said no sign Bladder cancer but possibly sign of a virus caused the trace of blood , surgery looks fine no clips flisting around .

He is recommending GP looks at inflammatory markers for overall symptoms.

Relieved he was happy but it doesn't change the way you feel.

Vern.

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User
Posted 19 Feb 2023 at 10:52

Vern

Very early days right now and whilst the external injuries look minor, you have some serious healing to do internally. . You do need to do some gentle walking to help you along. Don't worry too much about leaking at this stage, it's normal for most of us. Have you started pelvic floor exercises? They are important in helping continence over time. You are most definitely not on your own. I am sure you will get some detailed responses from other members and I strongly suggest you speak to one of the PCUK nurses (number on this website), they are marvellous listeners and will take the time to explain what, perhaps, should have been explained to you prior to leaving hospital but seems not to have been. 

Best wishes, Peter

 

User
Posted 19 Feb 2023 at 11:52

Peter,

Many thanks for the encouragement it's most appreciated, nice sunny day here today ( Hampshire) and I've walked 1.5 miles this morning and tried to blank the leakage best I can !

I'll give Nurses a call tomorrow chat things over .

 

 

Vern.

User
Posted 19 Feb 2023 at 13:34
Are you wearing continence pads?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2023 at 13:39

Hi Lyn

 

Yes I am takes some getting used to !

Vern

Vern.

User
Posted 21 Feb 2023 at 14:31
Hi Vern.

I had my prostatectomy in October 2022. Yes the leakage always occur more on rising from sitting, coughing, sneezing etc.

Keep up with the pelvic exercises & walking all help with the leakage problems.

We all recover differently but as the weeks go by I’m sure you will improve by the day.

All the best. Jeff.

User
Posted 21 Feb 2023 at 14:47

Jeff,

Many thanks for your message and I hope you are doing well, I had follow up with consultant yesterday now wait until end March for PSA test to see if more treatment needed.

I dealt with operation fine it's mainly I was very active before walking five miles a day or more then to have leakage while out walking even in the garden is a lot to come to terms with.

Vern.

Vern.

User
Posted 21 Feb 2023 at 20:53
Vern, what you are describing sounds much the same as my experience - not sure whether that means "normal" though judging by other descriptions here some do a bit better some worse.

At three weeks I was keen to resume something resembling my normal levels of activity. But even doing modest things like walking to the shops for a few groceries took a bit of planning, I had to go to a place with a toilet where I could change my pad. I remember commenting to the specialist nurse that I felt I was a major contributor to the profits of the Tena company.

Things were on an improving trajectory. Pad use came down, while activities increased to much nearer normal. For me the breakthrough was about 6 or 7 months after surgery when I was reliably down to two pads a day, it meant that I could do anything confidently knowing I had a spare pad in my back pocket. Some men totally regain continence, but in my case I have continued to need pads - but mostly just the one a day.

I am sure things will get better for you. But you can't hurry recovery up!

User
Posted 23 Feb 2023 at 12:03

Hi,

Just had histology results.

Grade 2 , Gleason 3+4 , 20% pattern four with non conspicuous cribriform pattern 4.

T3a R1 extra prostatic focal disrupted margin.

Next is PSA test end March .

Guess the second set of figures not conclusive enough to start any further treatment until PSA results.

Vern.

Vern.

User
Posted 11 Mar 2023 at 17:33

Hi All;

Bit of an update on my position any views on if this is normal .

I'm coming up six weeks post surgery and have mixed days of feeling up and down, basically I've got my exercise up to two miles a day last couple weeks and now three miles days this has increased leakage .

My consultant said have a go at recording leakage as he thought it's wasn't as bad as I thought, well it works out at 10mls for the 12 hours night period as always shower and change 8pm and 8am so night including bit of evening and again in morning, the day period was 65mls avarage with range from 40 to 90 mls.

Get up every morning with optimism to get to normal but negative by end day when things the same. Back for PSA on 31st March eight weeks after surgery and timed to fit in around Daughters wedding on 1st April so don't know results.

Regards to all.

Vern.

Vern.

User
Posted 11 Mar 2023 at 20:40

Hi Vern.

 

I am 9 months post-op. and am still incontinent, but it's getting slowly better.  I go for a walk of 4-5 miles most mornings and do Kegel exercises 3 times a day.  I have recently added in Pilates exercises and a Yoga class.  It seems to be helping, but maybe it was going to get better anyway - I can't be sure.

I can only agree with other peoples' advice: to make sure that you always have a spare incontinence pad with you and try to ensure that there will be somewhere to change.

I also keep drinks to a minimum two hours before leaving the house in the morning and just have one drink while I'm out.  I make up my quota of necessary fluids in the late afternoon and early evening.  I try not to drink after 8 p.m. in order to reduce night-time visits to the toilet.

Look after yourself.

JedSee.

User
Posted 11 Mar 2023 at 20:55
It seems to me that you are doing remarkably well for 6 weeks post-op - I think your expectations have been too high!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2023 at 13:25

Hi All,

I'm struggling at moment my leakage has doubled past week mainly when walking and have discomfort which is different than past weeks more right side low and tired legs came on last Sunday after three mile walk , had GP appointment yesterday took urine sample to send to lab but test strips I do at home fine and changed PSA from 31st to 21st .

I understand take time but difficult when things go backwards very tiring.

Regards to you all.

 

Vern.

Vern.

User
Posted 17 Mar 2023 at 13:26

Meant to add struggling to do pelvic exercise as uncomfortable to do .

Vern.

Vern.

User
Posted 17 Mar 2023 at 16:10

Vern,  you are not yet two months post op. I didn't get full energy back for many months and I am sure you are expecting too much from yourself and overdoing it. Give your body a chance. Your legs are entitled to be tired after a three mile walk. And it is quite normal for continence not to be a straight line progression.

Peter

User
Posted 17 Mar 2023 at 22:49
I don't think you should be walking 3 miles so soon after the op - your body is telling you something! Increased leakage is linked to tiredness - your brain has to relearn bladder control as your bits have been moved around, including the muscles and valve that keep the urine in your bladder. It's a bit like a toddler being potty trained - even when they have cracked it and started to recognise that they need to wee and then hold it in for a few seconds till they can get to the potty, as soon as they get tired or distracted by a game or the TV, accidents happen.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2023 at 23:55

Vern, I can't say I have ever found doing PFEs uncomfortable, you are still healing. Or there may be something else going on down there. I found when walking I didn't leak ,as soon as I got home and stopped walking I would leak.

Thanks Chris 

User
Posted 20 Mar 2023 at 17:48

Hi, I'm a Rambler and started 5 mile walks after  week 6 from catheter out. Yes, the leaks have to be tolerated. Doing the Kegals,  if I had a dull ache, I kept on going thinking that it was just the muscle strengthing. Now I'm doing 10 mile walks weekly, 1 pad per day with some totally dry days. It seems some good and bad days each week, as someone else said, its not a straight line progression but progression never the less.

User
Posted 20 Mar 2023 at 18:07

Hi Steve.

Good to hear your doing well, this exercise is difficult as I had to walk one mile 15 hours after surgery then they let me home and two days later GP said keep moving no lifting but walking fine two weeks after surgery consultant was lead your life don't lift or run but walking is fine , my sister in law is a cancer nurse and told me nuts to try and walk far in early weeks !

I'm just getting out a bit more now as in dentist's - Doctors - running the wife few places so waking less and think the balance is better, in hindsight I'd take it easier but at same time sitting around is tough on the body .

Best People given sensible advice are sister in law and Lyn on this site .

All the best 

Vern.

Vern.

User
Posted 20 Mar 2023 at 18:09

Walking less !!!

Vern.

User
Posted 23 Mar 2023 at 09:36

Hi All,

I'm now 7 weeks post surgery and my PSA level has just come in at below 0.1 , be a week before I see consultant comments please.

 

Vern.

Vern.

User
Posted 23 Mar 2023 at 10:50

So does your post PSA result show < 0.1, the '<' is important because it means that they have tested to the limit that is possible in the lab. Your result being less than the threshold they can test to.

< 0.1 or 'less than' 0.1 would be considered undetectable. 

If you need clarification of your result it's worth giving your uro-oncology nursed a call. The receptionist at my local GP are very good at missing out the all important '<'

 

User
Posted 23 Mar 2023 at 10:59

I always ask the GP sec to email the actual lab report to me. That negates any risk of misinterpretation. 

User
Posted 23 Mar 2023 at 11:16

Yes the results show the below arrow you describe 

 

Vern.

Vern.

User
Posted 23 Mar 2023 at 11:26

Result reads.

< 0.1 .

Vern.

Vern.

User
Posted 23 Mar 2023 at 12:10

Your good then Vern. 

3 monthly tests for the next 2 years then. 

User
Posted 24 Mar 2023 at 09:27

Morning;

Now I've got post PSA result < 0.1  I have appointment with my consultant on Monday 27th any questions I should ask or guess he'll tell me what's next.

On my incontinence journey I had been steady at no problems at night only in day when walking and that's around 45 MLS all day , then last night 30 MLS ! For first time !

One step forward two back.

 

Vern.

User
Posted 25 Mar 2023 at 12:16

Had my RP op on 8th March.  Had 3 nights hospital stay due to low bp.  Had TWOC yesterday on 24/3.   Had good night with little leakage and only got up twice to pee.    Getting up today was a shock with the leakage whenever I am up and moving it seems very frequent.  Managed short walk trying to ignore leakage.   Have restarted the pelvic exercises.    It is a relief not to have the catheter but do find the leakage distressing. 
I have been told I will only get my histology results at my review which isn’t until 23 May.   It seems a long time to wait for something so critical.

Rob

Edited by member 25 Mar 2023 at 12:21  | Reason: Not specified

User
Posted 25 Mar 2023 at 12:26

I had my histology results three weeks after surgery, like you I prefer to get on and know what's what so I wouldn't worry about requesting appointment sooner.

 

Vern.

User
Posted 26 Mar 2023 at 07:34

Bit concerned this am.  18 days post RP now and this morning quite a lot of fresh blood in urine and large clot.  Should I expect this?  
why is it always a weekend!

Rob

User
Posted 26 Mar 2023 at 08:34

Morning Rob;

In my journey I find it better to discuss any problems as soon as they come up I'm sure your fine but just pick up the phone to your hospital contact or the Nurses on this site if they available on a Sunday.

I expect people with more experience on here will add more advice but don't be worried about bothering people you'll feel better soon as spoken to someone.

Cheers

Vern.

 

 

 

 

Vern.

User
Posted 26 Mar 2023 at 09:02

Rob , to the odd bit of dissolving scab is quite common even six weeks after surgery. Have you been overdoing things ?  Dark blood is usually associated with old blood , red blood is usually fresh blood.Seeing blood in the urine or blood coming out of the penis needs checking out. Sometimes your discharge ward maybe able to help 

 

Thanks Chris 

Edited by member 26 Mar 2023 at 10:33  | Reason: Not specified

User
Posted 26 Mar 2023 at 12:16

Re my post surgery PSA < 0.1

Seeing consultant Monday first thing do I need to prepare for likely further treatment and what does consultant base his decision on ?

 

Vern.

Vern.

User
Posted 26 Mar 2023 at 12:57

Originally Posted by: Online Community Member

Re my post surgery PSA < 0.1

Seeing consultant Monday first thing do I need to prepare for likely further treatment and what does consultant base his decision on ?

 

Vern.

Great result Vern. Your PSA is undetectable so I assume your consultant will just want a retest in 3 months time. Further treatment is usually indicated by biochemical recurrence….this would be if your PSA reached 0.2 or 3 consecutive rises above 0.1 

Good luck with your appointment 

User
Posted 26 Mar 2023 at 13:00

Originally Posted by: Online Community Member

Bit concerned this am.  18 days post RP now and this morning quite a lot of fresh blood in urine and large clot.  Should I expect this?  
why is it always a weekend!

Rob

I would definitely get some medical advice. Try the discharging ward or ring 111, they may make you an appointment for today to see someone. Always best to get these checked out, hopefully all ok though. Best of luck 

User
Posted 27 Mar 2023 at 10:22
Thanks guys, went to A&E on Sunday via 111 and after a couple of hours was admitted to Assessment ward where vitals taken etc then seen by Urologist. He discussed with the senior registrar whether a Cystoscopy should be done. On balance they decided it was safer not to provided an ultra sound showed I was fully emptying my bladder. I was so after some more checks and advice I was discharged.

Relief not to be admitted overnight. I will be able to talk to my lead nurse now the weekend is over.

Rob

User
Posted 27 Mar 2023 at 11:24

Good news Rob being proactive is best approach keep going .

All the best.

Vern.

User
Posted 27 Mar 2023 at 11:27

Just back from my 8 week post surgery and PSA results.

All clear consultant happy no further treatment at least for now PSA again in three months.

Might book a holiday now !

Vern.

User
Posted 28 Mar 2023 at 19:51

Great news Vern, had my post op bloods yesterday, just waiting and hopefully will get the same results. 

User
Posted 28 Mar 2023 at 19:55

On the point of leakage, I went back to watch my team last Saturday. 

A 94th minute winner and incontinence, don't really mix lol. 

User
Posted 28 Mar 2023 at 20:39

Not had the confidence to go to football so well done to you , not to much danger of me getting over excited about my team this year but after 58 years of ups and downs all part of being a fan.

 

Vern.

User
Posted 29 Mar 2023 at 08:45

Hi Rob,

I had my RP 17 weeks ago and am still waiting for histology results! In my area there appears to be a huge backlog and I have now had my appointment for results rescheduled twice. On the positive side my 3 month PSA result was <0.01

I was very impressed with the time from diagnosis to Op (2 months) but am finding the delay in receiving histology results frustrating, but little I can do about it.

Hope you get yours at your planned appointment.

User
Posted 02 May 2023 at 08:07

Morning All,

Well today I'm 13 weeks post surgery and in some ways I'm doing ok my incontinence is reducing week by week and last week was av 10 MLS per 24 hours , In my last set of posts I said about uncomfortable when walking well that has not changed probably worse I saw GP on 16th March he said don't worry your doing very well ! Made appointment with my consultant 28th March he said maybe start of a hernia but don't worry your doing very well!,  Continue to struggle so made appointment with consultant who works from same office this was 6th April he was very good and said let's do a utrasound of groin area which was on 21st April and Doctor who did scan said no hernia but he said something about the tubes that carry sperm were enlarged on right side ( where pain is) but no idea why but would report it.

I'm now feeling well off colour with discomfort and feeling chilled and sick at times urine test negative, will call consultant office this morning to try and push results and perhaps make GP appointment at hospital as my GP surgery is two weeks for appointment ( all my treatment so far is private self funded ) 

All a bit long winded and dragging me down.

Hope you are all doing ok.

 

Vern.

User
Posted 02 May 2023 at 15:25

Re last post.

Just had scan result.

No hernia.

Epididymis is bulky on right side ( side of discomfort)

Could be swollen after surgery but thirteen weeks?

Is it possible infection before surgery now giving problem with discomfort and feeling unwell, consultant said see you in three months for check on PSA.

Any thoughts as to what I should now do or ask GP.

Vern.

User
Posted 22 Jun 2023 at 19:46

Hi All,

 

5 months from Surgery now incontinence  more or less resolved so getting on better up and down days but generally not to bad . Had second PSA blood test on 5th June at private hospital because they do the more sensitive test which consultant recommend ( last time said no need ) but still no result not sure that's good or bad.

I hate people still using snail mail seem to be reluctant to use email .

Regards to all.

Vern.

User
Posted 22 Jun 2023 at 21:17

I get my PSA results through my NHS app. Sensitive down to <0.04 at my testing centre.

User
Posted 22 Jun 2023 at 21:33
That's one of the advantages that we have here in France. Blood tests are done by private laboratories so you phone or go online for an appointment which is within 3 days and they do the tests in the morning between 8am and 11am. Just take your prescription and they take your blood and the results are sent to you by email the same day. My PSA test was at 10am this morning and I had the results at 14:20.
User
Posted 22 Jun 2023 at 21:40

Thanks for replys it's interesting the variation in way things are done even within NHS areas and private, I don't think my issue is time test results take more time it take consultant to review against NHS results are put on your account and sometimes no-one even looks at results that are lower than 3 !

Vern.

User
Posted 23 Jun 2023 at 09:45

Morning,

Just phoned up and got my PSA results 5 months post surgery.

0.009.

Comments please.

Vern.

User
Posted 23 Jun 2023 at 21:24

Fantastic result!

Maybe time for a celebration?

Best wishes,

JedSee.

 
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