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My Prostate Cancer Surgery experience

User
Posted 28 Nov 2018 at 11:52

Originally Posted by: Online Community Member

Well done long may the results be good

Its a great feeling getting a good result i had my op 19th September 2017 and results are still <0.02 which is great 

Thanks Steam Man and your results are also great

Wishing all the best for the future

Paul 

User
Posted 28 Nov 2018 at 11:56

Originally Posted by: Online Community Member

Hi Guys,

Been a while since I posted as I was waiting to see my urologist this week.

Had my appointment on Thursday which was my follow up to robotic surgery on 10 September 2018 so it was my first post op blood test results that were being provided to me.

Consultant confirmed my PSA is currently 0.1 which he said was the minimum measurable assessment so that was very good to hear but as he reminded me this is very early days and there will still be a long way to go in terms of follow ups and then next one will be in 3 months (February 2019).

Will enjoy this weekend and Xmas on the back of that news.

I wish everyone well and hope for good outcomes for all of you.

Sincerely

Pauly

HI Pauly

Fantastic to hear this news about your PSA which mirrors my own . My next follow up is in January

I wish you and everyone else who have contributed to this thread a good Christmas and Happy New Year and hope like Pauly C that you all have positive outcomes.

Best wishes 

Paul 

User
Posted 28 Nov 2018 at 12:00
Hi Pauly

great news re PSA, here's to a brighter 2019, cos 2018 has been a right t@@t !!

Andy

User
Posted 28 Nov 2018 at 19:37

Hi Guys,

Thank you so much for your positive support, really makes a difference to me and I am sure others feel the same way knowing they are not alone in facing this whether it's being diagnosed, deciding which treatment plan to follow, sharing post treatment experience and then being to celebrate good news and support others when facing further challenges.   

Sites like this are really great but it's the real people with real experiences who make it so special. 

I am sure we will be here for years to come and hopefully able to show that this disease doesn't have to be the winner every time, with the right support and good specialists doing great work we can all hopefully survive and thrive.

All the best to you all

Sincerely

Pauly

User
Posted 02 Dec 2018 at 11:39

My op is tomorrow, Monday 3rd December. Cannot believe the help and advice I have had from the wonderful NHS consultants and nurses.

I am currently on my pre-op drinks, to build up strength to aid recovery and wound healing.

Having read all the comments on Gowerboy's posts from all you guys I am feeling a lot more comfortable about tomorrow. I will try and post my post-op comments and progress on here. Speak soon. 

User
Posted 02 Dec 2018 at 12:10

Originally Posted by: Online Community Member

My op is tomorrow, Monday 3rd December. 

Just think, tomorrow, you’ll have a three hour nap and when you wake up you’ll be cancer free. Happy days!

Do let us all know how it all pans out.

Best of luck.

Cheers, John.

User
Posted 02 Dec 2018 at 13:06

Thanks John, will do.

I have been told that I must not lift anything, or drive for 6 weeks. Just gentle walking. I'll probably go mad!

Specialist recovery nurse said: "Get a cup of coffee and sit down in front of the telly." I reckon I'll have plenty of time to keep this forum updated with some detailed progress!

User
Posted 02 Dec 2018 at 14:20

Hi Steve,

I am sure will be in great hands tomorrow, fingers xxd all goes well for you.

From my own experience, they will keep you in for 1 or 2 days and you will have various drips/tubes attached along with the dreaded catheter.

Try to get out of bed as soon as you can just to get moving around the ward, awkward with all the attachments but it really important to get mobile.   Physio will come to you to see how mobile you are and walk with you.

Catheter was not a nice experience for me but should be coming out @10 days post op and it will be a great relief when they take it out.

Best advice I got about lifting was nothing heavier than a filled kettle for the first week or two and then you will know if you can a manage anything more.

Use the laxatives they give as you will be bunged up for a few days, took me almost 5 days for my first bowel movement, just have to bear with it.

The self jabs are pretty easy but always make sure you pinch at least an inch of skin in your hand, nothing less otherwise you can get bruising and soreness + use different sites each time.

Eat light meals, cereal and soups etc.    After a week or two treat yourself to some non-alcoholic lager (bud or heineken are actually quite good but need to be very chilled).

Sleeping is something that I found tricky as I nervous about stretching the catheter tube so experiment with different positions and you can use a pillow under your legs if that helps.  Good idea to keep your legs elevated anyway. 

Get up and about when you are home even if it just pushing a shopping trolley your the shops you must get as mobile as you can and stay active every day.

Once the catheter is out, try and avoid drinks like coffee/tea as they will make you pee more due to the caffeine.

Driving is a tricky one, my docs said none for 6 weeks, but I was driving very short journeys after a week and back at work after month which involves 30 mins driving each way.   You will know if/when to start.

Finally, don't over do it, get plenty of rest as sleeping for me was tough once the catheter was out, in the bathroom almost hourly and it wears you down.   Hopefully you  might get longer gaps between bathroom visits.   Accept you may get some mood swings, good and bad, all perfectly normal but just be aware for those around you.

Hope to hear from you soon and look forward to hearing how you progress.

All the best

Sincerely

Pauly

 

 

User
Posted 02 Dec 2018 at 14:33
Wishing you all the best for tomorrow.

Ian

Ido4

User
Posted 02 Dec 2018 at 15:29

Thanks for taking the time to type that very comprehensive reply. Very useful and encouraging advice. Now looking forward to the challenge of beating this cancer with more enthusiasm.

Regards

Steve

User
Posted 02 Dec 2018 at 15:37

Originally Posted by: Online Community Member

Driving is a tricky one, my docs said none for 6 weeks, but I was driving very short journeys after a week and back at work after month which involves 30 mins driving each way.   You will know if/when to start.

 

Good job you didn't have an accident then since you would not have been covered, would probably have been convicted for driving without insurance and the people you killed would not have got any compensation.

 

If the doctor or hospital says you cannot drive for 6 weeks (or 4 weeks or 12 weeks or whatever) then you can't! Even if it is only stated on the patient leaflet, it invalidates your insurance. 

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

User
Posted 02 Dec 2018 at 16:58
Hi Lynn,

Point well made and accepted although just to clarify advice was verbal only not given to me in writing . Always worth checking with your insurance first.

User
Posted 02 Dec 2018 at 17:27
Introduction: Returning to driving is often a question asked by patients undergoing surgery. No definitive guidance exists. The RCS advise speaking to insurance companies regarding time frames.

Objective: To investigate current recommendation to when a patient can go safely back to driving following surgery.

Method: A telephone survey was conducted of UK car insurers to discuss their recommendation regarding their policy with regards to driving post operatively.

The DVLA, BMA, MDU websites were reviewed, each institute were contacted regarding their advice for driving after surgery and the legal stand point.

Result: None of the insurance companies had any stipulations in place regarding driving after surgery, they stated that the patient should ask their operating surgeon. However if a patient were to crash in this time-frame then the policy would be invalid.

The DVLA had no information on their website.

The BMA provided no legal advice and referred the issue to the MDU who again stated that this was for the operative surgeon to decide.

Discussion: No rules are currently present. It appears to be the clinician’s decision as to when a patient can return to driving. We would recommend that patients following surgery are able to make an emergency stop.

User
Posted 02 Dec 2018 at 17:30
When I read stuff like this I wonder if I have had the same disease and operation as you (until tomorrow afternoon😉).

I parked a car the day I was discharged (day three), and drove again on day four.

They say don’t drive until you can press the brake to perform an emergency stop, but as I was I no pain anyway, it was no problem. I can honestly say I have had more pain from a sore throat.

When the consultant came to see me next day, post-op, with a gaggle of acolytes, he asked me: “How are you?” I truthfully told them: “I’ve never felt so well”, despite being connected to multiple drips and pipe-work.

When an understudy (fully-qualified consultant surgeon) came to see me on the morning of day three I asked him: “Why am I not in pain?”

“Ah, that’s the benefit of minimally-invasive surgery”

I was lucky enough to have one of the top surgeons in Europe.

I hope you enjoy a similar outcome.

Cheers, John.

User
Posted 02 Dec 2018 at 17:43

As I understand it, it is not whether you can perform the emergency stop, but the fact that in doing so excessive pressure is put on the wound area by the seat belt, possibly causing damage. Also the specialist nurse did say to me that the action of pressing the pedal may not seem like it, but this does put some strain on the pelvic and diaphragm muscles.

I guess the answer is to just grin and bear it and not drive. I am prepared to be inconvenienced for a period of say 6 weeks to ensure safe and complete healing and recovery.

User
Posted 02 Dec 2018 at 18:07
Steve, you’ll know yourself how you feel as regards driving. Don’t over-do any lifting!

I hope you’ll have as a skillful surgeon as I had. The operation itself is a cinch - you go sleepies - recuperation is the important part.

I feel very privileged as I had a wonderful surgeon and a virtually pain-free procedure. I still can’t believe it.

Get those powdered drinks down your neck now, and come back when you’re cured!

Cheers, John

User
Posted 02 Dec 2018 at 18:21

Yes the drinks are absolutely delicious. Mine are not powdered; two types, the first lot are a milky vanilla flavoured type of yogurt and the second a lemon flavoured squash. I have half a mind to buy some and drink them all the time any way!

I also have a surgeon who seems to have a good reputation.

Steve

User
Posted 02 Dec 2018 at 21:05

Steve

All the best for tomorrow, I had RARP just over four and a half years ago. The blurb at the time was back to work in 2 to 6 weeks, l think the two weeks is very optimistic, I probably could have been back at work in three weeks but I was back after four weeks, sat behind my desk for two weeks then back to my role as a contracts manager part office based and part visiting construction sites and retail premises driving around 750 miles a week. It is not a race and we all recover in different ways, take it easy but not too easy. Operating times have supposedly come done with op times of less than two hours being quoted. If I was to give you only one tip it would be  don't get constipated.

 

Thanks Chris

 

 

User
Posted 02 Dec 2018 at 21:48
All the best for tomorrow, Steve. I'll be thinking of you.

Cheers,

Chris

User
Posted 06 Dec 2018 at 08:40

Thanks everyone for the best wishes. Today is Thursday 6/12/18 and my first day at home. Had to stay in for 3 days due to low BP but ok now. The op went well and now comes the recovery. I think I had under estimated just how tough the recovery is going to be, but I am sure with all, the help from friends and family, not to mention the NHS I'll do ok. 

I think the trickiest bit is getting the hang of this blasted catheter! 

User
Posted 06 Dec 2018 at 10:26

steve

Think of the catheter as a friend it will save you getting out of bed at night for a few nights. Sure you have already been told about instillagel or hydra Caine to relieve any soreness. Best wishes. 

Thanks Chris

User
Posted 06 Dec 2018 at 15:49
Good to know you are home Steve - the hardest bit is behind you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2018 at 18:15
Hi Steve,

Welcome back. Catheter is not easy but is necessary and hopefully it should be taken out within 10 days or less. We've all been there so I can certainly appreciate where you are coming from. Think about how much better you will feel once it's out.

Keep us posted on your recovery.

Sincerely

Pauly

User
Posted 09 Dec 2018 at 16:54

Seven days since my op. Getting on better with the catheter, I have found it easier without a thigh strap, which pulled the pipe to one side with any leg movement and caused leakage. It is coming out on Tuesday.

Not sleeping too well though, suffering from headaches and restless legs at night. Headaches despite still being on the paracetamol.

 

I stopped the Ibruprofen today, so maybe that was giving me headaches?

Feeling stronger everyday, but it is tough trying to sit around all day not doing anything apart from showering and going for short walks! 

Getting there though.

 

User
Posted 09 Dec 2018 at 20:14
Hope your recovery continues to go well. You will find a big difference with the catheter gone. After such a short time it is initially weird when it comes out but things settle fairly quickly.

Best wishes,

Ian

Ido4

User
Posted 09 Dec 2018 at 20:24

I was told by doctor,just short drives at 3rd week post-op,and at four to use common sense.and drive as far as I wanted as long as I felt comfortable

User
Posted 10 Dec 2018 at 07:44
Hi Steve,

Glad to hear you are home and bored rather than worried, I know how I felt while waiting for the op after I got the news of my staging. Catheter out tomorrow is great news and you will feel much better after that thing is taken out. Boring is good.....watch those dressings and monitor the operation entry areas and keep 'em clean as you can. Good to hear you are mobile. Onwards and upwards from here.

Sincerely

Pauly

User
Posted 16 Dec 2018 at 13:10

Hi,

Glad to hear things went well and you are improving.

Hoping to have my op in the New Year.

Thanks for the insight into the op and after effects.

Paul

User
Posted 17 Dec 2018 at 08:37

Hi Steve

your right about the driving it's the damage that can be done after surgery if you have to do a emergency stop. I started driving after 2 days I have  a automatic so found it easier but I did take my time just in case. when I had my catherter removed that's when my problems started I had no control for 3 weeks using up to 6 pads a day, but then all of a sudden things started to improve. I am pad free now after 6 months so don't worry to much at first as it does get better, Do plenty of walking it helps strengthing your pelvic muscle and aid recovery. hope your recovery goes well you will have days when your down but most of the time you should be fine , keep us all up to date and I look forward to your first PSA test results and your continued recovery. have a great Christmas.

eddy.

User
Posted 20 Jan 2019 at 11:18
A long time since I posted last. Had my op on 3rd December... all went well, and catheter out on 11th December, that was a pleasure! Since then my goal has been to get dry. I feel it is taking a long time but perhaps I am being a bit impatient. I am better at night, laying down and sitting down. As soon as I stand up, cough, blow my nose or commit to any body movement etc I leak, but I think it is slowly improving.

Got a good supply of pads and knickers!

Got back driving this Tuesday just gone.

Have you got a date yet for your op Trixiebelle?

User
Posted 20 Jan 2019 at 11:19

Have you got a date yet for the op?

User
Posted 20 Jan 2019 at 13:25

Hi Steve, 

Great to hear you are going on OK.

Just had a bone scan and CT scan and I am awaiting the results.

I have had a pre-op assessment date in February and a operation date in March. However this may be brought forward if the consultant adds more lists.

Hope things continue to improve, keep in touch.

Paul

User
Posted 20 Jan 2019 at 13:33

Good luck with the scan results, let's hope they are what we want. cheers Steve.

User
Posted 25 Jan 2019 at 11:03
Not good news following an appointment this morning my PSA is still up and I'm going to have to have hormone treatment and radiotherapy and then in about 3 months time a bone scan to check that it hasn't spread to the bones. Anyway I will keep you all updated, chin up eh?
User
Posted 25 Jan 2019 at 12:59

Sorry to read this Steve. Have you got your post op pathology? What is your PSA level now?

If you read my profile you’ll get a view on HT and RT after prostatectomy.

Ian

Ido4

User
Posted 25 Jan 2019 at 13:23
Thanks for that ian. My psa is 0.7 and of course it should be zero, or very close to it. My father has been through the rt, ht and chemo, so I know what it's all about.

Steve

User
Posted 25 Jan 2019 at 13:33
Just re_ read your profile. Good luck with next test on 2nd Feb. Hope it all continues the way it has for you.

I am not feeling too disheartened as I have high hopes the rt will sort it out. Being negative does not help.

Steve

User
Posted 25 Jan 2019 at 14:09
Hi Steve,

Sorry to hear your results.

Hope the tests go well.

Keep in touch.

Paul

User
Posted 25 Jan 2019 at 16:16
Sorry to hear about the latest score. Keep us posted!
User
Posted 05 Feb 2019 at 15:26
This is an update I've had today the results of my isotopic bone scan and it's not particularly good news looks like I've got cancer on the bone on the pelvic mets which is the bit you sit on, and in my case on right hand side. the next stage is to have a CT and MRI scan in about 4 weeks. my oncologist the guy that does the radiotherapy really nice fellow and really sympathetic and excellent bedside manner couldn't fault him. he didn't seem too concerned about it anf said don't worry and I coming back in 4 weeks for these scans I'll keep you all posted.

Steve

User
Posted 05 Feb 2019 at 15:31
Hi Steve,

Sorry to hear things are not too bright at the moment, but the consultant sounds positive for you. Hope you get better news in the days ahead. Keep you chin up and keep us posted.

Paul

User
Posted 05 Feb 2019 at 15:32
Steve

Really sorry to hear this.

I hope they may offer spot RT or more to see if that kills the bandit for you or at least knocks it into the long grass.

PP

User
Posted 05 Feb 2019 at 15:42
Thanks for your positive comments I am keeping positive and I'm not feeling down about it at all thanks you guys. Hope everyone else is doing ok. speak to you soon

Steve

User
Posted 19 Mar 2019 at 19:53

A visit today to my oncologist and after several more scans it looks like I might be cancer free hooray just got some hormone treatment now to deal with my PSA count which is up. don't quite understand that as I haven't got a prostate anymore but the doctor who did explain it but didn't really understand that. Of course I'm still recovering from the operation with the pelvic floor exercises, but apart from that all Tickety-Boo so it looks like it's been a success. thanks for your comments everybody and hope you're all doing well yourselves. keep in touch.

User
Posted 19 Mar 2019 at 21:16

Hi Steve,

This is great news, hope things continue to go well for you.

Keep us informed.

Paul

User
Posted 19 Mar 2019 at 23:07

Hi Steve, what is your PSA count at the last test?

Ido4

 
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