55 Years old Just diagnosed with prostate cancer

User

Posted 01 Dec 2018 at 10:17

Hi All

I'm just diagnosed with prostate cancer. Technically &, totally

I have no idea about prostate cancer at all.All I was suffering from a feeling that during the bathroom duties I don't feel That I fully empty my bladder. So had words with my GP than had MRI scan and a biopsy test that came out with a bad news.

UROLOGICAL DIAGNOSES:

TSc NO MO Gleason 3+4=7

Presenting PSA 4.02 .UG/L

Multiparametric prostate MRI revealed a 31 ml. Gland with a likert 4/5 area in the anterior transitional zone.

Update: Had an operation on 06/12/2018 at a London hospital now recovering at home.

Edited by member 21 Jan 2019 at 17:51 | Reason: Not specified

User

Posted 01 Dec 2018 at 14:54

Darkrainbow,

Sorry that you find yourself here.

Surgery for PCa does involve removing all of the prostate. Because of this you will no longer ejaculate during future sexual activity/orgasm.

7-12 days after surgery, when catheter is removed, you may have some leakage of urine. This leakage can last for a few days, months or longterm.

Sexual function can be affected. ED or erectile dysfunction is a common side effect. Not all men suffer ED after surgery but those that do are offered treatment to try and resolve it.

The catheter is very manageable and more of an annoyance than anything. I would recommend loose clothing such as boxer shorts and tracksuit bottoms. The catheter is usually removed in 7-12 days.

You will need to inject yourself, with Dalterparin for approximately 28 days. The needles are very small and no pain should be felt. I can say from experience that i felt no pain when injecting myself.

I would recommend taking 'fybogel' for several days before your surgery and for two weeks after surgery. This will minimise constipation which is common with prostate surgery.

Surgery will give you the best chance of a 'cure'. However, there are no guarantees that your PCa won't return. Longterm survival of early stage PCa is very good and you have excellent odds of a full recovery.

Hope this helps and i wish you all the very best.

Neil

Edited by member 01 Dec 2018 at 15:19 | Reason: Not specified

User

Posted 06 Dec 2018 at 18:44

Carol,

I have tried to report posts to you in the past but this is what happens:

I click the 'report post' tab.

It opens and I write my post.

I click on 'send'.

A pop up box appears that says, 'are you sure you want to report this post?'

I click yes.

Another screen appears and says 404 not found.

So I cannot report it???

Of course we all want to help someone here, but there will always be trolls and sad people who post what they do for whatever reason is applicable to them. Had DarkRainbow not posted his second thread, while there was some doubt in his first his assertion that the operation was off then on again but misled another member by continuing the deception, we would be none the wiser. The second thread is a moan about the nursing staff but he has already stated this in the first. Something is not right!!!

User

Posted 09 Dec 2018 at 11:49

You should be drinking plenty - why would you stop at 7-8pm? How are you getting on with injecting yourself? I am surprised that you have a lot of tummy pain; usually it is the shoulders and testicles that hurt most immediately after prostatectomy. Or perhaps you had to have open surgery rather than da Vinci with it being such short notice?

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

User

Posted 01 Dec 2018 at 15:22

The best thing we can do for you right now is to get you to download the ‘Toolkit’ information folder in PDF or paper form, which is very informative. Hyper-link below.

Best of luck for your operation today and for your future. You may be cancer-free as I write this😁

Cheers, John.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Edited by member 01 Dec 2018 at 15:40 | Reason: Not specified

User

Posted 01 Dec 2018 at 15:57

My pleasure, Darkrainbow.

On a more practical note.

You will have a larger urine drainage bag for night time. This attaches to your daytime bag via a longer tube.

I was advised, on here, to purchase a small bucket to place at the side of the bed. This is very convenient for holding your night time drainage bag.

Neil.

User

Posted 01 Dec 2018 at 17:08

Darkrainbow,

It's no problem answering your questions...anytime.

Catheters and drainage bags are very secure and you shouldn't have any issues with how they work, or leakage. Just make sure that there are no kinks in the tubing at night.

It is normal to get a bit of urine bypassing the catheter while having a bowel movement.

I purchased some flannel pyjamas from tesco. They are made from a very soft cotton. Both long leg and short leg are handy to have. Also handy to have a dressing gown.

Jogging bottoms from Peacocks are comfortable if you decide to venture out for a short walk.

For the first week i just wore flannel pyjamas and a dressing gown for comfort.

Instillagel can help to ease any discomfort around the catheter entry point. I purchased some but didn't find that i needed it.

Pack of tena premium fit level 4. You may not need them, but good to have. Your hospital may provide you with some tena pads - they should let you know if you ask.

Neil.

Edited by member 01 Dec 2018 at 17:30 | Reason: Not specified

User

Posted 01 Dec 2018 at 17:52

And Rainbow,

Be sure to get a waterproof mattress protector (about £10 from eBay or Dunelm Mills), as you are sure to have one or two ‘accidents’ in bed even if your surgery is completely successful, once your catheter is removed.

Cheers, John.

User

Posted 01 Dec 2018 at 18:44

Good advice about PJ's for night time, as a bit of extra security get an extra catheter retaining strap from the hospital, put it round your ankle and secure the night bag tube, if you are a restless sleeper it will prevent any unlikely accidents. Learn how the taps work, uncoupling the night bag with the tap open is not recommended. I personally prefer snug fitting shorts type underwear, not tight, minimising movement of the penis and catheter can help reduce possible soreness.

Thanks Chris

User

Posted 01 Dec 2018 at 21:32

Darkrainbow, this is major surgery. Don’t underestimate the length of time it’ll take you to get over it. I had surgery of a similar level of “seriousness” at the start of September: the MRI scans I had for my prostate cancer (thank goodness!) discovered that I had an unrelated localised kidney tumour, so I had robotic surgery to remove my left kidney. Major abdominal surgery - even robotic surgery - cuts a lot of internal muscles that you rely on, and they take a long time to heal. You won’t be doing much of anything for the first month, and it’ll probably be two months before things are getting back to normal. It’s three months today since I had my surgery, and although I’m ok to do most things physically, I still get a sharp pain in my side to “remind” me if I overdo it. I’m not trying to scare you - just caution you that you won’t be doing any walks anywhere for a few weeks.

Do you have anyone who can do your shopping for you? You (literally) won’t be able to lift anything heavier than a loaf of bread for at least 10 days after your surgery.

Very best of luck with your surgery,

Chris

User

Posted 01 Dec 2018 at 21:37

Not sure i get your interpretation of the information that i have passed on.

Nothinng kinky/funny about PCa as my wife will attest to.

As for getting out and about...that's down to the individual. You may need a week of recovery before that's possible...just 500 meters.

I would recommend pelvic floor exercises.

Neil

Edited by member 01 Dec 2018 at 21:40 | Reason: Not specified

User

Posted 01 Dec 2018 at 22:00

No, this is a whole different ballgame to a biopsy . A biopsy is a minor day case. RP is major surgery. Your body will tell you what you can and can’t do, but you’re not going to be anything like back to normal physically for a couple of months, so you do need to be prepared for that.

For the first couple of weeks after surgery I’d suggest doing your shopping online and asking the delivery driver to carry it inside for you. I live alone and that’s what I did (along with help from friends).

Best of luck,

Chris

Edited by member 01 Dec 2018 at 22:02 | Reason: Not specified

User

Posted 02 Dec 2018 at 07:18

On or around day 10 you will be having your catheter removed in hospital, so postpone your meeting.

Cheers, John.

User

Posted 02 Dec 2018 at 09:17

Hi Darkrainbow

My diagnosis was similar to yours 2 years ago. Click on my name to see my profile.

This link explains the diagnosis and Gleeson and TNM terms.

https://www.cancer.net/cancer-types/prostate-cancer/stages-and-grades

By the way my catherter was removed after 7 days. I started walking a fair bit the next day. After 2 weeks I was doing at least 2 miles a day and built up to 6 miles by four weeks. I had 1 month warning before my operatiom so had time to get fitter in preperation. Also did pelvic floor excercises apart from when the catherter was in and still do now.

All the best with your op and recovery

Cheers

Bill

Cheers

Bill

User

Posted 02 Dec 2018 at 12:01

Darkrainbow

It was the medical team that decided on 7 days for catherter removal. I thought it would be to soon so questioned it. The nurse said it was the surgeon who decides and he knows best. It turned out absalutely fine.

I would have been fine for a meeting after 10 days (waring a pad) as long as there would have been a loo close by because I had some urgency issue. You could maybe even go with the catherter in. I had a one hour taxi and then one hour flight to get home three days after my op.

I got your personal message about pelvic floor excercises. It's best to ask questions on here so that the answers can help others.

Yes I did the pelvic floor excercises before the op. and still do them every day.

Cheers

Bill

User

Posted 02 Dec 2018 at 12:01

The surgeon alone decides when the catheter should be removed. We had one guy here this week who had his removal after four days at an Austrian hospital, and others who have had to wear one for weeks.

When the catheter is removed (TWOC procedure) they give you a flow test to make sure the waterworks are operating correctly, and if not, in isolated cases they may reinsert another catheter to allow more healing to take place.

Bloody horrible things!

Cheers, John.

User

Posted 02 Dec 2018 at 12:21

If you have keyhole surgery you may be well enough to go to a short meeting after 10 days but a) you won’t be insured to drive so go by public transport or taxi and b) if the catheter has been removed you may be very incontinent so will have to wear dark clothes and continence pads.

Your penis and testicles may be very swollen and your belly might be very painful so don’t assume you will be able to wear normal trousers for the meeting.

If you have no one to stay with you at home, the hospital may keep you in for longer than usual.

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

User

Posted 02 Dec 2018 at 14:57

Chris.

I was told I would not be able to drive for six weeks if I opted for surgery. The reason given was that if it was necessary to perform an emergency stop nor could tear stitches and the seat belt could cause damage.

Bob

User

Posted 02 Dec 2018 at 15:33

Blah, blah .... if he doesn't check - or drives 10 days after surgery - and then has an accident, you can bet your bottom dollar that his insurer will say he was not covered and the people that he kills or injures will receive no compensation.

Gov.uk website says that the insurer must be informed of any medical condition that might affect driving - it also says "you are not covered to drive until your doctor confirms it is safe to do so". Whether the technically legal position is as you say or not, I don't see how anyone (not even the Stig) could drive safely 10 days after RP and even if they could, it is an open invitation for an insurer to wriggle out of their responsibility.

Bob, my husband's insurer was even worse - they wouldn't cover him for 12 weeks and until a letter was provided by the surgeon confirming he was fit to drive, which the surgeon (understandably) refused to write.

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

User

Posted 03 Dec 2018 at 17:14

My surgeon was very positive and brief pre-op. He said in hospital 1 night, catheter out 7 days, dry 1 to 6 months. He was very close, Christmas was in the way too.

After 10 days we were walking miles. Quickly learnt to take spare pads. Never had any pain or inconvenience and always wore my usual clothes. Keep it simple and keep positive. It's easy to say I know.

I wrote about my op on a website linked here if you want to read any more. https://sites.google.com/site/myprostateprobleminlancashire/radical-prostatectomy

Good luck that date gets nearer and that 3 hour sleep on the day works wonders. I was so pleased to get the tumour out.

Regards

User

Posted 04 Dec 2018 at 18:21

Dark Rainbow, I was diagnosed at 50 with a similar presentation. I hope my profile will give you some comfort.

All the best

Flexi

User

Posted 05 Dec 2018 at 11:55

I tend not to reply to newbies seeking the experience of others, I would hate too put anyone off having treatment. Check out my profile you will see Flexi and I have similar problems. We are in a minority and over the 4 plus years on here I have only found a handful of people with similar experience but read hundreds of success stories. Best wishes for the op.

Thanks Chris

User

Posted 05 Dec 2018 at 22:54

I may be getting cynical but is anyone else wondering .... ?

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

User

Posted 06 Dec 2018 at 08:25

I personally think DR is a genuine person with a limited command of English, but are there a regular crop of impostor visitors with fake sob stories?

If so, how sad must they be?

Cheers, John.

User

Posted 06 Dec 2018 at 19:43

In my work I have written communication from many people who do not have a good grasp of English. However, this appears to have been written in a way to make it look like there is not a full command of the English language rather than a natural flow of writing.

User

Posted 09 Dec 2018 at 12:32

Originally Posted by: Online Community Member

Not pretending to be pitty but they should reallt keep us patients after such a major surgery at least a week!

What do you think?

Darkrainbow

I had Da Vinci surgery and I was only kept in hospital for 24 hours..... Unless there are complications, that is standard practice in most hospitals..
Some pain is to be expected ....but normal over the counter analgesics will help..In any case you should have been discharged with enough pain relief medication to last for a few weeks ..

If you had open surgery it would be longer than 24 hours for obvious reasons..

Hope you recover soon

Luther

User

Posted 09 Dec 2018 at 16:11

I assume you are connecting the night bag to the outlet of you leg bag. Assuming you have 2000 ml night bags and 500ml leg bags that is a capacity of 2.5 litres. I have managed 1.5 litres overnight a few times. Make sure the connections are tight and taps in the right position. If you have a spare strap attach the leg bag pipe to your ankle. Not sure how you can make sure your bladder is empty ,unless you mean your catheter bag.

Thanks Chris

User

Posted 09 Dec 2018 at 20:51

I was told by my surgeon,try short local drives at 3 weeks post-op,and then at four weeks,use common sense if I felt comfortable to go further,then do so,I am not going mad but driving quite a few miles now and feel fine,just tire more easily

Edited by member 09 Dec 2018 at 20:52 | Reason: Not specified

User

Posted 09 Dec 2018 at 21:17

Do you have stitches or staples in your incisions? If it's staples, you'll probably feel a lot more comfortable once they're removed, which will probably be around 10 days after the operation.

Chris

User

Posted 10 Dec 2018 at 08:43

Hi Dark,

Very surprised that you were discharged from hospital with no painkillers - I was discharged with a vertitable chemist’s shop of drugs, including paracetamol, ibuprofen and Omeprazole (to counteract the stomach effects of regular ibuprofen), etc.

Fortunately, I didn’t need to use hardly any of them.

Where was your surgery carried out?

Cheers, John.

User

Posted 10 Dec 2018 at 10:17

DR, the forum rules prohibit naming medical staff. I'd suggest editing your message to remove them!

I wish you very best wishes for a rapid recovery.

Chris

Show Most Thanked Posts

User

Posted 01 Dec 2018 at 14:54

Darkrainbow,

Sorry that you find yourself here.

Surgery for PCa does involve removing all of the prostate. Because of this you will no longer ejaculate during future sexual activity/orgasm.

7-12 days after surgery, when catheter is removed, you may have some leakage of urine. This leakage can last for a few days, months or longterm.

Sexual function can be affected. ED or erectile dysfunction is a common side effect. Not all men suffer ED after surgery but those that do are offered treatment to try and resolve it.

The catheter is very manageable and more of an annoyance than anything. I would recommend loose clothing such as boxer shorts and tracksuit bottoms. The catheter is usually removed in 7-12 days.

I would recommend taking 'fybogel' for several days before your surgery and for two weeks after surgery. This will minimise constipation which is common with prostate surgery.

Hope this helps and i wish you all the very best.

Neil

Edited by member 01 Dec 2018 at 15:19 | Reason: Not specified

User

Posted 01 Dec 2018 at 15:22

The best thing we can do for you right now is to get you to download the ‘Toolkit’ information folder in PDF or paper form, which is very informative. Hyper-link below.

Best of luck for your operation today and for your future. You may be cancer-free as I write this😁

Cheers, John.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Edited by member 01 Dec 2018 at 15:40 | Reason: Not specified

User

Posted 01 Dec 2018 at 15:38

Good Afternoon Neil

Thanks for your kind thoughts and respond.

I read your message carefully and will do what you just recommend. ..(that is included the medicine before and after the surgery)

It's good to know that there are caring people out there who share their experiences with other's like my self who has no idea of prostate cancer/treatments etc and life after all.

I wish you a very nice weekend my friend

Darkrainbow

User

Posted 01 Dec 2018 at 15:46

Good afternoon Jon

Thank you for your kind message.

Surely very soon I will have a look at that info and educate my self about PC.

Wish you a wonderful weekend my friend

Darkrainbow

User

Posted 01 Dec 2018 at 15:57

My pleasure, Darkrainbow.

On a more practical note.

You will have a larger urine drainage bag for night time. This attaches to your daytime bag via a longer tube.

I was advised, on here, to purchase a small bucket to place at the side of the bed. This is very convenient for holding your night time drainage bag.

Neil.

User

Posted 01 Dec 2018 at 16:24

Hello Again Neil

Yes it was kinda another endless worry for me. Was wondering that how could possibly I could sleep knowing that There is a bag attached to my body..what if the pip comes of from either side of the end?

Leaking?

Or damage during the crazy type of sleep style?

At the moment I'm taking sleeping tablets anyway.

So sorry for pestering you with questions but did you wear normal traouses during the daily life and same time the catheter attached to your body?

A big Thank you

Darkrainbow

Edited by member 10 Mar 2019 at 07:46 | Reason: Not specified

User

Posted 01 Dec 2018 at 16:42

Hi Jon

I have just looked at the link that you have sent me I found it very very helpful

Thank you my friend

Darkrainbow

User

Posted 01 Dec 2018 at 17:08

Darkrainbow,

It's no problem answering your questions...anytime.

Catheters and drainage bags are very secure and you shouldn't have any issues with how they work, or leakage. Just make sure that there are no kinks in the tubing at night.

It is normal to get a bit of urine bypassing the catheter while having a bowel movement.

I purchased some flannel pyjamas from tesco. They are made from a very soft cotton. Both long leg and short leg are handy to have. Also handy to have a dressing gown.

Jogging bottoms from Peacocks are comfortable if you decide to venture out for a short walk.

For the first week i just wore flannel pyjamas and a dressing gown for comfort.

Instillagel can help to ease any discomfort around the catheter entry point. I purchased some but didn't find that i needed it.

Pack of tena premium fit level 4. You may not need them, but good to have. Your hospital may provide you with some tena pads - they should let you know if you ask.

Neil.

Edited by member 01 Dec 2018 at 17:30 | Reason: Not specified

User

Posted 01 Dec 2018 at 17:52

And Rainbow,

Cheers, John.

User

Posted 01 Dec 2018 at 18:44

Thanks Chris

User

Posted 01 Dec 2018 at 20:46

Good Evening Neil.

Well seems to me your just reading my thoughts.

Whilst I was reading your message I was giggling :)

Kinky stuff:))))))))))

(Great sense of humour thanks for bringing smile on my face:)))

're cream ..pyjamas. pads...Thanks for educating me. I mean it.I appreciated seriously.

But May I ask you this Neil...after you left the hospital daily how much how far you walked?is it ok to just walk to my local park and enjoy With the view so I'm talking about 10 minutes each way walk.

Also did you do pelvic floor exercises ?

Right hope this message won't disturb you

So sorry if I sound like an idiot.

Have a good night mate.

User

Posted 01 Dec 2018 at 21:32

Do you have anyone who can do your shopping for you? You (literally) won’t be able to lift anything heavier than a loaf of bread for at least 10 days after your surgery.

Very best of luck with your surgery,

Chris

User

Posted 01 Dec 2018 at 21:37

Not sure i get your interpretation of the information that i have passed on.

Nothinng kinky/funny about PCa as my wife will attest to.

As for getting out and about...that's down to the individual. You may need a week of recovery before that's possible...just 500 meters.

I would recommend pelvic floor exercises.

Neil

Edited by member 01 Dec 2018 at 21:40 | Reason: Not specified

User

Posted 01 Dec 2018 at 21:51

Hi Chris

I.m really really glad to communicate with you and rest of friends. Your all so lovely and caring people. .

The info you given to me Chris are so valuable. Honestly they are all noted.

Yes sound a bit scary for not able to walk long distance. Or won't be able to lift anything even 5 kilos

I thought it was going to be smiliar as biopsy operation .

I have really zero medical knowledge .I don't even know the meaning of 3+4 T7 but they are part of my prostate report.

Physically I do not have a relative in the UK. But yes there are few friends who can do shopping or cooking for me but they cannot stay with me over night..they cannot be with me 24/7

Chris I thank you so much for you taking time and responding to me.

Next week this evening I will be staying at the hospital.

Will update you .cheers mate

User

Posted 01 Dec 2018 at 21:56

Hello Again Neil

Maybe I misunderstood your comment re kinky...I'm so sorry my apologises please.

English languages is not my first language.

Got you.I won't be able to have a long distances walk even 500 metres...Blimey. that's scary:(

Anyway..I take seriously what you recommend and comments so far they all be noted.

Have a nice evening my friend

R x

User

Posted 01 Dec 2018 at 22:00

Best of luck,

Chris

Edited by member 01 Dec 2018 at 22:02 | Reason: Not specified

User

Posted 01 Dec 2018 at 22:03

Good Evening my friend

In really really greatful for your kind advise and thoughts.

All noted and appreciated.

R x

User

Posted 01 Dec 2018 at 22:11

Chris

Once again without yours and other's advises I would be dead!!!

Others friends and your advises why not available on nhs website's why they are not mentioned on NHS leaflets????

Very recently I attended a meeting that provided by UNIVERSITY OF LONDON COLLEGE. about 30 of us were sitting and listening the medics advises whilst looking at a projector.

They were not even slow about it.

I must admit that it was before my meeting with a radiotherapy professional.

Any way...what you say on here chris What other friends says on here I did not read any of them by my case specialist nurse or by other medics or read them nowhere!!!

Thank you thank you thank you!!

Rd x x

User

Posted 02 Dec 2018 at 07:15

Good Morning Neil

I couldn't sleep last night very well.hope you slept well::)

Question.:

Nexr week saturday I will have an operation and fallowing day (Sunday today) I will be recover and discharged from the hospital

I wonder 10 days will it be enough rest to attend a meeting somewhere else?

Meeting won't related to my prostate though.

Regards

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55 Years old Just diagnosed with prostate cancer

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