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Xander's Story

User
Posted 28 Nov 2017 at 00:41

No, you have either been given over-simplified information or have misunderstood (3) and the comments about a pathologist being something they used to do but no longer.

(1) doing kegels pre-op makes no difference to whether you leak immediately after the catheter comes out. When they remove your prostate, they have to cut the urethra and then join it back together - in most men that also means removing one of the two valves that control your urine flow. It is good to have a strong pelvic floor and to have practised doing the exercises so that you know you are doing them correctly but leaking a lot straight after the op is because you have had major surgery, and also down to the skill of the surgeon, not because you haven't got a good pelvic floor.

(3) some hospitals automatically remove some pelvic lymph nodes with the prostate; others only remove the nodes if they were suspicious on the MRI scan. The decision about nerves is also based on the scans as well as the details of the biopsy cores. Imagine sticking an apple corer into an apple and pulling out a section that has a bruised bit. If the bruised bit is from the middle of the apple, then the apple skin is fine to eat. If the bruised bit is from near the edge or can even be seen on the skin, you wouldn't eat the skin. The surgeon knows where in each core the cancer was found and when s/he is operating will often be able to see if the cancer is close to the edge. So even if they offer nerve-sparing surgery it is always with the proviso that if they get in and suspect the nerve bundles or lymph nodes are affected, they will remove them. Some hospitals do offer a service where the prostate is taken to the lab for inspection while you are still on the operating table but if the surgeon is experienced it is often not necessary.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2017 at 13:31

Thanks again Lyn & Thanks NormanA for the tip on the notes.


Had another conversation with the urological nurse from the surgery team


>> They might decide on doing a Bilateral Nerve Sparing where they "peel" the nerves away from the prostate and just "leave" them in the prostate bed. I thought they would attach it to the base of the penis. But, I think they just leave it where it was - minus the prostate.


This is what the nurse in the team is saying - dumb guy that I was - I became a bundle of nerves when I went to meet the surgeon and all of these ques flew out of the window.


>> Not sure whether the seminal vesicle, both of them will be taken out - I thought they are pinned to the prostate and bagged along with the fat surrounding the prostate. But, the nurse is saying removing the seminal vesicle makes the operation alot more involved. I thought if I am going for this RRAP and I never going to need my seminal fluid so why cant they be taken out.


Maybe its near the bladder and it probably has fibrous tissue that is attached to it from the bladder to hold it together.


I am going for "surgery school" - so will ask all these questions over there.


>> The cancer I have is a small cancer and can be managed with AS but in view that my dad passed away with cancer (which I think was because he had been a smoker for most of his adult life despite having benign probs with his prostate - he had a TURP) and 2 of my DAD's cousins - not my immediate cousins both had PCa. Hence, I am considering this RRAP.

User
Posted 28 Nov 2017 at 15:47

I think it is the other way round. The seminal vesicles are nearly always removed with the prostate - it is a very complicated operation to leave them behind because they actually run into the prostate gland. The nerve bundles are not in or near your penis; they are like a web of nerves that coat the prostate gland like apple skin so a nerve sparing op is like peeling an apple, removing the white inside and leaving the apple skin hanging on the tree.

Edited by member 28 Nov 2017 at 16:00  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Nov 2017 at 17:46

Originally Posted by: Online Community Member


well diffrentiated adenocarcinoma. Not sure what that means ?



Well differentiated is good, poorly differentiated, not so good.


I was told the chance of damage in later life by RT was only 1% is this incorrect. I’m 61.


Originally Posted by: Online Community Member


radiotherapy means that you don't really know for at least 5 years whether it has worked



Hi Lyn, I have not heard about this, I’m just 2months post RT. Does this mean having a PSA below 2 for 5 years?

User
Posted 28 Nov 2017 at 19:11

Most oncologists would say that no-one can be considered to be in remission until they have had 5 years clear after radical cancer treatment - the same applies to men that have had RP, women having breast cancer treatment, brain tumour treatments, etc. NICE guidance is that 10 years without recurrence is the official point for declaring someone is 'in remission' - my dad actually got a letter telling him the good news exactly 10 years after his RP (it came back 3 years later)

In the case of RT, there are a number of things to consider. While-ever you are on HT your PSA is held falsely low so time is needed after you stop taking the hormones to see what level you bounce back to and thus assess what your 'normal' is (because it can take a while for the effects of the HT to wear off and for your body to start producing testosterone again). Take a look at Ray's profile - his PSA bobs up and down like a yo-yo. Then you have to take account that the RT goes on working for up to 18 months after it finished - if not on HT at that point, you would expect your lowest PSA score to be at around 18 - 24 months post op. So the first couple of years are a bit unreliable as far as PSA testing goes, and years 3 / 4 provide a baseline. If you stay on or around 2 for 5 years after you stop the HT that is a good sign.

Interestingly, new research has shown that if women have HT for 5 years post radical treatment for breast cancer and then stop, their risk of the cancer coming back is just as high as if they hadn't taken the hormones at all - advice now is that the woman should stick with HT for at least 10 years or permanently. I wonder how long it will be before research is commissioned and similar conclusions are drawn for prostate cancer?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Nov 2017 at 15:36
Struggling Struggling to make a decision. Feeling physically exhausted because of this mental trauma. Even had a thought that this wld be bad for my PCa.

I still prefer the radical op instead of the AS but frightened of how I wld cope.

Went to see the counsellor spoke about this decision anxiety but no where nearer in my head.
User
Posted 29 Nov 2017 at 23:55

I don't know if this is helpful or too direct or even misguided.  I was the opposite to you.   I wasn't mentally strong with the tumour inside me.  To me every moment with the tumour was a moment that could be the beginning of too late.  The operation was 3 hours asleep and then wake up without a prostate.  I never had any pain although there was some discomfort.


I also didn't want to know too many details,  the surgeon will do what he needs to do.  The outcome will be what it is, my knowledge will make no difference to the op.  Although I did say I'd rather he was sure it was all gone than to risk leaving something. 


There are thousands of prostate operations every year and the best thing is to be focussed on what you want and get it done as soon as possible.


Good luck

User
Posted 30 Nov 2017 at 01:10

Great post Pete :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2017 at 15:37

Had my prostatectomy on 19th Dec. The previous date was cancelled because the theater heating had failed and other ancillary staff were not keen on doing me No.2 on the list - this time there was no escape - I was No.1 on the list.


Surgeon and Anesthetist both explained all the dreaded things that could go drunk eerr wrong - including that this is not a guaranteed cure. (Every day was is a bonus - Xander). I knew all that and signed the consent forms without hesitation.


Surgeon informed me that it had went "smoothly". I told him previously he was the expert and that he knew what to do. In the end he was going to do what he thinks is necessary - I had also told him previously that the "cancer was the enemy" - meaning any nerve sparing would be a bonus.


I was not initially in pain after my op but I took very long in recovery because of spinal epidural and the anesthesia. Post-op my blood pressure fell to 90/45 so I had an IV saline, also had some special IV fluid and was given IV paracetamol.


No unbearable pain but when I ended up in the ward I burped alot (it was nice and a relief) and then vomited all the water I had drunk after recovery as an after effect from the anesthesia. And, it actually felt nice. Nausea is one of the after-effects but it was not too bad at all.


Trouble only started when I realised the bed was sinking right down the middle and my back was on fire. The night attendant was obstructive and downright should not be working in that place - she refused to help because I wanted to stand up just to relieve my back - she hid behind health and safety and that she is not supposed to touch me - another attendant previously did not have any such qualms.


I knew the night staff would not turn the mattress which was all that was needed - basically I was spoiling their easy night stint. Anyway I just gave in had more pain killers because it was already 4:00 am. This was the worst experience I faced in hosp. - otherwise every body was professional, helpful gave tonnes of advice and really accommodating.


In the morning I visited another PCa sufferer who underwent the op but who was much more strongly built than me and we exchanged notes he mentioned a Jamaican RiceBitter and another fruit that looks like a custard apple which are good for cancer. I told him about Pomi-T. This guy was hardly out of recovery but he was raring to go home.


Of course we discussed how we should fight for "Our NHS - it's not free we have paid thru our NI contributions but it is the greatest gift any country could give to their citizens". And, all us patients in that ward agreed. Nurses need to be better trained and paid more. Some nurses are burdened with so many admin duties that some have not even taken blood for testing for over 4 years - that is not on - they are getting de-skilled.


Also noticed that after-care is rushed and rather disjointed - Prostatectomies are numerous now - about 2 to 3 day and the after-care is very imp. and an extra day in hospital would benefit us for learning the following


(1) the right way of taking an heparin injection without it being sprayed back at you


(2) information about taking a your first poo with your catheter in <== that was exhausting and really really difficult - in the end I just went in with my finger after wrapping tonnes of paper around my cathether because I was so frightened of catching any fecal matter on it. I removed the hard plug of cack that stuck and phew! it was such relief. This was the biggest challenge I faced @ home besides trying to get fruitful sleep


(3) The plumbing of the overnight catheter bags was a problem the first night and my wife (bless her - realized how much she loved me - really regret all the nasty things I had said about her in the past - they were unwarranted - her bark is always worst than her bite) accidentally left the tap open and it leaked to the carpet but luckily we had put it in a plastic bag - so the bag is okay.


(4) You cant do this after-care on your own - you will need your family to show you some love - we learnt who are real friends are - because they cooked food for us - came over - make sure you dont kiss and wish any of them because you could catch a cold. And catching a nasty cough could put severe stress on your stapled wounds - in the first few days they need to close properly and heal otherwise you could end up being re-hospitalized or with a hernia at those sites.


The main reason beds are so much in demand is what I could see was that so many old folk who are ready to be discharged cannot go home because their kids and so called loved ones seem reluctant to look after them at home.


Luckily, Indian culture is still rooted in proper family values. In fact in India, a single family member is available to sit thru the night or the day to give the patient comfort - the NHS should look into this closely - if the relative is healthy - screened for infections - simple things like turning an older patient so that they are more comfortable in bed would be boon to the NHS


It would make us a more loving, friendlier and family oriented nation.


Sneezing with the staples in is very painful - use a cushion.


My surgical dressings did become bloody the cut on the navel esp. so on calling our beautiful NHS nurses - she told me no problems take it off let them air, dab them down with salty water - we were given a sterile liquid and sterile swabs, but plain salty water and clean paper kitchen towels should be fine. Thank You NHS nurses. It is imp. they do not continue to ooze and that they dry properly.


Take photos of your stapled wounds and send them to your friends - tell them for a prostatectomy  you need to fix yourself like Arnie in Terminator.  A Prostatecomy can make a Man out of you. You will become more grateful of the tiny mercies you never saw before and whenver you face a social, emotional & medical challenge you can look back on these days and say - ok - I survived this - I am sure I will continue to find a way to surmount this - there is always a solution.


An extra night to come to grips with all of these things would be beneficial for prostectomy patients - in terms of after-care which is crucial for prostatectomy ops.


Again I would like to stress - on ringing the ward - we got EXCELLENT ADVICE from the specialist nurses, and the ward nurses. The internet helped for the heparin injection and my third injection I gave it correctly. 45 degree angle. Pinched thigh skin. Push the needle thru - DO NOT Plunge the heparin yet - once in release the pinched skin NOW push the plunger right down - a nice plateau appears - eerrr - it hurts a bit.


 


All in all - so far so good - coping.


Every New Day is a Bonus.


We must fight to keep are NHS free and for all - it's the greatest gift any country can give to their citizens. The Gift of Life and from that follows the Gift Happiness.

Edited by member 25 Dec 2017 at 15:53  | Reason: Not specified

User
Posted 23 Dec 2017 at 16:22

I am glad you have had your surgery now and are on the mend.


It sounds like you have had a hard time in recovery at the hospital. I also had a problem with a night shift nurse who was very reluctant to do anything. Fortunately the charge nurse stepped in and helped me. Like your hospital I cannot praise the rest of the staff highly enough.


Otherwise all was ok and I was out after the second night in hospital and on my way home with recovery pretty much to plan.


Here's hoping your recovery continues to plan and you get the catheter out in the next week or so.


Thanks for posting, an interesting read, well put.


Next phase in your recovery is catheter removal.


 


Best wishes, Ian


 


 

Ido4

User
Posted 24 Dec 2017 at 19:40

Hi guys


This is regarding Catheter Care -  it's soon going to be the 6 night I have had my catheter in - urine is flowing into my bag and it is clear


BUT there has been always a little dribble coming around the cath tube near the tip of my penis which has been consistently tinged red in blood .....


Is that normal what is going on ?


I expected the tinging of red blood to die down but it has not ..... Is this still coming from the joint between the bladder and the urethra ???


I am feeling normal no temperature and no discomfort .... should I be worried ?


 

User
Posted 24 Dec 2017 at 20:11
Xander

I don't like using the word "normal" but it is a common occurrence. It is often called by passing and can be quite painful at times. The tinge of blood could be the urine washing past the scab/congealed blood in the urethra. Clear urine is a very good sign and I personally would not be worried. Easier said than done with the Xmas holidays, but if in doubt get medical advice.

I have had urethral Catheters fitted about 10 times in the last four years and had by passing almost every time.

I was always told rose colour in the bag is okay red colour is time to get advice.

Thanks Chris
User
Posted 25 Dec 2017 at 15:45

Thanks ColWickChris for the advice.


And Merry Xmas 2017 to everyone who has responded to me & helped me thru this phase of my life


The first time in my life I did not land up in church for Xmas so I heard it on the Internet.


But, hey hey I changed my urine bag last time and we had a trying time getting it all plumbed properly had to get up several times in the night just to be sure it was draining as well as the previous one.


The link below from Dr. Hugo in the US who was a urologist who is also a PCa sufferer helped me understand what is going on


Regarding blood and urine coming out from the side of the catheter


I don't need Xmas gifts - I just need my urine bag nice and clear - rose coloured is fine - and as long as that catheter is in doing it's job it's okay


Links on Dr.Hugh's website that are useful for making a decision - Excellent for those just diagnosed - remember you dont have to go by these - your decision is very personal and as long as the consultant says it's ok - the decision you make is the best for you


 


IMP. What they should have told us about after care at the hospital about BOWEL movement
=========================================================================
Take lactulose to soften your stools because while you try and extricate IT it puts pressure on your bladder which also tries to then press urine out. And I had a panic attack today thinking that the Uretheral Anastomosis might come apart when my bag did not seem to be filling in. The thought of spending Christmas day in A&E was terrifying.


But, Hey! Hey! & Ho! Ho! my Foley's is filling and draining - Merry Xmas

Edited by member 25 Dec 2017 at 15:52  | Reason: Not specified

User
Posted 28 Dec 2017 at 14:49

Staples & Foley out. Was not painful at all. What a relief.

Noted that urine Urgency is pretty strong - was waiting for the car to reach home as soon as possible - just need to practice my kegels correctly.

Lovely sunny day - going to allow myself to enjoy these moments at least for now.

Merry Xmas again.

User
Posted 28 Dec 2017 at 17:59
Xander

Great news, another step completed.

I always carried a towel,spare underwear, trousers and a boots urine bottle in the car in case of emergencies. I only had to use them once or twice. If you have an android phone or tablet get the free app "prostate aerobics", it has reminders, instructions and a coaching mode. The apple version was a couple of quid. With practice you can isolate the right muscles to exercise.

Keep active but no marathons just yet.

Best wishes for a speedy recovery.

Thanks Chris
User
Posted 28 Dec 2017 at 18:33

Xander, Thanks for the link to Dr McHugh's website above. Interesting to read about a Urologist's own PCa diagnosis and treatment. Enjoyed his blog, and wished I'd seen his worksheet on choosing RT or RP G

Edited by member 28 Dec 2017 at 18:37  | Reason: Not specified

User
Posted 04 Jan 2018 at 14:03

I have a query ......


I was reading my discharge summary - it says


"the seminal vesicles and the vasa are freed"
"Routine specimen retrieval followed by wound closure"


Now before my op - I am sure that the surgeon did indicate to me clearly that my prostate together with my seminal vesicles and vas deferens would be removed. He also said the tubes from my testes will be clipped and left in situ.


What is really puzzling me is today I noticed what seemed distinctly a seminal discharge ? (Trust me, I know what that is !!)


Am really puzzled - how can that be ? Surely, the surgeon would not have left my seminal vesicles and vasa deferens in !!!


In fact, I was told it is very difficult to do that and that the whole thing comes of in a single bunch and once the prostate is freed - and the surgeon did tell me in recovery "that my prostate came away very cleanly"  ......


So I am kinda worried and puzzled ?


p.s. Need to confirm that this could be lubricant from the Cowper's gland which is at the base of the penis. Was not aware of this gland !! But, apparently as per these American posts on www.healingwell.com See this Seminal discharge after a prostatectomy ? Whaat ???

Edited by moderator 13 Jul 2023 at 06:43  | Reason: Not specified

User
Posted 04 Jan 2018 at 14:58

Yes, many men find they still get some issue from the Cowper's Gland - it is normal and not to be concerned about.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Jan 2018 at 15:55

I’ve had more issue from the Cowper’s gland than ever before tbh. Not sure why , but rest assured it’s quite normal

User
Posted 26 Jan 2018 at 00:22

I just watched Tessa Jowell's speech @ the Lord's regarding her fight against cancer couldn't help feeling sad and frightened at the same time. I am happy that she is coming to our aid and speaking out for fellow Big-C sufferers. Also, of note is the fact that she has to go to Germany for Immuno-therapy. Remember, about the couple who had to fight to get their daughter treated with proton beam radiation in Poland.


Watched Question Time and very worried that many current govt. ministers are making noises which sound like we must start paying for our NHS. Very worrying esp. for us folk who probably will not have the money or facility to go to Germany. Our only hope is the NHS.


A moot point is that she said it was the community of fellow-sufferers who are helping her in this fight against her cancer. Much, like our group. I couldn't agree more.


Below is a link of her address if anyone would like to read/watch


tessa-jowell-calls-for-global-cooperation-to-help-cancer-patients


Yes, the bit of global-cooperation is moot as well. Look how organic evolved global awareness/cooperation has helped in fighting against HIV/Hepatitis & AIDs.


Tessa Jowell is right.

Edited by member 26 Jan 2018 at 00:25  | Reason: Not specified

 
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