Xander's Story

The fact that they have offered active surveillance needs a bit more explanation - could you phone your nurse specialist (if you were allocated one) to ask about the lesion on the right hand side? It may be that you had high definition scans and the doctors are confident that the RH grey area is benign?

Also, has it been explained to you where the two choices (surgery or AS) came from? Did a multi-disciplinary team look at your results and make a recommendation or was it just the surgeon? If just the surgeon, you could ask now for a referral to an oncologist to discuss alternatives such as external beam radiotherapy, brachytherapy, etc.

PS non-conclusive (inconclusive) doesn't normally suggest 'healthy' or 'normal'; that would have been described as 'normal' and/or 'soft'. Non-conclusive suggests that your prostate did not feel soft but nor could they feel tumours breaching the gland so the result is 'we can't say it is cancer but neither can we say it is fine'

Hi there,

I would also want to ask why they did an MRI and then a non targeted biopsy?

I would want to be 100% certain any identified lesions were biopsied before making a decision plus as Lynn said why is AS offered but not RT?

My husband was diagnosed with Gleason 6 (3+3). Diagostic process was MpMRI scan which identified the lesions so the urologist could target using a template biopsy.

Lots of uncertainty would make me want a new GP and a second opinion on diagnosis route!

Good luck

Thank You All for your replies - much appreciated.

I did ask my consultant who gave me my diagnosis - he was the guy who actually did my biopsy - and I am sure I asked him "did you pierce it" and he said that he had biopsied that area and found nothing.

But, being a TRUS biopsy he could have missed it.

Okay so "base" here means at the top and "lateral" means towards the side. So, maybe just maybe it is not touching the bladder.

He also said that they had reviewed my biopsy samples twice and had discussed my case in joint meetings.

When I spoke to the surgeon - he said because of my age - he would not recommend radiation because of it's associated risks of generating malignancy itself.

I have been told that irradiating the prostate later makes it "rubbery" and difficult to remove later on.

My appointment with the uro-oncologist is so far away nearly at the end of 30th November.

Hi,

I had similar concerns a year ago.   My scans were 3rd Nov and consultant appointment 23rd.  I was offered surveillance with a template biopsy or surgery or RT at the appointment but I made it clear I wanted surgery.  He said the Regional MDT had a drive to offer surveillance but he'd recommend surgery.

I also kept mentioning my concern about mine being near the edge and he agreed to contact the surgeon straight after the meeting and before the MDT.  It might have had an effect as the surgeon rang a couple of days later and fixed an appointment. As I left the surgeon's room I half jokingly said I was ready for surgery tomorrow or asap and I noticed his eyes move as if a thought came to him.

The day after I was offered an op on Friday 16th Dec and they'd just booked the theatre for the morning.  I was told it was fast because no-one wanted surgery so close to Christmas, although I found it hard to believe.

The Macmillan Nurse played down my comment about mentioning speed as she said everyone wants treatment right away.

So my own recommend is to be focused on what you want and make sure they know you're worried about the location of the unknown lesion, and ask if they can contact anyone directly to speed things up.

Regards

Peter

Edited by member 14 Nov 2017 at 22:53  | Reason: Not specified

Xander, you were given the option of surgery or active surveillance - they wouldn't be offering you AS if there was any reason to think you might need an urgent op and therefore they are unlikely to be able to justify bringing your op forward before other people who really do need treatment quickly.

Interesting Norman, it was a trainee GP who decided (intuition?) to refer John to urology with a PSA of 3.1

The Surgeon

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Met the surgeon - spoke about "margins" apparently sometimes when they handle the prostate where the robot holds the gland - it can accidentally tear but was assured that it does not always mean that the cancer would leak out. Was a little worried about that !

Also spoke about the fat pad around the gland - sometimes that can harbour lymph glands - he said that will be removed anyways but, he also said that it really unlikely to contain cancer cells

Forgot to ask the surgeon whether I could meet young (55+) people who have undergone prostatectomy first hand so that I could feel that it is going to be okay.

I want to do the op - even though Active Surveillance is an option for me. But, I am afraid that I might NOT BE MENTALLY STRONG enough to handle the consequences.

Cause I have never had to subject myself to so much pain etc. i.e. the reason I want to meet people hopefully this week of guys who have done this op - meet them firsthand. Anyone know any PCa groups where such people will collect THIS week ?

Your mental strength is a worry for you. You will cope, partly because you will come to realise that you would be facing the same emotional challenges regardless of your treatment choice - radiotherapy means that you don't really know for at least 5 years whether it has worked, AS is no good for the nervous, whatever happens you may spend the rest of your life fearing that any ache or pain is new mets. It all sounds terrifying but every day, you will realise that you have survived and after a while you have a new 'normal'

That was 31.03.2014 everything went well in spite of all the worrying and I was allowed home the next day which happened to be our wedding anniversary.

Over 3yrs now since surgery all PSA results so far have all been undetectable last one being 7/07/2017, No ED or incontinence issues.

I don't take anything for granted next PSA test is in 4weeks time waiting for the results is very stressful, but feel very lucky thus far and would make the same choice again to opt for surgery.

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.

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

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

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 ?

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
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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

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