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Xander's Story - Just diagnosed,Gleason 6,Prostectomy Post-Operative After Care,Post op queries,Post Op - puzzling seminal discharge,Tessa Jowell

User
Posted 12 Nov 2017 at 17:13

Hi All


I have just been diagnosed with 3+3 (Gleason 6) via TRUS biopsy. 3 out of 12 cores came back with well diffrentiated adenocarcinoma. Not sure what that means ?


They were all from one side. It was 10% in each of those 3 cores. MRI showed that there was lesion in the LEFT periphery 1.3cm and another that is apparently 0.9cm right lateral base. (Not sure where that is - can anyone help ?) I am not sure whether the second one was pierced or not. I think my staging is t1/t2.


All my DREs were non-conclusive (aka seemingly healthy). Though suprisingly during my TRUS biopsy they suddenly seemed to have done a DRE which is now being stated as firm. My prostate apparently is rather small 23 gms.


From 2015 my PSA seemed to have risen from around 1.87 but I did not get tested because my GPs claimed that the getting up in the night to go to the toilet was an overactive bladder!! However in Sep 2017 I had 2 readings that were marginially high 3.4, 3.5 and then one which was 4.05 and the very next day 3.55


I was suffering from median lobe enlargement (only detected this year because I went for an ultrasound in India ) and had been going to the toilet in the night to urinate for the last 4 years. MRI claims that this transition/median lobe has a bit of BPH.


My father did die of cancer that had spread but he was a smoker who had stopped late in his life, they think it originated from his kidneys. He did have a TURP on his prostate 9 years before passing away and no cancer was mentioned then. (Not sure whether he had been biopsied for it during his Turp op - which I am sure they would have done but cant be sure).


No close relatives of mine have this problem. But, 2 of my dad's cousins both brothers have prostate cancer.One has had a radical prostatecomy and the other radiation. 59 and 71 years old. I am 55.


I have been given the option of radical prostatectomy or active surveillance.


 

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 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 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

Show Most Thanked Posts
User
Posted 12 Nov 2017 at 21:58
Hi,
The left lesion seems a low grade and the psa isn't very high, in fact surprisingly low I'd think. The 13mm lesion isn't that large but it's not small. Although with a smallish prostate it might seem relatively larger than many.

The right lesion 9mm is an unknown as the biopsy missed it. Did they suggest another biopsy is needed to find its grade? On the other hand an operation will remove them both. That the lesion is on the base of the prostate may lead to you thinking it is better removed, although without knowing its grade you can't be sure.

If it was ne I'd ask about the non biopsied lesion and whether because it is on the base and likely near the bladder it needs checking or if they suggest it should be removed. I think I'd be favouring an early op but might be thinking could I risk waiting to see how it goes. Knowing more about the second lesion might influence decisions.

Hopefully someone else will add to this, I'm not qualified to advise. Although we're all patients or close relatives who've read a bit and not medical practitioners.

Regards
Peter
User
Posted 12 Nov 2017 at 23:27

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'

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Nov 2017 at 06:57

Three words ,
Sack your GP

User
Posted 13 Nov 2017 at 07:26

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

User
Posted 13 Nov 2017 at 18:32

The grey area at right lateral base is right at the top of the prostate where it meets the bladder - very difficult to biopsy. My reading of it was that the scan had been done in India and the biopsy was done when Zander got back to the UK?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Nov 2017 at 14:26

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.

User
Posted 14 Nov 2017 at 21:15

It looks like there is a danger of them delaying my op because I am a possible Active Surveillance Candidate.

All ops are only in St. Georges - Croydon University does only biopsies.

Very worried that I might be delayed if I need to do the op quickly - What can I do to ensure that this is not the case ?


 

User
Posted 14 Nov 2017 at 21:48

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

User
Posted 14 Nov 2017 at 23:17

Unless there is a cancellation and nobody before you wants it, the surgeons are not going to give you an early op unless there is real urgency which seems unlikely to be the case from what you say. The number of surgeons and how many ops they can perform in a given time is limited. You could perhaps say that you would be prepared to have the op at another hospital if this would provide a significantly earlier date. I am a little surprised that Croydon University Hospital (previously known as 'Mayday' when I was diagnosed there) are not doing radical Prostatectomy ops. I suppose it's part of the ongoing policy of concentrating expertise in fewer hospitals, so finding a suitable alternative hospital could be difficult. The Sutton Branch of the Royal Marsden is not very far from Croydon U Hospital but may also have quite a waiting list. As Peter say make your wishes known and ask for the earliest date your op could be done.

Barry
User
Posted 14 Nov 2017 at 23:43

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Nov 2017 at 11:41

Hi,


I was told there was no hurry for the operation being diagnosed with T2 and a PSA 4.15. I wanted to get on with the treatment and pushed and got the operation pretty quickly. The result was that the cancer was poking out of the capsule but they had got clear margins but had regraded to T3b. That was in Nov 2013. I decided on adjuvant radiotherapy in March 2014. At the moment all is well PSA at 0.01ng/ml. Remember everyone is different their cancers are different. My advice is to get all the information you can, PCUK booklets are excellent the PCUK specialist nurse will help. Give the matter careful thought and formulate your questions and get answers from the consultants. Not all GP's are well versed on prostate cancer, I find the young new doctors the best, I had a really good consultation with a student GP. I might be an expert on me but I am not an expert on prostate cancer, you need to become knowledgable on you and your prostate cancer. I am very lucky, I found it strange when people stopped asking me how I was, they think I am cured I hope they are right.


All my best wishes, I will follow your story, please feel free to ask me anything.


NormanA


 


 

User
Posted 17 Nov 2017 at 16:30

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Nov 2017 at 18:05

Hi Lyn,


 


Not only are young GP's up to speed the young Lady GP's have in my opinion been the best, they seem to have more knowledge, understanding and sympathy and are much more willing to explain things. This also goes for consultants.


 


NormanA

User
Posted 25 Nov 2017 at 18:31

The Surgeon


=========


 


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 ?


 

User
Posted 25 Nov 2017 at 19:11

I don't know about groups but if you speak to the PCUK nurses, they should be able to put you in touch with a mentor by phone - a man who has been through it and volunteers to speak to other men. When John was first diagnosed he was paired with someone of a similar age who phoned twice and was very helpful.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Nov 2017 at 19:18

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'

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Nov 2017 at 00:32

Hi XanderNina,


I asked my surgeon the same question about spilling cancer cells, he said it would not happen. He told me not to worry about it. If you want to watch a video of the robot surgery type robot assisted radical prostatectomy video into google.


I don’t know about the fat pad, they did not remove my lymph nodes but did remove my left seminal vesicle.


I was 67 when I had my robot assisted surgery. They assess whether you are capable of withstanding the surgery and if not they don’t offer it. They tend to have a cut off age of 70. I am not young to a 55 year old but I handled the operation fine with no pain and was home the day after the operation, I didn’t need any of the painkillers they sent me home with. My continence was a problem post op but was sorted with pelvic floor exercises. Erectile dysfunction is the only issue for me, I have had help but with no success.


I understand your concerns about the consequences I had concerns. All our decisions and indecisions have consequences and we have to weigh up what are the issues and what is important to us individually. When I read your story I get the feeling that you are mentally strong but you have some fears that are eating at that strength. I had fears as well, I can now look back at those fears that never materialised but they were real fears at the time. Write your concerns and fears in a list leaving spaces between each one, put it on one side and leave it over a weekend and then re-read them writing notes n the spaces, it’s like answering an email and leaving it overnight before you send it, in the morning you delete half of it or don’t even send it. I understand it’s not easy but don’t let it get on top of you.


My experience was very good and I never had any pain but that is not to say some people have pain.


I hope this helps. Let me know how you get on.


All the best


NormanA

User
Posted 26 Nov 2017 at 12:18
Hi I was 55 when I had RP I wouldn't say I am mentally strong and it was very stressful time.
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.
User
Posted 27 Nov 2017 at 21:45

Hello Friends


Before I begin I would like thank Frank & Lyn and all the rest of you wonderful people who replied to my posts for the help & advice you give me & 100s of people over here.


I have a few questions


(1) Would 2 weeks or less of Kegel ... Pelvic exercises enough to cope with the initial lack of continence after the op (I am aware that it's just as imp. to do these exercises for the rest of one's life after the op as well ) But, does the amount of exercises have any bearing on the continence issue later on


(2) I was due to meet the uro-oncologist but for some reason because I have indicated that I would be leaning towards surgery or AS - they seemed to have cancelled that appointment. I would still want to meet this chap.


(3) I wanted to ask the surgeon how would he know what to remove in terms of nodes & nerves because all he has is the knowledge of possibly where my 2 lesions are based on the MRI.


Apparently in the US they use some fluorescent dye to check. 


I have been told in the past they used to have a pathologist on hand to make a quick check at the operating table but this is a practice that is no longer in use.


It looks like over here they only test for +ve or -ve margins after they have bagged everything - by that time you are all stitched up !!!


Rgds as always


Xander


 


 

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


 


 

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 member 04 Jan 2018 at 14:31  | 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


If life gives you lemons , then make lemonade
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

User
Posted 26 Jan 2018 at 00:34

On another note - I wanted to know what is the waiting period in weeks as to when your PSA can be checked after a prostatectomy ?


Consultant seemed to say any time after 4 weeks - others are saying between 6 - 8 weeks ? I was wondering whether how long the latent PSA left in my blood stream would take to come down ?


Also, have other post-op patients here have been approached to take part in trials - Have been approached w.r.t an Aspirin trial but, on further reading it looks like one might get a placebo or a very high daily dose of 300mg of Aspirin. The odds of getting the 100mg aspirin will be a low 33%. Not even sure if 100mg is high to take daily. My mother suffered from stomach bleeding because of NSAIDs (of which Aspirin is one type) so I am still placing what I am going to do that on hold.


 

Edited by member 26 Jan 2018 at 00:37  | Reason: Not specified

 
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