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What now - any advice?

User
Posted 30 Mar 2018 at 15:50
Hi. I was administered morphine in the recovery room to counter the pain to the incision above my belly button. It immediately worked after several seconds.

My hospital stay was just an overnight stay... The surgeon visited me at around 8.30am the day after the surgery to see how I was getting on. He then suggested I could go home in the afternoon and I gladly accepted it. After this, the nurses removed the drain tubes and bags and set up a leg-fitted urinal bag. The pharmacist came and gave me a box of 28 injections, some paracetamol and ibuprofen tablets to take home. My wife picked me up at 3pm and off I went home. I felt no pain at all during that time. I discarded my compression socks as soon as I got home as advised.

I had to inject myself daily every morning for 27 days. I injected on my thighs, each taking alternative turns. No pain at all.

I think it was the third day after surgery that I started to.feel some pains, especially around my stomach and pelvis floor area... The stomach, as i inderstand it, was pumped full of carbon doixide prior to the operation to create working space. The pains are a consequence of "as the morphine wears off the pains come out to play." This lasted for about 2 days and they were very bearable. It took about over a week before the swollen stomach eventually receded to my normal size. I weighed myself when I got home from hospital and I was alarmed to find my weight at 15 stones! This morning I got on the scales and I was glad to read it has settled at 13st 9lbs.

went out with my catheter attached to my right leg and it presented no problem. The catheter was removed after 14 days. I have read horror stories from other people who underwent RP, but my experience was nothing like theirs, it was pleasant experience considering the kind of major operation I underwent.

I am confident you will not regret your decision and in the long run you will be grateful to have undergone such an operation.

Yes, I am as deaf as a post and I am labelled as profoundly deaf which renders hearing aids useless to me. However I am a proficient lipreader. I was a construction site manager for 43 years, working mainly in London and around the Southeast of England althpugh I was born in Newcastle upon Tyne. Earplugs are absolutely useless to me - lol!

Barbados is a country that is close to our hearts and the Bajans are great people. They are very friendly and helpful - sometimes strange I may say. Whenever I mention we both (my wife and I) are deaf, most of them were eager to say that their cousins are deaf! I have yet to meet one who said they have a deaf family member - it is always "My cousin is deaf."

We first went to Barbados 14 years ago and made great friends with the locals. Since that time we stay for a month per holiday... and we never looked back.

Must halt here awhile as I have to go to my club for my daily pint. I hope I have reassured you by answering your questions. You will be well advised to take the Retzius-sparing robotic radical prostatectomy and I am confident you will not regret your decision.

Rafael.

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 03 Apr 2018 at 16:29
Been to see the Professor today. Laboratory report on my prostate gland is ALL CLEAR and the cancer was confined to the prostate gland only and did not spread. Happy days ahead!

I mentioned how long it would be before I am able to get an erection.

I was prescribed 3 Viagra tablets a week and he said it would be about 2 months.

I am to see him in 3 months time, and take PSA test a week before.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 03 Apr 2018 at 17:04
Rafael

Great news on the lab report, looks like you are heading for a one hundred percent success. Enjoy that holiday and all the best for the future.

Thanks Chris

User
Posted 03 Apr 2018 at 17:30

Excellent news Rafael.

Well done. Long may it continue

We can't control the winds - but we can adjust our sails
User
Posted 03 Apr 2018 at 17:41
Hi Rafael

It's been very interesting following your treatment and what great results. Long may it continue.

All the best

Kevan

User
Posted 03 Apr 2018 at 18:49
Good news Rafael!

If Viagra (sildenafil) works for you - great. But that was the first ED drug. I bought some over the counter from Wal-Mart in Acapulco for my slightly droopy dick about twenty years ago and it made me feel sick.

The 3rd generation drug is Cialis (tadalafil) which you can have as a daily dose of 5mg. I find it very efficacious and it lasts for 36 hours at least if you take the one-off 20mg dose.

User
Posted 03 Apr 2018 at 21:29
Hi. I have never taken pills such as Viagra in my life. He said I should take it to start boosting the system and u can always stop it when natural body functions take over. So there is no harm in it. Well, I am looking forward to the experience, and I can always change it to Cialis if Viagra is of no good.

The meeting today was very informative and interesting. The pathology report on my prostate gland showed slightly different results from that obtained via MRI and TRUS biopsy. My cancer turned out to be only stage 2, not stage 3 as originally stated. It is T1bN0M0, not T2bN0M0. This is quite interesting and leads me to believe that men who were initially diagnosed should not worry too much when they get higher measurements of cancer than what really is. My initial Gleason scale of 4+3=7 was slight wrong - the pathology report says it is 3+4=7.

Anyway, it is all over now for me (touch wood) and it is time for globetrotting. A lot of people keep telling me to enjoy life as much as one can because no one knows what is round the corner. This puzzled me because I always know that there is a pub around the corner. That is my attitude to life and I do not intend to change it. However, having been diagnosed with prostate cancer made me feel more humble and and recognise the fragility of life. With that in mind, I am donating towards the new cancer centre at the Royal Surrey County Hospital, towards CRUK and towards the Great Ormond Street Hospital for Sick Children. I think they all deserve more than what I got, bearing in mind I was operated on by a truly brilliant surgeon. For him I have nothing but gratitude - and gratitude is the memory of the heart.

When is your operation due?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 03 Apr 2018 at 21:58  | Reason: Not specified

User
Posted 04 Apr 2018 at 05:23

Waiting for a date. Should be in the next couple of months, but his secretary is on holiday until next week. No rush.

User
Posted 04 Apr 2018 at 08:01
Within the next couple of months? That seems to me an unusually long wait. My operation took place within 3 weeks of seeing him.

Let's hope it is not going to take too long.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 04 Apr 2018 at 11:58

Rafael, I am quite sanguine and in no hurry about the whole thing for several reasons.
I have no symptoms, despite what doctors tell me, and I have never felt so well.
Tommy the Tumour is medium grade aggressive, and we may well have been bosom buddies for up to seven years or more. If the Gleason score was one less, active surveillance would be an option.
The Prof said he’s going to do some procedures in Jamaica shortly, not sure for how long.
I have some social arrangements in May, not least the annual London Champagne Tasting, which is like a second Christmas Day for me.
If my GP hadn’t ticked the box for PSA on my annual blood test, it would be next November before my next one, or the November after that or.....unless I developed symptoms.
Finally, I am self-employed, so I need to plan my work around my convalescence, although I can do a lot on this iPad.

First week in June looks good!

User
Posted 04 Apr 2018 at 12:25
Your situation is now understood. Maybe taking a cool la-de-la approach is best. It certainly looks like it in your case.

My case was let's get it over and done with as quick as I can as I have holidays booked - Barbados from 14 April, Cyprus in June, Las Vegas in July, Benidorm in September and Barbados again in November. I have left August free for that appointment with the Professor!

Nevertheless I will keep an eye out for your progress.

Cheers

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 05 Apr 2018 at 02:08

Very pleased to read the results of your follow up and downgrade. It seems most post-operative biopsies are upgrades. Buried deep amongst all the clinical information I got from the NHS hospital was a note that said with my staging and score there is a 37% chance of recurrence within 5 years after RP.

Strange that no doctor has ever mentioned that to me! Perhaps I wasn’t supposed to see it. Any idea what your percentage is? Obviously better now following your downgrade.

“Now I am become death, the destroyer of worlds”. Sanskrit and J Robert Oppenheimer, Chief Scientist of the Manhattan Project.

It seems everyone writes something profound at the end of their posts, so I didn’t want to be left out!

Edited by member 05 Apr 2018 at 04:35  | Reason: Not specified

User
Posted 05 Apr 2018 at 10:44
How interesting to read of the 37% prediction... I find this most unusual, especially when the medical profession tends to avoid putting this in black and white. I was never quoted a percentage with regard to my prostate cancer situation.

However, way back in 2011 when I collapsed with pulmonary embolism following a Hellux Vaglus (bunions to you and me!) operation, I was put on warfarin. After 3 months I informed the hospital I am stopping the course. One lady of fearsome proportions who was dealing with my case was not pleased. She said it was safer to stay on it for life - to which I responded "No way." She scribbled gown on a piece of paper (cos I could not lipread her when she was moving her lips in anger) "You have 22% chance of recurrence of blood clots within 5 years if you stop warfarin now." I wrote back on the same piece of paper "Thank you for being helpful and giving me confidence to stop warfarin. Having 78% chance of not getting it within 5 years is great news." I just walked out. Warfarin interfered with my lifestyle and had to go. My GP was not pleased but it was my choice.

I did raise the question at my meeting on 3rd April whether the cancer will eventually return. He simply said to me to read the pathology report and accept it. If it says all clear, then it is all clear.

I think all the good doctors actually try to be impartial and factual, not giving patients any false sense of hope. The urology doctors in Guildford seem to fit that mould and they have my respect.

I believe that in all reality every person on planet earth has a daily 50-50 chance of living another day, so any suggested percentage greater than this is very welcome (sic)!

I would not read too much into percentages because they are always based on generalisations, not tailored for an individual. Ignore the 37% and think about the 63%, it looks better doesn't it?

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 05 Apr 2018 at 10:56  | Reason: Not specified

User
Posted 05 Apr 2018 at 11:01

Rafael, you are showing your lack of understanding of the nomograms used to predict outcomes. The % will be specific to the patient, not a generalisation - most MDT decisions / recommendations are based on them and although it doesn’t surprise me that your particular surgeon might not like talking about the stats that doesn’t mean that others avoid it. In our region, it is included in the diagnosis letter.

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

User
Posted 05 Apr 2018 at 11:48

Allow me to put it the correct way of saying - the tool used to calculate the percentage of recurrence of PCa is a general one. I have not got my prediction in my diagnosis letter and it is a good thing because I am not one who is taking predictions seriously with regard to my part. Anyone can obtain a prediction by going to https://www.mskcc.org/nomograms/prostate, fill in the details and get a percentage prediction. But at the end of the day, it is just that, a prediction.
Some men may feel reassured by the prediction but there are others who will be scared by it. It is my life experience that predictions should not be given unless requested.
Suum Cuique - but this is my approach.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 05 Apr 2018 at 13:51  | Reason: Not specified

User
Posted 09 Apr 2018 at 16:15
I thought this article may be of interest on this PCUK forum - www.dailymail.co.uk/health/article-2291798/Prostate-cancer-In-cruel-twist-fate-prostate-cancer-experts-ALL-hit-disease-Their-stories-vital-reading-men--loved-ones.html

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 09 Apr 2018 at 17:07

Yes it has been shared before, as 2 of the 3 were / are trustees of PCUK. There is also a 4th consultant, Sean Vesey, and they published a paper together - https://onlinelibrary.wiley.com/doi/pdf/10.1002/tre.322

Sadly, John Anderson and Sean Vesey died (in 2013 and 2015) but the other two are alive, kicking, still improving men's health and in Roger's case - tweeting.

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

User
Posted 09 Apr 2018 at 17:07

Rafael, thank you. I read the paper version of this rag, but missed this story, obviously. I thought it a very balanced story and covering three different cases did so fairly and helpfully.

AC

User
Posted 10 Apr 2018 at 10:02
There is another article in today's Mail that may be of interest -

www.dailymail.co.uk/health/article-5596559/Would-try-plug-stops-men-going-loo.html

It sounds very helpful and hopefully it won't be too long before it can be made freely available in our country.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 11 May 2018 at 12:31

I just got back from Barbados where I had a great time. I was 7 weeks post-op when I started my holiday and I took 2 boxes of Tena Ultra Lights. As it turned out, I have not used a single pad during my holiday and I was very pleased about it. Today, which is a little over 11 weeks post-op, I had to use a pad due to sneezing! There's something cold about the British weather, even though I am aware that it had been hot in England for about a week. Stress incontinence is still with me, but my body is now getting the better of it.

The Retzius-sparing type of radical robotic prostatectomy has most definitely benefitted me with my recovery. My urinal frequency is about 6 times a day tops and I do not get up during the night to answer the call of nature. However, I will measure the success of my situation on 3 July when I am due for my first PSA test.

 

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti

 

 

User
Posted 06 Jul 2018 at 11:49

I am 20 weeks post-op and I got my first PSA result this morning. It is <0.1 ug/L. Is this good? There is a note added to the result and it reads:

Age related PSA reference range for Caucasian men PSA reportable lower limit has been reset to 0.1ug/L as of 12/08/2016 from a previous limit of 0.02 ug/L adopted on December 2014, following notification by the assay manufacturer.

Can anyone inform me of my PSA situation as I can't make heads or tails of what the above note is talking about. I am not due to see my urologist until Tuesday 11 July.

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti.

Edited by member 06 Jul 2018 at 11:50  | Reason: Mispelling

User
Posted 06 Jul 2018 at 16:01
Rafael, it is very simple. Two or three decimal place scores are usually not quoted now as the assay process producing them is unreliable. Less than 0.1 (as yours) is what used to be called undetectable. You should be happy with that.

AC

User
Posted 06 Jul 2018 at 16:13

Auld Codger,

Thank you for your explanation. "Less than 0.1" sounds very loose and indecisive to me.  How disappointing that we now cannot obtain greater measurement accuracy than the term "less than 0.1." If that is what we get nowadays, oh well then.

 

Rafael

 

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

User
Posted 13 Dec 2018 at 17:51

I received a letter from the hospital that did my TRUS biopsy last December 2017 and I was surprised to be informed that there is a current investigation going on with potential mix-up with my histopathology samples. This is being run as a SIRI (serious incident) internally within the Histopathology and Radiology departments. The hospital wanted to identify whether the original biopsy assessments from the end of 2017 are mine and correlate this to a blood test and my RP samples. I gave them blood sample and they will undergo DNA analysis.

The hospital explained that the errors may have occurred either in Radiology or Histopathology processing.

I had a meeting with the head urologist and he apologised on behalf of the hospital. I informed him that I made my decision to remove my prostate gland based on the results of the samples from TRUS biopsy. He mentioned that my cancer had always been low risk and there is a chance that I did not need to go for RP in the first instance had the correct Histopathology samples had been presented to me. We agreed to wait and see the conclusion of the investigation which is expected in mid-January 2019.

I am preparing myself for possible outcome scenarios. Does anyone on PCUK know of any case, or anyone who has been in such a situation as outlined here?

I would very much appreciate advice and assistance on this matter.

Regards

Rafael

He who lives, loves and knows what it means to die  -  Jiddu Krishnamurti 

User
Posted 13 Dec 2018 at 19:03

Hi Rafael,

What a strange turn up for the books! I presume you did actually have cancer?

But thanks to the ministrations of Da Vinci and his sidekick Professor Whocannotbenamed, you and I, have not got cancer any longer. I have just sent Da Vinci a can of WD40 for Christmas and a bottle of Champagne (to lubricate his sidekick) by way of a thank you.

At least your cancer is gone, so I suppose we could complain about the ‘trauma’ we suffered with our prostatectomy - I know neither of us did in fact, thanks to our brilliant surgeon.

On one hand you might think f*** it, I’m cancer free, but on the other hand the avaricious side of me thinks “do I fancy a fortnight at Sandy Lane in Barbados by way of compo in a medical negligence claim?”

If you were on active surveillance instead of surgery you would most probably have had to have radical treatment at some point later anyway.

So you could do nothing or sue for negligence. I wouldn’t blame you whichever path you choose.

Merry Christmas. Off for a large dose of vitamin sea tomorrow - the Red Sea.

Cheers, John.

Edited by member 13 Dec 2018 at 19:14  | Reason: Not specified

User
Posted 13 Dec 2018 at 19:30

Hi Rafael .  Do you know if it is just you affected by this " mix up" or are others involved.  Could be a can of worms being opened. I wonder how they discovered it.

 

Regards

Ann

User
Posted 13 Dec 2018 at 19:51
At a minimum, two people must be involved. A “mix-up” must, by definition, involve the misidentification of two samples at least.

Chris

User
Posted 13 Dec 2018 at 21:44

Yes. Another person is involved. What I was told was that the other person received the appropriate treatment in accordance with the results of the sample which was attributed to him and his biopsy results. After several months it was discovered he was no better and they found his cancer level was high. It was from that point that the oncologist started to make queries and hence the investigation now.

As for me, if it turns out that I was given the wrong results, I will surely take action as I am now of the opinion that I would not need to remove my prostate gland. I will just sit and wait for the result of the investigation.

Regards

Rafael

He who loves, lives and knows what it means to die - Jiddu Krishnamurti 

User
Posted 13 Dec 2018 at 21:50
Quite right, too. Obviously mistakes do happen, but when they have potentially life-changing consequences the people involved need to be held to account. Apologies are insufficient.

Chris

User
Posted 13 Dec 2018 at 23:07
What a horrendous mix up. I hope you get the correct answers now and that the mix up cannot happen again as the result of your action.
User
Posted 14 Dec 2018 at 23:52

I had a look through all my letters and test results, both TRUS and removed prostate gland results. I came across another letter which refers to my pre-op test results and it mentioned my PSA before the operation was 3.8! I recall making a query about it and asked why it was so low compared with the TRUS biopsy results which placed me in stage 3, Gleason 4+3 T2b. The response was that it was unusual but could be a one-off oddity. This recall struck a match for me. The pathology result on my prostate gland  turned out to be T1cN0M0, and the volume of cancer <0.1% and contained within the prostate gland.

I am starting to feel I have been mislead by the initial biopsy diagnosis. But I still have to discipline myself to adopt a wait and see stance until the result of the investigation is made available.

I will just enjoy Christmas with family and friends and may I take this opportunity to wish you all and everyone a very happy Christmas filled with love and warmth with your family and friends. God Bless you all.

User
Posted 15 Dec 2018 at 04:14
Looks like you might be in for a few stays at Sandy Lane!

T1 is barely cancer, and indeed there is a school of thought that it should be given a different name and not even be called ‘cancer’ at all - I prefer ‘a little difficulty down below’.

There are so many ‘what ifs?’ with PCa, but I will never ask myself ‘what if I’d had a different surgeon?’.

Enjoy your Christmas.

Cheers, John.

User
Posted 02 Jan 2019 at 07:42

Thrc Saturday before Christmas I was told I may have prostrate Cancer.  I'm still stunded.  I work at a mall and went to the Santa house and told Santa thanks for the stocking stuffer.  He asked if I liked it.  I asks him whatcis nice about prostrate Cancer and then said why couldn't you of just given me a lump of coal.  Seam like alot of you diagnosed with this cancer at Christmas time.  

In 2016 had biopsy all was benign.  My PSA has been up.  Prostrate has been enlarged.  Since biopsy had like 6 infections and one bout of prostatitis.  Now PSA up again think 7.0 was my last number and no infection.  So Dr. had me get an MRI.  It shows a nodal about 5mm may be cancer.  Dr. is sending me to another Dr Dr Ellis in Seattle WA.  Anyone here know him?  I have an appointment Jan 23 2019.  Talk about this and about my holding pee in my bladder.  Void 325cc but do ultrasound and see 400cc still in.  Did ultrasound of my kidneys and found they are ok.

I'm scared, find myself criing alot at times, I praying but at times feel like G_d is far way. (I'm Jewish so we don't spell out G_d's name as then we can't use it in vain).  I'm also a Christian so I know who my Redeemer is.  I also know that G_d will never leave me or forsake me.  But right now He seams so far away.  Dispare seems right around the corner but I don't want to think of it want it as far away as I can as I have tried to kill myself 3 times in my life.  I don't want to go down that path with this.  I just pray and talk to folks I know about it.  Thats only reason I'm sharing here cause I know others here may gone or going through same thing.  My regular Dr. Wants to put me on depression meds but all of them have a side effect of wanting to kill yourself so why take something that will do that to me.  Each time I try before I was on meds.  No thank you, been there, done that, got the tee shirt to prove it, not really the tee shirt but thats how the sane goes.  LOL

So where do I go from here.

User
Posted 02 Jan 2019 at 07:54

Originally Posted by: Online Community Member
Looks like you might be in for a few stays at Sandy Lane!

T1 is barely cancer, and indeed there is a school of thought that it should be given a different name and not even be called ‘cancer’ at all - I prefer ‘a little difficulty down below’.

There are so many ‘what ifs?’ with PCa, but I will never ask myself ‘what if I’d had a different surgeon?’.

Enjoy your Christmas.

Cheers, John.

You can't say T1 is "barely a cancer" Bollinge!!

If it's a G10 T1 it's probably as bad as it can be and would need to be treated imediately.

 

 

User
Posted 02 Jan 2019 at 11:14
I think Bollinge had been on the Christmas spirit and confused T1 with G6 😂🎄😂🎄😂🎄
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Jan 2019 at 11:38
Yes indeed we were very relieved when my sons melanoma was graded at T1(a) ...an early pick up based on a vigilant dad...it is still the most aggressive type of skin cancer and they still took out a big chunk of his calf and have him on 3 month checks..
User
Posted 04 Jan 2019 at 16:43

I got back from Barbados to find England cold and damp. On the 31st, I had a PSA blood test (11 months post-op). I got the result this morning and it read <0.1. Strangely in view of the fact that my initial biopsy may have been mixed up with another person, I expected the <0.1 result with utter confidence. I am due to see my urologist at noon on 8 January. Hopefully the result of the investigation will be made known, but if not, then I will have to find out on 30 January when I have an appointment with the other urologist who dealt with my biopsy in the first place.

As for Bollinge's comment that T1 is barely a cancer, I am no expert but I can see that his comment is just a figure of speech. I understand there are two different stagings, clinical and pathologic. I suppose  Bollinge was commenting on the pathologic stage of T1. I am aware that there is no T1 classification for pathologic staging of prostate cancer in many literature available, and yet my laboratory results state that my cancer is pT1c, Grade group 2 (Gleason 3+4=7). This is considered low risk by my urologist.

Regards

Rafael

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

 

User
Posted 04 Jan 2019 at 17:03

Frank,

I can understand your feelings and thoughts as I went through them myself when I was first diagnosed with prostate cancer. However, one must take command of one's emotions and face facts. There is one pleasing fact that I found in my early stages - prostate cancer can be controlled and in a number of cases be cured in the early stages especially if the cancer is contained within the prostate gland.

I wish I could help you much but seeing that you are based in the USA, you will do very well to join the prostate cancer community in your country. They will assist you more than what we in the UK can do for you: they will know and recommend fine doctors, surgeons and oncologists to you. I think there is one called UsTOO. Yes, there is as I just Googled it. The website is www.ustoo.org

Frank, you will be fine. Just face it and tackle it. We all took that approach and so should you.

Regards

Rafael

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

 

User
Posted 07 Jan 2019 at 00:45

Thanks will look that site up.  And now they have the mri Corazon I think it's called the stuff they put in you arm.  Any how my uraluist said in this report that dr may just look at it and say it's ok.  So I assume (You know what that is right ASSUMING makes a ASS out of U and Me) That maybe they found its not cancer just a tumor.

Edited by moderator 07 Jan 2019 at 01:00  | Reason: Not specified

User
Posted 08 Jan 2019 at 20:47

I saw my urologist at the Royal Surrey County Hospital in Guildford today. It turned out to be a very short meeting. Since my post-RP PSA had been constantly <0.1 over the past four 3-monthly visits, my visits have been re-arranged to twice a year to July and January 2020.

I spoke to him about the current investigation into the biopsy samples mix-up. He said he is very aware of it but could not comment as the investigation is being headed by my initial  urologist at St Peter's Hospital in Chertsey. I will have to wait until 30 January to finally learn of the outcome.

While I was at the hospital I was pleased to finally witness the new Urology building where PCa patients will be referred to. For the present outpatients continue to attend consultations in Castle Outpatients department.

Rafael

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

Edited by member 08 Jan 2019 at 22:16  | Reason: Not specified

User
Posted 08 Jan 2019 at 22:29

Rafael

Sorry you have to wait a bit longer to get an update on the 'mix-up'.  Glad your PSA is stable.

 

Ulsterman

User
Posted 16 Jan 2019 at 15:05

I received 2 letters today from the hospital with regard to the SIRI (Serious Incident Requiring Investigation) situation about the potential mix-up of my TRUS biopsies from December 2017.

They mentioned that the investigation takes 60 days before a draft report is shared with the Clinical Commissioning Group (CCG). It then states that the CCG can take 3-4 weeks to ratify the report once they had received it. Once the report had been ratified, it then will be shared with me.

It seems that my appointment with the urologist for 30 January may have to be put back and I have asked when the report will be expected as the letter did not mention when the investigation actually began.

Regards

Rafael

He who lives, loves and knows what it means to die  - Jiddu Krishnamurti 

User
Posted 16 Jan 2019 at 17:53

I got a confirmation that the investigation is due to end before the end of this month and they expect the CCG to ratify the report by the end of February. So it is another month's wait.

 

Regards

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti 

User
Posted 16 Jan 2019 at 17:55
What an awful situation for you - horrible.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Jan 2019 at 18:06

Yes. I went through the biopsy laboratory report all over again and I spotted a discrepancy after all that time.

There is a heading MACROSCOPY which clearly  stated that 19 cores were recorded. Then under the heading MICROSCOPY only 17 cores were recorded. Where have the other two cores disappeared to? I can just laugh at it - it is quite comical. I don't know how I missed that over a year ago.

Regards

Rafael

 

He who lives, loves and knows what it means to die - Jiddu Krishnamurti 

User
Posted 30 Jan 2019 at 18:09

I had a meeting with the two urologists at the hospital at 4pm today and the meeting ran for 40 minutes.

After initial courtesy introductions, it was explained to me that my DNA from my blood sample confirmed a 100% match with the samples involved in the biopsy mix-up. It was further confirmed that I received the wrong biopsy report which led to my decision to undergo radical prostatectomy. However, the full report is in the process of being handed to the CCG (Clinical Commissioning Group) and I should receive a copy within 4/6 weeks.

I reiterated that the mix-up had led me to choose what I now know is the wrong decision to go for an operation. Had I got the correct report, I would have opted for surveillance as it is becoming clear that the volume of cancer within my prostate gland was no more than 1-2%, whereas in the mixed up report I noted a good number of cores containing 60-70% cancer.

I decided to leave matters at that and await the copy of the report. Oh dear, but I am nevertheless furious and I am keeping my feelings under control.

Rafael

He who lives, loves and knows what it means to die - Jiddu Krishnamurti 

Edited by member 30 Jan 2019 at 18:11  | Reason: Not specified

User
Posted 30 Jan 2019 at 18:11
I am so sorry Rafael - dealing with the aftermath of RP is horrid in anyone's book but to find out that you needn't have gone through it is unimaginable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2019 at 18:57

Rafael - words fail me.  my heart goes out to you.

Ulsterman

User
Posted 30 Jan 2019 at 19:30
Sorry to hear this.
User
Posted 30 Jan 2019 at 19:30
Sorry to hear this.
 
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