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Confussed

User
Posted 06 Feb 2019 at 09:28

Good Morning All

I had my RP operation last year December 

Yesterday I attended to my first follow up appointment ever at the hospital where I had the operation. 

The Hospital was as busy as ever so seem to me the The medical member of the staff I seen  he was a bit in a hurry .he did not spend time with me even for 15 minutes. I don't know why maybe because of my medical report out comes of it?

 

He said the cancer all cleared off there is no problems anymore 

Original report was before my RP operation 

3+4=7 

He asked that if I'm having pains?

Incontinence?

Sexual life ? Etc.

After I told him that my sex life doesn't exists anymore he gave me tadafil but only 4 of them ! 20mlg each.

he suggested that I could get more through my GP 

Told him that After 2 months pro op even if I lift up 2 kilograms heavy shopping bag I get pains through my tummy +incontinence is under control there is no big issue about it 

We talked about pump which I have already got an appointment with them. 

What I don't understand is when I read other people comments &  expriences on here 

Seems they have been given all clear medical reports maybe written .most of you guys indicated that cancer is on such such states .cleared  or not

Gleeson state is such such etc and many technical details (which I don't understand)

I don't even know what does it mean 3+4=7!!!

Sorry for being ignorant but I have not given any written technical details. 

All I was told that was I must get check my PSA level through my GP 2 weeks prioritise to my next follow up appointment. That's all  is that normal ?

 

Thank you all in advance 

Darkrainbow 

 

User
Posted 06 Feb 2019 at 14:25
They should have given you a final pathology report and PSA result. Did they do that??
User
Posted 06 Feb 2019 at 17:21
Did you go and get a PSA test maybe last week so that they could give you the results today?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 18:46

Darkrainbow, 

You are entitled to have a copy of the full pathology report... Many consultants don't automatically issue one to you unless you specifically ask for it.. 
I had to ask for mine....
Ring the consultants secretary....  (s)he may be able to send a copy to you in the post..

Best Wishes
Luther

User
Posted 06 Feb 2019 at 19:13
Of course they are not keeping things from you - the NHS doesn't work like that. If anything, the criticism is that sometimes NHS staff are under too much pressure to demonstrate that they have given the patient all the information available.

On the other hand, we know that many urology clinics are overstretched with too many patients for the appointment slots available so many people feel that they have been rushed in / out.

The surgeon will write to your GP with your pathology results - perhaps he assumed that your GP would have discussed it with you - it is a vmbut of a cock up that noone told you to get your PSA test before the appointment. Great that he asked you about ED etc - sounds like he might have been completing the lifestyle impact assessment that all urologist are supposed to do with men post-op (but not all do).

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

User
Posted 06 Feb 2019 at 19:40
DR, you have been pretty free with advice to site newcomers based upon your limited experience yet you have not asked the basic questions of your medical advisors. Get your act together, man. Everyone in the NHS wants the best outcome for you but if you want to understand what is best for you, you must ask questions of those advisors. If you have picked up nothing else from your time on this forum, surely you have absorbed what you need to know about your own condition, based upon what others here have been reporting?

AC

User
Posted 06 Feb 2019 at 22:21
Evening DR,

At first glance there do appear to be variations in treatment options, after care options, support options, support equipment and post procedure medication depending on where you are and what you have had done to you. Looking at it if you are not getting extras, that might be deficient. On the other hand, if you are getting extras, that might be deemed to be excellent or exceptional care.

Either way, for whatever reason, it's clear you may feel disadvantaged.

One critical aspect of this discrepancy seems to be that if you do not ask you do not get.

Would it be of any use to you if, before you are going to have your next appointment, you mention here what type of appointment you are about to have, and then people here could offer up a list of questions and requests that you could consider putting forward?

Just a thought.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Feb 2019 at 18:31

Hello there D. R. 
Well...... I'm no expert either... but it looks like the PCa was well contained within the prostate and caught early!         Nothing found near the base or apex either...so not much digging around near your external sphincter which may or may not have helped you regain your continence so quickly..
I note no lymph nodes were sampled?...so the surgeon must have been pretty sure it was not necessary..
In terms of histology yours is about as good as it gets smile  

Keep calm and carry on wink
Cheers 
Luther

Edited by member 11 Feb 2019 at 18:32  | Reason: Spelling error

User
Posted 11 Feb 2019 at 19:11
That's a pretty encouraging report, DR. Shows that the cancer was caught in plenty of time and hadn't spread outside the prostate. You've every reason to be happy about it!

Chris

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User
Posted 06 Feb 2019 at 14:25
They should have given you a final pathology report and PSA result. Did they do that??
User
Posted 06 Feb 2019 at 17:15

No they didn't give me anything really  apart prescriptions for tadafil  and a paper something like   there are small tiny box s to tick them up 

Only the box has been ticked was for my follow up appointment that is all.

I'm really confussed. 

Thanks for your kind respond. 

User
Posted 06 Feb 2019 at 17:21
Did you go and get a PSA test maybe last week so that they could give you the results today?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Feb 2019 at 18:31

Hi Lynn

No last week I didn't go anywhere. Yesterday was my first follow up appointment. 

The surgeon or his member of staff he asked me questions  that's all and made a comment that Results are good cancer treated well I don't need to worry for anything but for my next follow up appointment 2 weeks before that I must get donr my PSA level by my GP or request through my GP than take result to my next follow up appointment. 

He did not give me any paper works that officially indicates out comes of the RP Operation. 

I'm confussed really .tomorrow I should write an E-mail to a nurse whom always respond me with great help. 

But saying that when I read other people comments here after their follow up appointment  I get confussed and wonder that have I got something that they hiding from me?

User
Posted 06 Feb 2019 at 18:46

Darkrainbow, 

You are entitled to have a copy of the full pathology report... Many consultants don't automatically issue one to you unless you specifically ask for it.. 
I had to ask for mine....
Ring the consultants secretary....  (s)he may be able to send a copy to you in the post..

Best Wishes
Luther

User
Posted 06 Feb 2019 at 19:06

Good Evening Luther 

 

Sure tomorrow I would do that .

Many Thanks for your kind concern 

Will update you. 

 

D.R 

User
Posted 06 Feb 2019 at 19:13
Of course they are not keeping things from you - the NHS doesn't work like that. If anything, the criticism is that sometimes NHS staff are under too much pressure to demonstrate that they have given the patient all the information available.

On the other hand, we know that many urology clinics are overstretched with too many patients for the appointment slots available so many people feel that they have been rushed in / out.

The surgeon will write to your GP with your pathology results - perhaps he assumed that your GP would have discussed it with you - it is a vmbut of a cock up that noone told you to get your PSA test before the appointment. Great that he asked you about ED etc - sounds like he might have been completing the lifestyle impact assessment that all urologist are supposed to do with men post-op (but not all do).

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

User
Posted 06 Feb 2019 at 19:25

Dear Lynn (Super woman)

 

I really didn't know About PSA level  check up should be done or necessary before the follow up appointment. I didn't know and nobody inform me about it with phone or letter or by phone. 

 

Surely  can discuss about your suggestion with my GP .also I can E-mail hospital about it as well..

 

Many Thanks 

X

User
Posted 06 Feb 2019 at 19:40
DR, you have been pretty free with advice to site newcomers based upon your limited experience yet you have not asked the basic questions of your medical advisors. Get your act together, man. Everyone in the NHS wants the best outcome for you but if you want to understand what is best for you, you must ask questions of those advisors. If you have picked up nothing else from your time on this forum, surely you have absorbed what you need to know about your own condition, based upon what others here have been reporting?

AC

User
Posted 06 Feb 2019 at 21:04

Good Evening AC

 

Thanks for your kind comments  but please do not compare me with Others on here..I'm next to Super woman Lynn,Cheshire Chris, Luther, Bollinger, Amazon 7,Francij and rest My knowledge are Zero really. 

My biopsy results are before my my RP operation were 3+4=7 honestly I really don't know what does it mean that!

Yes I might given some advises to some new patients on here but my advises were basic suggestions such as they shouldn't lift even 2 pints of milk bottle or shopping bags etc.my suggestions definitely weren't technical at all.

Definitely not like others!

 

Yes saying that I had few questions for the medical member of staff that I seen yesterday but.....the waiting room was full of with patients like me .there were not enough seats available for us. There were people there for pre operation  bloid tests .cathere removal etc  + people like me too waiting to hear out comes of Their operations. 

Some people sitting some people standing that was the situation yesterday .

The medical gentleman He didn't even spend time with me 15 minutes. I respected that it was a busy day time for him and other NHS staff after he checked up my tummy Stiches (where there were stiches)  he asked me few questions and I asked few too.I thought end of the appointment He was going to give me the actual report of my RP operation out comes but he didn't really. 

 

Hope this helps you.

D.R

User
Posted 06 Feb 2019 at 21:23

Other thing is ...

According to the comments on here NHS treatments are different  possibly because of where you live really. 

Such as 

Some men after their RP surgery operation when they discharges they given pain killers 

(I was asked to get from the community paracetamol and Iburphone)

Night catheter bag 

(I was asked to get one from the community but only given for one week supply )

 

Some men treated by their district nurse after the operations 

(I have never met with her and had met with my key nurse only once never heard of from her again Any way )

So I'm not complaining but Seems NHS  works differently depend of the location or their budget I guess .?

Edited by member 06 Feb 2019 at 22:03  | Reason: Not specified

User
Posted 06 Feb 2019 at 22:21
Evening DR,

At first glance there do appear to be variations in treatment options, after care options, support options, support equipment and post procedure medication depending on where you are and what you have had done to you. Looking at it if you are not getting extras, that might be deficient. On the other hand, if you are getting extras, that might be deemed to be excellent or exceptional care.

Either way, for whatever reason, it's clear you may feel disadvantaged.

One critical aspect of this discrepancy seems to be that if you do not ask you do not get.

Would it be of any use to you if, before you are going to have your next appointment, you mention here what type of appointment you are about to have, and then people here could offer up a list of questions and requests that you could consider putting forward?

Just a thought.

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 06 Feb 2019 at 23:25

Good Evening Dave 

 

I thank you so for your kind thoughts and explanation .

Surely that every NHS trust's hospital's have different type of budget. 

Those men who gets full attention and medical supplies are the lucky one 

But saying that I'm not complaining I'm still alive and surely there are people whom in my situation or worse. 

I'm genuinely short of understanding Technical knowledge of  All those medical words and meaning .English is not my first language so that makes it difficult to understand some technical subjects though .

Surely before the my next follow up appointment I would discuss with friend's iike you on here just to get some info as you suggested. 

Many thanks again. 

Good night Dave and your comments are  much appreciated .

D.R

 

 

 

User
Posted 11 Feb 2019 at 17:53

HI Luther and the Rest 

 

Eventually I managed to Grab my pathology Report, Thanks for your kind concern

 

 

MACROSCOPIC DESCRIPTION:
Pots labelled (on my name)
A. Prostate and seminal vesicles: A radical prostatectomy specimen weighing
36.5g. The specimen is inked right side blue, left side black. The specimen is
divided at 5mm intervals, apex, to base, A1- 6. The greatest dimension is 4.1 cm
at level 4. All processed.
B. Pre prostatic fat: Fragments of fatty tissue measuring 40mm in aggregate. All
processed in 2 cassettes.      (BA)


MICROSCOPIC DESCRIPTION:
A.          Prostatectomy

Tumour type: Acinar adenocarcinoma

A1: No carcinoma identified.
A2: No carcinoma identified.
A3: Gleason: 3+4 right side, gland confined. 2.16cm2
A4: Gleason: 3+4 right and left side, gland confined. 2.2cm2
A5: Gleason: 3+4 right and left side, gland confined. 1.5cm2
A6: No carcinoma identified.

Gland confined: Yes
Extraprostatic extension: No
Seminal vesicles involvement: No
LVI: No
Apical margin involvement: No
Basal margin involvement: No
Circumferential margin involvement: No  

B.The specimen labeled as pre prostatic fat has been examined in its
entirety and is composed of fibroadipose tissue with no evidence of malignancy.
No lymph nodes are present.


HISTOLOGICAL DIAGNOSIS:
A.          Prostatectomy specimen:

Tumour: Acinar adenocarcinoma
Gleason score: 3+4
Grade group: 2
Tumour volume: 2.93ml
Stage: pT2c pNx
Margin status: clear

B.  Pre prostatic fat: No evidence of malignancy.

 

I am not a technically smart guy to understand all these sensitive words but I was told the results are Good and get done PSA test 2 weeks before my next follow up appointment

 

incontinency is zero 

use of pads day time zero

night time pads I use them encase 

Sex life is ZERO! (only given tadafil for now 4 of them 20mg)

 

Pains on my tummy are disappearing  but last week suddenly from my left hand side of body around of my waist started beating fast  first time ever in my life . I was panicked did not know what to do it did happened couple of times fallowing days I wasn't sure if it was from kidney  or liver or something else. yes sound like Imbecilic but that's the reality

 

Thank for reading all

 

D.R

 

 

User
Posted 11 Feb 2019 at 18:31

Hello there D. R. 
Well...... I'm no expert either... but it looks like the PCa was well contained within the prostate and caught early!         Nothing found near the base or apex either...so not much digging around near your external sphincter which may or may not have helped you regain your continence so quickly..
I note no lymph nodes were sampled?...so the surgeon must have been pretty sure it was not necessary..
In terms of histology yours is about as good as it gets smile  

Keep calm and carry on wink
Cheers 
Luther

Edited by member 11 Feb 2019 at 18:32  | Reason: Spelling error

User
Posted 11 Feb 2019 at 19:11
That's a pretty encouraging report, DR. Shows that the cancer was caught in plenty of time and hadn't spread outside the prostate. You've every reason to be happy about it!

Chris

User
Posted 11 Feb 2019 at 21:43

Good Evening Luther 

 

Thanks for your kind concern and thoughtful words .

I just done a Google search about lymph (I didn't know what does it mean:)

I'm not sure why they didn't mention of it but as you mentioned maybe they didn't need to. 

 

Thanks for your kind support. 

D.R.

Ok.surely you have great knowledge of that horrible disease!

User
Posted 11 Feb 2019 at 21:56

Good Evening Chris (superman)

 

Thank you for your positive and  kind Message. 

Trust me  I do remember your advices those you given me in the past.

I follow your threads you will be OK soon.you live on your own you been coping your self without anybody's help. 

Thanks again 

D.R

 
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