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lack of information very stressed

User
Posted 10 Jun 2014 at 20:36

hi

my husband paul had an open prostatectomy on the 9th may at cheltenham hospital they don't do it at our local hospital hereford   

he was meant to have keyhole but due to his pelvic area being too small they had to do open 

that was our first bit of non information didn't get told why it was open until change of nursing staff 4 days later

paul left hospital on 14th may with letter stating that his catheter would be taken out 2 weeks later then 6 weeks after we would see consultant

well nearly 2 weeks had gone no letter for appointment so I phoned up consultants secretary

she had had notes from cheltenham hospital she said and was getting round to making appointment bear in mind it was 11 days after discharge so eventually i got her to make appointment  for twoc

we turn up on the morning of appointment and sat waiting and waiting and waiting eventually after an hour we get told sorry for the delay we are waiting for written confirmation from cheltenham that we can do twoc in hereford (different nhs trusts) something which was meant to be done when appointment was made after another 45 mins they got fax and went ahead with twoc

everything went well with that 2 weeks on paul is dry at night only 1 pad in day bit of stress incontinence

we saw physio yesterday she was really pleased with progress then says have you got appointment for flow test

first we heard of this so she gets hold of consultants secretary books it for 2nd july and we then get told wont see consultant till 8th july

9 weeks after op

this stressed both of us out as you all know on here the thing you want to know most after prostatectomy is did they get it all or has it spread

then reading on here i realized that at no time we have ever been told what my husbands   gleason score was or what grade tumour

i spent most of yesterday afternoon and this morning trying to find out why he has to have a flow test when things are going well re weeing

why so long before we get results of biopsy  

in the end i spoke to one of the urology nurses who gave me some of the info we wanted 

Main one THEY GOT IT ALL :D

told her how stressed we were and all the complaints we had

she promised to speak to consultant 

was amazed when this afternoon consultant rang us himself he gave us info and has promised to see us next tuesday so we can discuss things in person

i found out his gleason score  was 7 and it was t2 after op

i would like you to help us with a list of questions for him

so far we have

why the flow test?

what were scores pre op?

after that my mind goes blank been such a stressful day i cant think (hopefully brain will get into gear soon)

what things did you ask the consultant ?

Please help

marie

User
Posted 11 Jun 2014 at 11:52

Marie, I am answering because I do not want you to despair that you have not had a reply yet. I am not at all experienced with Prostatectomy questions as surgery was never an option for my husband.

However from what you have said so far I am guessing that the medics are being a bit laid back because things are good, very good. Your Husband has a gleason score of 7 and a grading of T2. You only get a gleason score after a biopsy it is sometimes re assessed during surgery with further biopsies but not if the first results were very comprehensive.

One question you might like to ask is how that score of 7 is made up if it is 3+4 that is a bit better than 4+3 but in any event a score of 7 with no spread is very much in the curable camp. If the op went well and you have been told that they are confident all the cancer has been removed that is also good. Second question might be to ask if they are considering any Radiotherapy on top of the op. They should explain their answer to that question very explicitly. the T2 staging suggests that the cancer had not advanced beyond the core of the prostate so removing it should have cleared it.

The flow test is almost a routine thing, it is to show that the bladder is holding urine and that the sphincter muscle is working properly and sending the right messages to pass urine out through the urethra as the bladder fills. The flow rate tells them that there is no blockage or unnecessary swelling of the surgery site.

Other questions should be around how long it might take for your Husband to regain full continence and erectile function (if that is important to you) and any other longer term issues that could arise post surgery.

As I say this is not a comprehensive reply so I hope somebody with personal experience replies to you really soon, I just want you to worry a little less and gather your thoughts for the consultation.

xxx

Mo

User
Posted 11 Jun 2014 at 13:53

Hi Marie and Paul, I had a biopsy in Hereford after my PSA rose to 5.1. My diagnosis was gleason 4+3 T2C. I researched possible treatments beforehand and so knew most of options available on the NHS. I then pressed to see the local consultant urgently. Who I saw along with my wife. The treatment options he gave me were a TURP with 37 radiotherapy treatments or open surgery in Cheltenham to remove the prostate. I asked him about nerve sparing he said he couldn't guarantee this. I then mulled it over for 24 hours and got my GP to refer me to the team at Southmead hospital in Bristol. They agreed to remove my prostate by robotic surgery and to save the nerves which they did. 

After the op my pathology report the cancer was reassessed at gleason 3+3. I had my op last June at a young 59. I f you want to know more about what happened to me in the last year let me know.

 

Take Care

 

Bert aka Chris

User
Posted 11 Jun 2014 at 20:24
Hi as already advised what the Gleason 7 is made up of ie 3+4 or 4+3

Was there any nerve sparing, if so what?

Can you have a copy of the full histology report?

Were all margins positive?

What is the risk? Low, intermediate or high?

Did they take any nodes? Where they clear?

Was there any tertiary grade?

What's the PSA?

Where abouts in the prostate was the tumour?

Will he refer you to ED clinic/nurse?

Hope that helps

Bri

Edited by member 11 Jun 2014 at 20:27  | Reason: Not specified

User
Posted 13 Jun 2014 at 18:05

deleted

Edited by member 13 Jun 2014 at 21:43  | Reason: Not specified

User
Posted 18 Jun 2014 at 20:47
Hi Marie - Medium of course! The Gleason score tells you how aggressive the tumour is and 3+4 is medium-rare as far as prostate goes. T2c just means tumour was found in both lobes of the prostate. A low PSA combined with the above places Paul on the low side of medium risk in my opinion. If the surgeon says they got it all out, then hey, that's great. Crack a bottle of your favourite poison and celebrate. The first year's PSA tests are the worst because they're filled with "what if's" and other fearful thoughts and that's something you learn to live with. The best advice I can give you is to be there for Paul, and hug him whenever he expresses his fears or just looks worried. None of us want a homily on survival statistics from our partners but a hug goes a long way to reminding us that the wedding vows we took still mean something.

If it helps, I was T2c Gleason 7 (3+4) at post-op histology 2 years ago. Today I'm PSA 0.01 (in other words undetectable - why the hell don't they just call it zero?) and looking forward to the rest of my summer. Recovery will come, and survivorship can be difficult from time to time, especially in the run-up to PSA tests, but it's better than the alternative. Good luck!

Alan

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User
Posted 11 Jun 2014 at 11:52

Marie, I am answering because I do not want you to despair that you have not had a reply yet. I am not at all experienced with Prostatectomy questions as surgery was never an option for my husband.

However from what you have said so far I am guessing that the medics are being a bit laid back because things are good, very good. Your Husband has a gleason score of 7 and a grading of T2. You only get a gleason score after a biopsy it is sometimes re assessed during surgery with further biopsies but not if the first results were very comprehensive.

One question you might like to ask is how that score of 7 is made up if it is 3+4 that is a bit better than 4+3 but in any event a score of 7 with no spread is very much in the curable camp. If the op went well and you have been told that they are confident all the cancer has been removed that is also good. Second question might be to ask if they are considering any Radiotherapy on top of the op. They should explain their answer to that question very explicitly. the T2 staging suggests that the cancer had not advanced beyond the core of the prostate so removing it should have cleared it.

The flow test is almost a routine thing, it is to show that the bladder is holding urine and that the sphincter muscle is working properly and sending the right messages to pass urine out through the urethra as the bladder fills. The flow rate tells them that there is no blockage or unnecessary swelling of the surgery site.

Other questions should be around how long it might take for your Husband to regain full continence and erectile function (if that is important to you) and any other longer term issues that could arise post surgery.

As I say this is not a comprehensive reply so I hope somebody with personal experience replies to you really soon, I just want you to worry a little less and gather your thoughts for the consultation.

xxx

Mo

User
Posted 11 Jun 2014 at 13:53

Hi Marie and Paul, I had a biopsy in Hereford after my PSA rose to 5.1. My diagnosis was gleason 4+3 T2C. I researched possible treatments beforehand and so knew most of options available on the NHS. I then pressed to see the local consultant urgently. Who I saw along with my wife. The treatment options he gave me were a TURP with 37 radiotherapy treatments or open surgery in Cheltenham to remove the prostate. I asked him about nerve sparing he said he couldn't guarantee this. I then mulled it over for 24 hours and got my GP to refer me to the team at Southmead hospital in Bristol. They agreed to remove my prostate by robotic surgery and to save the nerves which they did. 

After the op my pathology report the cancer was reassessed at gleason 3+3. I had my op last June at a young 59. I f you want to know more about what happened to me in the last year let me know.

 

Take Care

 

Bert aka Chris

User
Posted 11 Jun 2014 at 20:24
Hi as already advised what the Gleason 7 is made up of ie 3+4 or 4+3

Was there any nerve sparing, if so what?

Can you have a copy of the full histology report?

Were all margins positive?

What is the risk? Low, intermediate or high?

Did they take any nodes? Where they clear?

Was there any tertiary grade?

What's the PSA?

Where abouts in the prostate was the tumour?

Will he refer you to ED clinic/nurse?

Hope that helps

Bri

Edited by member 11 Jun 2014 at 20:27  | Reason: Not specified

User
Posted 11 Jun 2014 at 21:52
Think about the future,too

If nerves were spared, ask for cialis and a pump to help get your hubby active. Cialis should be daily to be most effective. Don't worry about viagra at this stage.

If there are continence issues, ask to be referred to the clinic. Find out if free pads are available.

Make sure you get the next PSA booked for about 3 months time.

All along, I was handed lots of Prostate Cancer UK literature. If none was supplied to you, ask why not.

On leaving hospital, I was given a bag of goodies, supplied by PCUK, although I can't see that on the website now. I don't know if that is still available.

Hope you find all the answers you want.

Paul

Stay Calm And Carry On.
User
Posted 11 Jun 2014 at 21:55
Hi,

Between Mo and Bri you have got most of the questions that you need to ask. The main point is however that all things look to be very good indeed, and this should help lift your worries. You might be being a little unfair on your hospital as well. Waiting for results is the worse time but they did say 2 weeks for catheter removal and then a further 6 weeks to see oncologist....8 weeks, so 9 weeks isn't too far out.

Whilst you may not be too happy with the past look forward to what appears to be an excellent result all round....even to the continence issue which in itself is very good.

Best of luck,

Life is for living

Barry (alias Barrington )

User
Posted 12 Jun 2014 at 01:51

thanks for all who have replied as all we wanted was info from the hospital

not so stressed now since we found out  they got it all

continence wise things are going well paul went all morning without a pad  and only needed 1 in the afternoon

we were given a PCUK pack which helped a bit about general info

the 6 weeks was after the op not the catheter removal  

i had thought it was too early to be asking about ED problems but now know earlier the better so will be asking about that

thanks again marie

Edited by member 12 Jun 2014 at 01:52  | Reason: Not specified

User
Posted 13 Jun 2014 at 11:12
its no wonder we are getting confused

letter today saying appointment for flow test cancelled at request of consultant

it was him who was supposed to want it in first place

hope he has left a long space for our appointment on tuesday because we are determined to get answers and won't leave till we have them

User
Posted 13 Jun 2014 at 14:54

Hi Marie.

I tried to send you a private reply as I am local to you but the site wouldn't allow it. Suffice to say I saw the same 2 consultants as Paul plus another who did the biopsy and a registrar who did the DRE.

Bert 

User
Posted 13 Jun 2014 at 18:05

deleted

Edited by member 13 Jun 2014 at 21:43  | Reason: Not specified

User
Posted 13 Jun 2014 at 20:07

Hi Marie,

I just wanted to say that it is not a good idea to put your email address for everyone to see. The best way to send a private email is through the forums private contact. Perhaps you could try sending an email to Bert and he could then reply to that. Although we are descent bunch we have in the past had some people (trolls ) on here.

I hope you don't mind me saying this.

BFN

Julie

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Jun 2014 at 21:04
Yes I must agree with Julie, in the 5 or so years I have been on this site I have been viciously and I do mean viciously attacked on three occasions by despicable trolls and I am not alone.

Best delete your email address or get admin to do it for you.

Hope all goes well with your next meeting and you get the answers you are looking for.

Life is for living

Barry (alias Barrington )

User
Posted 13 Jun 2014 at 21:46
thanks all have deleted it did inbox bert but he could not reply to my inbox

hence i put email on he has been in touch so have deleted it

im so touch by your concerns

meeting is on tuesday and i will let you all know how we get on

just wish i had read this forums sooner

User
Posted 18 Jun 2014 at 16:16
UPDATE

saw consultant yesterday confirmed paul is in remission

gleason was 3+4

no psa done they dont here till 3 months apparently

it was t2c on both sides

one question for all

pauls psa puts him low risk

gleason med risk

t2c high risk

so which do you think he is?

User
Posted 18 Jun 2014 at 20:47
Hi Marie - Medium of course! The Gleason score tells you how aggressive the tumour is and 3+4 is medium-rare as far as prostate goes. T2c just means tumour was found in both lobes of the prostate. A low PSA combined with the above places Paul on the low side of medium risk in my opinion. If the surgeon says they got it all out, then hey, that's great. Crack a bottle of your favourite poison and celebrate. The first year's PSA tests are the worst because they're filled with "what if's" and other fearful thoughts and that's something you learn to live with. The best advice I can give you is to be there for Paul, and hug him whenever he expresses his fears or just looks worried. None of us want a homily on survival statistics from our partners but a hug goes a long way to reminding us that the wedding vows we took still mean something.

If it helps, I was T2c Gleason 7 (3+4) at post-op histology 2 years ago. Today I'm PSA 0.01 (in other words undetectable - why the hell don't they just call it zero?) and looking forward to the rest of my summer. Recovery will come, and survivorship can be difficult from time to time, especially in the run-up to PSA tests, but it's better than the alternative. Good luck!

Alan

User
Posted 18 Jun 2014 at 21:36
Hi

If you look at the NICE risk stratification it explains how the risk is determined.

Low risk is:

PSA below 10 and Gleason 6 or below and T1- T2

Intermediate risk is :

PSA 10-20 or Gleason 7 or T2 b

High risk is:

PSA above 20 or Gleason 8-10 or T staging equal or above T2c

So based on the results his Pca is classed as

high risk due to T2c. I think it is helpful to be aware of the facts if that is what you were asking for, which you were.

But good news if he had clear margins.

Bri

 
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