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Advice and guidance help

User
Posted 16 Jan 2019 at 02:08

I have been diagnosed last week and I am floundering a little.  I had a bone scan at glenfied hospital today, my gleeson grade is 3+ 5 = 8. I am interested in anyone  that has had surgery at Leicester General.


Has any one any advice on treatment choice, ie surgery or radiotherapy ?


Also,  I was told at my cosultation post biopsy that the cancer was contained to the prostate, afterwhich, they then said I needed a bone scan. Why is that, is it normal procedure or are there real concerns they are concealing?  Any advice on how you came to your decision on choice of treatment would be gratefully appreciated. 


regards alan


 

Edited by member 16 Jan 2019 at 08:38  | Reason: Not specified

User
Posted 16 Jan 2019 at 15:21

Hi Alan


my thought would be the Gleason 5 found, this would indicate an aggressive cancer and so a bone scan would be entirely sensible. It does not mean that they suspect spread but that they are hoping to rule it out. 


I’d be happy to have any and all diagnostic tools to make sure you get all the right information.


good luck


Devonmaid

User
Posted 16 Jan 2019 at 15:33
Once you have all of the results, i hope that you will also be given the opportunity to see an oncologist to discuss radiotherapy. Surgeons will recommend surgery because that is what they do for a living; if yours has said that it will be non nerve-sparing then erectile dysfunction will be a certainty (although some men are able to get erections using injections) and large scale lymph node removal (as opposed to just a few nodes being removed for sampling) can cause lymphodema.

Radiotherapy might be just as successful but without so many short term / long term side effects although the hormones that you have with the radiotherapy also have side effects.

If they have said that nerve-sparing is not appropriate, they must think that the cancer, while contained, is very close to the edge.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 16:24

Alan, I agree with Lyn - we will first need to see your full results to make the most sensible decision. Mine was contained and I opted for the robotic surgery. It went well and I'm making a good recovery, but I think it's very important for you to become knowledgeable on all treatment options you have and to choose that would best suit your lifestyle. 

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User
Posted 16 Jan 2019 at 08:15

It is against the forum rules to name doctors so either you need to edit or if you don't know how to do that the moderators will do it for you.

There are NHS tables of surgeon success rates that you can check up on but generally speaking it is most important that you feel a rapport and trust in the surgeon.

Some hospitals give everyone a bone scan, others do it only if they have evidence to suggest it is needed. Medical people don't keep things from patients these days. They are doing a bone scan just to make doubly sure that you have a correct diagnosis.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 10:26
Alan

Welcome to the forum. What was your PSA score on DX?
User
Posted 16 Jan 2019 at 15:12
My psa was 6 , my biopsy was 8 3+5 , I asked if monitoring was an option and categorically told no , if treatment is possible I won't know until after my bone scan results , what I was told that is really scaring me is , if treatment is decided and I go for removal lymphs and nerves have to go , I'm trying to come to terms with what the long term prognosis will be and quality after
User
Posted 16 Jan 2019 at 15:21

Hi Alan


my thought would be the Gleason 5 found, this would indicate an aggressive cancer and so a bone scan would be entirely sensible. It does not mean that they suspect spread but that they are hoping to rule it out. 


I’d be happy to have any and all diagnostic tools to make sure you get all the right information.


good luck


Devonmaid

User
Posted 16 Jan 2019 at 15:33
Once you have all of the results, i hope that you will also be given the opportunity to see an oncologist to discuss radiotherapy. Surgeons will recommend surgery because that is what they do for a living; if yours has said that it will be non nerve-sparing then erectile dysfunction will be a certainty (although some men are able to get erections using injections) and large scale lymph node removal (as opposed to just a few nodes being removed for sampling) can cause lymphodema.

Radiotherapy might be just as successful but without so many short term / long term side effects although the hormones that you have with the radiotherapy also have side effects.

If they have said that nerve-sparing is not appropriate, they must think that the cancer, while contained, is very close to the edge.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 16:24

Alan, I agree with Lyn - we will first need to see your full results to make the most sensible decision. Mine was contained and I opted for the robotic surgery. It went well and I'm making a good recovery, but I think it's very important for you to become knowledgeable on all treatment options you have and to choose that would best suit your lifestyle. 

User
Posted 16 Jan 2019 at 16:59
Alan, all good advice above. One further thought: you can choose where to have your treatment. I now live in Leicestershire but regard the local treatment record for cancer as pretty dire so I have continued with my treatment at Coventry. You might be wise to satisfy yourself on the record of the specialists who would be charged with your care.

AC
User
Posted 16 Jan 2019 at 17:28

Im 3+5=8 gleson count

User
Posted 16 Jan 2019 at 17:54
Yes, but your full results (once all tests are complete) will look something like this:

G8 (3+5) T3 N0 M0 or G8 (3+5) T2c N1 MX

The Gleason shows how distorted the majority of the cancer cells are.

The T shows the staging - whether it is well contained or is near the edge or has broken out of the covering over the prostaTE

N shows whether there is lymph node involvement

M indicates whether there is spread to other places like bone, lung, etc.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jan 2019 at 18:07

Originally Posted by: Online Community Member
Alan, all good advice above. One further thought: you can choose where to have your treatment. I now live in Leicestershire but regard the local treatment record for cancer as pretty dire so I have continued with my treatment at Coventry. 

AC


My husband had his prostatectomy done at Leicester General and we have found the service anything but dire. Every case is different though.

Edited by member 16 Jan 2019 at 18:09  | Reason: Not specified

User
Posted 16 Jan 2019 at 20:44

Thanks at the mo i know 3+5= 8 and T2 thats what the nurse wrot in the booklet , with two possib treatment options, im back next tuesday at the leicester general for my consultation and bone scan results , and the way forward .


i have been looking for my consultant results on the nhs page but hes one with no data , if anyone has a reliable source to analyze the necessary data id appreciate it 


thankyou


 

User
Posted 16 Jan 2019 at 20:45

what was your diagnosis and prognosis

Edited by member 16 Jan 2019 at 21:11  | Reason: Not specified

User
Posted 16 Jan 2019 at 21:07

I'll  pm you if I can but we can't give consultant's  names on here.

User
Posted 16 Jan 2019 at 21:10

Thanks


 

Edited by member 16 Jan 2019 at 21:56  | Reason: Not specified

User
Posted 16 Jan 2019 at 21:38

Hi Alan I've pm'd you but would advise you remove your Email address as anyone can look at that and you might get trolls etc bothering you.


 


Regards


Ann

User
Posted 16 Jan 2019 at 22:06

Thankyou!! i yried to pm you but as a new menber i cannot 


regards alan 

User
Posted 17 Jan 2019 at 07:06

Feel free Alan to ask any questions  and I can answer here as will everyone who can help or give you their opinions.


 


Regards


Ann

 
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