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How soon to have surgery

User
Posted 09 Jul 2018 at 05:17

Hi everyone, I was diagnosed last week.  Gleason score 7.  PSA 5.65 in April (although it went down to 4.6 more recently).  The doctor says my cancer is all in the left side of the gland.  Had bone scan and CT of the upper body last week - no metastasis or spread.

I am opting for radical prostatectomy with the option of sparing the nerves on the right side.

At first I was expecting to be rushed into hospital right away, but the doctor says I could (if I wanted to) wait up to 6 months.  I don't fancy that - sounds risky - but will go in for surgery in August.  I work at a high school, so the summer holiday makes it possible without any serious disruption to my schedule.

It all seems very casual somehow.  I can go for a holiday next week and come back in August ready for a life-changing operation.  I guess my question, or the conversation I want to have, is about "Is this usual?"

I live in Tokyo, by the way.  The hospital has an excellent reputation - I went there 8 yrs ago for appendectomy and my wife 10 yrs ago for hysterectomy.  Both of us were fine afterwards.  A close friend has also had RP done there and made a good recovery.

I should also add that I am feeling fine - if that means anything these days :-) !

 

User
Posted 09 Jul 2018 at 06:54

Hello Alien Reg and welcome to the site

Could I just ask how the Gleason was made up ie 3+4=7 or 4+3. IT does make a little bit of difference.

It seems that you have made up your mind to have the RP. Were any other options offered to you, including Active Surveillance?

With no spread, a relatively low Gleason and PSA I would have thought that AS would have been suggested.

As with all treatments for Prostate cancer, there are possible side effects, some of which could be quite drastic.
It's all "coulds" and "possibles" because results can vary between men, even with the exactly the same treatment. Some will sail through it, some will have life changing side effects.

It is best therefore to exam all treatment possibilities before opting for a drastic one.

It may be that you would prefer to have the cancer completely removed because of the fear of living with a cancer inside you, in which case you'll not be interested in exploring other options.

You consultant is quite right saying you can wait up to six months. Active surveillance for instance, can go on for years, where you are checked out on a regular basis in case anything changes, but you get to live your life with no invasive treatment.

Just be sure that you are going down the correct path for you.

I am sure that other people will come along and give you their views too so hang in there until they do

Best Wishes whatever you decide

 

***********************************88

Edited by member 09 Jul 2018 at 06:55  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 09 Jul 2018 at 10:10

I had Gleason 4+3=7, PSA 16.2, with no symptoms and after extensive (internet) research I thought I could carry on and just have PSA tests and active surveillance, as 7 is only just over 3+3=6, where A.S. is often appropriate.

However, my first consultant said: “I would not offer active surveillance to a patient with those results”.

My second opinion, a Professor said: “This may kill you if you leave it, and I can cure you”, which concentrated my mind somewhat!

So here I am, minus my prostate and Tommy the Tumour, “cured”...........................and on 3-monthly PSA tests to check on the efficacy of the “cure”.

PSA now undetectable.

Good luck with your operation and recovery.

Cheers, John

Edited by member 18 Jul 2018 at 06:35  | Reason: Not specified

User
Posted 09 Jul 2018 at 14:11
Prostatectomy is life changing but get the surgery right and can have a minimal impact - especially if you have an understanding partner.

If you have decided to go down the RP route I would argue that it should be sooner rather than later.

User
Posted 10 Jul 2018 at 10:51
Hi I had the same Gleason score as you, with a PSA of 4 my AS lasted only a couple of months before the decision was made to operate, my understanding is that its not a simple choice to as which treatment is best, your age and fitness should be taken into account.

I was dry within a few weeks but unfortunately my PSA has started to rise again so I have just finished a course of Radiotherapy. So just be aware that doctors are not infallible.

My ED is on going but there are many treatments available for this. my advice would be to start the pelvic floor exercises before surgery but be aware that like any muscle you can tire it out.

In retrospect I would make the same choices again. Regards Mel

User
Posted 10 Jul 2018 at 11:33
When John was diagnosed (G7 (3+4) the surgeon said "go away, have a holiday and do lots of what couples do" ... with nerve sparing only on one side you are less likely to regain full erections any time soon so it little bit of normality and then the op during school holidays seems to be very sage advice.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jul 2018 at 18:54
Hi,I had almost identical figures as you: Gleason 3+4 and PSA 4.6 with no symptoms at all and as bemused as you are. Both the surgeon and an oncologist recommended surgery as the cancer was pushing up against the prostate wall. It was at the beginning of the summer of 2016, and they told me to go away for a few weeks and then I had the surgery end August. He managed to save half the nerves on one side, and all on the other. Incontinence for a few months, and still some ED, but back to about 70% of where I was and improving steadily. After this September I'm on annual PSA checks; all the results so far show a PSA of 0.00 thankfully. What I would recommend is if you have a few weeks to wait is to get as fit as you can. My medical team told me to do 45 minutes of aerobic exercise a day, drink 3 litres of water, no white carbs or alcohol. Pretty miserable stuff for the summer, but I recovered really quickly, never took a painkiller after leaving hospital(only in for 2 days), and I'm convinced this helped.

Good luck

David

User
Posted 15 Jul 2018 at 20:10

I know what you mean about it feeling unreal, I just had radiotherapy and I had no symptoms at all. I am surprised you have such a long hospital stay, I was in overnight. I hope you won't be needing those pads for too long. Start doing the pelvic floor exercises before your surgery. Good luck Mel

User
Posted 15 Jul 2018 at 20:28

Sounds a good idea to have it done during the holiday.  Within 4 weeks I was practically back to normal although I wore a pad for 4 months and still have significant ED after 18 months.

You say you're booked in the day before the op and are staying in hospital up to 10 days.  You must be having an 'open' operation and not keyhole.  Keyhole gets you out in 2 days.  Although open surgery could be better for not damaging nerves and the like healing takes longer.

Best wishes 

Peter

User
Posted 16 Jul 2018 at 05:00
Hi you only have to keep your muscles tight for a few seconds, https://www.mayoclinic.org/healthy-lifestyle/mens-health/in-depth/kegel-exercises-for-men/art-20045074 be careful not to overdo it. Try stopping your flow just once a week or so to make sure your doing it right. As long as your not overweight your diet should be fine.
User
Posted 16 Jul 2018 at 11:22

I wonder how much good these fad diets and pelvic floor/ kegel exercises do for recovery.

I did nothing different before or after my prostatectomy and was virtually continent from day 10 post-op when the catheter was removed, and apart from a few indiscreet ‘incidents’ have been completely continent since week five. I bought and used just one pack of 14 Tena light pads.

I was well enough to have left hospital the day after my surgery, but the op was late in the day and I had a long journey home, so I elected to stay one more night.

If you click here you can read all the gory details if you wish.

I followed doctor’s orders and drank plenty of fluids (beer) before and after my procedure.

There is a free pelvic floor phone app called ‘Kegel Trainer’ if you can be bothered to do the exercises.

Best wishes for the future.

Cheers, John

Edited by member 16 Jul 2018 at 14:18  | Reason: Not specified

User
Posted 16 Jul 2018 at 12:04
There is a difference between fad diets and prostate-friendly diets. Generally, PCa incidence is much lower in the Far East and research is fairly conclusive that this is linked to diet. There is no reliable research to support the idea that diet makes any difference at all once your prostate is cancerous, except that cutting out food containing growth hormones (dairy, muscle meats) and increasing intake of oily fish, processed tomatoes and garlic / allium can slow advanced disease down and help the HT to work better.

All adults should do what they can to maintain a healthy pelvic floor - regardless of whether they are having surgery, it reduces the risk of age-related incontinence. In relation to RP, there are 2 types of incontinence and Kegels can help with one but not the other. John’s surgeon was of the view that they make no difference at all to the leaking in the first few weeks post-op but would do no harm either.

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

User
Posted 18 Jan 2019 at 14:27

Hi there!

Thanks for getting in touch.  It's been a while since I looked at this forum.  I hope your recovery continues well.  I guess you're still in the "what hit me?" stage.  What a way to spend Christmas!

Yes, I had my prostate removed in August and have been fine since.  I did not have the incontinence , apart from (like you) a few dribbles when I cough or break wind.  Even that went away after a month or two.  What is unusual is I have to push a bit when I want to pee, but it's not uncomfortable or painful.  I've got used to it.  The doctor said I would be peeing normally after 3 months but it's close on six now and I don't think it's going to change.

I did lose a bit of weight and I am trying to build up my muscles with some gentle weight lifting at home.  I don't know if this is related to the surgery or just because I'm almost 60.

Sex, no erection as yet.  That's mainly due to lack of opportunity, I'm afraid.  Those dry flaccid orgasms are bizarre aren't they.

I was being careful with diet but lapsed a bit over Christmas and New Year.  I have no idea if that affects me at all - my doctor told me that diet and exercise would have no effect at all.  If there is any cancer left inside me, it's there, whether I eat cheese or not. Apart from a stomach ache, no different from what I would have had anyway, I feel okay, but I have got back to being careful.

I had my first post-op check-up one month after surgery and my PSA was down to 0.083.  The doctor said there is a 20-30% chance it will rise.  If it reaches 0.2 then he says we need to talk.  I go for my next PSA check in early February.  Fingers crossed.

My prostate size was normal.  The cancer was "organ confined".  My CTI and bone scans prior to surgery showed no spread.  My Gleason score was 7 (3+4).  It didn't go up after surgery.

I feel fine.  Sometimes I have to remind myself that it happened - although every time I go to the loo (which is not as often as before) of course I remember.

For now I'm working and leading a normal life.

I did find out from my mum something I didn't know before - Dad had been told he might have a prostate problem, but then Alzheimer's kicked in and they never followed it up; but it looks like it is a family thing.

Take care of yourself, anyway, 4thought!  Hope this message helps.  All the best.

Show Most Thanked Posts
User
Posted 09 Jul 2018 at 06:54

Hello Alien Reg and welcome to the site

Could I just ask how the Gleason was made up ie 3+4=7 or 4+3. IT does make a little bit of difference.

It seems that you have made up your mind to have the RP. Were any other options offered to you, including Active Surveillance?

With no spread, a relatively low Gleason and PSA I would have thought that AS would have been suggested.

As with all treatments for Prostate cancer, there are possible side effects, some of which could be quite drastic.
It's all "coulds" and "possibles" because results can vary between men, even with the exactly the same treatment. Some will sail through it, some will have life changing side effects.

It is best therefore to exam all treatment possibilities before opting for a drastic one.

It may be that you would prefer to have the cancer completely removed because of the fear of living with a cancer inside you, in which case you'll not be interested in exploring other options.

You consultant is quite right saying you can wait up to six months. Active surveillance for instance, can go on for years, where you are checked out on a regular basis in case anything changes, but you get to live your life with no invasive treatment.

Just be sure that you are going down the correct path for you.

I am sure that other people will come along and give you their views too so hang in there until they do

Best Wishes whatever you decide

 

***********************************88

Edited by member 09 Jul 2018 at 06:55  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 09 Jul 2018 at 10:10

I had Gleason 4+3=7, PSA 16.2, with no symptoms and after extensive (internet) research I thought I could carry on and just have PSA tests and active surveillance, as 7 is only just over 3+3=6, where A.S. is often appropriate.

However, my first consultant said: “I would not offer active surveillance to a patient with those results”.

My second opinion, a Professor said: “This may kill you if you leave it, and I can cure you”, which concentrated my mind somewhat!

So here I am, minus my prostate and Tommy the Tumour, “cured”...........................and on 3-monthly PSA tests to check on the efficacy of the “cure”.

PSA now undetectable.

Good luck with your operation and recovery.

Cheers, John

Edited by member 18 Jul 2018 at 06:35  | Reason: Not specified

User
Posted 09 Jul 2018 at 14:11
Prostatectomy is life changing but get the surgery right and can have a minimal impact - especially if you have an understanding partner.

If you have decided to go down the RP route I would argue that it should be sooner rather than later.

User
Posted 09 Jul 2018 at 15:02

Thanks to everyone so far for your responses.

I am going to consult with my doctor on Thursday, so will ask again about 4+3 v. 3+4.  However, he sees Gleason 7 as "intermediate" rather than "early" or "low".  He does not recommend AS at this stage.  Nor does he recommend "brachy" (the seeds - forgotten the full word).  If I was Gleason 6 he says he would, but not 7.  

The options presented to me were RP or radiotherapy.  I prefer the former because it means I can be rid of the cancer once and for all.  The nerve-endings on the right side would be a bonus.

The thing I don't like about radio is the likelihood of the cancer returning in say 12 years time.  The doctor tells me that when that happens the prostate is less easy to remove.

As for side effects - I've been told to expect up to 3 months of incontinence.  Okay, I can handle that, with exercises and absorbent pants.  ED seems so variable from man to man , based on what I have read, I will just have to keep an open mind.

Any further thoughts here are most welcome.

User
Posted 10 Jul 2018 at 10:51
Hi I had the same Gleason score as you, with a PSA of 4 my AS lasted only a couple of months before the decision was made to operate, my understanding is that its not a simple choice to as which treatment is best, your age and fitness should be taken into account.

I was dry within a few weeks but unfortunately my PSA has started to rise again so I have just finished a course of Radiotherapy. So just be aware that doctors are not infallible.

My ED is on going but there are many treatments available for this. my advice would be to start the pelvic floor exercises before surgery but be aware that like any muscle you can tire it out.

In retrospect I would make the same choices again. Regards Mel

User
Posted 10 Jul 2018 at 11:33
When John was diagnosed (G7 (3+4) the surgeon said "go away, have a holiday and do lots of what couples do" ... with nerve sparing only on one side you are less likely to regain full erections any time soon so it little bit of normality and then the op during school holidays seems to be very sage advice.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jul 2018 at 14:52

So I'm all booked in for August 6th.  Surgery on the 7th.  A week to 10 days in hospital, then a further 2-3 weeks resting at home.  Then back to school in September.  With absorbent pants under my trousers.

It all seems very unreal.  I feel absolutely fine.  "Why do I need to have part of my body removed?" etc.  I keep imagining silly stories, like did some person with a grudge fake my test results...

Typical denial stage I suppose.

 

User
Posted 15 Jul 2018 at 18:54
Hi,I had almost identical figures as you: Gleason 3+4 and PSA 4.6 with no symptoms at all and as bemused as you are. Both the surgeon and an oncologist recommended surgery as the cancer was pushing up against the prostate wall. It was at the beginning of the summer of 2016, and they told me to go away for a few weeks and then I had the surgery end August. He managed to save half the nerves on one side, and all on the other. Incontinence for a few months, and still some ED, but back to about 70% of where I was and improving steadily. After this September I'm on annual PSA checks; all the results so far show a PSA of 0.00 thankfully. What I would recommend is if you have a few weeks to wait is to get as fit as you can. My medical team told me to do 45 minutes of aerobic exercise a day, drink 3 litres of water, no white carbs or alcohol. Pretty miserable stuff for the summer, but I recovered really quickly, never took a painkiller after leaving hospital(only in for 2 days), and I'm convinced this helped.

Good luck

David

User
Posted 15 Jul 2018 at 20:10

I know what you mean about it feeling unreal, I just had radiotherapy and I had no symptoms at all. I am surprised you have such a long hospital stay, I was in overnight. I hope you won't be needing those pads for too long. Start doing the pelvic floor exercises before your surgery. Good luck Mel

User
Posted 15 Jul 2018 at 20:28

Sounds a good idea to have it done during the holiday.  Within 4 weeks I was practically back to normal although I wore a pad for 4 months and still have significant ED after 18 months.

You say you're booked in the day before the op and are staying in hospital up to 10 days.  You must be having an 'open' operation and not keyhole.  Keyhole gets you out in 2 days.  Although open surgery could be better for not damaging nerves and the like healing takes longer.

Best wishes 

Peter

User
Posted 16 Jul 2018 at 02:59

I believe I am having keyhole surgery.  The thing is, I am in Japan and hospitals here tend to keep patients in longer.  They don't let you go home with the catheter still inside you.  They really do take good care of you - I'm happy to be here.  All being well, I'll be home after 1 week.  10 days is just an outside estimate.

Thanks for the tips about fitness.  No one has given me any advice about diet.  The doctor said no change was necessary.  (Mind you, he said it would only take an hour to do the paperwork to arrange my stay - we were there nearly a full day!)  

Based on my own research, I am sticking to fruit and veg, whole grain bread and rice, no dairy, no red meat, no sweets, moderate alcohol (red wine or beer). Green tea and black coffee as beverages.  Lots of water.  I walk a lot anyway - don't drive.  I'm not overweight.

The pelvic floor exercises take a bit of doing.  The difficulty is to keep breathing normally at the same time as holding the muscles up.  The moment I start exhaling, I lose my "squeeze" and they sink down again.

 

User
Posted 16 Jul 2018 at 05:00
Hi you only have to keep your muscles tight for a few seconds, https://www.mayoclinic.org/healthy-lifestyle/mens-health/in-depth/kegel-exercises-for-men/art-20045074 be careful not to overdo it. Try stopping your flow just once a week or so to make sure your doing it right. As long as your not overweight your diet should be fine.
User
Posted 16 Jul 2018 at 11:22

I wonder how much good these fad diets and pelvic floor/ kegel exercises do for recovery.

I did nothing different before or after my prostatectomy and was virtually continent from day 10 post-op when the catheter was removed, and apart from a few indiscreet ‘incidents’ have been completely continent since week five. I bought and used just one pack of 14 Tena light pads.

I was well enough to have left hospital the day after my surgery, but the op was late in the day and I had a long journey home, so I elected to stay one more night.

If you click here you can read all the gory details if you wish.

I followed doctor’s orders and drank plenty of fluids (beer) before and after my procedure.

There is a free pelvic floor phone app called ‘Kegel Trainer’ if you can be bothered to do the exercises.

Best wishes for the future.

Cheers, John

Edited by member 16 Jul 2018 at 14:18  | Reason: Not specified

User
Posted 16 Jul 2018 at 12:04
There is a difference between fad diets and prostate-friendly diets. Generally, PCa incidence is much lower in the Far East and research is fairly conclusive that this is linked to diet. There is no reliable research to support the idea that diet makes any difference at all once your prostate is cancerous, except that cutting out food containing growth hormones (dairy, muscle meats) and increasing intake of oily fish, processed tomatoes and garlic / allium can slow advanced disease down and help the HT to work better.

All adults should do what they can to maintain a healthy pelvic floor - regardless of whether they are having surgery, it reduces the risk of age-related incontinence. In relation to RP, there are 2 types of incontinence and Kegels can help with one but not the other. John’s surgeon was of the view that they make no difference at all to the leaking in the first few weeks post-op but would do no harm either.

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

User
Posted 16 Jan 2019 at 21:34

Hi, am I right to assume that you have had your surgery now and I hope well on your with your recovery.

I was finally diagnosed on the 26th September 2018 with gleeson score similar to yourself and the statement from the consultant "in his opinion if I did not take action then it would kill" having had the bone scans and other MRI scans   which suggested cancer was localised I opted for surgery. The prostate removed on 13th December 2018. 

Mr recovery is going well with me relatively dry with only a few drips if I sneeze, I feel great and have started exercising in order to maintain/ improve my fitness.

It is fair to say on the sex front it is early days, however I have a great wife and recently  experienced the most intense dry orgasm I have ever had!

onwards and Upwards. Hope all is going well😀

 

User
Posted 18 Jan 2019 at 14:27

Hi there!

Thanks for getting in touch.  It's been a while since I looked at this forum.  I hope your recovery continues well.  I guess you're still in the "what hit me?" stage.  What a way to spend Christmas!

Yes, I had my prostate removed in August and have been fine since.  I did not have the incontinence , apart from (like you) a few dribbles when I cough or break wind.  Even that went away after a month or two.  What is unusual is I have to push a bit when I want to pee, but it's not uncomfortable or painful.  I've got used to it.  The doctor said I would be peeing normally after 3 months but it's close on six now and I don't think it's going to change.

I did lose a bit of weight and I am trying to build up my muscles with some gentle weight lifting at home.  I don't know if this is related to the surgery or just because I'm almost 60.

Sex, no erection as yet.  That's mainly due to lack of opportunity, I'm afraid.  Those dry flaccid orgasms are bizarre aren't they.

I was being careful with diet but lapsed a bit over Christmas and New Year.  I have no idea if that affects me at all - my doctor told me that diet and exercise would have no effect at all.  If there is any cancer left inside me, it's there, whether I eat cheese or not. Apart from a stomach ache, no different from what I would have had anyway, I feel okay, but I have got back to being careful.

I had my first post-op check-up one month after surgery and my PSA was down to 0.083.  The doctor said there is a 20-30% chance it will rise.  If it reaches 0.2 then he says we need to talk.  I go for my next PSA check in early February.  Fingers crossed.

My prostate size was normal.  The cancer was "organ confined".  My CTI and bone scans prior to surgery showed no spread.  My Gleason score was 7 (3+4).  It didn't go up after surgery.

I feel fine.  Sometimes I have to remind myself that it happened - although every time I go to the loo (which is not as often as before) of course I remember.

For now I'm working and leading a normal life.

I did find out from my mum something I didn't know before - Dad had been told he might have a prostate problem, but then Alzheimer's kicked in and they never followed it up; but it looks like it is a family thing.

Take care of yourself, anyway, 4thought!  Hope this message helps.  All the best.

 
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