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Treatment Experiencies

User
Posted 07 Aug 2016 at 09:15

Hi all, I have posted on here already under just diagnosed scared as hell, I had my bone scan on Tuesday and will get the results Tuesday 9th then I hope I will know what treatment will be offered, I would like to hear what treatments others chose from active surveillence to surgery and what was the reason for choosing that treatment, I know I am jumping the gun a bit but I am just trying to get as much info as possible before I have to choose,
best wishes to you all,

Paul

User
Posted 08 Aug 2016 at 10:53

I was told my Gleason score was 7 (3+4) after my 2nd biopsy. My surgeon (in Spain) talked to me about the options and as my friend had also just been diagnosed with PCa I had a good idea of what I should do. I was told if I went down the RT route it would make removal at a later date very difficult if the RT did not work. My friend was also told this in the UK. I went to a different surgeon to get a second opinion and he said if he had the same results as I did he would 100% have the prostate removed.


 


I had the op on 17th June and when they examined the removed prostate the Gleason score was 9 (4+5) so in my mind I made the right choice. I have just had my first blood test results which were very good at 0.008 so hopefully, fingers crossed I am doing OK.


 


I had no pain whatsoever after the op and apart from the Catheter being a complete pain in the butt I had no problems. A little tender at times but nowhere near as bad as I feared pre op.


I think I am slowly getting more control with my incontinence as the pads are less wet day by day. To be dry again is now my biggest challenge. I am back to work and doing anything I wish and today I will try and do a 5k run (may end up walking)


 


This cancer can be beat and whilst no treatment is nice you will hopefully make the best choice for you and recover fully. You are the only one who can decide what treatment if any is best for you.


 


Take care and good luck.

Edited by member 08 Aug 2016 at 10:58  | Reason: Not specified

User
Posted 14 Aug 2016 at 09:12

Thanks Chris,

My surgeon also trained in the states, as you say they all have to start somewhere and you do have to put your trust in them, just want to get on with it now, but trying to stay busy and getting on with things,

bets wishes

Paul

User
Posted 04 Oct 2016 at 07:03

Hi Brian,

The OP itself is OK as you don't feel a thing, I went down at 7.30am and was in recovery at 12.00 so about 4 hours, the biggest problem I had was with gas, but once I had a good fart it was much better, and you can fart anytime and get away with it, I am feeling OK, catheter has not been a problem, stomach hurts a bit from entry wounds but mainly when I cough or sneeze, so one step at a time, I think a little pain is good as it reminds you that you have had a major OP, anyway good luck for you OP any questions please ask,

best wishes

Paul

User
Posted 09 Oct 2016 at 09:13

Hi Brian,

I remember how nervous I was before the OP so I know how you feel, I was nervous right up until they collected me for theatre then the nerves just seemed to go away, I just thought this is it no going back now and then I woke up in recovery, you are doing the right thing having a family dinner will help take your mind off it a little, anyway good luck for tomorrow, let me know how you get on as soon as you can,

best wishes

Paul

User
Posted 25 Oct 2016 at 09:15

Hi Happy H,

The catheter coming out was a breeze I did not really feel it, the worst bit was taking the secure that has been stuck to my leg for 3 weeks, lots of leakage at the moment which is frustrating but just taking one day at a time, going to be expensive buying pads,

Paul

User
Posted 12 Nov 2016 at 15:47

Thanks Tony,

will try doing the exercises that way, will let you know my results when I get them,
bets wishes

Paul

User
Posted 13 Nov 2016 at 09:00
P

If you have a smart phone there is an app called prostate aerobics which is quite useful. It's free on android and a small charge for the OS version.

Thanks Chris
User
Posted 13 Nov 2016 at 11:29

Hi Tony,

Another guy from this site told me about an APP you can download if you have a smartphone with Android, it is called prostate aerobics I have downloaded it and it looks very good, you can set a reminder of when to do them and there are lots of different levels,

Paul

User
Posted 07 Dec 2016 at 19:00

Hi all,

I have just had the letter from the follow up appointment after my prostate OP, the final pathology report confirmed T2c Gleason 3+4=7 with negative surgical margins, I think I made the right decision,
happy Christmas and new year to you all

Paul

User
Posted 08 Dec 2016 at 10:37

hi Tony,

Glad to hear the incontinence is improving, I only leak now when out and about or when coughing and sneezing etc, hope all the tests go well for you, my 1st PSA was undetectable next is in March,

have a great christmas and lets hope the new year is a lot better than this has been,

best wishes

Paul

User
Posted 08 Dec 2016 at 11:16

Hi Tony,

Seems like we are quite similar in our recovery, my biggest problem is frequency going often, the hospital says it is normal and will settle down, I have to retrain the bladder, don't go overboard with the wine I find alcohol makes the incontinence worse but it is Christmas and I am not going to worry too much about it, hears to good PSA results,

best wishes

Paul

User
Posted 08 Dec 2016 at 11:35

Hi Tony,

Try de-caff tea, it does not taste that much different and it does make a difference, I am sure we will get back to normal eventually,

best wishes for all your family,

Paul

User
Posted 16 Dec 2016 at 11:53

Hi all,

I have not been on here for a while, it is nearly 3 months since my OP, I am getting on pretty well, continence is much better and getting better daily, the bigger problem is frequency, I am trying bladder retraining which is slow but seems to be working, next appointment with consultant in March so lets hope PSA is still undetectable, anyway I just want to say thankyou to  everybody that helped me when I started out on this journey and to wish you all a great Christmas and hope that next year is better for everybody,

best wishes

Paul

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User
Posted 07 Aug 2016 at 13:20

Hi Paul,


PCa is generally a slow developing disease and if this is thought to apply in your case, consultants may well be at ease with your taking quite a time in deciding on your treatment. There are situations where very early intervention will be recommended - where the cancer is believed to be about to break out of the capsule for example.


For some patients, surgeons feel that scans and a biopsy indicate that they stand a good chance of being able to remove all the cancer and sometimes this proves to be the case. However, in the event is sometimes happens that the cancer was more widespread than though and in such cases this may be followed up with RT. (Radiotherapy can be used to attack cancer beyond the bounds that the surgeon can cut. It was for this reason that my urologist, who headed the Multidisciplinary team in my case didn't want to operate and referred me to an oncologist.) So staging and other factors may mean one or more treatments may be ruled out. From a success point of view, there is not a great difference in outcomes between various treatments; what is more important is that treatment is timely and administered in a highly skilled way and in the case of RT using modern and preferably state of art machines. There are small risks with all treatments but more chance of incontinence and early ED with surgery than with RT. However, there is more chance of RT initiating cancers in many years time. RT can be given after surgery but few surgeons will remove a prostate that has previously been largely fried with RT.


I opted for EBRT plus Carbon Ion boost in Germany in 2008 as part of a study having been on HT for 7 months previously. My reason for this was that I was given a greater dose of radiation than I would have received in the UK with virtually all the Carbon Ion element deposited on the cancer. (EBRT deposits some radiation off target). Despite this, cancer was again found in the prostate in late 2015 and this was treated with HIFU in 2016, again within a study. I am presently awaiting results of recent MRI scans. Surgery was ruled out because of my staging. Results may have been similar had I had EBRT in the UK, who knows? But I feel I gave myself the best chance of success at the time having read a lot of papers and discussed with an expert on radiation as a second opinion.


For those that are suitable, Brachytherapy RT using radioactive seeds alone or with supplementary EBRT seems to be becoming more popular and have good results -see this treatment comparison site. Click on your staging and you can then get an idea of the range of treatments. Having said that I have seen other sites that indicate surgery is better for younger men - nothing seems to be straight forward and clear cut. You are an individual and could be at any point on the graph. Remember for instance there are different types of PCa, some more radioresistant than others for example. http://www.pctrf.org/comparing-treatments/


 


 

Edited by member 07 Aug 2016 at 13:21  | Reason: Not specified

Barry
User
Posted 07 Aug 2016 at 19:30

PCa IS generally thought to be a good Cancer to get, if you have to have one, have this one, as it IS GENERALLY assumed to be a slow grower.

Ah, you have cancer but its only PCA, you are lucky.

Not really, not really lucky at all.

For clarity, there is no "GOOD" Cancer to get.

But, what if your cancer is not a slow grower? Of the types frequently referred to as a Pussycat or a Tiger, what if you have a Tiger?

The sad thing is until the gland is looked at in a petri dish, at pathology in a lab, after removal, no one, not you, your GP or your surgeon will know what your staging is.

Cancer waiting and developing and growing is like the part of a rollercoaster ride. The ride starts with the carriage being pulled up the up-slope. Then you get to the point where gravity takes over. The clickety-click stops and you are off, out of control, and running.

No one knows when you reach that point. This your gamble, if you assume you have a slow burner.

Sorry to give a wake up smell the coffee moment, but maybe you need it.

Dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 07 Aug 2016 at 20:03

Hi Paul,

I see you have put some of your stats in another thread (conversation) but have not yet shown these under your profile/bio which is often the first place members look as sometimes it helps to know this information before replying. If it is only put in a thread, over time effectively it can be lost.

Barry
User
Posted 08 Aug 2016 at 06:38

Thanks Barry,

Will post tommorrow when I know more,

Paul

User
Posted 08 Aug 2016 at 08:01

Hello Paul.

You were told not to panic by your consultant so presumably he thinks it's a slowing growing pussycat.

Research well. Don't rush. Be sure of your choice then go for it.

Following a year of Active Surveillance at 73 my husband opted for Low dose seed Brachytherapy as he didn't want to go the surgery route. So far all is well.

Brachytherapy isn't suitable for everyone.

As has already been said any RT has the potential to cause problems further down the line (ie bowel cancer) and the younger you are the greater the risk because you'll likely live long enough to possibly develop it.

Brachytherapy has the same chance of cure as the other methods but please - don't rush into anything. After all, you (and your wife/partner) are going to be the one living with the possible consequences of any of the treatments.

Good luck in your choice. Please let us know what your results were

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 08 Aug 2016 at 10:53

I was told my Gleason score was 7 (3+4) after my 2nd biopsy. My surgeon (in Spain) talked to me about the options and as my friend had also just been diagnosed with PCa I had a good idea of what I should do. I was told if I went down the RT route it would make removal at a later date very difficult if the RT did not work. My friend was also told this in the UK. I went to a different surgeon to get a second opinion and he said if he had the same results as I did he would 100% have the prostate removed.


 


I had the op on 17th June and when they examined the removed prostate the Gleason score was 9 (4+5) so in my mind I made the right choice. I have just had my first blood test results which were very good at 0.008 so hopefully, fingers crossed I am doing OK.


 


I had no pain whatsoever after the op and apart from the Catheter being a complete pain in the butt I had no problems. A little tender at times but nowhere near as bad as I feared pre op.


I think I am slowly getting more control with my incontinence as the pads are less wet day by day. To be dry again is now my biggest challenge. I am back to work and doing anything I wish and today I will try and do a 5k run (may end up walking)


 


This cancer can be beat and whilst no treatment is nice you will hopefully make the best choice for you and recover fully. You are the only one who can decide what treatment if any is best for you.


 


Take care and good luck.

Edited by member 08 Aug 2016 at 10:58  | Reason: Not specified

User
Posted 08 Aug 2016 at 11:54

Hi Sandra,

What made your husband go for treatment after a year had the cancer started to grow or was he fed up of the stress every time he had a blood test, I must admit I don't know if I could cope with that, I think if I have the option I am leaning towards surgery,

best wishes to all

Paul

User
Posted 08 Aug 2016 at 12:26

Hello again Paul,

No he didn't fret about the cancer, he actually preferred the AS but his PSA rose from 5.7 at diagnosis to 6.7 so rather than wait for it to creep higher he had to make a choice. His last PSA in May showed it down to 0.2

He was 73 ish when he made that choice so older than you are, in fact he is 10 years older than you.

I don't promote Brachytherapy as a treatment because it is important that each man makes his own decision but all information is useful so I hope it helps.

Good luck with your choice

********

We can't control the winds - but we can adjust our sails
User
Posted 08 Aug 2016 at 15:26

Did he ever change his diet, I have read that giving up dairy can help, also did he decide on the treatment just on the basis of the PSA or did he have another biopsi

Paul

Edited by member 08 Aug 2016 at 18:38  | Reason: Not specified

User
Posted 09 Aug 2016 at 07:36

Hi Dave,

Are you saying that the best way is surgery? you do not say what if any treatment you chose but reading what you have said led me to believe that you had surgery, I must admit if that is an option I am leaning that way, it must be better out, if in doubt cut it out, but we will have to see after meeting with medical oncologist today,

best wishes

Paul

User
Posted 09 Aug 2016 at 09:26

Paul,

If you click Dave's avatar, then 'profile', you will see he has detailed his histology which shows he had robotic prostatectomy

Barry
User
Posted 09 Aug 2016 at 23:20

I chose surgery as I wanted it out. However, all of us need to make the choice that best suits from all the information available. I have no regrets, although lack of sex has been the biggest downer.

However, I'm still here to enjoy life, and touch wood, no PSA reading above 0.1 since.

My dad died of PCa last year aged 86, so having witnessed that, I am determined to wring as much out of life as I can.

Paul

Stay Calm And Carry On.
User
Posted 10 Aug 2016 at 06:31

I only had 2 options, RT or surgery, after reading a post on this site about a guy who had a gleason of 3+4=7 he had the OP to remove the prostate when they checked it it was gleason 9 so that made up my mind, they don't know the real gleason score until they check it in a lab, sex is great but how can you compare to life itself as it is so short,

best wishes

Paul

User
Posted 13 Aug 2016 at 09:42

Hi all,

Has anybody heard of Hem-o clip migration after robotic prostate surgery, seems to be a complication that nobody tells you about,

Paul

User
Posted 13 Aug 2016 at 19:45

I would check whether these clips might be used in the hospital where you are considering having your prostatectomy and if so whether they would agree not to use them on you if you are concerned about their use. Some people do seem to have experienced migration of one or more of these clips. I doubt very much whether many UK patients know what clips/sutures have been used on them! Here is one story. https://www.cancercompass.com/message-board/message/all,74403,0.htm

Clearly one wants to minimise risk as far as possible. I remember a few years ago there was a celebrity (can't remember his name), whose autopsy showed that a radioactive seed placed during brachytherapy had migrated so there are potential risks in various treatments.

Barry
User
Posted 14 Aug 2016 at 06:42
Hi

ColwickChris has had this problem... see his profile.

KRO...
User
Posted 14 Aug 2016 at 07:45

I think it comes down to the skill and experience of the surgeon, you should always ask how many OPs he has done, he should have done at least 400, I asked my surgeon he had done 500, 

Paul

User
Posted 14 Aug 2016 at 08:54
P

Your surgeon as all surgeons had to start somewhere, my own surgeon was trained in the southern hemisphere I was about patient 160, some might say that is why I had clip problems. He is described as being a very meticulous surgeon, he also had a wealth of experience in laprascopic surgery before starting Robotic surgery. I am sure you will agree that they do not give surgeons a list of patients a robot and an instruction mannual and say get on with it.

Your guy has the experience and the live histology is going to perform will give you one of the best options of the perfect outcome. Your scores are on the lower side so all will be well.

I did not come onto this site until after my op, I looked at a couple of options and settled on a treatment and then just put my faith in the team I chose.

I told you about the clips because they are rare and few people recognise the symptoms of clip migration,as the link from Barry said "a one in four year patient" we have had two members with clip migration in two and a half years, so we are not due for another one just yet. As Barry's comment, I was not aware these clips are left in as a matter of routine. When I told my GP she suggested a formal complaint to the hospital, so even she did not know about them.

Easy to say just relax and stay positive.

There are some good conversations on tips and a shopping list for your hospital stay and post op requirements, I will try and find the links to them.

Thanks Chris

User
Posted 14 Aug 2016 at 09:12

Thanks Chris,

My surgeon also trained in the states, as you say they all have to start somewhere and you do have to put your trust in them, just want to get on with it now, but trying to stay busy and getting on with things,

bets wishes

Paul

 
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