Radical prostatectomy or not ?

Men's health
1

Hi, I think I am a healthy male aged 62 and attend gym classes regularly with a view to keeping fit.

I have looking to have a radical prostatectomy (complete removal of the prostate).

Having had a PSA test with a level of 12, followed by a 1.5T Multiparametric MRI scan at Bristol NHS hospital. (Would have liked a 3T scanner but unable to find a hospital with one).

Which came up with a possible cancer to the left side of my prostate.

Followed by a prostate biopsy (Tiverton NHS) which confirmed cancer to the left of my prostate with a Gleeson level of 3+4 in 70-90% of mean core volume, 50-60% of overall volume, which has not spread to any other areas. 

My main question is regarding incontinence and loss of erections that will probably follow.

Does anyone know if it could be a permanent result, my other option may be to just monitor the situation through regular scans.

Any advice appreciated, many thanks.

Barry

 

2

Hello, Barry -

I like to think that I fit your description of fitness when I  had a nerve-saving radical prostatectomy seven months ago. I was 64-years-old and, quite frankly, was very anxious about the outlook and turned to many sources, including this forum, for advice and information. I determined that I wanted the cancer removed and prayed that it had not spread.

My diagnosis - Gleeson of 8 ( 4+4) was downgraded to 3+4, post surgery,and there were no signs of cancer in lymph nodes,etc.

Seven months later, I have achieved continence for the most part. There is some occasional drips so I continue to wear a very thin pad for peace of mind.

My bathroom habits have changed, I used to pee a few times a day - but since surgery it's more like once every hour or so. This continues to get better

 The.good news is that no cancer is detectable in my check-up screenings!.

Regarding erections, I'm still on the mend. It's my understanding that I'll see progress over the next several months.  I can't get an erection by just thinking about it. With stimulation, it's working, but not at the previous firmness . I am not taking any ED meds, so maybe things would be better if I did. The surgery definitely affects things, but I sincerely believe it will get better over time.

Bottom line: the surgery seems to have addressed the cancer and I'm on the mend, No doubt, some men have better recovery stories to tell, but these may be the exception.  That said, I have discovered in local support groups that recovery is a process, not a single point.

I made the right decision for the surgery. I don't like the side effects, but they continue to diminish. There is hope.

Best wishes,

Gene

 

3

Hello Gene

Thank you for the information. Yes I am coming down on the side of having the prostate removed.  Was yours done robotically (think it's called Da Vinci) ? as many friends seem to say that is the best way to go.

Many thanks and best wishes

Barry

4

What does your doctor tell you?  Did he recommend the RA?

5

U do what u want, I would not go through with it. Too many testimonials regretting having it done with the cancer returning with a vengeance.

Accept/tolerate what u cannot change, it is what it is.

Diet n lifestyle change is all I would have left in my quiver for survival:

Do: Budwig, gym, swim, delete certain foods from your diet. Monitor your markers daily, weekly. U gotta/will turn it around.

I WOULD NOT HAVE THE PROSTATECTOMY.

6

I have no relevant experience to share because my PSA 16.9 and 3TMPRI with Liekhart scale score 4, wasn't ultimately cancer.  However if you have radiotherapy instead of removal, if it doesn't work it messes everything up (mushes tissues around the edge) so you can't then have removal.  Watchful waiting is fine for people with a very cool head.  I can't see if this disease affected women, that ANY would choose "watchful waiting" !!  Watchful waiting ​would not be for me.  I decided during the short time I thought I might have cancer, I'd have the da vinci and have rid of it, if it were confirmed.   It's the best shot at ensuring it's gone.  I know nothing of continence or potency outcome stats, but there's clearly some non-trivial risk on both fronts.  The best surgeon in UK is said to be Chris Ogden. There is a published study of his outcomes for this procedure on BAUS, lowest rate of complications, the rate of complications from Da Vinci is given for most British Surgeons there, so you can use it to find a good one near you if UK based. 

7

Hello, Barry  -

Yes, my surgery was robotically - Da Vinci. Not sure where you are on the globe. My surgery was in Des Moines, Iowa, USA. I was hospitalized over night and went home late the next day. Cath was removed about a week later. I feel I received good care. Heretofore,  I had never had surgery or had been hospitalized for any reason. My surgeon had performed nearly 1,000 of these operations, so there was some comfort in knowing he has good skills. Keep us posted. You'll be OK.  Gene

8

PSAs are unreliable n should have been discontinued, as comfirmed by its founder years ago.

The key is finding the right urologist.

9

Hello Gene

That's good to hear, many thanks.  I'm in Barnstaple, Devon England.

Thanks again.

Barry

10

Hi

I have to wait until the medical team at Exeter examine my case and make a decision.

Yes my consultant recommends an RA so hopefully that is what I will be offered next week by the medical team.

 

11

Hi Paul

Many thanks for the info. Sounds like I will have a lot of reading to do   8-)

I'm hoping to have a radical prostatectomy done but I will look to be armed with all the facts beforehand.

Thanks again.

Best wishes

Barry

12

Urology wise it sounds like a gamble !

13

Berry  that is a decision we all can't make for you but I would see if you can get a mini turp and just get rid of the one side.   You would stand a better chance of not having to ware depends and be able to get your erection back quicker.  I was reading that it sometimes takes up to 3 years to get a erection back and that is with pills  Good luck  Ken

14

Another thing just because they are telling you that you should you don't have to agree.  They can tell you if it is slow growing or not.  Why do something so out there now.  I had a friend that he was talked into it by his wife and doctor that RA was his best shot.  He was 49 at the time  he is 52 now and he wishes he was dead everyday.  His 2 kids are the only thing that keeps him going.  The only way he can have sex now is with the shots and the last time I talked to him he stop them because it takes him to long to have a orgasm and for what he is saying they are not worth the time.  His wife left him  I should call him to get his mind off his problem.  No man should ever do that.  There is all way another way.  Like I said Why not get ride of the side that has the cancer and leave the other alone.  Good luck  Ken

15

Finding the right uro took me 13 yrs by way of divine Intervention.

Throughout all those 13 yrs I bled n spewed clots the size of a hockey puck.

Four separate uros worked on me on separate times.

The hell they put me through n they're still practicing with no guilt.

If not for the photos taken by the 5th uro I would have never known.

ITS NOT THE PROCEDURE BUT WHO DOES IT.

16

I would so no, don't do it. Your Gleason scores suggest a low likelihood of the cancer spreading and if you're a fit, youngish 62 who still enjoys sex and would be bummed if you dribbled for the rest of your life, you're likely to be  disappointed.

Here's what you can expect. You WILL be incontinent for at least awhile - several months unless you're really lucky. Most men eventually get reasonably continent, but often with some dribbling, exacerbated by physical activity - meaning there is a good chance you can't go to the gym again without a pad. You'll be as good as you're going to get in the continence dept. at six months post surgery.

As for sex, the news is much worse. 50% of men who had nerve sparing surgery never can get an erection again. As for the other 50%, it usually takes 18-36 months and even they are never the same. Most men who can get erections need meds (Viagara/Cialis) to do it and they are never the same as they were pre surgery.

Prostate removal is something that should be reserved for aggressive cancers when its likely the only way to save your life, yet urologists do it whenever they can. This sounds like something you can watch and treat more aggressively if it starts to grow, which in all probability won't ever happen.

If you feel the need to do something, best thing is FLA, but you'll have to look far to find a doc that does it (not a Uro, but an interventional radiologist) and might have to pay out of pocket.

Prostate removal is a NASTY surgery, with a long recovery that in the overwhelming majority of cases is completely unnecessary. I would recommend against it in your case and suggest that you find someone that can do the 3T MRI for regular 180 follow ups, so you don't have to have a needle up you twice a year. 

17

Barry,

I faced the same decision in 2012. Don't want to go into a long discussion here, but I did a lot of research and met with several doctors who performed the various procedures. I eventually decided on HD Brachytherapy. Based on my studies it had the highest probability of success eradicating the cancer with the lowest side effects. I went in for two sessions in 2014. The only issue I had post op was prostate swelling from the radiation. I was unable to urinate on my own for 5 weeks and had to have a catheter - actually no big deal - got used to it. 

One member of my extended family and one friend had the RRP that you are considering. Both had a really tough time in the months that followed. Basically, they weren't able to control their urination - severe incontinence. The family members cancer came back and he had to go in for radiation. I haven't spoken to my other friend in some time, but I do know his struggles lasted a very long time. 

Looking back on my decision I would do the same thing again four years post procedure. My PSA is steady at 0.1. I get tested every 6 months and it's always the same. I can get an erection but it is soft, so there is some ED. I can urinate but have typical BPH symptoms unrelated to the radiation. 

So, I don't want to be discouraging, but once you begin down this road there are going to be issues. It's likely that whatever procedure you choose will have side effects. ED is a likely outcome of anything you do, and incontinence issues can be another major issue in your life.

Active Surveillance or "watchful waiting" is an option - I did it for a year and a half, but it caused anxiety - I was always concerned that the PCa was growing. Once I had my procedure that anxiety went away. 

As prostate cancer is slow growing, you do have time to do your homework, which is why you are here on this forum. 

My very best to you,

Tom

18

OLD  I am happy you told him that.  There should be something else he can do.  What do you think about a mini turp If it is in the left side get rid of the left and leave the right alone.  He would have a better chance to recover.  The nerve on the right would not be damage.  And all the cancer would be gone.  If he want a surgery.  Like I told him Just because the doctor are telling him this is what he needs he does not have to do it.  I told him to read   I want my prostate back.  I feel sorry for that man  Ken