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T3 non nerve sparing prostate removal

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User
Posted 23 Sep 2024 at 15:41

Hi,

Just been to my 1st appointment in Castle Hill (Hull).

After being diagnosed with prostate cancer, Gleason 4+3, spa 28, I decided on prostate removal. The consultant said it was T3 cancer and he would have to remover the lymph nodes, whatever they are.

Would love to hear from anyone who has had this procedure.

What can I expect and is a sex life out of the question in the future.

Thanks for any advice.

 

Steve

User
Posted 23 Sep 2024 at 22:16

Hi Steve,

 

I recently had DaVinci prostatectomy (Aug. 19, 2024) for stage T3a cancer. I should mention that I'm in the US but I believe that at least some degree of lymph node removal becomes standard if cancer is even suspected to have broken through the capsule. In my case I had 18 lymph nodes removed. So far, this has not caused me any issues.

 

Did your surgeon specifically state that both nerve bundles would have to be fully removed? My cancer had broken out of the prostate on the right side with biopsy confirmation of PNI (perineural invasion) on that side. I was certain that the entire right nerve bundle would therefore have to be removed but following the operation, my surgeon said he only needed to remove roughly a 3rd of that bundle and the left side was fully spared. Now five weeks post-op today, I am still able to get erections unaided and have very minimal incontinence (a light dribble maybe once in a while during physical straining). Since you asked specifically about sex, I will tell you I am very happy but I should mention that sexual activity now does seem to be one of my triggers for a little urine leakage. It happens sometimes close to and during climax. Emptying the bladder beforehand helps to alleviate this.

 

You should ask your surgeon if they use the "Retzius Sparing" technique. I believe this is commonly used now, but you might want to double check. I can't remember exactly what it surgically entails, but my surgeon seemed to emphasize that he uses this technique and assured me it would help minimize incontinence afterwards. I do believe it helped me. Also, as others mentioned, start doing Kegel exercises at least 3 times daily from now until your surgery and resume after the catheter is removed. Both my doctor and his physician assistant told me to do these. It's quick and easy and can be done just about anywhere. I do them in my office while working.

Good luck to you. Feel free to ask questions and keep us posted.

-Mike

User
Posted 24 Sep 2024 at 20:18

Originally Posted by: Online Community Member
 The only issue with the ED stat is it is taken one year after treatment. For the RARP cohort the ED will continue to improve for a further year or two. For the RT cohort a large proportion of them will be still be on HT at a year which may be the cause of the ED (or contributing to it) rather than the RT. A follow up survey after three years would make more relevant reading. You need to see the final outcome of ED rather than work in progress. 

I agree totally. However, it's often been posted on here that in the short term men are far more likely to suffer ED after surgery than RT. I would class a year short term, and these findings therefore contradict that.

I suspect that a lot of blokes who have RT have, because of other medical conditions, been deemed unsuitable for surgery. I also suspect that many of these co existing conditions, especially heart conditions,  themselves cause ED?  If that is the case, wouldn't that mess with figures? To add further confusion, men of our age, without prostate cancer, very often suffer from ED. In addition,  ED can often be due to psychological issues, how do you factor those into the results?

I was mortified when surgery stopped my natural erections. A bit like a kid who'd lost his favourite toy. However, I've eased the pain, by convincing myself, that at my age I'd have probably had ED issues anyway.

I'm very suspicious of any research on radical treatments for PCa and ED, there are so many other factors involved.

In fact, the more prostate cancer research results I read, the more I believe the old adage, "Lies, damn lies and statistics." 

 

Edited by member 24 Sep 2024 at 20:58  | Reason: Additional text

User
Posted 24 Sep 2024 at 23:34

Originally Posted by: Online Community Member
The only issue with the ED stat is it is taken one year after treatment.

The National Prostate Cancer Audit was invalid for the same reason - they asked how sexual function was 18 months after diagnosis assuming treatment was finished, when most of the RT/HT patients were still on (or under the influence of) the HT. They didn't actually ask how far you were along the treatment pathway, so they would not be able to make any useful interpretation of the data they were asking for. I called them up to query this, which they had apparently never thought of, and said wait to do the survey the year after, but

a) it was pointless just me doing that, and

b) it turned out there was no survey the year after - you only got one chance to do it.

I was deeply unimpressed.

Edited by member 24 Sep 2024 at 23:41  | Reason: Not specified

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User
Posted 23 Sep 2024 at 16:03

Hi Steve.

I was 66 years old when I had non nerve sparing, robotic surgery at Castle Hill. I had T3a, Gleason 9 (4+5), PSA 7, cancer. During the op the surgeon also removed my seminal vesicles and 9 lymph nodes.

18 months later my PSA is still undetectable, but unfortunately I'll still have a great risk of recurrence.

I was told I'd never have a natural erection again and unfortunately this has been the case. However, I can get erections with Invicorp injections.

In my opinion, it's a great hospital mate, and I wish you well.

I think you need 10 posts to pm anyone but when you have, if you wish, please don't hesitate to contact me.

Best of luck.

 

Edited by member 23 Sep 2024 at 22:28  | Reason: Additional text

User
Posted 23 Sep 2024 at 18:16

Hi Steve. T3 stage is locally advanced, meaning the PCa has started to break out of the prostate. There is  risk that it has spread to local lymph nodes which are part of a secondary (lymph) circulatory system and can become a bit of a super highway for cancer cells if not treated. I was stage T3b and also opted for surgery. Views differ from hospital to hospital on whether surgery should be performed on T3 cases because there is a higher chance of needing salvage radiotherapy as a secondary treatment. I had 34 pelvic lymph nodes removed during the prostatectomy. Adrian has already mentioned the risk of erectile disfunction and no doubt incontinence will have also been mentioned to you. Lymph node removal also has it's own risk of complications - Lymphocele and Lymphoedema. I was unlucky and copped for both of those. Hopefully you have also had the opportunity to speak to an oncologist about the radiotherapy/hormone therapy option. If not I would strongly recommend enquiring about it before you make what is always a difficult decision. Good luck Chris

User
Posted 23 Sep 2024 at 18:22
At 65 have you been offered radio therapy? Might be the better option if you want to preserve sexual function.
User
Posted 23 Sep 2024 at 19:13

Hi Steve Padley,

After prostate surgery, most people experience some levels of incontinence, at least in the short term.  You would usually have a catheter fitted immediately after the surgery, and this is usually removed after a 7-10 days.  You would then have a "Trial without Catheter" (TWOC).  This will determine whether you are going to need incontinence pads (hopefully short-term).  I would strongly recommend practising Lower Pelvic Floor exercises (or 'Kegel' exercises)  now, in order to get the muscles as strong as possible before the surgery.  This will give you a head start for when the catheter is removed.  You will probably need to continue with these exercises for some time after surgery.  There is an App that you can download to your phone which prompts you when to do them (up to 6 times per day).  One of these Apps is called Squeezy, but there are others.  They cost a few quid.

The other issue is erectile dysfunction.  If you're lucky and they can spare the nerves during the surgery, you will have some chance of the nerves recovering from the trauma of the surgery, but this usually takes time.  You can try Viagra or Cialis to keep the blood flowing to the penis, even if you don't actually get an erection during this recovery period.  It is often advised to use a vacuum pump as well as Viagra etc. to try to recover any penile length that was lost during the surgery.  It also helps with blood flow to the penis.  Some people can have  penetrative sexual intercourse after using a pump.

If they haven't been able to save the nerves during the surgery, then you'll need to use injections to get an erection that is good enough for penetrative sex.  The injections are a bit fiddly, but they do work.

Best wishes,

JedSee.

User
Posted 23 Sep 2024 at 22:16

Hi Steve,

 

I recently had DaVinci prostatectomy (Aug. 19, 2024) for stage T3a cancer. I should mention that I'm in the US but I believe that at least some degree of lymph node removal becomes standard if cancer is even suspected to have broken through the capsule. In my case I had 18 lymph nodes removed. So far, this has not caused me any issues.

 

Did your surgeon specifically state that both nerve bundles would have to be fully removed? My cancer had broken out of the prostate on the right side with biopsy confirmation of PNI (perineural invasion) on that side. I was certain that the entire right nerve bundle would therefore have to be removed but following the operation, my surgeon said he only needed to remove roughly a 3rd of that bundle and the left side was fully spared. Now five weeks post-op today, I am still able to get erections unaided and have very minimal incontinence (a light dribble maybe once in a while during physical straining). Since you asked specifically about sex, I will tell you I am very happy but I should mention that sexual activity now does seem to be one of my triggers for a little urine leakage. It happens sometimes close to and during climax. Emptying the bladder beforehand helps to alleviate this.

 

You should ask your surgeon if they use the "Retzius Sparing" technique. I believe this is commonly used now, but you might want to double check. I can't remember exactly what it surgically entails, but my surgeon seemed to emphasize that he uses this technique and assured me it would help minimize incontinence afterwards. I do believe it helped me. Also, as others mentioned, start doing Kegel exercises at least 3 times daily from now until your surgery and resume after the catheter is removed. Both my doctor and his physician assistant told me to do these. It's quick and easy and can be done just about anywhere. I do them in my office while working.

Good luck to you. Feel free to ask questions and keep us posted.

-Mike

User
Posted 24 Sep 2024 at 07:07

Hi Steve,

Just to make you aware that going down the HT/RT route is no walk in the park either should you choose to go down that route…or are forced to.  You may have short term incontinence during RT but for most people it passes quickly after treatment is finished. You may also have bowel issues which for some can last or appear long after RT is finished. For me RT was a breeze, but HT on the other hand was certainly NOT. You are likely to have total loss of libido for 2-3 years,  accompanied by ED.Hopefully, some time after HT is finished this should improve but there re no guarantees. I also developed Peyronie’s disease and am working (it!) hard to try and correct this. There are also many other common side effects whilst you are on HT such as Hot flushes, night sweats, muscle loss leading to joint ache and mobility issues, brain fog, anxiety/depression. Some men are lucky and don’t get many side effects, others seem to get them all.

Sorry if all this sounds a bit depressing but just wanted to ensure you knew there are no easy options for treatment. There are however many things you can do to help with these side effects and keeping fit and active before, during and after treatment I think is essential, guided of course by your surgeon or Oncology team.

I wish you good luck with whatever treatment you go for.

Derek

User
Posted 24 Sep 2024 at 16:05

If I was being offered surgery for T3a with pelvic lymph node dissection and non-nerve sparing, I would definitely ask about radiotherapy instead. Actually that was my situation (didn't get as far as discussing PLND), and this is what I did, as urology suggested going straight for RT. RT is less likely to cause ED (although there's still a risk), and lymph nodes can be included in the radiotherapy field with very much less risk of lymphedema afterwards.

Neither option is risk-free, but you've effectively been pre-warned the surgery route is pretty much guaranteed ED and risk of lymphedema in your case.

 

User
Posted 24 Sep 2024 at 17:42

Originally Posted by: Online Community Member
RT is less likely to cause ED (although there's still a risk),

Hi Andy.

This recent research from Sweden seems to question that?

https://www.sciencedirect.com/science/article/pii/S258893112300295X#:~:text=Results%20and%20limitations&text=After%20RARP%2C%2013%25%20of%20men,%2C%20and%2077%25%20after%20RT.

 

Edited by member 24 Sep 2024 at 18:39  | Reason: Add link

User
Posted 24 Sep 2024 at 19:39

Adrian, there are some interesting stats in the paper. Thanks for sharing. The only issue with the ED stat is it is taken one year after treatment. For the RARP cohort the ED will continue to improve for a further year or two. For the RT cohort a large proportion of them will be still be on HT at a year which may be the cause of the ED (or contributing to it) rather than the RT. A follow up survey after three years would make more relevant reading. You need to see the final outcome of ED rather than work in progress. The other thing that is a bit strange is that 60% of the men who had RARP were just stage T1

User
Posted 24 Sep 2024 at 20:18

Originally Posted by: Online Community Member
 The only issue with the ED stat is it is taken one year after treatment. For the RARP cohort the ED will continue to improve for a further year or two. For the RT cohort a large proportion of them will be still be on HT at a year which may be the cause of the ED (or contributing to it) rather than the RT. A follow up survey after three years would make more relevant reading. You need to see the final outcome of ED rather than work in progress. 

I agree totally. However, it's often been posted on here that in the short term men are far more likely to suffer ED after surgery than RT. I would class a year short term, and these findings therefore contradict that.

I suspect that a lot of blokes who have RT have, because of other medical conditions, been deemed unsuitable for surgery. I also suspect that many of these co existing conditions, especially heart conditions,  themselves cause ED?  If that is the case, wouldn't that mess with figures? To add further confusion, men of our age, without prostate cancer, very often suffer from ED. In addition,  ED can often be due to psychological issues, how do you factor those into the results?

I was mortified when surgery stopped my natural erections. A bit like a kid who'd lost his favourite toy. However, I've eased the pain, by convincing myself, that at my age I'd have probably had ED issues anyway.

I'm very suspicious of any research on radical treatments for PCa and ED, there are so many other factors involved.

In fact, the more prostate cancer research results I read, the more I believe the old adage, "Lies, damn lies and statistics." 

 

Edited by member 24 Sep 2024 at 20:58  | Reason: Additional text

User
Posted 24 Sep 2024 at 23:34

Originally Posted by: Online Community Member
The only issue with the ED stat is it is taken one year after treatment.

The National Prostate Cancer Audit was invalid for the same reason - they asked how sexual function was 18 months after diagnosis assuming treatment was finished, when most of the RT/HT patients were still on (or under the influence of) the HT. They didn't actually ask how far you were along the treatment pathway, so they would not be able to make any useful interpretation of the data they were asking for. I called them up to query this, which they had apparently never thought of, and said wait to do the survey the year after, but

a) it was pointless just me doing that, and

b) it turned out there was no survey the year after - you only got one chance to do it.

I was deeply unimpressed.

Edited by member 24 Sep 2024 at 23:41  | Reason: Not specified

 
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