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Life after non nerve sparing rdp

User
Posted 08 Feb 2019 at 17:33

Hi everyone, new to this forum (well to be honest never visisted or used one)  but having read some life stories i dont know why I have been worrying about joining. I have arrived here to hopefully find someone who knows or has better knowledge than us (meaning hubbie and me) .

Our journey,  back in june 2018 after PSA and biopsy confirmed PC, my husband opted for Radical prostatectomy at the age of 56. Had the opp late october,  unfortunately it had come through the prostate hence non nerve sparing. Moving on a couple of weeks later got a letter out of the blue saying positive margins (  that really freaked us out). Now treatment plan is currently one more hormone injection in march followed by 30 Radio treatments due to start April. My poor chaps really going through the mill,  he’s still in lots of hip pain (doctors say thats due to lymph nodes removed)  also dead legs. On top of that hes ended up with one hernia and second degree hemoroids! So we would be really interested to know if its all quite normal still being in pain nearly four months down the line? and any tips on dealing with it . Big thank you in advance

User
Posted 08 Feb 2019 at 20:40

Originally Posted by: Online Community Member

My poor chaps really going through the mill,  he’s still in lots of hip pain (doctors say thats due to lymph nodes removed)  also dead legs. On top of that hes ended up with one hernia and second degree hemoroids!

 

Hi Ejane,  Sorry I'm not going to be a lot of help but offer some thoughts which might trigger something extra.  I'm sure none of those events are normal although you'll find a lot of people with various pains and side effects.   

I got hip pain during diagnosis and it was decided it was arthritis, quite a coincidence I thought.  As for dead legs I suffered what I thought was sciatic nerve pain a couple of times, that's very intense and luckily brief and apparently something that can happen after the op.  He could have a nerve slightly out of place.   

As for a hernia and second degree hemorrhoids, has he had anything like that before or has he been straining or eating differently.  Straining should be avoided it pulls on the wounds and stitching. Hopefully someone else will reply.   Regards

User
Posted 08 Feb 2019 at 22:14

Hi and thank you for reply very much appreciated. No problems prior to opp with internal hemmoroids. He was sent for a colonoscopy two weeks ago and the chap who performed it said its very common after robotic surgery to get hemmoroids. Been on softners since the opp so not straining. Had a further ct scan /blue dye to see if fluid was collecting/not draining ,  but that was fine. So the nurse said its nerve damage and should heal overtime. No problems with waterworks. Its just finding away to deal with hip pains and the frustration of not being able to walk far. Hopefully our sense of humour will continue to carry us through.

User
Posted 08 Feb 2019 at 22:29
Hernia and haemorrhoids are known risks after RP - the hip pain is not. It sounds like he had quite a few lymph nodes removed during the op - does he have lymphodema as well?

Hip pain is a well known side effect of HT though????

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

User
Posted 08 Feb 2019 at 23:36

Thanks for reply. We dont know how many lymph nodes have gone,  never been told. At the six week check up post opp we was told the  cancer was agressive type so non nerve sparing performed. The good news was PSA very low, but due to having come through the prostate wall and having positive margins highly recomend hr and radio. The hip pains and dead legs have been present since the op prior to hr. But we will now be looking up about lymphodema, so thanks very much about that.

User
Posted 08 Feb 2019 at 23:46
You would know if he had lymphodema - his feet, legs and possibly hips / genitals would be swollen.

By dead legs, do you mean he feels numb? I have never heard of lymph node removal causing hip pain but if he is feeling pain in the pelvic area and numb legs it certainly seems feasible that he has suffered some nerve damage during the op - as well as cutting through flesh, there can also be burn damage. Nerve damage often gets better over time but it can be permanent.

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

User
Posted 09 Feb 2019 at 08:11
I had 18 lymph nodes removed during surgery and strangely the top surface of both thighs were numb for nearly a year. When toweling myself dry I just couldn’t feel it.

If life gives you lemons , then make lemonade

User
Posted 09 Feb 2019 at 10:09

Not swollen so we don’t thing it would be lymphodema. Sorry by using the term dead legs we mean feeling heavy and numb. It’s looking more like nerve damage, guess its going to be trial and errror to get the best pain relief.

User
Posted 09 Feb 2019 at 10:18

Hi Chris 

We don’t know how many lymph nodes have been removed,  it’s a question we will ask on our next visit. They only said ”we had to take everything”. One nurse said because the lymph nodes are so close to the hip joins damage is unavoidable, and it could take up to 2 years to recover,  lets hope not.

User
Posted 09 Feb 2019 at 14:36

Hi

Wishing you all the best. Can’t help with the pain i’m afraid but hope this is interesting to you.

 

https://www.ncbi.nlm.nih.gov/pubmed/25270277

Edited by member 09 Feb 2019 at 14:47  | Reason: Not specified

User
Posted 09 Feb 2019 at 15:01
Assuming these retrospective studies were looking at all EF including with the help of mechanical or chemical assistance, it is a bit depressing that only 13% of men who had non nerve-sparing regained erections. Hopefully, with the introduction of treatments such as Vitaros and Viridal on the NHS since 2012 the rate will be a little higher now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Feb 2019 at 16:23

Thank you, makes interesting read and all the very best to you!

User
Posted 10 Feb 2019 at 11:26

Originally Posted by: Online Community Member
Assuming these retrospective studies were looking at all EF including with the help of mechanical or chemical assistance, it is a bit depressing that only 13% of men who had non nerve-sparing regained erections. Hopefully, with the introduction of treatments such as Vitaros and Viridal on the NHS since 2012 the rate will be a little higher now.

 

The study explored recovery in the absence of mechanical or chemical assistance, making the 13% a remarkable figure in the context of the prevailing lay understanding. That any such recovery is impossible is an accepted and oft repeated ’fact’ on these pages.

 

This is one of the first studies that has looked at EFR in the era of robotic prostatectomy, so maybe that has some bearing.

User
Posted 10 Feb 2019 at 16:42
Unfortunately, for a man with non nerve-sparing RP to regain erections without some assistance, some nerves have to have been left behind in error ... they can not replicate out of thin air. On that basis, it would be interesting to know what proportion of the 13% went on to have a recurrence.

Not sure that robotic surgery would have a positive influence as all the data so far has shown that outcomes in terms of continence, EF and margins are slightly worse with robotic or standard keyhole than with open surgery.

Our uro also tells me that one of the biggest problems they have with collating outcomes data post-RP is the significant proportion of men who say that they have regained erections when they haven’t - apparently, asking the partners produces a different story.Still, an interesting review of the literature.

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

User
Posted 10 Feb 2019 at 18:10

That’s a huge assumption, and one unsupported by any study or professional opinion i’ve seen. Surely if that was the logical explanation we’d find some reference to it in the studies that do exist? 

I put that same theory (bodged procedure) to my own urologist, who replied ”so the pathologist is in on it too?”  

The point about robotic surgery is that all the current statistics show almost identical outcomes between robotic and open surgery. This in the context of the open surgery technique being at its perfected best, having been around for decades, whilst robotic surgery is new and developing. The statistics for robotic surgery success will include all the mistakes and dead-ends that  come from empirical early learning. If the techniques provide neck and neck results now, it follows that once the robotic technique is perfected as the open one is now, the outcomes will significantly diverge. 

 

User
Posted 10 Feb 2019 at 18:39
It's in the study that you hyperlinked - the authors took a view that the all or nothing of nerve-sparing v non nerve-sparing was unrealistic and we should actually use a 4 stage scale of all spared, some spared, mostly removed, totally removed.

I think most people are clear that robotic offers convenience and faster recovery while open offers slightly better outcomes. I read somewhere on here that the European data from 2017 led to a number of NHS hospitals deciding not to purchase or even to stop fund-raising for new Da Vinci robots. It may have been in a PCUK media statement?

Although it is an interesting debate, none of this is particularly comforting to EJane's OH who it seems is having to deal with more than his share of the negative outcomes and risks :-(

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

User
Posted 13 Feb 2019 at 16:10

My left leg was affected by the RP operation, nerve damage, the Obdurator nerve apparently is at risk of damage when removing lymph nodes

my symptoms were weakness and loss of response in one leg, however this cleared uo completely after a few months

User
Posted 13 Feb 2019 at 18:00
I have a large patch on my left thigh where sensation is duller than the other side but no loss of motor control.
 
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