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Nerves spared on one side = impotence ?

Aubie58
Posts: 3
Joined: Jul 2017

I am new to this forum . Having nerve sparing robotic surgery in a few weeks . Dr said can only spare nerves on the left side . Biopsy report was 7 out of 12 . Gleason scores were 7 in all core samples . 6 of the 7 were on my right side . Dr feels like he can get all the cancer but I am concerned about ED . Is it possible to ever get an erection with nerves not being spared on one side ?  Would injections be effective in my situation . Possible invasion in the lympovascular in one area , but bone scan and CT scan were good . Very experienced surgeon . Any answers ? 

GeorgeG
Posts: 127
Joined: May 2017

Any nerve sparing leaves you with a chance for potency. Partial nerve sparing just reduces the odds but not to zero. Rehabilitation will be key, use it or lose it. It can take up to 4 years to get your final result and expect absolutely zero when you first get home. I was zero at catheter removal and I am at around 50% at 9 months. I had one side spared.

 

Good luck.

 

George

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

The comment that strike me the most in your post was; "Very experienced surgeon" !

However, do you really need a surgeon? Why is surgery your choice if lymph-vascular invasion is present or guessed to exist? Are you sure that the cancer is contained?

Surgery with the nerve spare technique is chosen when the cancer is confirmed contained and existing in inner regions, not close to the capsule or at areas where the nerve bundles run. In fact cases that got nerve spared applied in one side alone, are from the beginning considered risky cases for recurrence. The technique is done usually at the preference of the patient, not because it is better in obtaining cure but because ED got priority in the treatment. There are also those guys that prefer to avoid radiotherapy and chose surgery even when their cases are risky for metastases. Surely ED is for concern and the nerve spare technique provides a chance for fast improvement in terms of sex. One aspect you should also consider is the incontinence problem very much linked with surgery approaches. You should discuss the issue with your surgeon asking him for assurances that the cancer is not located close to or at the sphincter and that he will be delicate when dissecting the gland at the area to avoid permanent incontinence.

I had radical surgery 17 years ago and do have ED but managed to get my lovely nights all along. It never returned to the previous status but got it at the 3 o'clock direction (in my best attempt) without tools. My penis is shorter about one inch (the diameter of the dissected gland). This requires more attention when peeing, in particular when seated as it points frontwards to the toilet seat.
You will never return to your present you. You will need to adapt.

Best wishes for a smooth surgery and fast recovery.

VG

Aubie58
Posts: 3
Joined: Jul 2017

George :  Thank you for responding . I am new to this journey and am trying to understand this new world that i find myself in now. You mentioned that you had one side spared also and you are at around 50% at 9 months. Does that mean you get a 50 % erection with or without any pills or devices ? I am just very concerned that this part of my relationship with my wife might be over. Did you find that injections would give you a full erection ? Looking for answers . Thanks.

Vasco :  Thanks for responding. The surgeon that i selected has performed over 4000 nerve sparing robotic procedures ( i need to get up to speed with abbreviations) . Here is some info from my biopsy report . Can you help interpet some of this .

7 out of 12 with Gleason scores of 7 in 6 samples and one score of 6 . Also 6 of the 7 were on my right side.

Perineural invasion is seen in specimen 1 ( is that common ?)

A focal area of suspicious for lymphovascular invasion is seen in specimen 7 . ( cause for concern ? )

Specimen 2 tumor accounts for 95% of core tissue ;  Specimen 3 tumor accounts for 90 % of core tissue ; Specimen 6 tumor accounts for 70 % of core tissue . other specimens were 50 % of core tissue.

Surgeon was very optimistic about the incontinence issue for me. ( he did not mention cancer being near the sphincter , but that is a good question i need to ask him ).  Bone scan was good and CT scan was good . Dr said that there could be some in some smaller microscopic lymph nodes , but he would take those out during surgery . Based on what i just laid out , what are your thoughts about me ,especially chances of overcoming ED issues without any pills, devices , etc .  Would like some experienced feedback from this forum . Weighing on my mind at this point.

Aubie

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

MRI is a superior diagnostic tool to CT scan and may show extracapsular extension.

The side effects of each active treatment is cummulative. In your case, if you have surgery and have ED which can be likely in your case, and possibly incontinence, you can still incurr side effects from another active treatment choices such as radiation or hormone treatment which will still be needed if all of the cancer is not within the prostate. Basically surgery removal is a localazed treatment

Radiation can be controlled so that the prostate plus area outside the prostate can be treatment. Radiation is more inclusive than surgery. Radiaiton generally has less side effects than surgery. Radiation treatment can replace sugery treatment with more area treated, with less side effects.

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Aubie,

I wonder your age. I hope my posts do not cause you anxiety. This is a new unknown world for you and I think you are worried about the consequences that any decision may bring later. You have focus on ED but other issues are as important as erections in your future quality of life (without a prostate in place). Incontinence is critical and the surgeon cannot assure you a perfect ride without consequences. His part in the job is to dissect the whole gland without affecting the parts surrounding it. He hopes that cancer is whole within the flesh he cuts out so that you get cured.

The unknown possibilities he (as an urologist) told you regards the issues of later recurrence that would oblige you to additional salvage treatments. For instance his comment on the " ... some in some smaller microscopic lymph nodes ...", sounds to me as an excuse for later recurrence. A good urologist recommends surgery only if the cancer is whole in the gland, otherwise would suggest radiotherapy (out of a surgeon scope).

I am not a doctor and my opinions are based on my experiences as a survivor. I do not know how much they weigh into your decisions but I believe that when discussing on a treatment, cure should be our prime goal. The side effects come in second place. When cure becomes obscure then the quality of life becomes the prime target and all efforts should focus in the side effects that are more dear to us. I can imagine that avoiding ED is your prime goal so that I would recommend you to do nerve spare on both sides which would provide you with higher assurances for faster ED improvement.

In regards to the biopsy data, the location of the specimens is missing. Typically they number the cores starting from the base and going down to the mid and apex regions of each lobe (2x3x2=12),  but many urologists do not follow the traditional template numbering and start from the apex. If we consider that your specimen 7 (closer to the lymphovascular that goes up along the bladder) as being at the base (just next to the bladder), then the specimen 1 is at the same area (the base). The other specimens follow the numbering with 2 cores at each other region in each lobe (right or left). The base of the prostate is closer to the sphincter of the bladder and that is where suspicious of risky metastases seem to be apparent (according to the urologist's comments). Even if the specimen 7 and 1 were from the apex the same reasoning would apply.
The volume of infection (95%, 70% and 50%) is substantially high which in my lay opinion, together with the positive finding for PNI (perineural invasion) guesses an high risk for existing extraprostatic extensions. In fact, cancer cases with PNI usually have a poorer prognosis, because PNI is indicative of perineural spread, one of the routes taken by the bandit to travel out of the prostate and to the lymph nodes.
Surely, we know that some pathologists also mistaken the perineural invasion by perineural impingement of benign acini that can mimic invasion by the cancer but it is benign. When PNI is found usually one should get a second opinion on the biopsy cores from another laboratory.

Gleason score 7 stands for intermediate risk for aggressivity and metastases. It incorporates the rates 3 and 4 in pairs of (3+4), being the ones (4+3) judged as more risky in recurrence cases. In your shoes I would consult another urologist (from a different circle) to get a second opinion on your worries.

You may be interested in reading the ED experience of guys in this forum;

http://www.healingwell.com/community/default.aspx?f=35&m=1701386

Best wishes and luck in your journey.

VGama

Aubie58
Posts: 3
Joined: Jul 2017

Vasco . Thanks for your input . Its late , but i wanted to respond. I am 59 yrs old . Gleason scores wer ( 3+4) in 6 samples and (3+3) in one sample ( which sounds more encouraging than (4+3) . Always searching for some positives in all this. You were right about specimens 7 and specimen 1 were both located at the base. ( bummer) . i know it is just a path report from biopsy and maybe surgeon will not find as much bad news when he gets in . Still trying to educate myself. Thanks so much for the link discussing ED. This forum is providing valuable info .

Aubie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3205
Joined: May 2012

Aubie,

As others have noted, if your surgeon said in advance that he would not be able to do nevere sparing on one side, it means that he knows there is extracapsular escape.  As vasco noted, that is ordinarily an argument against surgery generally.

I had surgical removal, but my particualrs were different than yours. With your particualrs, I would have chosen RT myself, and recommend strongly that you at least investigate radiation instead of surgical removal,

max

GeorgeG
Posts: 127
Joined: May 2017

I get about a 50% useable erection without drugs or shots and it takes more work. I get a little better some times if I use a vacuum pump. Your outcome in this area relates to the skill of your surgeon, your baseline status and how vigorous you work rehabilitation. I am traveling and don'y have my notes but if I remember correctly my surgeons number are that if you are under 60 and had good baseline function, both sides spared results in around 75% likeyhood and one side spared had a 40% chance. Odds dropped after 60 at the time of the surgery. It's a tough subject that most of us have to come to grips with. There are solutions to this issue if it does not go as well as hoped and it can take up to 4 years for best recovery. I agree with the other guys here that cure should be your first goal and everything else should be considered after that. We can't keep working the problem if we don't stay alive. I believe that for most of us we get adjusted to our new normal eventually and work the problem from our new point of view.

The most common site of recurrance after primary treatment is the point where the base of the prostate met the bladder at the sphincter or in the case of surgery what is now the reconnection point or anastomosis.

 

George

 

JS2017
Posts: 7
Joined: Jul 2017

I had robotic surgery in December 2016. I was 65 years old and I went through the same decision process and emotions as you, I am assuming. I talked to three surgeons, two at IU Health and one at Urology of Indiana. It was an easy choice to choose one at IU Health as he was very experienced and calm, confident and kind. The doctor at U of I was arrogant, negative and he didn't even bother to make sure he had my records before my appointment.

Prior to surgery, my PSA was at 17 which is very high.

My excellent surgeon was Dr. Ronald Boris.

I also talked to an urgent care doctor when I went into the facility for a different minor problem. He emphatically told me to get the surgery ASAP and save my life. His brother and dad had prostate cancer, so he knew what he was talking about!

The surgery went well, per my surgeon. I was uncomfortable after surgery, but not in much pain, because I had a tube in my throat and my face was swollen, but it all got better within hours.

My stomach had six small incisions which healed well within six weeks.

My nerve was somewhat damaged on one side. The surgeon removed some lymph nodes to make sure he got all of the cancer. My cancer was still encapsulated in the prostate. A month later the PSA test showed zero, meaning no cancer. Second PSA test showed no cancer, too.

Urinary continence returned in just two months! I was so relieved. I tried Cialis and Viagra, but neither of those drugs helped me. Today, I tried Trimix (penile shot). I got a month of shots through Custom Med Apothecary in Indianapolis. It worked perfectly! My erection lasted for several hours. Trimix costs about $95.00 per month. I can afford this, luckily. Medicare does not pay for any of these treatments. Medicare will pay for a surgical implant (I checked). I know you are younger, but I wanted older men to know if they read this post.

The shot was "not that bad" just like my surgeon had said.

If your cancer stage is similar to mine, then you may have the same results. You will have sex again. The orgasm is different, but it's okay. It's just kinda different.

My wife was really happy. She said it was worth the wait. She struggled with depression after surgery, but she went on a low dose of Paxil to help herself cope better. This illness has made a difference in our lives, but we have grown closer because of it. Before surgery, our marriage was rocky. We changed our focus and worked at getting closer again, knowing how things can change quickly when health concerns are involved.

I can't say yet whether I will need to continue with the penile shots forever or whether I will regain normal erections within a year or two. If I do not regain erections, then I will need to think about an implant. I am patient and willing to give my recovery plenty of time.

Hang in there and remain hopeful. Staying calm as much as possible will help you the most after surgery.

Grinder
Posts: 436
Joined: Mar 2017

Hey JS! Me too. Except IU couldn't get me scheduled for six months or so. So I went with Dr. Farnham at U of I in Carmel. Just wondering where Dr. Arrogante was located... If it was Greenwood U of I, I ditched two different urologists there. They were incredibly disinterested in me, but incredibly interested in milking my insurance co. Eventually Anthem wouldn't even deal with them anymore at Greenwood U of I and put them on a "no go" list. I ended up with Dr. Farnham from recommendation of a friend and my GP's research. I could tell you more about U of I Greenwood, but don't want to risk a libel suit... Things may be better there by now (doubt it). Let me know I'm curious....

hewhositsoncushions
Posts: 253
Joined: Mar 2017

Hi Aubie

New to this like you. I can't comment too much on the medical detail as the old lags here know much more than me :)

What I can say is that I am in a similar boat - G7 (4+3) but luckily T2 (informally confirmed post-op). I expect to be upgraded to an 8 (hopefully not a 9) once I meet the consultant after my surgery a month ago but feeling positive.

I had nerve sparing on one side but had my chitlins (vesicles and lymph nodes removed). This was agreed after a good long chat and me accepting that the results could be anywhere from good to bad and it would be a long term journey to any form of party land.

Post op, I had good continence and can barely get a semi that ASDA would chuck in the reject bin if it was a banana (very unsettling to see your appendage look like a left turn sign :)) but things seemed to work after a fashion.

I put the (relative) success down to lots of pre-op core exercise and I have had the importance of Kegels hammered home to me by my continence nurse. Not just for dry times bit after more research I find they are important for ED and orgasms. Every day is Kegel day! There are apps to help.

Although the possible range of a person's sucess is in the lap of the Gods, I think it is important to remember that it is down to us to do the work to get ourselves on the good side of that range, not just for ED but for overall physical and mental health .

The intent expressed to me was always removing the disease, maintaining continence and then sexual function. A common sense order and we need not to misdirect our focus on a very long journey.

Cushions

GeorgeG
Posts: 127
Joined: May 2017

I agree its:

 

1) Cure

2) Continence

3) Sexual function (I know, its "hard" to put this one third)

In that order. If any of those then don't go as planned then work the problem, there are many options for all of them.

 

George

 

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