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Trying to decide between a nerve sparing procedure and a non nerve sparing

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Posted 12/30/2009 6:49 PM (GMT 0)

Hi All,

We are new to the site and have a very new diagnosis.

My husband is 46 years old

My husband found out he has prostate cancer 12/17/09

First ever PSA taken was 5.7 in 9/29

Second PSA taken was 7.1 10/30

He then had a biopsy and got the results on 12/17

Hopefully all my termonology is correct as this is all so new to us. Out of 12 "samples" they found two areas of cancer.

His Gleason is 7 (3 + 4)

He had a CT and a Bone Scan and both show no signs of the cancer spreading.

Because of his age they are recommending a radical prostatectomy.

However..the Gleason 7 leaves us with a choice to make.

Does he have a nerve sparring procedure and take a chance it has spread out to the nerve or does he have the non nerve sparing procedure to guarentee the cancer is completely gone?

We are both feeling quite overwhelmed with this decision and would appreciate anyone's advice or opinion. Keep in mind his age.

Thanks so much.

Posted 12/30/2009 6:53 PM (GMT 0)
I believe nerve sparing is usually determined during surgery. However, just because nerves are removed there is no guarantee the cancer is gone.
Posted 12/30/2009 6:59 PM (GMT 0)
Hello and Welcome to HW. We are sorry you have to be with us, but glad you are here where you can get lots of help from a lot of caring people. Newcomers are generally asked to prepare a signature from the control panel, so we can look at your stats for insight into the specifics of your husband's condition. As to your question, I asked my doctor to spare the nerves if he could, but to do what was necessary to get the cancer out. He was able to compromise, and do partial nerve sparing on both sides. When he gets in there he will be able to determine the condition of the nerves. Not many of the posters here have had the nerves completely spared.
All the best.
Roger
Posted 12/30/2009 7:02 PM (GMT 0)
First, welcome to the Forum, hate you are here, glad you came... smilewinkgrin I think that the decision, like squirm said, is made during the surgery, depending on what they find. I suspect it will be determined by the surgeons experience and what he feels is the best way to go. The patient will have some input into it, but the final decision most likely will remain with the surgeon on the scene, so to speak. If the patient has made a valid risk vs benefit analysis of the thing, in which case the patient can probably require the doctor to not take, if they are willing to take the chance and understand the odds.

There's others here who can answer your question much better than me, so wait for them to come along....
Posted 12/30/2009 7:02 PM (GMT 0)
Thanks...the doctor told us we needed to make the decision...because his Gleason is borderline. Leaving the nerves would make quality of life better....but is it worth taking that risk....and you are right even if they remove the nerves the cancer could still be there.
We won't know anything for sure until the prostate is removed and they have analized it.
Facing incontinece and impotence at 46 is rough (as it would be at any age) but is it worth taking a chance to spare the nerves?
Posted 12/30/2009 7:23 PM (GMT 0)
A tough choice, for sure. I think were it me at age 46, I would discuss the option of sparing the nerves and doing salvage radiation after RRP to possibly kill any left over cells. That's strictly my idea, and I not recommending it to you, but giving you other things to consider. Another alternative could possibly be a round of hormone therepy instead of in conjunction with the salvage rad. The first recommendation of almost eveyone here is to get second opinions on the more difficult case especially. You need to make sure you are discussing this with an experienced and practiced surgeon and get a consult with a radiation oncologist before making a final decision. I would also explore seeding and rad combo's, just to cover the bases before locking into surgery as the only option Take some time now to explore a life changing decison.

In any case, even with the loss of both nerve bundles, it isn't the end of the world, or your sex life. There's injections, implants and pumps to give back what surgery might have taken away. So don't despair if they are removed.
Posted 12/30/2009 7:39 PM (GMT 0)
Hortonswho,
Have you thought of getting a second opinion from another surgeon? One that has done many nerve sparing procedures? It just seems strange you're left to make this decision.
Posted 12/30/2009 8:02 PM (GMT 0)
Hortonswho (cute Seuss reference)

Not to sound direspectful but please, find a better surgeon. Your hubby's PSA is still low enough and his Gleason 7 isn't in the high risk range nor are the number of positive cores. A 3+4 acts more like a Gleason 6 than a Gleason 7. Unless hubby has a very small prostate or, the surgeon knows something he hasn't shared, nerve sparing surgery is not yet ruled out. Even if a nerve had to be removed, it is appropriate to ask whether sural nerve grafting is available as it would be done if, and when the decision is made during surgery. My hub was 48 and we had a surgeon on stand by in the event one or both nerves had to be excised.

Unless I am missing something, your husband's surgeon is practicing defensive medicine. Guys like this tend to make me a wee bit leary personally. Been around the block with oodles of Doc's over the the years and this one makes me nervous. Be bold and ask some more questions.

Posted 12/30/2009 8:06 PM (GMT 0)
Wow! So much to think about. Thank you everyone. We are happy with this doctor...he has great ratings and much experience, but of course we are getting second opnions. His PSA was not performed after the DRE and there was no sexual activity prior to the PSA. However, that is rather a mute point now that they have detected cancer in the biopsy.
The surgery is recommended due to his age. The effects of radition are long term and at his age we are praying we have a long term to look at.
My father has prostate cancer as well and is being treated at Loma Linda with Proton Therepy and we are forwarding my husbands records to them to analyze.
Posted 12/30/2009 8:15 PM (GMT 0)
You found a great place to ask questions.  BTW what was the locations of the two positive cores?  The reason I ask is because I had high volume prostate cancer.  10 of 12 cores positive on biopsy.  My right side had the higest % volume per core (up to 75%) SO....I made the final decision with input from several physicians including my surgeon, to have non-spairing surgery on the right side and attempt to have nerve sparing surgery on the left side.  Interestingly I am currently talking to my youngest brother (47) about this issue.  He just got his bxy result back and is a new member of the club.  I have seriously ask him to consider asking his surgeon about doing the same... that is to say, "save one and cook the other".  Hero
Posted 12/30/2009 8:54 PM (GMT 0)
Hey Hortonswho,
In my opinion something's not quite right in Whoville. I can't think of anyone here who was given that choice before the surgery. (Guys correct me if I am wrong here.) I'm willing to bet, on the big day, every one of us went in the arms of Morpheus thinking the surgeon would spare nerves if possible but would take them only if necessary. It was not our decision. I lost one nerve, and my second nerve was damaged. Granted, it is only 5 months after surgery but I am incontinent and have total ED. How different would my quality of life be I had one good nerve?
Most likely you two are not fortune tellers nor do you have scanning equipment at your fingertips. How can you be forced to make such a decision beforehand?
How may surgeries has you surgeon done? Is there any way you can get a second opinion?
In the meantime, educate yourselves while you still can.
You have found a great site and will find much support here and you are alway free to ignore any advice you get.
Good luck in these stressful times. It will get better.
Jeff
Posted 12/30/2009 9:16 PM (GMT 0)
Hello, and welcome to our little neck of the world. In my opinion and experience, a good surgeon can't make that decision ahead of time. The prime purpose is to eradicate the cancer. In the classic sense of prostate surgery, the surgeon works to rid the body of cancer, then try to minimize incontinence problems, then to preserved erections. But never worry about ED as opposed to ridding one of the cancer.

That was the approach my open surgeon used. As a fellow Gleason 7, I went into surgery expecting a non-sparing surgery. In the end, he left the right side alone (noted that it appeared damaged), and removed all the left side nerve bundles. In the end, despite only having one set of nerves, I have experienced no ED at all post surgery. One of the lucky few, I admit. I also had very little problem with incontinence, less than a month.

You need to find a really skilled surgeon, with sufficient experience to do the best job he/she can do. But there are no guarantees in surgery, you get what you get in the end.

Please keep us posted.

David in SC
Posted 12/30/2009 10:03 PM (GMT 0)
Horton, my husband had robotic surgery in March 2008. I'm surprised the doctor is asking you to make this decision as he (or she) has no idea what they're going to find "in there." The decision to remove the external nerve bundles is usually based on medical necessity rather than the patient's desire. The surgeon's aim should be to eliminate the cancer - sometimes that means taking the nerves if there's a risk of leaving any cancer behind.

My husband did not have the nerve bundles removed and did have one single extension of cancer outside the gland. The surgeon said if he needed to remove the nerves he would have.
Posted 12/30/2009 10:50 PM (GMT 0)
Horton,

I also think it's a little strange to be asked to choose between nerve sparing and non-nerve sparing BEFORE the surgery. The nerves are sort of glued with connective tissue to the capsule of the prostate along with blood vessels that are called the neurovascular bundle. The surgeon gingerly dissects the bundle away and leaves it intact if there is no sign of penetration by the tumor. As far as I understand that can't be known beforehand. I certainly was not asked to make such a decision and I would like to know who here might have. Might it be time for a second opinion?

Best of luck,

Steve
Posted 12/30/2009 10:50 PM (GMT 0)
As was said before by others. Dr went in trying to save nerve if possible. If cancder was in the way he would take them. I was lucky and saved nerve now if I could just get the nerve to work!

JEFF T
Cajun Country
Posted 12/30/2009 11:33 PM (GMT 0)
Hortonwho,

As a Gleason 9 patient, and and an attendee of the Cleveland Clinic school of Davinci Dance, I think you are getting solid advice.

There is a school of thought that says, Gleason 7,8,9; whack it all out.  Even the intern who was working in our pre-op testing said they would take out both nerves.  The surgeon however said that he rarely takes out the nerves, being careful to spare as much as he can.

So far, I am thankful that he spared my nerves, and with my good PSA so far, I am hopeful he got it all.

Obviously you could take some of this to an extreme.  Why not take out all lymph nodes, mayber the bladder, or whatever else is close by?  There are so many ways that the cancer could escape, and how far it goes is a million dollar question.  I would say at 48, the risk is worth it with only 2 out of 12 cores showing cancer, that the nerves are OK.

I think you will feel better by going to a major cancer center and getting a second opinion, if nothing else than to confirm your doctor's opinion.

Good luck.

Goodlife

Posted 12/31/2009 12:35 AM (GMT 0)

Horton,

I must agree with the majority here that it is peculiar for a surgeon to ask the question in advance. Further, if the biopsy did not show that the PCa extruded outside the prostate, the question is even more peculiar. Your answer to the question should be "Of course save the nerves, unless they are affected." Giving the Doc the benefit of the doubt, perhaps he was just forwarning you about the sisks of surgery.

I agree with others here that a 3+4 gleason is on the low end of the scale (for PCa) and you and your husband have very good prospects for recovery. It s a journey that you must do one day at a time. Read up on it, listen to what the Loma Linda folks say and ask alot of questions.

best wishes,

Ted

Posted 12/31/2009 12:37 AM (GMT 0)
Looks like several had the same reponse I had, get a second opinion and find a better surgeon
Posted 12/31/2009 1:33 AM (GMT 0)
Horton explained:
"Thanks...the doctor told us we needed to make the decision...because his Gleason is borderline. Leaving the nerves would make quality of life better....but is it worth taking that risk....and you are right even if they remove the nerves the cancer could still be there.
We won't know anything for sure until the prostate is removed and they have analized it.
Facing incontinece and impotence at 46 is rough (as it would be at any age) but is it worth taking a chance to spare the nerves?"


And then Swimom put it very well,
"Your hubby's PSA is still low enough and his Gleason 7 isn't in the high risk range nor are the number of positive cores, indicating the volume. A 3+4 acts more like a Gleason 6 than a Gleason 7. Unless hubby has a very small prostate or, the surgeon knows something he hasn't shared, nerve sparing surgery is not yet ruled out."


I concur with Swimom, and here's my spin. I don't believe these are either-or quality of life choices, they are shaded gray. I spoke with several surgeons, I was 3+3 in 2 cores as well when diagnosed at age 48. Your Gleason 3+4 is borderline to a 3+3 more so than a Gleason 8 or a 9. NONE of the surgeons I spoke with suggested that I had a black-and-white choice to make. Nerve-sparing surgery was on the agenda for all of them. Please note that a disproportionate number of members here are on the "more complicated" side of things... Opa, It may *seem* that the posters here don't have nerve sparing surgery, HOWEVER, having observed that, I'd venture that the majority of standard RRP or robotic RRP jobs ARE nerve sparing these days, if anyone has numbers to the contrary please educate me. It was made clear to me that the sequence echoed by Purgatory is the standard approach; remove the cancer 100%, then preserve continence, then prevent ED. My understanding is that these are all rather perversely linked components of the surgical procedure; one can have a poor tumor removal that doesn't damage the nerves and a great anastomosis, but who wants that? My chosen surgeon indicated that he'd remove the prostate and did NOT expect the nerves to be involved, but if that is what he found during the surgery, they needed to go. I was OK with that. If I recall, I signed a form to that effect, and perhaps that's the decision you're speaking of, acknowledging that it might happen, and if needed, go ahead. Real life: even if they "spare" the nerves, they get traumatized and somewhat damaged with an aggressive, careful, thorough prostatectomy. That's the way it goes. They'll need time to heal.

Also, my understanding is that surgeons have a pretty good clue about these things during the surgery. Textures, densities, colors, "stickiness", etc. Lymph node dissection & biopsy occurs while you're still in surgery. An experienced surgeon can feel and see a LOT, and more to the point, have a basis for comparison.

Look at the odds and talk to more surgeons. Check the nomograms. I believe you'd see that nerve sparing would be the approach. There's a good chance that the cancer could be wholly contained. Expect some incontinence symptoms that can be easily dealt with as things heal up. Expect some level of ED that is eminently treatable. I really don't think you're facing 100% incontinence and impotence.

Your biggest challenge appears to be interviewing surgeons to find one that you like and trust with a lot of surgeries behind them. My preference was standard, not robotic, surgery, but that's another discussion. Either way I agree with your choice of surgery rather than radiation as step one.

To paraphrase someone who posted here, I believe, some time ago; research and interview and document and review your findings diligently, you will know when you circle the trail and are not learning anything new. At that point your choice - and decision - will be clear.

Make careful notes about your journey, and make sure you're physically active to build up strength, resilience, and fitness.

Remember the larger risks in life that dwarf a prostate cancer diagnosis at an early stage. I think many of us lose sight of the big picture. Not wearing seatbelts, driving while impaired, cigarette smoking, substance abuse, inadequate sleep, obesity, high cholesterol, high blood pressure, undiagnosed diabetes, and lack of exercise will all conspire to do FAR more damage and check us out of the picture sooner than a treatable early-stage cancer. Just my opinion.
Posted 12/31/2009 2:34 PM (GMT 0)
Dear Horton:

IMHO, you are properly concerned with quality of life issues.  I think these are important at any age but I think at a young 46 they are especially important.

I did not choose surgery.  For my case, the cure rate for brachytherapy was as good as surgery and the side effects (quality of life issues) were projected to be much less onerous.  However, I did interview several surgeons and I believe the advice you are getting on this thread from the surgery folks is appropriate.  That is, none of my prospective surgeons asked for a nerve spaing decision ahead of time and all of them indicated they would attempt to spare the nerves but the decision would have to be made in the operating room.  Additionally, not only cure rate but also complications (incontinence and ED) can often be linked to the quality of the surgeon.  So please find an experienced doc who can show you his or her personal stats on cure, incontinence and ED.

Finally, even though you have been told surgery is the answer, you might consider contacting a world class center like Dattoli in Sarasota.  They specialize in combination radiation therapy and have had some very positive results treating both younger and older men.  They also use color doppler to assess the cancer.  This is a HUGE decision and you only get one chance to get it right.

Tudpock

Posted 12/31/2009 2:42 PM (GMT 0)
My doctor made the decision during the surgery. He spared the nerves and the final report came back a gleason 8. I have had undetectable PSA's since. I go next month for another PSA.
Posted 1/1/2010 4:29 PM (GMT 0)
Hi Hortonswho,

I would recommend getting some additional opinions.  Before my surgery in November, I met with three surgeons and a general medical oncologist.  All three surgeons, independently, recommended taking one nerve bundle because of the location of the cancer.  That helped set my mind that this was a necessary course.

That said, the results were not drastic at all, as I had feared.  Recovery was quick. I had no problem with incontinence, and only wore pads for a few days until I was sure.  At age 66 I did not expect that.  I also feel great, and after eight weeks have resumed a fully active normal life.  My wife and I plan a major trip in February to Asia. 

As for the other issue that relates to nerve bundles, that is a work in progress, but I am encouraged. I would add also that the main goal is to achieve the best chance of being cancer free.

Best wishes to you and your husband.

Age 66

PSA:  6.0  on 07/31/09 having risen from 4.2 on 12/02/08.  Free PSA 23.5%.Other PSA History: 4.3 on 05/01/08; 3.3 on 11/15/07; 3.1 on 05/20/07; 4.0 on 11/30/06; 3.40 on 09/01/05.

 

Biopsy:  09/04/09  13 snips;  two positive.  Right Mid  4+3 = 7 and 15% of the total volume.   Right Lateral Mid 4+3 = 7 and 20% of the total volume.

 

DaVinci robotic surgery:  11/05/09.  Post surgery pathology:  margins clean, no invasion of seminal vessels, no upgrade of the Gleason scores, no evidence of cancer outside the prostate capsule.

 

Cathether removed one week later:  11/12/09.  No incontinence.  Stopped pads after a few days.

 

Post Surgery PSA test:  scheduled early February.

Posted 1/1/2010 5:49 PM (GMT 0)
Horton,
Quality of lif issues seem to be very important to your decision. Have you investigated either Brachytherapy or IMRT? Surgery by far has the most severe side affects and cure rates are better or similar than surgery. I had both seeds and IMRT and have been potent from day one and have had no incontinence which is associated with surgery. Even investigate proton as it has the least side affects.
Unless you research all options you will never know that you are making the best decision.
JT
Posted 1/1/2010 6:35 PM (GMT 0)
Quality of life also includes longevity. A 46 year old man, may very well live long enough to need radiation in the future (knock on wood he will not). When all the dust settles, Hortonswho..do what's right for you (hubby I mean)! Good luck and hang in there.
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