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New to Forum - need some advice on nerve bundle sparing

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Posted 8/29/2007 6:30 AM (GMT 0)

Based on my statistics, I am trying to remain positive with this recent diagnosis. I am heavily leaning toward robotic surgery. I had a consultation with my urologist today, and I was troubled by a couple of things he said:

1) My urologist said that he only goes into surgery with a "game plan" as to exactly which nerve bundles are spared. Based on my research, I thought most surgeons would wait to make the call once they can see the extent, if any, of progression outside of the prostate capsule.

2) My single positive biopsy core is on the lower corner of the prostate. The urologist seemed to indicate that this would possibly require the nerve bundle on that side to be removed. I find this puzzling, since many of the biopsy sites would be around the perimeter, and that the nerves seem to extend all over the backside of the prostate, making any biopsy site no better or worse for determining whether nerves would be spared. I have not read anything yet that indicates a surgeon would consider the biopsy location in the prognosis. Odds are, based on Partin tables, that my cancer is contained, regardless of the positive biopsy site. I am hoping that both nerve bundles can eventually be spared.

Am I being too optimistic to expect the sparing of both nerve bundles, or is my urologist being overly conservative? Thanks for your opinion in advance.

Posted 8/29/2007 7:10 AM (GMT 0)

Hi CaPCA,

Welcome to a great forum!  I'm sorry you had a reason to join this forum, but this is a great place for information.   My doctor removed the nerve bundle on the side of the prostate where the tumor was located and saved the bundle on the other side.

You cannot "see" cancer during surgery unless it has progressed quite a bit.  So surgeons usually decide which bundle to save or not based on the biopsy results, hoping that the biopsy was accurate.  Also, if you have more than moderately aggressive cancer, Gleason 7 and above, they sometimes decide to remove both nerve bundles as a precaution.

Hang in there and keep asking these good questions.

All the best,

Idaho

Posted 8/29/2007 12:42 PM (GMT 0)

Your priority should  be to find a top surgeon you have confidence in.

That aspect is also more important that the method used, so don't be overly worried about robotic v open surgery.

Posted 8/29/2007 1:23 PM (GMT 0)
In the asking of the question that you pose to the forum you also are providing the answer. You are asking the forum members to provide a second opinion. You have doubts about what your urologist is telling you so you need to a second opinion from another urologist.

Tamu
Posted 8/29/2007 2:16 PM (GMT 0)

Thanks for the advice. My urologist said that only one nerve bundle was required and that he knew of no long-term study as to one vs. two bundles. I have briefly uncovered some evidence that, at the very least, recovery of urinary and erectile functions is quicker with two nerve bundles. Is one vs. two important?

Posted 8/29/2007 2:20 PM (GMT 0)
Based on my experience, I think you have every reason to be optimistic. I also had a Gleason of 6, with one positive core in the apex, stage T1c -- almost identical to you. My surgeon told me pre-op I was a good candidate for nerve sparing and, in fact, he was able to save both nerve bundles during the da vinci procedure. He commented afterward that the nerves were in very good shape. I agree that your comments suggest you don't have complete confidence in your current dr. With an initial dx like yours, I don't think there's any rush. I'd get a second opinion and go with a different surgeon if you don't have complete faith in your current one. The key is making sure your dr has a lot of experience. Mine does 3-4 surgeries a week and has done well over 200 da vinci's. Good luck and have hope.

puget
Posted 8/29/2007 2:30 PM (GMT 0)

Thanks. I never expected to use this urologist for surgery, although he is local and has a good reputation. I will be contacting possible surgeons/hospitals shortly. I admit I am a bit hung up on this nerve bundle issue right now. Interestingly, the Partin Tables, as I understand it, give a prediction as to any possible spread based on pre-surgical measurements. The location of the positive biopsy doesn't seem to enter into the tables.

Posted 8/29/2007 2:42 PM (GMT 0)

Hi CaPCA,
 
As far as continence is concerned, I just had one nerve bundle saved and continence is coming along quite nicely.  I am down to one pad per day at work after 28 days.  Some guys do better, some worse.  I believe continence has more to do with getting your pelvic floor back into shape by doing the Kegel exercises.

Perhaps saving both of the bundles is more of a concern for ED, but like others have said, I would find a surgeon that you trust (not one that will just tell you what you want to hear) and consider his/her recommendation.
 
You are the only one who can trade off concerns about ED against your longevity. :-)

I'm sure you'll do fine.

Idaho

Posted 8/29/2007 2:57 PM (GMT 0)
Hello CaPCA,

May I assume you are near a big city in California? If that is the case all the more reason to search out the most experienced surgeon possible. Even if you have to fly to get to the best doctor; you should do so. My surgeon had performed 1000+ daVinci procedures before mine. Very reassuring.

Your numbers look like an early diagnosis, but if you're like me you'll want to get the PCa out as soon as possible. So good luck with your search, and keep asking questions.

Glen
Posted 8/29/2007 3:21 PM (GMT 0)
Thank you everyone for reading my posts and taking time out of your busy day to respond. Your responses mean a tremendous amount to me. I hope that someday I can give back by sharing my personal journey.

I will most likely go out-of-state (California) to do the surgery. Patel and Menon are on the top of my list for robotic surgery; Walsh if I were to go the retropubic route. I have a relative that is scheduled for surgery with Patel in October. He has three friends of various ages that have been recovering "quickly" after surgery with Patel. Patel sounds like he is very into the "quality of life" thing, although I haven't spoken with him yet. My father had the nerve-sparing surgery with Walsh a long time ago when the technique was in its infancy and had very good results. However, it appears that robotic surgery has a slight edge over retropubic, assuming that the surgeon is very experienced.

Posted 8/29/2007 4:20 PM (GMT 0)
There is a facility near Pasadena that you might want to consider. Patel and Menon are truly great, but so are Kawachi and Wilson at the City of Hope. This procedure is very common and there are alot of great surgeons. Idaho has sage advice when stating that 1000+ surgeries is assuring. Quite frankly, being close to home and family was good for me as well to get through the surgery. I live in Vegas but my family is in Laguna and there about. I stayed down there for 13 days. It was certainly worth leaving Nevada as the state has grown quickly in population but not as well for medical care. We did just open a cancer center here that recruited one of the top PCa oncologists in the world. But they don't do surgeries. We had two Governors in Nevada with PCa. Both went to out of state for their surgeries. Well that pretty much told me to travel. But how far. After careful research, Peter Carroll at USF, and Dr. Wilson were my finalists. I chose Wilson because of his schedule, and because of his reputation. His location was a plus. You will find many well qualified surgeons in California. Also consider USC, UCLA and UCI.

Tony
Posted 8/29/2007 4:59 PM (GMT 0)

CaPCA,

 

I had my nerves on the one side removed.  PSA 4.3, Gleason 4+4 on the one side, age 57.  And he told me based on my Gleason score they would most likely take out the nerves on the one side.

 

To my surprise, my control and feelings I have exceeded my expectations.  It has been three weeks since my operation and I plan to go pack to work next week.  I have a small drip every other day.  And, I am still wearing boxers.  So, saying you will lose some nerves is not that bad as long as they do not take all of them.

 

Just make sure you doctor has done at least a 100 of the robotic procedures.  Or, find another urologist.

 

Hang in there and you will get through it.  You will be in my prayers.

 

Posted 8/29/2007 8:25 PM (GMT 0)
Great advice by those above. You have at least two months from biopsy to surgery as the surgeon wants time for the inflammation to reside. Sometimes taking nerves or even damaging them can be determiined by the size of the prostate. Certainly a prostate of only 45 or 50 grams is not going to crowd the nerves as a prostate of 120 or 130 grams. To my knowledge when the prostate is enlarged it makes for tighter quarters in which the surgeon can work. A low Gleason score is certainlly in your favor as most likely the cancer has not escaped the capsule into other areas. You have plenty of time to read, search, and then decide how to proceed. Good decision come fromgood research. Good Bless, Uncle Dan
Posted 8/30/2007 12:44 AM (GMT 0)
Hi ~ CaPCA   & Loved Ones,                   W elcome to…                                       HealingWell                                                                         and                                     A    “ Special ”    Warm Welcome   to   You !       KNOWLEDGE     IS     POWER   ...   and   POWER conquers   fear     v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg   Click here for… Prostate Cancer Resources, Helpful Hints , and Topic Thread Links This link is also located at the top of the HealingWell”s Prostate Forum where topics (threads) are viewed   ;)
Posted 8/30/2007 12:46 AM (GMT 0)
Welcome CaPCA, We're glad you found "all of us"... In New Friendship ~ Lee & Buddy
Posted 8/30/2007 3:06 AM (GMT 0)
Hi CaPCA,

Welcome, we're glad you found us. From reading your post, I can tell that you did a lot of research and that's a good thing. The members here have already given you some great advice. I think that should get a few more opinions before you make your final decision about your treatment. Getting a highly experienced doctor is a crucial factor. I definitely don't think you're being optimistic about having both nerves spared. You have a low gleason and most likely an experienced doc with spare both nerves.

BTW, how were you diagnosed? I know that most docs don’t test the psa until age 50.

May you have a quick and speedy recovery.

A.



--------------------------------------------------------------------------------
Age:44
Diagnosed 08/21/07 with T1c cancer
1 of 12 biopsy cores positive; 10% tissue
Gleason score: 3+3=6
PSA level prior to biopsy: 4.3 (velocity < 0.4ng/ml)
Prior biopsy 3 years ago was negative
Prostate is ~24g
Posted 8/30/2007 4:44 AM (GMT 0)
To answers some questions in recent posts, my prostate is 24g in size, which should be beneficial. I started doing PSA testing just before turning 40. DREs have always been negative. My father had prostate cancer at age 52, detected by a DRE, and was cured with the radical retropubic prostatectomy. He claims to have recovered sexual function nicely, but has a bit of stress incontinence from time to time. Given my family history with my Dad, I started the PSA screenings at an early age. Even at age 40, my PSA was already 2.27. It is now 4.3. When I graph the the PSA data or use PSA velocity equations that attempt to average out fluctuations, my velocity is < 0.4ng/ml. Some recent studies imply this is velocity alone would give me a 98% chance of not having cancer, which hasn't helped me obviously. I'm still not sure that my PSA is related to the cancer, as I have from time to time had some prostatitis symptoms. In any event, it still led me to have biopsies which led to my diagnosis, so even though PSA is a flawed test, it did the job for me.

I spoke to my brother's father-in-law today, who is scheduled for surgery with Dr. Patel in Columbus. Seven of his friends have recently been treated for prostate cancer - 4 with the conventional retropubic approach and 3 with Dr. Patel and daVinci robotics. He says that the differences between these two groups is dramatic, although I don't know the real details. One friend felt so good that he was ready to go home only a few hours after the robotic surgery and said "What am I going to do here for the rest of the day?"

Posted 8/30/2007 12:04 PM (GMT 0)
I pretty much agree that daVinci is better than RRP. My robotic went very well. Though a great RRP guy can get it done well. Since my procedure at CoH in February, I have had no continance issues. For a while erections were good but HT has taken that away for now. Good move on getting tested young. I am the same age pretty much and wished I had started testing when you did. We don't have any history in the family so I was shocked to see such high numbers. Your PSA and Gleason along with your apparent early detection make you a fine candidate for a full recovery. Good Luck on you final decision on who you get this done by. You've got an A list of excellent surgeons in this thread. Pretty much all the ones I researched with over 1000 each.

Tony
Posted 8/30/2007 12:55 PM (GMT 0)
Although there are many fantastic accounts of early recoveries credited to the daVinci procedure, and I personally opted for that surgery; you have to be aware that each person's surgery and healing will be different. Don't get your expectations up too high. Realisticly the average stay is 2 days followed by a gradual recovery spaning several more weeks at least. The big plus factor for you is age, and that seems to speed the healing process significantly.

I hope you are one of the lucky 5%, and hit the ground running (just a figure of speech of coarse). Prepare yourself first by starting a Kegel regiment, and walking will help too.

Glen
Posted 9/1/2007 11:36 PM (GMT 0)

Potential for nerve sparing:

I was reading a report from a doctor who has very good results with nerve sparing. 

Prior to surgery, he has a reasonably good indication on potential for nerve sparing based on the diagnosis. Sparing of a nerve can become problematic when the Gleason Score is 4+3 or more, the PSA is over 10,  biopsies show a high % of cancer.

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