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Old 09-30-2010, 08:40 AM   #1
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Nerve Grafting

As some of you may already know, my husband, Irv has his surgery booked with Dr. Klotz from Sunnybrook on October 13th.

Dr. Klotz told us that, although he can't save the nerves on the right side (due to the extent of cancer on that side being 60%) but that his goal is to try and save the nerves on the left side. He talked about the possibility of the necessity for injections to achieve an erection if he is unable to save the nerves on both sides.

Last night, we attended a wonderful presentation put on by Prostate Cancer Canada Network. The topic was women and prostate cancer and four women spoke about the experiences they've had with their husbands.

The guest speaker was Leah Jamnicky who co-authored the book, "The Complete Canadian Guide to Prostate Cancer". She is an oncological nurse working at our major Toronto Cancer Hospital, Princess Margaret (PMH). Fortunately, at the end of the evening, Irv and I had the opportunity to speak with her and we were very impressed with her patience and understanding. I asked her about nerve grafting. She told us that Dr. Fleshner, who works out of PMH, does this type of procedure on his patients. She also gave us her business card should we need to speak with her in the future.

Since Irv just turned 51 years old, he's very young to have such high-risk cancer and he looks forward to kicking this cancer and living for many years. However, spending the rest of his years having to stick needles in his most sensitive area each time he wants to achieve an erection, which has restrictions with regards to how often this can be done, with the obvious consequences it would have on spontaneity for the rest of his life, is a big pill to swallow. Not only that, he risks ending up with a permanently crooked penis...not a nice thought for him.

If the nerves can't be spared on either side, that is what he faces. Our one small hope in that case would be the nerve grafting procedure. As wonderful a surgeon and human being that Dr. Klotz is, I'm doubtful that he performs this surgery on his patients. Irv tried to call him today to ask, but his office is closed until Monday.

He called Leah Jamnicky, who is going to speak with Dr. Fleshner to see if he would agree to see Irv next week to talk about his case and the possibility of nerve grafting, if necessary. She told Irv that it won't be necessary to go through his general practitioner as she will look into this for us. We feel so appreciative that she has stepped up to the plate for us.

At the end of all of this, I do have a question to throw out at the wonderful members of this forum. Have any of you had any experience with nerve grafting or heard of it's success rate?

We would really like to see if Dr. Klotz will agree to do this procedure if he can't save the nerves on either side. We happen to feel totally comfortable with him and take comfort in his incredible reputation worldwide. I'm sure Dr. Fleshner is expert in his field too, but we've already had a great experience with Dr. Klotz. We can't help but wonder if Dr. Fleshner's name is widely recognized as well. We also wonder what he would be like to deal with. Bedside manner is so important to us with this major surgery involved.

Feedback from any of you in this forum would be so appreciated at this time. This is a very big decision and, not only do we want to make the right choice, but we can't afford to waste any time here. Irv is one of the high-risk ones who doesn't have a lot of time to sit back and think about it.

Looking forward to your responses.

Regards, Rhonda

 
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Old 09-30-2010, 01:41 PM   #2
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Re: Nerve Grafting

Hi Rhonda,

You can put your mind at ease, regading Dr. Klotz. I just checked PubMed with this search string: " prostatectomy AND nerve-grafting AND klotz l [au] " and got 3 hits. I did the equivalent string for Dr. Fleshner but got no hits.

I hope you get some responses from those who have actually had this procedure.

Jim


 
Old 09-30-2010, 03:46 PM   #3
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Re: Nerve Grafting

Hi Jim:

Go back and do a search with Fleshner and prostate and nerve and look at the second study.

It gets a little complicated. Leah got Irv an appointment with Dr. Fleshner on October 12th, just one day before his scheduled surgery. Talk about being under the gun!!!

Anyway, Irv will contact Dr. Klotz's office on Monday, but I'm not sure how we are going to go about this situation if Dr. Klotz doesn't perform the nerve grafting. I know he's done studies, I had already seen the one that appears in pubmed but I don't know if he actually practices it.

This is truly an awkward position to be in, isn't it? Got any suggestions?

 
Old 09-30-2010, 04:37 PM   #4
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Re: Nerve Grafting

I looked at the abstracts, and I'm betting that Dr. Klotz has done the graft procedure a number of times himself. However, Dr. Fleshner may be more familiar with it. It also appears that there's a fair degree of uncertainty. At least it's an option.

Take care,

Jim

 
Old 09-30-2010, 10:17 PM   #5
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Re: Nerve Grafting

I know that nerve grafting would not offer guaranteed success, but I would, at very least, know that we tried everything that we could.

 
Old 10-05-2010, 09:41 AM   #6
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Re: Nerve Grafting

Here's an update. Dr. Fleshner can see Irv on October 12th which is only a day before his scheduled surgery. This week he is unavailable due to the fact that he has surgeries all week.

It has been confirmed by Dr. Klotz's secretary that Dr. Klotz no longer does nerve grafting because "it doesn't work".

Apparently, I've heard that Dr. Fleshner has done about 100 surgeries with nerve grafting.

So, now Irv has a choice to make. He feels, being only 51 years old, that he should give himself every opportunity towards as normal a life as possible after surgery. He wants to wait and see Dr. Fleshner. This means that he will have to cancel his surgery with Dr. Klotz.

It's a tough call. The surgery with Dr. Fleshner may not happen until the end of November. I'm planning on asking about hormone therapy to keep the cancer in check while waiting. Of course, being high risk, we're both afraid of spread.

Irv will make his final decision this evening after discussing it with the members of the support group he will be attending this evening. The women's group is also meeting tonight and I will get the women's perspective on this.

In the meantime, it would be good to hear from any of you who have heard anything about or experienced nerve grafting yourselves.

Rhonda

 
Old 10-05-2010, 07:19 PM   #7
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Re: Nerve Grafting

Quote:
Originally Posted by srhonda61 View Post
...It's a tough call. The surgery with Dr. Fleshner may not happen until the end of November. I'm planning on asking about hormone therapy to keep the cancer in check while waiting. Of course, being high risk, we're both afraid of spread.

Irv will make his final decision this evening after discussing it with the members of the support group he will be attending this evening. The women's group is also meeting tonight and I will get the women's perspective on this.

In the meantime, it would be good to hear from any of you who have heard anything about or experienced nerve grafting yourselves.

Rhonda
Hi Rhonda and Irv,

Just a couple of thoughts. Isn't the sural nerve from the calf muscle area? Is there any likely side effect on being able to stand comfortably after removal of the nerve? If so, would that be a problem when painting for a long stretch of time or being on ladders?

Regarding hormonal therapy to keep the cancer knocked down - it would work, but some surgeons feel it affects the surgical field and don't want that kind of pre-treatment medication. Other surgeons are comfortable with patients who have been on hormonal therapy. It would be wise to contact Dr. Klotz and Dr. Fleshner to see if they are comfortable with hormonal therapy up front. (Johns Hopkins was not comfortable with it when I requested surgery in early 2000. They would have rejected me because I had already been on blockade for a month by the time I called to try to schedule, but they rejected me first because of my case characteristics. I definitely did not feel wanted. )

Take care,

Jim

 
Old 10-05-2010, 08:17 PM   #8
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Re: Nerve Grafting

Hi Jim:

Somehow, we've heard that the nerve is taken from the thigh but, whatever the case may be, you raise a good point and this will definitely be something to discuss.

After tonight's support group, I'm feeling overwhelmed and confused. The women's meeting went well and I felt comfortable with our decision to wait for Dr. Fleshner.

Then, after the meetings were over, we stood in the hallway speaking with various people. That's when things took a downturn.

First, Irv was talking to a 52 year old man who has very aggressive prostate cancer and he thinks he's going to die. It's very sad.

Another older man was babbling on about his non-urgent cancer and it was driving us crazy after awhile.

The third man is the one that made me feel totally unsure and overwhelmed.
His Gleason was 6, PSA was 62 and all cores positive. He went to 14 doctors before making a decision. He told us his experience with Fleshner and it wasn't good but his is an unusual story as most people love him. Anyway, the final outcome was that he went to a doctor by the name of Dr. Morten (not sure of the spelling) who suggested very high intensity radiation, not surgery. That was a year ago and he is happy with it. But Irv heard that there is a chance of getting cancer from the radiation because it is such high intensity. But he is fine now....and I was told by one of the women that even with nerve sparing, a man may never get an erection again....and I was also told that if the man will need radiation after surgery, then the doctor won't do nerve grafting because the radiation will destroy it......

So, everything is seeming very confusing, suddenly....and Irv seems to be in not such a great mood after that.

 
Old 10-07-2010, 06:45 PM   #9
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Re: Nerve Grafting

Hi Rhonda and Irv, I am new to this forum having just started my unwelcome journey down this PC path. Yours was one of the first threads I looked at when I found this forum and I have been watching it on an almost daily basis but having nothing of value to add to what is being said I have not until now jumped in. I noticed that Irvs surgery is scheduled for next week on the 13th that will be Thursday 14th over here. I am sure you are both very anxious with this fast approaching date as I know I am with still six weeks to go, all I can say to you is thanks for sharing your experiance and I will be thinking of you both on that day, I hope hope the outcomes for you will be well above your expectations.
Merv

 
Old 10-25-2010, 12:15 PM   #10
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Re: Nerve Grafting

Hi Merv:

Sorry I haven't replied quickly. I haven't been on this forum as of late. However, we just got confirmation of Irv's surgery day. He'll be having his radical prostatectomy next Thursday on November 4th.

The reason for the delay was because we switched to a doctor who will do the nerve grafting.

I can feel my anxiety and sadness building with our upcoming ordeal. I realize that this is just the beginning of our journey and it's going to be difficult. Yet I have to be strong for Irv.

Send positive thoughts our way.

Regards, Rhonda

 
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Old 10-25-2010, 04:01 PM   #11
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Re: Nerve Grafting

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Originally Posted by srhonda61 View Post
Hi Merv:

Sorry I haven't replied quickly. I haven't been on this forum as of late. However, we just got confirmation of Irv's surgery day. He'll be having his radical prostatectomy next Thursday on November 4th.

The reason for the delay was because we switched to a doctor who will do the nerve grafting.

I can feel my anxiety and sadness building with our upcoming ordeal. I realize that this is just the beginning of our journey and it's going to be difficult. Yet I have to be strong for Irv.

Send positive thoughts our way.

Regards, Rhonda
Hi Rhonda and Irv, I will be thinking of you on the day. I can certainly understand your anxiety as I have been feeling exactly the same way the last few weeks with my fast approaching surgical date however I have now elected to stay on AS for a while longer as i was not comfortable with the outcomes of surgery. My PC is not that advanced yet at Gleeson 6 and my psa last week came back at 4.03 down from just under 5.0 and I think I was doing the big panic in electing surgery at this point. I will now have another biospy and take a new look. Yours and Irvs story has opened my eyes to just how lucky I am to be able be able to make this choice it also gives me time to check out other options that I had not heard of until a few weeks ago when I joined this forum - best of luck.
Merv

 
Old 10-25-2010, 05:41 PM   #12
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Re: Nerve Grafting

Hi Rhonda and Irv,

Good luck to you both on November 4 and thereafter! May all go smoothly for you!

To ease the worries, there's a book by Mary Carolyn Cook Gervais that you might want to find - could be out of print. It's her very personal account of her journey with her husband through prostate cancer, entitled "In Sickness and in Health - Surviving Prostate Cancer Together," 2005. In my local library system it's available under 616.65G 2005. Her husband had surgery, and after that he needed some other treatment, but they definitely hung in there. If you like skiing, dogs, laughs and determination, you'll probably like the book. (They are from Colorado, but I wonder if her husband is related to Ricky Gervais, the British comedian who starred in Ghost Town, among other hits. (Tip: if you haven't seen Ghost Town, wait until after the surgery, maybe long enough after for the sutures to heal so laughter won't be a problem, and long enough so images of what the Ricky Gervais character - Dr. Bertram Pincas - went through in dealing with hospital administrators may echo your own experiences but seem funny with the passage of time.)

Seriously, you may be the only couple on this board involved with nerve grafting. Perhaps, if you both feel like sharing, you could pass on some thoughts on what that is like at a later date.

Take care,

Jim

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Old 10-27-2010, 12:12 AM   #13
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Re: Nerve Grafting

Thanks, Jim. I just ordered the book. I think it might come in handy. Irv is, so far, being such a trooper. I, on the other hand, feel secretly sad about having to say goodbye to our current reality...and it's very difficult at times.

 
Old 11-02-2010, 03:28 PM   #14
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Re: Nerve Grafting

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Originally Posted by srhonda61 View Post
Thanks, Jim. I just ordered the book. I think it might come in handy. Irv is, so far, being such a trooper. I, on the other hand, feel secretly sad about having to say goodbye to our current reality...and it's very difficult at times.
Hi Rhonda,

It's likely that most of us are not fond of dramatic changes in the lives we are leading, and a diagnosis of prostate cancer certainly is a big time alterer of our realities.

It's odd though. Many of us have found that the disease brings us to a profound appreciation of life, despite the loss of some of what we knew before.

I hope all goes well for you both and that you are able to keep your spirits up.

Take care,

Jim

 
Old 11-02-2010, 05:55 PM   #15
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Re: Nerve Grafting

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Originally Posted by IADT3since2000 View Post
Hi Rhonda,

It's likely that most of us are not fond of dramatic changes in the lives we are leading, and a diagnosis of prostate cancer certainly is a big time alterer of our realities.

It's odd though. Many of us have found that the disease brings us to a profound appreciation of life, despite the loss of some of what we knew before.

I hope all goes well for you both and that you are able to keep your spirits up.

Take care,

Jim
Jim I think you have beatifully said what we are all feeling for Irv and Rhonda. You truely have a way with words and they are surely a comfort for many on this site - thanks. All the best Irv on the 4th I will be thinking of you both - for the grace of God there go I.
Merv

 
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