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Old 07-16-2007, 05:33 PM   #1
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Husband Just Diagnosed: Questions, Questions

Hello. After 3 biopsies spaced at 3 months apart, we finally got a conclusive diagnosis of cancer. Gleason Grade 3, Score 6, 1mm of tumor line, involving less than 5% of 1 of 6 cores. Also says "focal perineural invasion present."

What led to all these biopsies over the last 9 months was an original PSA of 2.6 and then repeated at 2.7, 3 months later. Each biopsy has shown high grade PIN and atypical cells (this is what sent us back for repeat biopsies). MOst of the atypia was in the left side and this is where the surgeon doubled his specimens on the last biopsy.

Because of his age, we have been led to believe that he will need to have the prostate removed and that no other treatment option will be possible to ensure the best life expectency potential. In the meantime, he is being scheduled for a pelvic MRI with coil and a whole body bone scan. This appears to be standard at our hospital -- University of Pennsylvania-- though I'm finding that not everyone necessarily has these tests prior to surgery.

My questions:

What is the significance of focal perineural invasion? Will this impact nerve sparing surgery or the success of it?

Are the pre-surgery tests standard for most prostate cancer patients?

Is it true that he is too young for brachytherapy or other non-surgical treatments?

My husband is really worried about the catheter following surgery. He had one after his last biopsy and was in enormous pain from it---Percoset didn't even help. His doc was not sympathetic unfortunately. As an aside, he got knocked out for his biopsies and had voiding problmes after he came to in recovery so they tried the catheter on the last biopsy. How have other men handled the catheter and associated discomfort?

Finally, any suggestions for DaVinci surgeons in the Philadelphia area? Dr. Lee is Penn's guy and we are also familiar with the surgeon at Fox Chase. Just curious if there are others we should be aware since the choice of surgeon is so important.

Thank you in advance for all the advice. We know we're for a long haul so greatly appreciate any and all support.

 
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Old 07-16-2007, 05:56 PM   #2
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Re: Husband Just Diagnosed: Questions, Questions

I had da Vinci surgery at Springfield Hospital. They offer a webcast of the procedure. You can see it by doing a web search of "Crozer Keystone Webcast Robotic Assisted Prostatectomy". This is the same team that did my procedure. My surgeon was...

DAVID B. SAMADI, M.D. - Chief, Division of Robotics and Minimal Invasive Surgery - Mount Sinai School of Medicine

The narrative through the entire webcast is pretty interesting. If you have any further questions let me know.


 
Old 07-16-2007, 07:09 PM   #3
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Re: Husband Just Diagnosed: Questions, Questions

Pelvic MRI with coil is being done now at most of the larger academic centers, although I do not believe that it is considered the standard of care yet. Bone scan is unusual considering his PSA is so low, but it can't do any harm. I do not believe that focal perineural invasion would impact upon the performance of nerve sparing prostatectomy. As you probably know, prostate cancer treatment is controversial and there are alternative, effective treatments other than surgery...including no treatment (expectant management) in some select cases. You do not mention your husband's age.

 
Old 07-16-2007, 09:32 PM   #4
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Re: Husband Just Diagnosed: Questions, Questions

Mediamom,

Regarding the catheter, I think it is unusual for it to cause excruciating pain. Most guys describe the experience as irritating or uncomfortable or awkward. When a patient is experiencing great pain, there is probably some issue that needs to be addressed, like bladder spasms, improper placement of the Foley balloon, or allergic reaction. The fact that his doctor did not take the problem seriously made the situation worse. It's probably time to ditch that doctor.

Regarding the selection of a surgeon, the most important factor is their outcome statistics. Some surgeons don't even keep rigorous records on outcomes. They are usually the ones who just pull figures out of the air when you ask them about outcomes predictions. They really don't want to know their overall statistics.

This is a tricky operation-- the prostate is located right at a main intersection for urinary and sexual function. You obviously want sombody who has lots of experience and good outcomes. To me, the order of importance for outcome stats are:

1) Percentage of patients who survive the surgery-- should be 99.9% or greater.

2) Percentage of patients who have negative surgical margins. For someone with your husband's PSA and Gleason rating, this should be a very high percentage.

3) Percentage of patients who are continent within six months of surgery. National average is about 80%, but the excellent doctors are in the 90% to 95% range. These are generally doctors who take great pains to spare as much of the bladder neck as possible, even taking pathology samples during the operation, as opposed to just cutting all patients in about the same place for every operation.

4) Percentage of patients who have regained natural potency within two years of surgery. Some figures, such as a V.A. study and another study done by nurses, put the national average at a dismal 20%, but the excellent doctors can have figures as high as 80% for double nerve sparing and 60% for single nerve sparing.

By the way, I also had a small focus of perineural invasion, and it did not preclude sparing the nerves.

 
Old 07-17-2007, 05:11 AM   #5
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Re: Husband Just Diagnosed: Questions, Questions

Thank you all so much for the feedback. I should have mentioned my husband's age--he is only 46, so obviously this impacts treatment options as we have been told that surgery is really the most obvious choice considering his general life expectency. And...he wants it out. Even when he had high grade PIN and atypia (which is considered more serious than PIN, he said he knew he was a "timebomb" and it was just a matter of when they would finally find the cancer. So frankly, he just wanted it removed. This may sound nuts but it's how my husband thinks. The idea of anything cancerous or potentially cancerous in him was not acceptable. So he would never be a candidate for watchful waitng--even if the docs recommended (which they wouldn't I"m sure). I'm torn about doctors at this stage. Although our current doc is not warm and fuzzy by any means, seems he knows his stuff and he's at Penn, which is so highly ranked. Plus he wouldn't do the procedure. We have not even met that person yet. I did watch the webcast at Springfield Hospital but Dr. Samadi was just visiting there. My husband really wants the DaVinci method based on everything he's read and the surgeon at Penn has done over 1000. I know we still need the next round of tests so it's soon to make the decision on the surgeon but not too soon to research. I appreciate hearing from locals with insight on Bryn Mawr Hospital and on Crozer/Springfield. Just hearing from others is comforting.

On one last thing. He has not had a PSA test for about 9 months. His doc said once the biopsy process started, he felt that was the gold standard and the PSA was no longer relevant. He said it did the trick to screen his and get him in for the biopsy but doesn't seem he'll do another PSA (perhaps before surgery and we just don't know yet?).

 
Old 07-17-2007, 05:44 AM   #6
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Re: Husband Just Diagnosed: Questions, Questions

My pathology report following surgery indicated perineural invasion was present. This was of great concern until discussed with the surgeon who stated that he would be concerned if he read this, but it was simply a vocabulary approach.
When surgeons talk about PI, after surgery, they are talking about the cancer having moved outside the prostate. With biopsies, PI refers to the observation there is cancer inside the prostate. Whether it has spread beyond that point is determined at or aftr surgery, as I understand it.

 
Old 07-17-2007, 12:24 PM   #7
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Re: Husband Just Diagnosed: Questions, Questions

Mediamom: Given how young your husband is, surgery is probably the best option. This is from someone who had seeds implanted (brachytherapy). Another factor to consider is his feeling that "I just want it out". Given that, his recovery will be a lot better if he has the surgery to remove the gland. I too am surprised at the problems he had with the catheter. It could have been bladder spasms, as someone suggested, but another factor could be psychological. That is not to trivialize the real pain he experienced. But when we anticipate pain, it is more likely to occur, as a result of tensing muscles etc. I suggest a mild tranquilizer - talk to your doc about this. When I say "your doc", I mean the one who will (hopefully) oversee his recovery. Surgeons are notorious for being overly focused on the mechanical details of the surgery (which is good) but not very good at patient comfort and anxiety issues. Good luck to the both of you but given his "stats", you probably won't need it!

 
Old 07-17-2007, 03:20 PM   #8
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Re: Husband Just Diagnosed: Questions, Questions

Quote:
Originally Posted by my2cents2 View Post
Mediamom: Given how young your husband is, surgery is probably the best option. This is from someone who had seeds implanted (brachytherapy). Another factor to consider is his feeling that "I just want it out". Given that, his recovery will be a lot better if he has the surgery to remove the gland. I too am surprised at the problems he had with the catheter. It could have been bladder spasms, as someone suggested, but another factor could be psychological. That is not to trivialize the real pain he experienced. But when we anticipate pain, it is more likely to occur, as a result of tensing muscles etc. I suggest a mild tranquilizer - talk to your doc about this. When I say "your doc", I mean the one who will (hopefully) oversee his recovery. Surgeons are notorious for being overly focused on the mechanical details of the surgery (which is good) but not very good at patient comfort and anxiety issues. Good luck to the both of you but given his "stats", you probably won't need it!
Could not have said it better myself!

 
Old 07-18-2007, 05:51 PM   #9
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Re: Husband Just Diagnosed: Questions, Questions

I agree that age 46 is far too young to consider anything other than the surgery option. The stats on Brachytherapy or External Beam Radiation don't extend much beyond ten years and there's questions of validity in comparing with surgery stats since there's no standardization in patient selection between the various procedures by institution. Some institutions avoid higher risk cases for surgery or radiation while others welcome them. Also surgery stats have to distinguish between primary prostatectomy and salvage prostatectomy which can be done after radiation fails and cancer recurs.
Your husband sounds like an excellant candidate for surgery and a surgeon who has performed over 1,000 robotic RPP's should have sufficient experience and expertise. Its important to remember that only surgery has the potential to completely cure your husband of all cancer while the other primary local treatments can only control the cancer at best. Also with surgery you have the benefit of the post-surgical pathology studies to know for certain whether all cancer has been cleared and and there was no invasion of regional lymph nodes. With radiation , seeds or external beam, you have only
post treatment PSA's to measure treatment success or failure and the only remaining option if radiation fails is salvage surgery. If primary surgery fails radiation is still a secondary option with a greater chance of long term control than when salvage surgery is perormed after primary radiation failure.

 
Old 07-19-2007, 10:25 AM   #10
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Re: Husband Just Diagnosed: Questions, Questions

Thank you. Our thoughts exactly. My husband is scheduled for his MRI and bone scan next Tuesday and we meet with Dr. Lee (the DaVinci surgeon) on Friday for a consult. Our hope is to even get on the calendar and get scheduled.

 
Old 07-19-2007, 12:32 PM   #11
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Re: Husband Just Diagnosed: Questions, Questions

My situation is similar to your husbands, My Dr. ordered a psa at a general physical in Jan of this year, it came back 8.5, we did a round of antibiotics and repeated to a 7.2, he referred me to a urologist who performed a biopsy confirming cancer. The urologist orderd the same tests as for your husband, pelvic CT and radionucleide bone scan both negative. The reason your urologist suspended psa upon embarking on the repeated biopsies is that biopsy causes elevated psa for a period which can exceed one month post biopsy. I am scheduled for radical prostatectomy with Da Vinci on July, 30. I am 49 and believe that surgery is the only responsible course of treatment given that we believe the cancer to be completely confined to the prostate.

Best wishes to you and your husband, there are fine doctors and hospitals in your area.

Scott

 
Old 07-19-2007, 02:46 PM   #12
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Re: Husband Just Diagnosed: Questions, Questions

Hey Scott;

Best wishes on a completely successful surgery and post-op journey. All my best! I have ten years on you and I did fine. I had da Vinci LRP in Jan 2007. Just a speed bump, my friend! No big deal. I'm betting the house, you'll do fine too!

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Last edited by able5; 07-19-2007 at 02:49 PM.

 
Old 07-19-2007, 04:45 PM   #13
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Re: Husband Just Diagnosed: Questions, Questions

I want to reply to the statement that surgery is the only cure. I would suggest that no one can define what a "cure" is, when it comes to cancer. There was a clinical study where healthy men between 25 and 45 with no symptoms and a low, stabel PSA underwent voluntary biopsies for PC. As I remember, there were 20% who had cancer cells detected. What that means to me is that cancer cellsa re probably present most of the time and our immune systems are able to fight it off. Then we get older, the immune system weakens and maybe some external factor sets it off. So, if the cancer is early stage, many of the alternative treatments to surgery keep it at bay till we die of something else. Is that a cure? I would think so. So, while I agree that surgery is the best option here, I would argue that it is not the only "cure".

 
Old 07-19-2007, 05:04 PM   #14
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Re: Husband Just Diagnosed: Questions, Questions

Quote:
Originally Posted by my2cents2 View Post
I want to reply to the statement that surgery is the only cure. I would suggest that no one can define what a "cure" is, when it comes to cancer. There was a clinical study where healthy men between 25 and 45 with no symptoms and a low, stabel PSA underwent voluntary biopsies for PC. As I remember, there were 20% who had cancer cells detected. What that means to me is that cancer cellsa re probably present most of the time and our immune systems are able to fight it off. Then we get older, the immune system weakens and maybe some external factor sets it off. So, if the cancer is early stage, many of the alternative treatments to surgery keep it at bay till we die of something else. Is that a cure? I would think so. So, while I agree that surgery is the best option here, I would argue that it is not the only "cure".
Interesting comments. I took it a bit further and substituted each time you used the word "cure" with the word "treatment". With that substitution, your post takes on an interesting spin. I think I read somewhere else on this forum that, "There is no cure for cancer, just treatments." I believe the dialog was about what exactly defines a "cure" with regard to cancer and how can the disease return if it has been cured? The discussion generated quite a stir! Any thoughts?
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Old 07-19-2007, 08:24 PM   #15
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Re: Husband Just Diagnosed: Questions, Questions

Quote:
Originally Posted by able5 View Post
Hey Scott;

Best wishes on a completely successful surgery and post-op journey. All my best! I have ten years on you and I did fine. I had da Vinci LRP in Jan 2007. Just a speed bump, my friend! No big deal. I'm betting the house, you'll do fine too!

Nice post Able My husbands surgery is this Monday. Reading this made me feel better during such an anxious time. Thank you!

 
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