I thought I was well-prepared for the outcome, but it was still hard to say those 3 words the first time.

The details:
From my 12 sample biopsy, I had 2 positive samples.
Here's the sample 'grid' of my PG:
GADJ
HBEK
ICFJ

sample D (right base) was 20% involved Gleason 3+3 = 6
sample I (left lateral apex) was 22% involved also Gleason 3+3 = 6
samples C (left apex) and L (right lateral apex) were 'suspicious'.

Uroscore predictions are:
77% likely organ confined (T1 or T2)
17% likely capsular penetration (T3a or T3b)
6% likely advanced (T3c, T4, N+ or M+)

My urologist said he does open radical prostatectomy - no one around here does laprascopic or robot. He said he does them on a Monday and I should be home on Wednesday. Surgeries usually last 2.5 hours. He said I was NOT a good candidate for nerve-sparing since both sides are involved. He has a lot of experience himself and his father was a well-known urologist in the area.
I asked if he suspected cancer when he saw my PG was 69.9cc and he said he was genuinely surprised - he thought I probably had a benign enlarged prostate and the size explained my PSA level.

Everything he gave me to read I've already seen on the 'net. I mentioned this board and that I'd done a lot of reading already - I told him I've already started Kegels - he seemed impressed.

He told my wife and me to take a week and think about it, but I"m going to call today and get the process started. He said he has patients give autologous bllod ( 1 unit per week for 3 weeks) and then have the surgery the 4th week. The only kicker is we have a beach vacation planned for mid-July and we'd like to still do that - maybe I can give the blood the 3 weeks before we go and have the surgery right after we get back.
The first people we told were my wife's favorite relatives, an aunt & uncle. Her aunt told me how 'blessed' I am - I've found a cancer that I shouldn't have been tested for yet at age 48 with no history or symptoms. I've been blessed with more opportunity for a cure than I would 'normally' have. She's such a positive person, and she's undergoing Hepatitis C treament herself.

I'm lucky to be surrounded with positive people - including my new community on this board.

Comments? Advice? Suggestions? Prayers? I'll take 'em all.

James, This is a tough time for you, but please take a little time to get more information. My advice is to first read Patrick Walsh's Guide to Surviving Prostate Cancer. Second, I would strongly recommend getting a second opinion regarding the decision about nerve sparing, preferably from a major urological center that specializes in nerve sparing RRP. You have the time to get this second opinion, because it is generally not recommended to have surgery within eight weeks of your biopsy. Baltimore is not that far from where you live, and if you make an appointment now, you could get an opinion from someone in the Johns Hopkins group. I'm not a urologist, but I find it a bit surprising that your doctor has already made the decision to remove both nerve bundles (in a relatively young man) before seeing the situation and before taking some frozen section samples during the operation.

james_wv:

glad you posted all your information.
my first advice is: run (do not walk), away from the urologist who wants to do the non-nerve sparing surgery on you!

I concur with All_Sevens - you need to go to a center where they specialize in nerve-sparing surgery - either open OR robotic. you are way too young to just have some one hack away at your prostate - just because they DONT KNOW HOW TO DO THE LATEST TECHNIQUES IN PROSTATE SURGERY.

I had the nerve-sparing robotic laparascopic surgery at NY Presbyterian/Cornell Brady Uro (Dr. Tewari). I'm 57, and my pre-op Gleason was 4+3 (considered pretty "up there"). Nevertheless, my post-op Gleason was reduced to 3+3 and there was no involvement in the lymph, seminal vesicles and margins. My cancer was totally contained within the prostate and had not reached the outer edges of the capsule. I have a good chance of regaining full continence & potency in due time. (My surgery was May 9th, 2005.)

I'm assuming you have health insurance, and I know that someone else in an earlier post suggested you go to Baltimore (not too far?!) to John's Hopkins to get a second opinion. Do so.

Other tests (offered by more advanced PCa centers) such as endo-rectal MRI's, color doppler, etc. can offer a better idea to the surgeons as to whether or not the carcinoma has impinged on the outer edges of the capsule. You need to get one or more of these done before you make the decision as to what kind of surgery you will have. Please move slowly and methodically. The decisions you make now will have an impact on your future.

Your vacation is important, I'm sure, but you need to get a handle on your PCa treatment options first and foremost.

Good luck and keep us posted here!

Ken in NY (also CA)

Amen to Ken!!

James, you and me....My GP thought "something's just a little different down there from last year" when I had last year's physical. My uro agreed and did a biopsy. He did six cores on each side. The different feeling side turned out to be all negative but I had a microscopic positive in one of the cores on the side that felt normal. Gleason 6 but no established grade since the cancer was not palpable. But for the very minimal unexplained swelling I could have gone 5 years before it got found.

Anyway, the bulk of my uro's business is this stuff and he hangs with the guys at Johns-Hopkins every chance he gets. His brother's on staff there. He did the nerve sparing job on me last Sept. and I have like 99% continence and better than fair erections that are steadily improving.

Forget the guy that wants to go in with the idea of butchering you. There's no reason to ever see him again. He is not competent. BTW, I don't think my uro ever mentioned the nerves would be harder to spare on the positive side. I wish I had read this earlier. I had my 9 month checkup yesterday and I could have asked about it. PSA still 0.0.

Hang in there, James. You can do this, we can help.


DB

Thanks guys for the info and encouragement.

At the VERY LEAST I'm going to talk to my urologist further and get a second opinion from another well-respected local uro.

On the malignant sample from the right base (location D in the grid in the first post of this thread) it says in red caps: PERINEURAL INVASION IS PRESENT. - so does that mean it's already determined that the nerves are involved?

My general questions would be - what specifically would prevent a surgeon from doing the nerve sparing technique?. Location? Both sides involved? Where are the nerves and where in relation to my positive sample sites - I haven't pinned that down yet.

Even if they think the cancer's in the area of the nerves on one side remember this, we have those nerves on both sides and it only takes one set for us to be able to function. If one side is lost that does not mean hope is, too. In my research, I don't recall reading anything about any sort of situation that would positively preclude the surgeon from trying to spare your nerves. There are probably some things that would increase or decrease the likehood of success, but to not even try, I don't think so.

Dan

James,

I can't agree more with everybody who've posted so far! Get at least a second and third if you need, opinion. I went through the same thing as you this past January, had the two positive samples, both on the edge like yours, same Gleason of 6, researched like crazy and went the robotic route and know that was the best decision for me. At least find a top rated uro doc like Ken and the others recommend. Heck. So you have to fly or drive somewhere far - It's your body and quality of life!

If you have insurance, most pay for the robotic procedure as it is not considered experimental. There are docs who've done in excess of 1200 procedures on guys of all ages.

The Bottom line -

1. PC is a very slow growing cancer.
2. Don't cancel your-much-looked-forward-to beach vacation yet.
3. This is the most stressful period right now when you are starting the research and deciding on the procedure. When that's done, your mind, along with all other family members' will be at ease.
4. Keep asking those great questions, because that's how we all got through this ordeal!
5. Keep us posted on your progress.
6. We care! :wave:

There definitely are cases where the nerve bundles on one or both sides cannot be saved, but, if you want to give yourself every opportunity to retain some erectile function, it is important to get a second opinion from a surgeon who has done many nerve sparing procedures and who keeps statistics on the results for cancer control, continence, and potency. Go with a urologist who has a very good batting average. Also, good urological surgeons generally have an excellent pathologist available who can give them feedback during the operation. During my operation, there was some question about sparing the nerves on one side, so the doctor followed Dr. Patrick Walsh's advise, and had the pathologist do some frozen section analysis on tissue adjacent to the suspect nerve bundle. Based on this analysis, he was able to spare those nerves. Walsh does not recommend going with one opinion, especially when it appears that a decision has been made about nerve sparing before all available information has been gathered. What takes place in the operating room is a vital part of the information gathering process.

I know what happens as a wife when you hear those three words You have cancer. My husband and I went thru this in October this past year, I thought that I was going to throw up right there in the doctors office. After we left the doctors office in the car ride home we were both pretty quite then I spoke up and said WE CAN DO THIS !! Then we got prepared with the blood donations and the pretest my husbnad wanted until March to have his operation and he had a lupron shot to carry him thru until the surgery. Let your family and friends help you thru this time, we could not believe how much support we got from family and most of all the men my husband worked with. My husband and I will be married 32 years this year and some of them have been rough and some have been great and now things are getting back to normal you look at things alot differant the little thing don't matter so mcuh and the big things are looked at as the best things in our lives ( our granddaughters preschool graduation ...the trips to the zoo and the picnics in the park with the granddaughters ) used to be work now it is looked at like the best times of our lives. I will pray for you and your family take that long planned vacation and enjoy yourself with your family I am sorry I am going on but I hope some words from a wife who has gone thru this with her husband knowing you can do this too Take care and stay safe geifer :angel:

James, I am sorry the news was bad, But from a wives side of the story. I wish we would have gone for the second option. We went though the radiation 3 years ago,(gleason9), We have not been physcisl sence. Please go for the second option.

James wv:
I think you can tell from the number and the overwhelming response you have received in less than 48 hours that the consensus is for you to get that valuable 2nd opinion and get it before you commit to your local uro. I am assuming that you live in West Virginia which puts you within a reasonable distance of both John Hopkins (Dr. Walsh's team) in Baltimore, the Fairfax Cancer Center in Northern Virginia (daVinci robot), or even the University of Virginia (also the robot).

I too was told by a very well respected Oncologist/Radiologist and two pathologists that I had capsule penetration and my scores both Gleason and PSA were the same or higher than yours. I elected to have the daVinci Robotic surgery despite their gloom & doom diagnosis, based on a 2nd & 3rd opinion, my own research and study of the Partin tables. I had the surgery on May 16th and the final results were NO capsule penetration and negative surgical margins --- man am I glad I left my first Uro and Radiologist and went with a SPECIALIST who does 5-7 robotic procedures per week. I have both nerve bundles intact and am still recovering but the cancer beast is dead and I have feelings beginning to return slowly but surely.

Given the info you gave us, you have lots of time for that vacation and to do as much research as most of the posters and writers here have done. I agree 150% with those who are advising you to run from that urologist who is so quick to say "nerve sparring" surgery is out. You owe it to yourself, your wife and family to not only go for the treatment that gives you the absolute best chance of survival, but also the one that will leave you with a high probability for a high quality of life as well. Know that we have all been where you are now and that there is plenty of hope and great promise in the future. If you haven't already done so, please check out all the valuable information guys and gals shared with me in a thread I started back when I was originally diagnosed. Here is the title ----> Surgery scheduled for May 16th - scarred but resigned .

We will all keep you in our thoughts, and prayers/meditations as you begin your journey down this well traveled road. Be certain to find a doctor who specializes in prostate cancer and it's various treatments. Best wishes to you James!

Thom in VA (GR8HARE)

Hi James. Very sorry your news wasn't good. But please do make the step of calling a major prostate cancer center to set up a consultation. I went through a similar experience with my local uro, who wanted to perform the surgery and even provided a written document making the case for going with local treatment. But I just wasn't satisfied with his 10 or 20 RRPs per year vs. over 200 per surgeon at the "centers of excellence." My GP/Internist has also been very supportive of going to the experts for this. I think most of us on the board are not comfortable with answering your question concerning "perineural involvement," but that is all the more reason to get an expert opinion. As usually seems to be the case, your report is somewhat contradictory, since you show such a high likliehood of being "organ contained," yet have the reference to perineural involvement. The main message is to take the slightly harder road of talking to another doc, and making sure he is a real expert on your disease -- that means at a major center like Johns Hopkins or UVA. By the way, with encouragement from my doc at Hopkins, I went ahead with a long-planned golf trip to Ireland with my buddies after my diagnosis. He also told me he typically did not suggest autologous blood donations because he almost never needs to give blood to his patients. Anyway, I hope you will pursue as many qualified opinions as it takes to get your treatment plan clear in your mind. You definitely want to get the cancer out as a first priority, but you don't necessarily have to sacrifice your quality of life to do it. Good luck, and keep us posted on your progress.

I have a suggestion that you may want to see another doctor to get second opinion. Here is my experience. When my uro told me that I got cancer because the biopsy report indicated there is one cancer ( Geason score 3+3 ) out of 12 samples. Then I went to see another uro to schedule the radical prostatectomy, who then requested his pathologist to review my biopsy slides and then, he (my second doctor) came back to me that I had no cancer that is shocking to me. It's completely discrepant from my first doctor. My uro said it happened sometimes. Unbelieveablely, they just cancelled the surgery just 3 days ago before the planned surgery. Who should I believe ? Well. I am inclined to believe the second one who is doctor of UCSF. I plan to have another biopsy next 3 months at UCSF.

Good luck