RP decision to make...deliberately lose the nerves and be safe or keep and risk recurrence

I am new to this forum, stumbled across it in a desperate search for answers that I can believe, and can use some advice. I have conversed with two Urology Oncologists...the second one today and the news was very different from the first...or maybe it is just news that was not spoken previously.

I am 59, PSA 5.5, 12 of 12 cores positive. Partins 4+3. Bone scan clear. CT scan clear. Happily married. 2 children and 6 grandchildren...mother, sister, brother living. Lots to live for.

The suggested course of action, today, is to bite the bullet, skip efforts to save the nerves, and resign my self to ED for the rest of my life as the cancer is deemed aggressive and the probability of requiring subsequent radiation and hormonal therapy is high...resulting in a libido level so low that I won't care.

I am trying to find out if Surgeon 2 is just 'telling me like it is' (which I appreciate if that is the case) or if he is bring overly cautious. He has roughly 700 robotic RPs to his credit so there is considerable experience to draw on.

My questions for anyone with experience or similar conditions....

1. Is my cancer really that aggressive? No one has really said specifically. No one until today acted like this was a real emergency..wanting me in the OR next week.
2. Is my condition so advanced that I should be willing to give up any hope of avoiding ED and agree to deliberately remove the surrounding tissues due to the probability of 'microscopic extracapsular extension'. Included are the pelvic lymph nodes.
3. Given the stage 3 diagnosis what is the probability of recurrence? Todays consult indicated that my probability is 100% for recurrence.
4. How does everyone's spouse/SO deal with the ED?

I am desperate to hear some plain talk from anyone with similar experience. I will make my own decision but I have a very limited pool to draw on at the moment and I need to make some decisions quickly...it has been two months since the diagnosis and everyone is concerned.

Thanks!

Hi Mike,

Welcome to those forums, and sorry to see you with this disease.

Here is my personal experience:

First consultation - urologist with ~300 DaVinci - he said he will have to remove both nerve bundles as my cancer was pretty advanced

Second consultation - urologist with ~1000 DaVinci - he said he might have to remove the nerve bundles on one side, but would definitely save the other side.

Third consultation with Dr Walsh, who has done over 4000 open surgeries - he said he will most probably keep both nerve bundles, but ultimately will decide during the surgery. The open surgery gives him more "feel" for the extent of the cancer. At the end I went with Dr Walsh, he saved both bundles and I still had negative margins.

I think you should definitely look for a second opinion, hopefuly with an experienced surgeon that has done at least 1000 surgeries. If he still advises you to remove both nerve bundles, go for it you have so much to live for.

Mike,

You didn't mention the date of your biopsy. It's general practice to let the tissues heal from the biopsy procedure for 6 to 8 weeks before surgery. So you have at least that much time to research and get opinions. In my case, I was ready to go under before they were willing to take me.

DJ

Mike

You did not say if there is a family history which makes a big difference. I was diagnosed a year ago at your same age. Half of my cores were positive and the Gleasons were 8 & 9. My PSA went from 4.0 to 10 in a year. My dad was diagnosed and had PCA surgery at the age of 70.

My urologist did not consider me a candidate for robotic and he checked with the rest of his group practice which have performed over a 1,000 robotic surgeries. They all agreed that open was the best way to go. My scans were clear like yours. The surgery was a success but I did lose the left side nerve bundle.

My ED is lessening and I figure in another year, I will be back to normal. However, I LOVE the injections and plan on using them long after I'm healed. My libido never went away at any part during the surgery, healing, etc.

I'll echo what has been said earlier - get rid of the cancer.  In most cases, I think the surgeon should make the decision as he is doing the surgery based on what he finds when he gets in.  I suppose there are cases where they know going in that everything needs to come out - I'd definitely look for another opinion if the surgeon is saying this prior to surgery.  Trust everything will go great and look forward to hearing from you as you begin the healing process.  David

WOW....After being on this forum for almost three years, I am constantly amazed by the depth of caring and help that everyday people can provide.  Mike 59, like most of us you found this website on a general web search for prostate cancer.  What you have found (in my opinion) is the finest source for help, encouragment and information regarding prostate cancer.

You will get help. Not all of it is totally accurate, Not all of it directly usable by you, but you will not find a better place to base your decision making and to give you support.

Good luck...It looks to me like you will have a good future.  Maybe not the exact future that you planned, but staying alive sounds good to me.   

My father had a very similar diagnosis prior to surgery. Gleason 7. PSA 5.5 and clear CT, transrectal MRI and bone scan. The surgeon was able to save one nerve bundle, however, because of the post surgery path report, he needed salvage radiation and is on HT. He still has the hopes of intercourse once he has completed his two years of HT, however, who knows how that will work out. We are hoping for the best. Best of luck and my only advice, is surround yourself with people you trust and hold on to hope. Keep us posted!

Wow...I hadn't checked for responses in a couple days and I am overwhelmed by the number and sincerity...thank all of you so much for this.
I spent the last few days tracking down a very reputable surgeon in Boston at Mass General...so I have decided to take an earlier suggestion and travel to a 'big' city. He has just under 4000 surgeries, prefers 'open' verses robotic as he feels he has better options for making decisions as he goes. He is an early developer of using a hydro-dissection technique to separate the nerves from the prostate tissue and has an incredibly high success rate for balancing nerve sparing with cancer removal and keeping his patients alive and healthy. It became very obvious how important it is to chose a surgeon with a LOT of experience and whose philosophy aligns with mine. I expected experience to make a difference but, as another member clearly indicated above, the learning curve is steep and doesn't seem to level off indicating that there is no such thing as 'too much experience'. So...I have declined the surgeon here in Seattle and have arranged for surgery in mid June, probably with a single hormone treatement to keep things from getting worse until then.
I have spent a lot of time reading about the post-op issues and am trying to come to grips with this. I have had several near-death experiences in my life and have recovered fully from all them so this is particularly difficult to understand. I find hope in the comments of everyone, hear the desperation in the words of some as the '1 year' mark approaches for them. I am wondering where I will fall, what my numbers will be. Thank God..and I mean that...I have a very loving and devoted wife to help me through this. I have confided in my brother and sister, have not told my children, and, so far, have chosen to not tell my mother as this would devastate her. She is 82, already on a pacemaker, and is worried to death about my sister who is 'her mothers daugher' and has inherited her heart ailements. I am curious to hear how everyone dealt with their families and how they reacted...maybe there will be a nugget of inspiration in there for me.
Thanks everyone...
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Age 59 and very healthy otherwise.
Biopsy on 2/25/09: Left Base- Adenocarcinoma, 4+3, Left Mid- Adenocarcinoma 4+3, Left Apex- Tiny focus of Adenocarcinoma 3+3, Right Base- Adenocarcinoma 4+3, Right Mid- Adenocarcinoma 4+3, Right Apex- Adenocarcinoma 4+3
Bone SCAN/CT 3/10/2009: Both negative.

I have several friends, associates at work, and a brother-in-law who had their prostate removed more than 15 years ago. Armed with this knowledge, and keeping details to myself, I told others about it but in the context of it being no big deal. I took the side of hoping for the best, but personally and privately preparing for the worst. I think your attitude about how you present it to others has a great deal to do with their response. In reality it may be no big deal - just one of many barriers along the road of life. For the most part, the people on the forum have caught their disease and are receiving great treatments and most are cured or doing well. Why make it more dreary than it is - cross the more negative aspects of that bridge only if you have to. I have a spouse, 5 children, and 6 grandchildren - all of them took the situation optimistically and so should you. I would let them know in the context of it being routine - for it is for many of us men. I think you will find them very supportive - yes somewhat concerned, but optimistic if you are.