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Treatment Options/Decisions

william1
Posts: 35
Joined: Nov 2005

Well I got the news today...it's P/C. I'm 53 and have no idea where to turn or what to do first.
My urologist said only one of the ten biopsies taken revealed cancer cells. He said since the Gleason score was 7 ( 3+4 ) and my PSA was 4.1, that he strongly recomended Radical Prostatectomy with nerve preservation if possible. My pelvic exam and bone scan were negative. He further stated since he only performed an average of six prostatectomys annually, mostly on older candidates, he would suggest I go to Emery in Atlanta, Georgia ( 250 miles away) for the most experienced surgeons. He also suggest I talk with a Radiation oncologist before I go to Atlanta to discuss before and after Radiation theropy options.
I would like to hear from anyone who had a Radical Prostatectomy at Emery. Any suggestions on the types of surgeries available would be helpful. Website address' on this subject needed.
Thanks, William

miketilley's picture
miketilley
Posts: 15
Joined: Mar 2004

Hi william
Do not forget you have the right to get a second opinion.With prostate cancer it is slow moving so do not rush your decission.I did and think I would have done some things different.I am not saying your doctor is wrong just take time to make the right decissions.
Mike

jweindel
Posts: 10
Joined: Jul 2004

Welcome to the club no one wants to join, William.

Mike is right, you have some time to research all your options and make a good informed decision. I would suggest that what you do first is some reading right away, and I recommend Patrick Walsh's Guide to Surviving Prostate Cancer, by Dr. Patrick Walsh of Johns Hopkins, for starters. There are others, as well.

One thing your doctor said that makes sense to me, if you decide on surgery (or any other type of primary treatment) get to someone who has a lot of experience with that treatment modality. If that's 250 miles away, so be it. It could make a big difference in the rest of your life.

I had a nerve-sparing radical retropubic prostatectomy a year and a half ago at age 62. I was dry (continent) 3 months after surgery. My PSA has been "undetectable" since (knock on wood). Still working on the impotency issue, but I am satisfied with my outcome so far. But I did look seriously at radiation as a primary treatment option. You need to make a decision that's right for you, and then move ahead without looking back.

Jerry

stuart
Posts: 88
Joined: Dec 2001

I agree with both Mike and Jerry...Learn as much as you can about prostate cancer... I went with radiation almost five years ago...I was 52 at the time...There are different forms of radiation ie external beam and seeds...In my case I had both...Recent studies indicate that long term results(10 years) are about the same whether you choose surgery or radiation...You might want to attend a Man to Man meeting...This is a group of men who have been diagnosed with prostate cancer...These meeting are usually held once a month at local hospitals in most cities...Check for a meeting in your area...I learned a lot and there is no fee

nodawgs's picture
nodawgs
Posts: 118
Joined: Mar 2001

I think a 2nd opinion and re-staging is definitely in order. It may be a distance problem, but M.D. Anderson-Houston originally pioneered two types of RPs: nerve transplant and nerve sparing. Their diagnostics are incredibly in-depth. At your relatively young age, I'd take this very seriously, and in doing so, opt for the top dog, none other than M.D. Anderson-Houston...the No. 1 in the nation and largest cancer treatment center in the world, including a facility in Madrid, Spain. Do a search on "best hospitals," then select "cancer" for a sub-search.

Unlike most cancer clinics, M.D. Anderson-Houston is a multitude of centers within a center, further sub-divided into subspecialties, specializing in your specific type of cancer.

Of course, after the surgical procedure (if needed), any follow-on monitoring can be done in your home town. Simply put, there is no higher level of expertise on the globe more qualified to recommend options, tailored specifically for your particular age, stage of disease, and level of aggressiveness, as indicated by biopsy. Most of their physicians are either physician/professors, physician/scientists, or physician/professor/scientists.

If you'd like, I can send you the most recent copy of M.D. Anderson's treatment guidelines on prostate cancer. It's a flow diagram of decision pathways covering all clinical possibilities, staging, and treatment options.

Just e-mail me at my CSN e-mail address and include a return e-mail address so I can send the PDF attachment. I cannot post my personal e-mail address, here due security and spam issues.

Best of luck on this,

"Nodawgs"

JimDSM
Posts: 8
Joined: Apr 2005

I generally hate to say "me too!" but I echo the other's responses. I think it's always good to consider a second opinion and other points of view. In January 2004 I was 58, PSA 8.5, CA in 8 of 12 cores and Gleason 8 (4+). The urologist recommended RP but said he wouldn't actually complete it if the lymph nodes were involved. He'd just send me directly to radiation and chemo. We talked to an oncologist as well. I, he, my primary care provider and my wife (ARNP) all felt uncomfortable with that plan. The oncologist got me a referral to Mayo in Rochester, MN (around 200 miles). The urologist there was adamant about RP regardless of spread - get rid of the source no matter what. Decided to follow their plan (which is getting increasing support across the profession) and have the surgery there. The pathology showed the lymph nodes were clear and so they didn't recommend any further treatment.

At 1-1/2 years post-surgery my my bone scan was clear and my PSA remains below detectable limits. I quit using pads around 2-3 months and manage about 98% control - only problem is when I've waited way too long then have some physical exertion (like standing up or bending over). ED is still not resolved but we feel that's a somewhat "minor" problem given the alternatives and other possible outcomes. As has been suggested, read and learn about the options and talk to other medical professionals before making your final decision. Since your urologist is hesitant to do the surgery, very definitely go where you'll find the most experienced surgeons. The nerve-sparing and replacement success is very dependent on the skill and lots of practice makes for better chances.

Jim in Des Moines

william1
Posts: 35
Joined: Nov 2005

Thank all of you for your comments. I talked with a Radiology oncologist Wednesday, his bias was obvious. I have an appointment at Emory in Atlanta, this will be a complete re-evaluation.(second opinion)
Are there any opinions on the Mayo Clinic in Jacksonville, Fl... I'd like to hear them. I'm interestded in the laroscopic surgery. I haven't located any doctors/hospitals in the south who offer this proceedure.
It's back to researching again. Thanks, william

kalar7856's picture
kalar7856
Posts: 35
Joined: Sep 2004

Hey William1,

Since we share similar diagnoses I thought I would share with you.

2 years ago at age 45 I was diagnosed with a Gleason rating of 6 and a PSA of 3.9.

After much research I was horrified to discover the terrible long term side effects of radition
on a younger candidate. Only for the elderly in my opinion.

I am terribly happy with the results of the new
radical nerve sparing procedure. You have every reason to believe that your margins are good and
this procedure utilizes that to the max. 99% of
all patients have immediate continence control
and I had normal sexual function after 6 months.

The key is the skill of the surgeon. Find someone who does nothing but this type of procedure. I researched and located Dr. John Burgers in Columbus Ohio who was on the team that developed the procedure.

One note on the laroscopic procedure. There can be issues related to bleeding during the procedure that can cause complications. With all the small "assist" incisions made total scar tissue is about the same. I opted for the straight forward approach. Techniques may have improved since my procedure for laroscopic.

Best Wishes
Ron

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

William,

I am a 4 1/2 yr survivor of conventional RP. Mine was performed at Vanderbilt Clinic in Nashville, I traveled 250 miles to get there. My manager also had his surgery there with excellent results. He did elect to have robotic surgery.

My results were "picture perfect" with full continence and restoration of sexual activity within 3 months. Life is now normal again.

Good luck,

Roger

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