Please help- newly diagnosed with prostate cancer

Hi,

I am really glad I found this website. I really need help. My husband was diagnosed with prostate cancer last week. He is only 43 years old.  We are in disbelief.  My husband is still in shock and have not been sleeping well.  So I thought I would do some research for him.  I am so glad I found this site.  It is going to be a great support group for him.

My husband's urologist said that the best option for him was to have the robotic prostatecomy because he is so young. His urologist does not perform the robotic surgery and would have to refer us to some one else. 

We live in Southern California and I wanted to see if you guys can recommend any good doctors that performs the Davinci surgery in this area.  Thank you.

my husband's age=43

PSA-3.6

gleason score 3+3=6

1 needle out of 8 came back postive

tumor involves 5% of biopsy tissue

Hi Nini- Glad you found us. I know what you and your husband are going through, I am 5 mos out from my Robotic surgery. I was diagnosed at 51 and went with the robotic just to make sure that a full pathology could be done. I went with City of Hope and can recommend them highly. I went with Dr. Clayton Lau but there are many good ones on the team, Dr. Wilson is probably the best known. Take a deep breth, you have time to make an informed decision on your treatment. Pete  

The most important consideration is to find  the best surgeon available to you, not necessarily the method used.

A top surgeon will give you the best chance of a good outcome, regardless of whether open surgery or robotic is undertaken.

It's worth reading one of the good books on the subject of surgery by  Walsh or Scardino.

Hi NiNI427.

Sorry you have to be here but glad you found us. This forum has a great group of wonderful caring people on it. There are cancer surviviors, wives, sons and daughters and friends here to help answer your questions. Our moderators are top notch people who are genuine and keep this forum in great form. Let us know if you can help you in any way. As for myself, I had open surgery at Duke Hospital in May with little or no pain. It is now becoming a distant memory. Take care and keep us informed on your journey.

Mika

Sorry to hear of the diagnosis, but be grateful that it was apparently caught at an early stage. I have a very similar situation apparently. I am 44 and was diagnosed two months ago. I have robotic radical prostatectomy scheduled with Dr. Vipul Patel this Friday. I will be close to his 2000th procedure. I have been fighting a slowly rising PSA level for 4-5 years now, so the diagnosis wasn't a complete shock. My father had prostate cancer diagnosed at age 52. The odds are very much in your favor that this is a curable disease. Based on my research and age, I chose prostate removal due to the very high chance of retained erectile function (after a recovery time) and continency, as well as the "gold standard" for cure. I further refined my decision to robotic prostatectomy due to the quicker recovery and possibly better surgical margins, assuming a very experienced doctor with the robot. If you choose the prostatectomy route, either "open" or "robotic", experience of the surgeon is key. This is not an easy procedure, and the outcomes are strongly dependent on the skill of the surgeon. You should strive for getting the surgery from a "center of excellence" in prostate cancer and one that does a relatively high volume of procedures.

You will probably be doing a lot of research, and some of the resources already mentioned are very good. I have recently been using online "nomograms" at the following website to predict outcomes:

http://www.mskcc.org/mskcc/html/10088.cfm

You will find many diverse opinions among doctors and patients. Also keep in mind that prostate cancer therapies are big business, too. I have probably read too many articles and medical journals for my own good. Although there are a lot of well-intentioned folks, statistics taken out of context can be misleading. Please remember that your husband's young age puts him in a very small group (1-2%?) of men diagnosed, and there is very little data specifically on men under 50.

As others have mentioned, you do have time to determine the right course of action. It may not seem like it now (and often it doesn't to me, either) but this will most likely be something that you and your husband will eventually look back on as a proverbial "bump in the road" of life.

I was also 43 at surgery date. I had the open RRP. I had some complications after the surgery and am still dealing with severe incontenance. My erections are returning both on their own and with the use of Viagra. But as I keep telling myself the cancer is gone and all of my PSA's have been 0.00's I guess I should not complain.
I woudl suggest finding a Physical Therapist that uses Bio-Feedback to measure the pelvic floor muscles and start doing your Kegeals now. The therapist will make sure you are doing them right.
Just remember....you have to make the decision that is right for you and your family. All we can do is offer support and prayers.
Good Luck
KW

Hi Nini: Like many others here, I recommend City of Hope in Duarte, CA. They treated me -- and my wife -- very well through the surgery and beyond. Do your research and if DaVinci is your decision, be sure to check out the COH team.
Best to ya. You'll get through this.
Tom

Nini,

The recommendations for City of Hope, Dr. Michel, and Loma Linda are all excellent choices.
As you do your research (Do try to get a copy of Dr. Walsh's book!), you are blessed to have all of these excellent facilities to look into to find a physcian you can relate to and trust.

KW's suggestion about learning Kegal exercises will speed post-surgery recovery from any incontinence issues.

You two are so young, you should also read the threads by Swimom and others on recovering from erectile dysfunction after surgery.  These threads will help ease your anxiety about this aspect of recovery. 
These and other threads are indexed in the 2nd-thread-from-the-top-of-the-page under Helpful Hints.  Just scroll down to the second or third post and check out the topics and many personal journeys. 

(Doug's decison process is very well done!)

As you read you will find that most surgery patients do recover from incontinence at most by week 16 (some much much sooner and some much later) and most surgery patients (that work at it) do recover enough erectile function within one or two years (some much sooner, some later  - some with no medical intervention, some with injection therapy, etc.) - they recover enough erectile function (most studies suggest 90% of pre-surgery) for the years of relationship and life aggressive treatment can afford.

As a spouse, feel free to reach out to the many other spouses here that can help you with relational issues as your husband recovers from your treatment choice.

Your husband's (1 core / 5^%) biopsy was almost exactly the same as mine.  While your numbers suggest you have time to do research and shop for a physician/treatment facility,  don't take too long as my cancer was found in the post surgery biopsy to be touching the inside of the capsule.  A good surgeon might easily have a two month wating list!

You have found concerned and informed friends here where you can ask anything and express anything.

C^Cedar
ICTHUS!

Hi Nini,

I can't add much to what's already been said, but you have found what I consider to be  the best site in cyberspace for obtaining information. You can read a brief "Cliff's Notes" summary of my journey below.

Sounds like you guys have caught the PC in it's early stages, and prognosis is good. Take your time, gather the information, process it and make a decision and don't look back. Sorry I can't offer any information on a surgeon since I live in Florida, but in your search ask the surgeon as many questions as possible, e.g., number of surgeries, success of his patients with continence and erections, etc. etc. As others have mentioned, obtain a copy of Dr. Walsh's book. The most recent, updated version came out this year. It was extremely helpful in making a decision, and dealing with post surgery issues.

Good luck and keep checking back in with any questions. We're all here to help.

Jack

Thank you all for posting responses to my inquiry.  Your replies have given us more valuable information than anything else we've read so far.  As you can imagine we have a lot of anxiety with selecting the right surgeon.  We really welcome your input on the surgeons in the LA/OC area (Specifically, doctors affiliated with City of Hope, and Cedar Sinai).  We would also be very interested in reason why you did not select a particular doctor or hospital.  Thanks.

Nini & Husband

Simply put,
Just call the CoH prostate center and ask to speak with Wilson or Kawachi. They will call you back, probably late in the evening after their daily OR visits. Between the two of them are over 3200 daVinci's. Wilson runs the show, but Kawachi is world reknowned as well. The UCI recommendation is noteworthy as well. No need to travel far when this type of care is "down the street". Others here will argue for Loma Linda, also down the street, and talk to them all. But for your age group, most will argue against radiation as a primary treatment. As for me, if I had to do it all over again, Dr. Wilson.

Tony

Ms. Nini,

Of course this may not be an important issue on your personal decision tree.
Still, I thought with so much going on with you
  and so much to learn and investigate that I might mention it:
As you research your options, you might look into your insurance
coverage and if it has any compatability issues with the facilities you are considering.

Now that you are actively and deliberately moving forward with your treatment options, don't forget to take some quality time for yourselves!  Light a candle and drink some wine (or hot cocoa).

Don't be afraid to cry and feel sad.
I still take a little time out each day to tear-up and consider
that engulfing "unknown" this experience has brought to my attention.
Just don't linger in despair.
Try not to panic or stampede each other with worry.
Worry won't help even a little.  
A little laughter, a little joy - most certainly will will.

"May God's Love be with you always, in the Son."
                               _{Quoting Night Swimming lyrics from Michael Stipes of REM}

C^Cedar
ICTHUS!

Hey ~ Nini & Loved One,   You are very welcome!!    Our goal here is to make things as easy on you as possible.   Remember ~ You are not alone!!!  Reaching out is the best gift you gave to you and to your loved one! You’ll reach overload, you’ll stop and take a nice deep breath, then…. you’ll start moving forward again.   Right now take in the information and know that down the road… you’ll stop and realize that you have your answer!!!   It will take time.   We came to the forum after we had our surgery.   Buddy did all the research before hand… and we continue to learn so much even 18 months after surgery… so take it all in and know there is a light at the end of this tunnel.   Get a nice little notebook and start keeping notes… You’ll see a posting on a specific thread and you’ll think ~ oh.. I’ll go back to that one and before you know it ~ you’ve looked at 25 or more and you can’t find the one you wanted.   Write down any question you know you will want to take to your doctor.     Most importantly is to stay close and continue to be open and continue to share.   Good, Bad, and/or Scary…   We are here! Get a mild sleep aide ….. and start kegels (exercise for the sphincter muscle) to help with urinary continence.   Hmmm ~ Kegels? Sphincter muscle? ….. I learned everything from reading Dr. Walsh’s book.   It truly helped us ~ learn about the prostate and all the things that would take place as we moved forward with our decision.   This book is not just for those who choose to have the “ open” surgery.   In “Our Journey” I let you know that we did not read Chapter 12….   (I did after several months… mainly to gain knowledge)   I’m sending a special rainbow to help clear away any dark clouds that “will” try to darken your days.   It works at night too!!   Just keep it close and know that we are all sending extra strength to you both.  In Friendship ~ Lee & Buddy     This is “YOUR” rainbow Keep it close //////// * ////////////// //////////////////////////// /////////////// ///////////////////////// * //////////// /////////////////////////// ///// //////////////////////// ////////////////// * /// ///////////// ///////// //// * ///////////////// ///////////// ////////////////////   Rainbows brings smiles, smiles bring positive energy into our being!!!