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Radical prostate surgery required: Scared Crapless

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Posted 12/5/2008 12:16 AM (GMT 0)
 

Hi all,

How do I start?

PSA; Nov 2007: 5.3

PSA; Jun 2008: 7.4

Age: 53

No family history

5 of 8 biopsies Adenocarcinoma: found out yesterday.

Gleason score: 5 or 6...went blank after "you have major cancer, sir"

REC: Prostate removal

Symptoms: 12 months ago, perineal pain...3 times unbelievably severe...OK since except for rectal uncomfortable pressure.

185 pounds, 5 foot 10 inches, work out daily. Chest 45, waist 32, hips maybe 34...never measured.

Actual profile not bad for 53, muscular upper body, slight spare tire, same pants size for last 12 years, skinny butt, chicken legs...but at fuller end. Nephew says I look like 45. Good muscle tone.

8 months of Septra/Bactrim DS to stop Prostatitis.

Present Status: Scared Stupid

Required Action: Need Serious Help with treatment options.

Urologist: Matter of fact with bedside manner of a droid. 

I'm 53 and married with 3 great kids...all grown...one back at home finishing college. Married 32 years, incredibly beautiful wife I'm still very much in love with. Been together 36 years. GREAT sex life...me instigating often. Very loving marriage and very lucky!

Urologist wants RPRemoval...all of it...and soon. Does Cryo work? Who does it? Anyone have any experience with Robotic LP removal?

Sheesh, not overwhelmed...but very whelmed.

Do I sound stupid yet?

I'm from Canada, the home of paid health care...except when you have what I have and want to have options. 

Please, some help and discusion.

Mike

 

Posted 12/5/2008 1:26 AM (GMT 0)
Mikey,


Take a deep breath, or if you are like me take one night to feel bad for yourself get it all out and then its time to get busy cause you can beat this. Our stats are very similar. I too have a wife who just happens to be my dreamgirl No one can tell you which is the best course for you BUT we will arm you with enough info to help you do you due diligence and make the best decision for you. Any question is a good one and you DO want to research this thing thoroughly. Some will insist on a sense of urgency but you cannot grow another prostate so YOU have to be comfortable with your choice of treatment. No second guessing here. I am very happy with my progressss but I know it would not be the same for some. If you do decide on Surgery, check the surgeon out as if he had your daughters life in his/her hands. Know that they know what they are doing. Get refernces. Believe you me people will sing a good surgeons praises and darn an incompetent. Get more than one.

You will be ok and people on here are the main reason Cin and I made it this far.

Posted 12/5/2008 2:12 AM (GMT 0)

Thanks VaFan,

I know, by far, I'm not the only one. So many thanks for the reply...and I've taken a deep breath.

I started doing some research when my doc sent me for a biopsy a couple of weeks ago. Options are:

1) open prostrate removal.

2) Nerve sparing open removal: dependent on what they find when I'm open.

3) Robotic Laparascopic Removal: Nearest Canadian Centre doesn't have too much experience.

4) CryoSurgery: Nearest Canadian Centre doesn't have too much experience.

5) I'm getting a bone scan and asked for follow-up MR to see if it's spread.

I'm looking at US or Euro Centres as they seem to offer more treatment options. My Uro said very non-chalantly "you'll probably not have another orgasm". What I've found online is I may not have another ejaculation...but many still have an orgasm...even with  some ED.

All the above aside, if I am still able to live a productive, healthy and active life...I will be more than happy. If I can do this and realize some semblance of what I have...the better.

As you and all others here have already have gone through this, any help from your experiences would be gratefully appreciated. Any comments on the above procedures?

With gratitude...Mikey

Posted 12/5/2008 2:34 AM (GMT 0)
Hi Mikey,
You do have options. If prostatectomy is suggested, then go for it. But your urologist sounds like a real jerk.Their motto is "do no harm" but when they drop a bomb on you like that ...well, you get the picture. Check out DaVinci surgery on-line. There are six surgeons,at least, in Montreal, and in London,Ontario. I don't know what province you're in. Whatever procedure you choose, try the nerve sparing if possible. There is a ton of information to be had and it is all at your fingertips on this site. Check back through some of the posts and you'll see what I mean. Do your homework. Read all you can and get a second opinion if you'd like.
Any doc worth his salt won't take offense. And doctors are human. Check to see if there is a support group in your area where you can talk to other PC patients and get their input as to diagnosis', procedures, and post-op information.
There are a lot of very fine and informed gentlemen(and wives) on this site and it is the only one I go to for feedback.

Get back to us and let us know your progress.

Bob
Posted 12/5/2008 3:02 AM (GMT 0)
The quality of your doctor is important if you opt for a prostatectomy. The rule of thumb is the more proceedures the doctor has performed, the better. I opted for the da Vinci robot and had a very positive outcome. You have a number of options available. The question is what is the best option for you. Find a doctor you trust and discuss all of the options. Learn the pros and cons of each option. There is a great deal of information available on the internet. You'll find it easy to get over whelmed with information.
Posted 12/5/2008 3:03 AM (GMT 0)

Hi Bob,

I'm very close to London, Ontario. My URO didn't mention that London has some leading edge stuff. He sort of mentioned that London has some "studies" going on. I just googled London and Cryo and Robotics and they have done a fair bit...I'll keep looking.

I don't usually miss much, but sheesh, my URO wasn't clear...in the 5 minutes I had with him. Even though I felt I still had my hand up saying...but...but...as I was dismissed.

Maybe it wasn't even five minutes...my mind went part way to Mars after the "sir, you have...".

My Gratitude Bob...I'll continue

Posted 12/5/2008 3:43 AM (GMT 0)

Many thanks for the quick responses I've had here.

I've gotten more info here in last few hours than I did from my URO and my original distracted web searches...and my MD. I've also had to spend a good part of my time since 9:00 am yesterday through to just now talking to family members telling them what is going on.

I go for a bone scan at 8:00 am (well, the injection). I won't know the results until the 17th (my URO's away). I know the bone scan is just one of many tools, but the anticipation/anxiety until I know will again be stressful.

I'm just completely blown away that another poster, Bob in the US, told me that a city near me has leading edge stuff going on. My URO didn't tell me that in those words and I went online and...well that's tomorrows work. 

Thank you all for today. I will let you know what happens, good or bad...and thanks for this site!

Mikey

Posted 12/5/2008 3:43 AM (GMT 0)

Hello Mikey:

First of all, I'm sorry you are here...but at least you have found a site with lots of caring folks and LOTS of good information that will be helpful.

Secondly, if you are right about the Gleason score, then your cancer is probably on the low end of aggessive so do take the deep breath and take a little time to figure out what you want to do.  The good news is that you have options...

There is a ton of info on the internet and you will find many of those links from this site.  There is also an excellent book that I would recommend for a starter, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer.  This is not the be all - end all, but I found it to be an excellent primer on our disease and led me to exploring other research.

I would also recommend that you get at least two other opinions as to a course of treatment.  One should be from a robotic surgeon who has done 250+ procedures and one should be from an experienced radiation oncologist who can intelligently discuss different radiation treatments with you.  Also, an approved treatment in Canada and Europe is HIFU (not yet approved by the FDA in the US, but in clinical trials).  You might want to investigate that as well.  In any case, this is a BIG decision and you owe it to yourself and your family to research the heck out of it, then make a decision with which you are comfortable.

Good luck and please let us know how you progress.

Posted 12/5/2008 3:47 AM (GMT 0)

I suggest getting the book "living with prostate cancer" by Dr. Patrick Walsh. He is the head uro at John Hopkins, the leading hospital regarding prostate cancer. I found the book a source of comfort and super information. I had open surgery october 1st. I actually called his office and talked to his secratary. She said to e mail the doctor which I did. He got back to me in a day with some good information. I actually saw 5 different uro's before I decided on open surgery.  My surgon had done over 1,000 prostate removals. There are some studies that indicate a higher rate of need for radiation 6 months after surgery done roboticly. High volume doctors have a lower rate though. Experience is everything. You only have one shot surgery wise. My recovery was easy. Yes I have a larger incision, but I did not what to think about salvage therapy having to be done.

I actually had decieded to have robotic and changed my mind after reading studies. I know it is way of futher but don't dismiss other surgical options. I just had my 2 month post op psa test, 0.00. Incontinence is a issue though.

Posted 12/5/2008 4:33 AM (GMT 0)
Mike, If you do not like what your Doctor is saying you can Fire him and go find another one. Glad you found us early in your Joruney.
KW
Posted 12/5/2008 4:42 AM (GMT 0)
I am 3 yrs post open RP and still a member of the zero club.  Incontinence for about 2 months and was pad free by 3 months.  I had nerve sparing surgery but none of the Big Three pills did much for me and I have what appears to be perminent ED.  I have been using Trimix injections with great results for over 2 1/2 yrs so the ED isn't a big deal.  I can actually perform better than before the surgery.

The reason I am writing is to let you know that my situation was very similar to yours.  I was 55 at surgery, (just turned 58),  happily married to the wonderful mother of my 8 grown children.

Three years after surgery I am healthy, strong and looking forward to a long life free of PCa.

Do your home work and make the choice that is right for you.  In three years I hope your story is as happy as mine.  (Except I hope you beat the ED).

Best of luck,  Allan

Posted 12/5/2008 5:27 AM (GMT 0)
Mike, two things first. Number one............if your doc said that with Gleason 5 or 6 and PSA 7.4 you have major cancer and two, if he also said you'll not have another orgasm after surgery, then if I were you I would bolt and find another doctor. There are many that would argue that open surgery is better than robotic..........the surgeon can feel the texture of the organ as he goes. Bone scan and MRI are unlikely to show anything.......it is generally accepted that mets with a PSA under 20 are unlikely. Get the biospy pathology looked at by a second lab (as reputable as you can find) and get an opinion from another doc as well as a radiation oncologist. Make your decision armed with as many facts and information as you can muster and make sure you get a surgeon with an excellent reputation if you go that route. The worst thing you can do is be panicked into a rushed decision. Best of luck,
Bill
Posted 12/5/2008 12:51 PM (GMT 0)

Hi there

Posting from London Ontario. I had the DaVinci operation for prostate cancer here on Nov 13, 2007 by a Doctor Pautler. Check him out. He's great and has performed this procedure numerous times. His secretary can probably tell you exactly how many.

Good Luck,

Pux

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