Having doubts going through with this - would love opinions

That is one of the hardest questions that you will probably ever have to answer. No one else can answer that for you, but everyone here can give you advise.

From what you have mentioned, you should do well with whatever you select.

For me, I had robotic surgery a little over 9 weeks ago, both nerves were spared. I suffer no ED even while the catheter was in and I am 98% continent. I am 60 years old and prior to surgery everything thing worked great. Now I am probably not the typical outcome, but as my urologist said, "if you are in good shape prior to surgery, you should do fairly well afterwards." But then he said there aren't any guarantees on the outcome.

john, if you have any doubt about proceeding, please, don't go through with it. it can always be re-arranged when and if you are ready.

with your data, you should be able to safely do AS for a long time.

trouble with surgery (and I am a surgery guy that was lucky enough not to have ED), is that you don't really know what you are going to end up with, with incontinence and ED issues. It's a roll of the dice.

I am 5 years plus post surgery, 4 years plus post radiation, and none of the treatments for me caused any ED, not even this far out. Yes, with radiation, sometimes the effect is delayed by years, and then catches up to you. No way to predict that. No guarantees from any honest doctor.

I realize even in my own case, my good fortune could slowly come to an end, but so far no evidence.

Good luck. Kind of like when my daughter got married, I told her that even if she changed her mind walking down the aisle, it was ok. With a primary treatment choice, you only get one shot at it, so you need to be 100% this is what you want to do.

david

Welcome to our corner of the world, sorry you need be here.

Deciding what to do is the hardest part. The truth is that with your numbers, all treatment modes will work just fine. It would be irresponsible of me to try and predict what side effects you'll get.

In my case I chose IMRT. My PSA has dropped nicely and after two years the side effects are minimal. I get a bit urgency, my hemorrhoids are a bit worse and some ED. For me the ED started after about 1 year and I need occasional meds to get it up. Over all the impact on my life hasn't been that bad.

Now, you'll heard similar stories from the surgery guys except their ED starts a surgery and slow recovers to a percentage of what it as before. With RT it starts out fine and slowly degrades to a percentage of what it was before. Some guys get no ED with either method and some get totally ED - more often with surgery than with RT. It's so variable that who knows what will happen to you.

Hang in there and keep us updated on your progress,
Andrew

I agree with the above

you have plenty of time to think

with radiation - things tend to get worse for a while post

for surgery - things can get better for a while

sometimes the impact seems to be luck of the draw, you case, your doctor, your anatomy

There is no way to know the right answer.

My husband, only 41 when diagnosed, only had gleason 6 in one core, and after surgery and salvage radiation, his psa is not zero. I am thankful he didn't do active surveillance as we would have felt that was reason he is not cured. And honestly, I am a little disturbed when everyone writes that you have plenty of time. You may. You just don't know. I question whether maybe the surgery would have worked if it were only a month or two earlier.

A doctor told us that the younger and fitter you are, the easier the recovery. But, again, you never know.

There are no guarantees and you have to think about which case you would feel worse if you guess incorrectly. I would rather my husband had had worse side effects and zero psa. However, if that had happened, we'd probably be wishing he didn't have surgery because we would have thought failure to cure was not even a possibility.

Which scares you more? Side effects or living with cancer?

unrelated note - Spellcheck keeps changing psa to spa. They are not the same thing!

Melg said...
There is no way to know the right answer.

Truer words were never written. None of us can possibly know for certain how things would work out if we took a different road.

Pretty much I agree with all the other posts above.

First, get a second reading on the slides.

If the prognosis remains the same or better, you seem to be a candidate for proactive surveillance.

At age 50, I try to maintain my quality of life as long as I could, if I could psychologically handle having some known, albeit relatively minor, PCa remaining in my body when I could have dealt with it more aggressively with surgery, radiations, seeds, etc.

As you age and ED becomes an issue anyway, then you can have those gold markers recalibrated.

The good news is that you have time to be comfortable with your decision and just about any decision you make can be justified, versus a clear yes or no for one treatment over another.

Not an expert but I suspect the gold markers would only cause you to get to know your friendly TSA agents at airport a little better.

Some people believe wearing a gold bracelet helps them, so you are jsut wearting yors on the inside closer to the problem.

I don't know enough about that treatment to know if the markers get removed afterwards, or if they remain anyway.

LupronJim

Hi John
You are getting some really good advice, educate yourself on all the pros and cons for the different treatment options. Don't rush into a decision, there is no going back. But, make a decision be it treatment or AS. I read the following books and they helped me decide that surgery was my best option. Books by Patrick Walsh and Peter Scardini. I liked Scardini's style better, to the point and very clear.

To help me decide I used the books, and a team of dr's from different disciplines. Its so worth getting a few treatment options. For me it was two urologist, my primary care physician and a radiation oncologist. They all recommended surgery. I could always fall back on radiation as a second chance at a cure if needed. And so far its not. The words from my primary care physician were something like don't screw around with this, treat it aggressively so I did.

ED was a big concern for me along with continence. The best thing I ever read about this is " The main thing is the main thing" That's getting cancer free. The other two can be worked around

I had surgery on 11/1 and ED is an issue but is slowly getting better, 75% back after 10 weeks and for a surgery guy that's pretty good. If you choose surgery make sure you ask about their record on ED and Continence. The books cover how to select a surgeon

This forum has a great group of guys that are here to support you through this journey. Ask us any related questions and you will get answers based on practical experience and our own study.

Good luck, keep us posted

Pat

if you are going to go the AS route make darn sure your cancer isn't worse than the biopsy shows because there's a good chance that it is.

I'm more than four years past IGRT and BT and I've never been incontinent once. what ED I do have is treated with Cialis. sounds like you are second guessing your decision.

I like John T's coach advice. better to have one qualified opinion than every possible opinion from an internet forum.

ed

John,
Your post caught my eye. My original psa was 4.3. It went a little higher later. Also like you, My main concern was ED which is why I steered clear of surgery. As you can see in my profile, I chose brachy and could not be happier. What you don't see in the profile is that my sex life is as good...or even better than it was prior. I would be glad to give you more info. if you want to email me.
I wish you the best, Brother.

John
If I were you, I would print out the comments that you have been given here and take them to your urologist. I would ask him to comment on each and every one and to give you his medical opinion. Some doctors are not happy with online help, because it raises to many questions. A great doctor will listen and agree with or counter with facts information from the internet.

Remember, the people here are not medical professionals, but some of them do far more research than your average urologist. and...as you might have noticed they do not always agree.

John,

Welcome to the forum. You'll find a lot of support, information, and advice from people that were and are in your current predicament. Three things you must manage. #1, your expectations, the information, and finally, your decision making process.

First of all, you are relatively young and hopefully, do not have any other serious medical issues. So you have a lot of options and the potential to have a faster and less complicated recovery. I am 52 and recovering from DaVinci Robotic Prostatectomy. Every in my case has turned out as advertised. One thing you must do is an honest and realistic inventory of who you are. If you are the worrier type, or not the type that can be comfortable putting this issue in the back burner and taking your time, then you must go to work quickly educating yourself about your options, assessing your expectations, and understanding what the implications will be for each possible decision you can make. What you will find out is that having so many treatment options will initially confuse you. You do not have to decide today or even tomorrow. But you, at some point soon must decide based on what I mentioned previously.

I wish you the best facing this challenge. Stay in touch.

Regards,

Newborn

Diagnosed: 9/2013 at 52 yrs, 7 months
Diagnosis: PSA 2.0, positive DRE, biopsy/Gleason 3+3=6 and 3+4=7 on 2 of 12 nodes.
DaVinci Robotic Prostatectomy on 11/5/2013. Discharged the following day. Catheter for 7 days.
Post op biopsy confirmed Gleason scores, 3% of prostate had cancer, no positive margins, PCa confined to capsule
Post op PSA 6 weeks after surgery: 0
First erection after surgery: 11/25/2013 (20 days)
Incontinent for 2 months, significant improvement since. Wearing one small pad a day for sporadic, small leak protection