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Getting A Little Nervous

clrwtr
Posts: 9
Joined: Jul 2009

After my PSA went from 2 to 9.1 from November 2008 to June 2009 I was diagnosed in July 2009 after the second biopsy as having prostate cancer. The second biopsy showed 20% involvement of only one of twelve needle samples being involved with a gleason of 4 + 3=7. Given the dramatic increase in my PSA in such a short time I had already done my research before the final diagnoses. At age 61 and very healthy I decided along with my wife of 38 years to do the robotic procedure. I won't detail my research as it parallels most others on this forum. Two good friends had the same procedure and had excellent outcomes. I fairly quickly decided on either Dr. Menon or Dr. Patel as my two top choices. I finally decided on Patel after two meetings, and having him do the second biopsy. While I like the idea of not having a foley catheter (Menon) I don't like the idea of having a Dr. that far away and since Patel is an hour and a half from our home that clinched it. I was concerned that it would be an impersonal relationship because of the sheer volume of surgeries he does but after meeting him and his staff and seeing how much time they spent with my wife and I we were sold. He and his staff gave us their emails as well as their phone numbers and respond to questions or concerns very quickly.

Enough about the Dr and my decision. The point of my post is that as the surgery draws closer (November 6) I am becoming more and more nervous and emotional about the whole issue and frankly concerned about the outcome of the surgery. I can't seem to stop thinking about what if they don't get it all, what if I am the exception and have incontinence or ED problems greater than I expect.

I appreciate the info and stories on this forum and it has been a great help. I was just wondering if my emotions as the surgery gets closer is normal and if so how many of you coped with it.

As always thanks for your support

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

I think its normal to get the nervousness before anything such as this surgery. I know I did!
Had my Robotic surgery in Aug. 2009. Ask my wife -- I was a wreck with what if's.
I went to Vanderbilt with Dr. Smith. He did an excellent job for me and I'm doing great at just over two months post surgery.

I did have a positive margin on the pathology and you know what? I'm not really worried about it. I made my decision, stuck with it, the Dr. Did his job and I'm healing. The positive margin will be dealt with if needed in the future. I've tried to change my outlook and being more positive. Hang in there. What you are experiencing is normal.

I'm 55.

Larry

NM
Posts: 214
Joined: Jul 2009

I think all of us were nervous about our decision before surgery. I had the foley catheter for 6 days and yes it was uncomfortable but a small price to pay for my cancer gone.

I had no incontinence, no positive margins and so far no further treatment needed. We all worry about Ed but at least we will be on this earth able to worry at all.My dad died of this disease so maybe I am more emotional about it than others.

I am 52 had davinci and am glad it was diagnosed early and I found as you did a excellent doctor.

I coped with my emotions through a supportive family and realising once the cancer was removed I might live a longer life so I just said thank God for Psa tests,put all my trust in my doctor and plunged in. Good luck on your surgery and my prayers will be with you.

Nick

txbarton's picture
txbarton
Posts: 89
Joined: Aug 2009

My daVinci procedure was a week ago last Wednesday. I was a nervous wreck which increased from the time the urologist said "we found cancer" right to when the anethesiologist injected "I don't care" in my IV.

The worse part is the Foley catheter which is lessened by diligent care and lubrication. My catheter waas removed day before yesterday. I wear a pad, sit to pee and dont' have a lot of leakage. Coughing or sneezing causes a squirt and pollen is very high in Texas right now. The neck of my bladder had to be recontructed so my surgeon said to expect somewhat prolonged incontinence.

Post-op pain has been minimal. For me the worse has been perineum ache since the catheter was pulled.

I don't have much surgery experience; a neck biopsy and 3 knee surgeries. The recovery from this is much easier than even knee a arthroscope.

I am 59.

Good luck!

VB

clrwtr
Posts: 9
Joined: Jul 2009

I appreciate your comments and they have helped a lot. I know as I get closer I will get even more nervous but hearing from others, particularly those that have been through this helps. txbarton, I really identified with your knee arthroscope as I have had 5 of them in the past before having both knees replaced, that really helped put things in perspective. I hope mine is that easy.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

When they told you that you had cancer that was the time when you were truly nervous, wasn't it?

I had my surgery 1 month ago tomorrow. And like you I have had 5 knee surgeries, 3 on the right and 2 on the left.

I was very fortunate, my surgery was a non event. I went to one of the docs you considered. I live in Orlando and flew to Detroit to see Dr. Menon. I felt comfortable with my decision then and still do. Like Larry I also had a positive margin. I will have my first post-op PSA on the 24th with my local Uro.

Bottom line is this; you have done all of your due diligence and research. You have considered all the options and made you decision. You had confidence in you dr. so why are you nervous.

Every one who has surgery has different responses to the surgery. Like Larry, I have been dry and in total control from the day they took the cath out. Unlike Larry who is already enjoying an active sex life, I am only beginning to see stirrings that things are looking up.

But everyday is still a bonus. I live it to it's fullest and I refuse to lose anymore sleep over PCa. What will happen will be what it is whether I worry about it or not. Like the first time around, I will just deal with it as it arises.

Accept that at times you have found that you feel a sense of peace and comfort that you have done your work and have confidence in all involved from this point forward. It is okay to feel serene and at peace. Embrace it and don't feel guilty about it.

There is no need to be nervous. You found the cancer and you have an army of medical folks that are prepared to do battle with it for you.

You have found a brotherhood here that understands where you are and where you are coming from. Each of us in our own way has been sending plenty of prayers and blessings your way.

Take peace in all of this, don't worry about it anymore, and don't waste any more of your time on it. Use the time for something more important or something that brings you pleasure.

Blessings to you and your family,

Sonny

The Nev
Posts: 50
Joined: Sep 2009

Well I had my surgery Sept 29th and the one thing I learned is expect incontinence most men will have at least some for many myself included it can be pretty severe. So if you get your cath out and need to wear a brief and not a pad its ok it will get better. Also expect E.D. most men will experience it on some level. Again most will get it back, and for those that don't other options are available. Also keep in mind if the cancer was not removed well as far as I know you have to be alive to have E.D. or incontinence and that means being with loved ones, kids, grand kids, wives. So the worst side effects can be dealt with and you will still see the sun rise and the beauty of life that comes with it! God bless and good luck with your surgery.

Kentr
Posts: 111
Joined: May 2009

"Also keep in mind if the cancer was not removed well as far as I know you have to be alive to have E.D. or incontinence and that means being with loved ones, kids, grand kids, wives. So the worst side effects can be dealt with and you will still see the sun rise and the beauty of life that comes with it! God bless and good luck with your surgery."

The Nev, you hit the nail on the head in your post.

brookjax's picture
brookjax
Posts: 18
Joined: Apr 2009

Your Gleason is similar to mine, so let me comment. I don't know who had the idea that you wouldn't need a foley catheter after robotic surgery; I certainly did. But it was removed after a week and was manageable. Taking it out hurts a bit, but if you tighten you sphincter muscles immediately afterward, the pair goes away quickly.

There are two exercises called Kegels which help to cure incontinence. If your Doc shows you only the one where you count to six or ten for each round (10 to 20 rounds per sitting), then ask about the aggressive Kegels where you do 10-30 quick contractions without holding each one for a count. These are done 2-3 times per day, whereas the 'passive' Kegels are done 3-6 times per day. Many have their incontinence cured within three months. I'm taking longer partly because I wasn't told of the aggressive Kegels for three months, but even with only the passive Kegels I was more than half way toward solving the incontinence after three months. Control is slow to come back, but after 2-3 weeks you will start to notice continual improvements in control. Just continue the exercises.

ED is a bigger problem, and it varies from man to man. My doc thought it might go away quickly and naturally because I'm pretty healthy also, but it didn't. I found that the most common therapy starts with taking Cialis or Lavitra; ask you doc for directions, but it's commonly taken in 10 mg. pills (or half of a 20 mg. pill) every other day. Crucially, it should be started as soon as the catheter is removed. The pills are to increase blood flow in order that the blood vessels which cause erections do not atrophy and become useless, which they might if no therapy is taken. There are other therapies, but the pills are the easiest and therefore the first which are normally used. By the way, the insurance companies don't consider prescriptions for these pills to be medication in their 'formulary' and you have to pay about $10+ per pill through American pharmacies; they are considered optional recreational drugs by our insurance companies and so the 'co-pay' is about 90% of the retail price. There are several foreign sources which charge about $1-3 per pill for the generic form, and these seem to be just as effective. But ask you doc for some samples or a starter supply; many docs get lots of these samples from the pharma firms.

brookjax's picture
brookjax
Posts: 18
Joined: Apr 2009

I should add that my doc used the robotic surgery and had lots of previous surgeries. They can tell from the biopsy whether it is likely that they can save the nerves which are essential to solve ED. While my ED is not solved, I do know that the nerves or most of them were spared and still work, so that is a great relief. I have started using 'trimed' which is taken by injection and works well. I supplement it with the pills I mentioned earlier on alternative days. Some cure their ED quickly, and some take one or two years; some take longer. You can't tell which it will be, but a good wife is very helpful in this.

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