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PROSTATE CANCER SUPPORT SITE

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Steve Breyfogle and Barb live in Virginia, USA. He was 59 when he was diagnosed in February, 2008. His initial PSA was 6.4 ng/ml, his Gleason Score was 3+3=6 and he was staged T1a. His choice of treatment was Robotic RLP. Here is his story.

I was diagnosed in Feb 08 with a moderately aggressive PCa and immediately decided upon the Da Vinci robotic surgery. I wanted the cancer gone from my body. My surgery lasted five hours and when I awakened, I had absolutely no pain. I never took a pain pill other than at the hospital. I spent two nights because I was still draining a bit. The day I went home, I walked a mile. I felt very good...almost too good. I was a little too exuberant in my walking. The next two days the same...but that last day, my urine was full of blood. Called the doc and they said to drink lots of water and quit walking for the moment. Took their advice and the blood went away immediately. I didn't like the leg bag at all, so I stuck with the large "bed bag". Mainly didn't like to have to change between them, so I pretty much stuck to the big one. Carried it around in a computer/attaché type bag and it worked well. Unless someone was looking, they wouldn't even notice the catheter . Even went to a couple movies with it. The great thing was I could drink all the giant sodas I wanted and never had to get up and pee. Heavenly!

My pathology report showed that my cancer was in both lobes of the prostate and involved 20% of the organ. They spared both nerve bundles but had to take part of one as a precaution. It was confined to the prostate and there was no cancer in the vas deferens. They didn't take my lymph nodes either.

I am now 32 days out and doing extraordinarily well, in my opinion. For the first couple weeks, use a pillow of some kind when you're sitting. You'll appreciate the softness, believe me. Last night, I got back from a two week road trip from Virginia to Arizona. Took four days each way for a total of about 5,000 miles. Went extremely well. Just two days before we left, I was still having a lot of discomfort while sitting for any period of time, so it had me concerned. But all of a sudden it was gone and I had NO discomfort driving at all.

From the beginning, I have been dry all night, but get up a couple of times. At the beginning, I wore a Depends undergarment because I couldn't control my bladder. However, since then, I only use one pad a day. Now, I notice that if I wait to long during the day to pee, then I have a little "pain" down low...figure that's the bladder's suture telling me it's under stress. But by and large, I am continent. EXCEPT when I cough, pass gas or laugh too hard. So I'll be wearing the pads for awhile. I can see that. But I find them very acceptable for now. I stay dry most of the day, except as stated above. On our trip, I would make stops every 2-3 hours just to pee and stretch my legs, but never had to change the pad. I just find this amazing. I go back to work Monday but don't think I'll have a problem. Will take some pads and wipes...incidentally, the unscented baby wipes work GREAT and leave you feeling clean again.

As far as ED goes, I can have an orgasm, but "Bob" is still like a flag without a breeze. Well, that's not totally so. He swells some, but it's not quite enough for intercourse yet. I'm taking 10 mg Cialis every third day for therapy right now. I am a type II diabetic and was having some ED problems before the surgery anyway. But what I have noticed is that my orgasms are actually more intense than before the surgery. So I'm very
hopeful right now that this will all work out in time. I'm still anxious to get that first PSA test so I'll feel a little more assured.

I would strongly recommend the robotic surgery. Everyone I know is amazed at my recovery.

Please contact me if you have any questions that I might help answer.

 

UPDATED

August 2009

 

 

Nearly 16 months have passed since my prostatectomy and life is good. Yes, I still have ED just as before. I found that Cialis and Viagra didn't do their job with me, so I decided to try injections. I started out with Trimix and have stayed with it every since. You can get a very nice 18 year old-type of erection with it and it lasts for 2-3 hours. What an 18 year-old wouldn't give for that. I digress. Seriously though, the injections are pretty much pain free. It's a fear of putting a needle where it shouldn't go, but I use a diabetic needle that's only 5/6 inches long and 32 gauge. That's very thin and short. If you'd like to know more about that process, please contact me. I'm no expert, but I can share my experience with you if you want it. My urologist orders it for me from a compounding pharmacy and they send it to me next day. After they get his order, they call me for my insurance info. It costs me roughly $30 a vial and that'll last me for 3-4 months. Some folks use Bimix, but I've never tried it since the Trimix works so well. The urologist will recommend to you what he thinks you should try. Mine was willing to do it but started me off on a weak dose, so I had to use more. When I went to his office for my instruction on it, I had no idea what to expect. He had me bring my syringe and Trimix with me. He told me how to do it and watched as I injected to make sure I was doing it right. He said he would be back in about 10 minutes to check on it. Because of the dosage, it was only about a 4 on a scale of 10 but felt so good to have one. He said I could go home and inject more if I wanted. Some folks said the nurse shows them how...I guess it wouldn't have been that bad, given I've lost every inhibition I ever had due to every doctor and nurse at the hospital wanted to have a look-see after my surgery.

I have no regrets about electing the robotic surgery. I could have opted for the other choices available, but my urologist told me he didn't wanna do the radiation first because after that, surgery is usually not possible. But the choice was mine. Honestly, it took about 5 minutes to make up my mind. I wanted the beast gone. I didn't wanna always wonder what that pain is.

Our sex life is not so good but my wife is having a hard time accepting the fact that I have to inject to have an erection...she finds it so unnatural. I pretty much do the injections for therapy so I get oxygen to the penis which is important if you're every to recover any function. Pumps don't oxygenate the blood the way it needs to be. I have awakened once to a nocturnal semi-erection and that was a pleasant surprise. But nothing since.

I wish you well in your choices and recovery. Please feel free to contact me if you have any questions about anything.

Warm regards,

Steve.

Steve's e-mail address is: barfinkl1@comcast.net