About to go Neo!

1drin make sure you tell whoever is doing the surgery your preferences as I am sure you will get the Neo. But the surgeon will not know for sure until he gets in there for example if he saw cells around or near the uretha that he did not like he might not do the Neo. I am telling you this because this happened to me and I now have the Indiana Pouch which worked just fine and the pouch is very easy to use and no leakage, they say things happen for a reason so I guess this is one of them. So what I'm getting at I told my surgeon first I want the Neo, if it can't be done do the Indiana Pouch, and lastly the Ileal Conduit Bag. Hard for him to talk to you when you are in a deep sleep. So now I am very happy we covered all the bases before the surgery and I would imagine most surgeons would. Well Good Luck To You, Joe

blcforum.com/smf/index.php/topic,1297.0.html Worth a peek at as far as the
nerve sparing deal goes

Thank you Everyone for your responses, I have been reading everything on this site for the last few days and feel considerably better about what the future holds (and in this case what a Neo can hold). I have an appointment on Thursday with my Doctor to discuss who we think would be best to do the surgery as well as a phone appointment with my insurance case worker to discuss the same. I want to move forward with this swiftly but with knowledge.

About me, I am 50 for a few more days, live in Miami and as I said have had multiple surgeries and BCG's etc. I am in good health otherwise, though I do also have something called Von Willabrauns Syndrome. This is a blood disorder that has been an issue with past surgeries as I usually hemorrhage a week to 2 weeks after. We now seem to have this under control with the use of a drip during and after surgery.

Again everyone thanks
This site has been great
Bill

1drin,
A while back I posted that I was actually glad my diagnosis was such that I needed an RC immediately. When I read about others on this forum having endless BCGs and always, in the back of their minds, worrying about their next cycstoscopy, I'm relieved that I got everything taken care of in one fell swoop.

A year later I'm not only back to normal, I'm in better shape than I was before the surgery. I didn't qualify for nerve-sparing surgery, but other than that, I'm not impacted in any way.

You'll read lots of advice about choosing a surgeon and hospital where this surgery is routinely performed. Take that advice. I attribute almost every aspect of my success to the skill and experience and knowledge of my surgeon and the nurses who took care of me after I left the operating room. And to my wife, but I don't think I can talk her into looking after you. I was handful enough.

Are there any specific questions that you have that we can help you with?

Hi There,
Is your concern about prostate removal due to post-surgery sex...???

Nerve-sparing surgery is an option for some (depending on the location of cancer). There are lots of options for enhancing performance after surgery. I was fortunate to have bi-lateral nerve sparing survery and my hydraulics work fine without pills or shots - though it took almost a year to 'get it up'. (My surgery was 2 1/2 years ago).

Dr. Stein at USC/Norris says that some docs believe that taking pills (viagra or cialis...) on a regular basis after surgery can help speed things along. Or a bi-mix or tri-mix shot of drugs into the penis can help.

I only took pills a couple of times. I also received one injection into the penis about 6 months after surgery, and that really seemed to jump-start my hydraulics.

The following link is to a very good online support group for men who have had prostate surgery - and deals specifically with sexual issues. Both men and women participate in the forum. You might want to check it out.

www.prostatepointers.org/mailman/listinfo/pcai

1drin

I have had my neo for about a year now and many of the fears that I had before it have proven unfounded. i lead a full and active life and, during the day my continence is definitely on a par with my pre-op self. Nighttimes I do have issues still but I'm a bit lazy with the pelvic floor exercises and I do like a beer of an evening. i reckon if I could be more disciplined then my continence at night would improve (it couldn't improve in the day - it's as good as I need it to be). Also, as Zac has said in other posts, you can have a cuff device fitted if nighttime continence is a real bugbear down the road. it isn't for me yet.

foodwise, I eat pretty much what I want. Early on, grapes gave me a bit of grief but nothing major. it'll take a while for your bowels to adjust to a bit of shortening but they'll get there. rumour has it they can stretch to their usual size after a while. I cycle to work every day with no accidents and my productivity is way better now that I don't have ongoing BCG, cystoscopies and mitomycin. One of the best things about the neo op is that I feel I can plan ahead more than 3 months at a time now. which is fantastic.

the op itself is pretty gruelling and major but if you're reasonably fit and in the hands of a decent team then you'll get through it fine. you'll have dark days but things start to look up typically around week 6. a guy i "mentor" here in the UK made an amazing recovery from his neo op and is about two weeks ahead of where I was at the same stage. Of course Im deeply jealous. Many people find the lowest point is around day 4 after the op.

Sexually, my bits seem to work ok now. they need a bit of help with cialis/levitra/viagra now and again but I am very happy with my "performance".

I guess the main thing is not to treat it so much as a disability and more of a modification. You are the Terminator!

If you have any specific questions you want to ask please do. I know I had many pre-op and it's really a hard mental leap to imagine an organ that's been with you since birth being removed. If you want to PM me and be less public then you are very welcome.

all the best


tim

Just wanted to jump in and welcome you to the forum. Zack has a neo, so he better than me can advise you. But I would like to say fear not, my husband is 66 and had an r/c Swpt. 14th. He choose the outside bag because of other health issues. He is doing great 5 weeks out of surgery, just here to support your coming up surgery. I know the fear men feel, I saw it with him only to realize there's nothing to fear.
An experienced surgeon at a major facility and you'll do great.
Ginger