Scared

Carolyn,
Here's a great big (((HUG))). And yes, it really sucks to have to choose between urinary diversions, but doing nothing or waiting too long with a stage 2 will only get worse. We're here and we been where you are.
I had a neobladder done in Mayo's Minnesota this past March. I was so freaked out that they were taking out my bladder and making a new one from my bowels - and even getting a robot involved. Blew my mind and scared me silly. I did it all on a rather quick time frame and still was stage 3 N0MX at RC. If I had to do it all over again....I would still RC/neobladder only I would have done it quicker
My surgery was 3.5 hours and done with DaVinci....I am the 1st successful female neobladder done with robotics out of Mayo's. I have 100% daytime continence, and about 99% at night. Smirnoff Ice or Cosmopolitans can reduce that LOL I have never had to cath I thank God for that - I agree with Patricia here.
As a hospice nurse I am sure you have most compassionately cared for plenty of folks loosing their battle. No doubt those vivid memories are close at hand. Hard as it may be, you really need to keep your eye on winning your fight.And you can - stage 2 is pretty decent and doesn't always require chemo if I understand it right. This, my friend, is doable In less than a year - you could be back to "normal" and living life quite nicely. Focus on winning
Hysterectomy is no picnic...I went into surgical menopause at 37 so I know. I couldn't do HRT as I am a breast cancer survivor, but maybe you can. Instead of PMSing these days - I just get to be "haglike" as I like to call it Again - you will get past this too
I was told I was a candidate for a neo because my cancer was all in the dome - no where else. My other parts - ureters and urethra all looked good. They did bladder neck biopsies at the 2nd TUR to be sure. Odd as it was - post op they told me I had a 3rd ureter - have 2 on the right side. They hooked them both up to the neobladder! They also discovered I had a rare cancer - urachal (belly button) boring into my bladder. Glad I never considered sparing methods with all that happened with me.
I had a drain on my left side, a bag catching my 2 kidney stents on the right side, the incision down the middle, and a catheter between my legs. No other abdominal tubes - not sure if I was normal tho ??? Keep in mind they are all out in 3-4 weeks when all is healed up. They aren't all forever.
Not sure what I can tell you that will be helpful, but you can ask me anything. I just want to encourage you to forge ahead and get that bladder out at stage 2. Mine was stage 3 with undetermined mets. Tomarrow I head back to Mayo's for my 9 month check up...and I am focussing on winning too
God Bless, Holly
PS I may not be online again til Friday, but I will be back!

I know it seems like you're picking the best of the worst choices but those of us that have been through this kind of think our choices are great. Right now bladder sparring chemo and radiation is a really tough road to travel and then you may still
fail and have to have the surgery...read Cynthias corner on the main page...She was part of the trial at Mass General...its pretty grueling. I don't know what makes a woman a good candidate for a neo....I was the same grade as you are and healthy otherwise and in great shape but nevertheless i still have a shorter urethra than a man. I was also told i was a good candidate for the neo. I did a ton of research on it and that was 5 yrs ago and success rates with women were somewhat dismal...i decided that if i had to cath i wasn't going to do it where i couldn't see where i was going and taking into consideration crummy bathrooms and i absolutely cannot stand a catheter in an area where there are other nerves if you know what i mean....so my pick was the Indiana Pouch with my stoma at my navel which is easy access and no nerves going into the pouch. It was a very tough decision and i agonized over it but now 5 yrs out i'm completely comfortable with it. My stomach is flat and looks perfectly normal as my stoma looks like a bellybutton...scars are gone...you wouldn't have any idea i had surgery today.
Length of surgery depends solely on the physician...some have it down to 3 l/2 hrs ...others take 5 to 9 hrs. Ask Dr. Koch. He really should be able to give you some success stories with women and the neobladder...someone you can talk to.
Holly had a very successful neobladder done by the DaVinci robot at Mayo. There are others who have had them on this site and the biggest problem seems to be hypercontinence.
I've never had an UTI with the Indiana...i also never reuse a catheter. I'm very fortunate in that my insurance covers all my supplies.
Read over the different types of diversions on the main page.
We've all been where you are right now...there is a light at the end of the tunnel....Pat

Thank you all for your kind words. I just cannot stop crying over the whole situation as I'm sure all of you did. It is just life changing. I worked as a hospice nurse and have put on the Relay for Life for the last 12 years and know that I'm lucky that I have a chance for a cure. But somehow it does not help me cope right now. Dr koch looked at the path report and feels it is stage 2 just inside the muscle. He said of cource we will know more after the lymph nodes are studied to see if it is a later stage. He thinks I wil be a good canidate for a neo. I asked him how may women he has done and he never really gave me a number except to say very few are good candidates. He quoted me a 90% success rate with some incontinence at night. He wants to try for a neo with a hysterectomy at the same time. The more I read the worse I feel about it.Not one doctor has wanted to try doing something to keep my bladder. My thoughts... they rarely do radial mastectomy anymore so this seems so severe. I know bladder cancer has a high return rate. What about infection? What if it doesn't work? Would the pouch be better? It is like picking the best of the worse choices. Dr.Koch stated the majority of patients that come in are in much worse health and he does not recommend the neo but he thinks I will be a good canidate. If any women has had a neo bladder how long did the operation last and what was your experience like. Did you have to have supepubic cath also with the foley after surg? Nothing can be worse then this waiting.

Holly,
Happy Anniversay and many, many more! ;D
Sally

Hi Carolyn,

I think we all were pretty scared as we faced radical cysectomy and diversion. I was 42 and a newly wed just 11 months ago when I was diagnosed. I had the RC(radical cysectomy) and neobladder in March. Turned out I was stage 3 so I also did 4 rounds of chemo. It was not easy, but I got thru it just like you will.
I am glad that I did, too.....today my hubby and I celebrated our 1st annaversary
God Bless, Holly

Carolyn, the the pain, I assure you, is both finite and manageable. The apprehension, on the other hand, can keep you up at night for weeks and dominate your thoughts.

It's interesting that once the pain is real, as opposed to anticipatory, it can be dealt with. I'm not going to tell you that I didn't go through pain after my RC, because I certainly did. But I found that real pain--at least in my case--wasn't as bad as the anticipatory pain I'd worried about. And I could handle it. It finally had a face and an actual sensation. When it finally appeared I knew it had limits and that I could tolerate it, deal with it, and beat it.

Charles M. Schulz, the creator of Peanuts, said "I have a new philosophy. I'm only going to dread one day at a time." I laughed when I read it, but it's actually pretty good advice.

By the way, the pain didn't last nearly as long as I thought it would.

I'm going to leave the neobladder/Indiana pouch decision to you and your doctor, but I'll echo what Patricia said--you're in great hands at a terrific facility. If you have the chance to talk to some other women, as Pat suggested, I think many of your fears will be, if not put to rest, at least put into perspective.

Best wishes to you,

Zach