Our journey!! Neobladder!

Did you go to Sloan and was the Dr. Dr Bochner? Were there any nodes removed? and what did they say about prognosis? thanks Sydelle

This is my first post. My experience was nearly identical. Diagnosed, by my family doctor by the way, on June 3rd, 2008. Confirmed by cystoscope on June 5th, at Albany Medical urology dept (DR Badar Mian). Had 2 robotic surgeries in July and then Radical neo bladder surgery on August 6th.
My head is still swimming and I have only a few lingering effects. I have had no Chemo. Have a great support system with my family. I work out every other day and I generally feel good. Also very guilty for having things go so well so far.
This has been a journey, for sure. Only recently, I have been concerned about reoccurance. Before I visited these sites I was merrily rolling along thinking I was CURED. I guess that is never the case. Now I am somewhat concerned. I had never had a sick day in my life before this ( I have had a number of injuries due to my choice of sports; skiing, bicycle riding, auto racing ) But, they were easy to comprehend; when the pain went away and things moved as they should, I was cured. Until the next time. THIS Cancer thing was a shot out of the blue; no pain,just a small amount of blood in urine. BAM! stage 3 with 4 tumors.
I felt better BEFORE I saw the doctor.
Sorry about the rambling, unconnected thoughts, but things come to mind quickly, and without a connecting thread at times.

Michelle.
I have been following your dad's story with admiration. If I am not mistaken, you came all the way from Ireland for the surgery. I traveled too for Dr. Bochner at Sloan but only from North Carolina. He is fantastic and I am so happy to have found him. There are many great surgeons with experience with bladder cancer and I am a great believer in finding an experienced one. This surgery is a very complicated one from what I understand no matter what diversion you choose. You want someone who does it on a weekly or daily basis. I hope your dad continues doing well and look forward to hearing more good news from you and him.
Balihigh

Hi there, Sorry I havent been on much lately, I have been checking in quickly, just checking posts etc but havent really had opportunity to leave any posts or reply!! Hope all are keeping ok and believe me I've been keeping tabs on you all Being back at work is taking up a lot of my time and our internet has been playing up so that's why i've been only on and off!! I suppose on top of this, on a good note life just starts to go back as it was - this wouldn've been hard to believe if someone had said this a few months ago!! I just thought I'd leave a post as I've seen alot of questions from new comers to the site lately and I remember when I first came on the site, I was so terrifed and had no idea what was ahead - when I got advice etc I really appreciated and I'll never forget those who reached out to me and my family!

I'm no expert on options etc but i just want to let people know our experience and that their can be light at the end of the tunnel! my dad is 55 years old and out of the blue was diagnosed with T2 G3 Bladder cancer in May It was just so awful, I thought our lives were over, when I heard bladder removal i just couldnt believe it! Anyway we got a 2nd opinion from a great hospital in NY where the doc does about 150 operations a year and was alot more positive about my dads outcome than we had heard, so that was when our journey started, feels like it was only yesterday, its hard to believe its been months! This is just a summary so if anyone has questions just ask!!! My dad was recommended to have 3 months of chemo prior to surgery, he had Cisp/Gemciabine regime which proved to be very successful, it was a horrible few months, Chemo is tough but in our case was defo worth it and I think prior to surgery was alot better than potentially having it after, that's just my opinion but I think my dad had enough to deal with after surgery than going through chemo, anyway he was pretty sick on the cisplatin weeks but didnt loose his hair and got through it without any major setbacks, he did have some funny episodes of chemo brain too!!

Then on the 16th Sept he had RC with neobladder, there was NO other option my dad wanted, as he said he's young and fit and didnt want a bag/catheters etc for the rest of his life (personal opinion obviously!) so his choice was made!! Anyway operation lasted over 10 hours (an unbelievably horrible day which seemed to last for ever!! ) The next 2 or so weeks were obviously uncomfortable and sore for my dad after such major surgery, i think that was expected.....he was still up walking the day after surgery though and continued to walk every day getting bit stronger each week! He lost about 15lbs over a few weeks (which he has put all back on!) then tubes came out, little frightened and some mental adjustment required to come to terms with bit of leaking and pads etc, but humour helped us through!! He had to eat smaller portions and still does, if he over eats he'll get bad stomach pains so he's adjusting his appitite to that, he still has no problems with his sweet tooth though, he always manages to eat desert, we spoiled him after surgery and now we're trying to get him to cut it all out - he's not happy with that ha ha! We had 1 UTI to deal with post surgery which was scary but he got through it after 5 day stay in hospital - his temp was spiking really high and he felt awful!!

Since then my dad is doing well, its been about 6 weeks since cath removal, he is continent during the day (kegels!! we all shout as he's getting up from the couch....its our running joke ha ha!) and at night he gets up every 4 or so hours (at start it was tough when getting up often but its getting better!) he might have a little leakage at night (usually when he turns off the alarm and doesnt get up!!) but he is doing well with the new bladder considering! We are all surprised how quickly he has adjusted and his new bladder adjusted to him he is back to work for the last 3 weeks or so, part time working up more each week, he gets tired easier but that's to be expected too! We have eaten out and he has been able to have a few drinks (alcohol ha!)recently which didnt seem to cause any problems!!! He has his first check up on 8th Dec so hopefully our Uro will be happy with him and we'll get the all clear again!! He still has a road to go with recovery but considering all he has been through he is doing well!! Hope this helps anyone who is at the start of this horrible journey and all ye bladder buddies are keeping ok!! any questions just shout.

Michelle xxx