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Our journey!! Neobladder!
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
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9 Replies
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hi michelle -it’s me, eileen g! i haven’t logged onto this site in months and months. michael is doing great so i don’t feel a real need to. but as you said you can never quite forget or ease up on your vigilance against the big CA. anyway, sounds like your dad is progressing beautifully. you’ll see it just gets better and better.
michael had his one year check-up and has been promoted to a 6 month interval between scans, so that was good news. we haven’t had any incidents/infections/scares since a few weeks post-op. (i think i told you that it’s a good idea to find out who is the best radiologist at your local hospital, and make sure you request the same one to read all your dad’s scans. we had a big scare after michael’s first scan which turned out to be nothing, but to protect ourselves against that happening in the future, we now know to ask for the same radiologist every time.) anyway, a few weeks ago michael felt like he had to urinate all the time, which is what used to happen before he got diagnosed. then one day after about 5 days of that feeling, he passed a clot of muscous. then the urgent feeling stopped. so i guess that’s the mucous plus they talk about that can block you up and make you need to self-cath. michael has never had to self-cath even once and i really hope it stays that way. so you might want to remind your dad to make sure he really hydrates well all the time. michael does that, and he almost got plugged up anyway. it wouldn’t have been a big deal if he did, but i just wanted you to know so that if it happens you will be prepared. again, it was the first time in 13 months since surgery, so it was no big deal.
glad you hear you and your family are doing well! eileen :cheer:
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Thank you so much for your upbeat message. Good luck and life’s joys to all.Sydelle
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Thanks for posts everyone, I think my point (in the long winded way I wrote it!!) was that if you have a choice (obviously not everyone does – and i think from reading posts people adjust just fine to any option!!) the Neobladder is a very good option for men (I’ve read that it is different for women so can’t comment on that!!) I was talking to my dad about it last night and he reckons that he made the best choice and even he is surprised how good it is!!! He said to be sure to post so that any men worried will know that!! I didnt actually realise but he’s not even wearing pads during the day now, doesnt even need the security anymore – 6 weeks after cath removal!! I’m surprised its so quick :)
Yes his doc was Dr Bochner, he is amazing, really great surgeon but also very nice man, easy to talk to, never rushes answers or makes you feel stupid with endless questions! He did an amzing job on my dad for which we will be forever greatful!! As for recurrence and worry, obviously that’ll always be in our minds but worrying wont change whats to come so keep fingers crossed, stay positive, enjoy life and have your regular check ups! Dr Bochner said that there is 90% + chance this surgery + chemo is a cure so we have to take those good stats and run!!
My dad was stage 2 grade 3 by the way so I’m not 100% sure of the treatment plans of Stage 3, I think Holly’s point is valid though, never any harm in asking questions and getting clarification from your doc.
Michelle x -
Hi,
GKLINE – I could not help but notice your post…Congrats on getting through the rc/neobladder so quickly!
You stated you were a stage 3…Could that possibly be grade 3? There is a big difference between both. Stage 3 is when the tumor has gone thru the bladder wall and into the perivesical fat. Grade 3 is the aggressiveness of the cancer itself. I myself was a stage 3 (also called T3b) and grade 3, and chemo was heavily recommended. Also I have had to have check ups every 3 months which I have thought was standard – when are you to go in for follow up care?
On the tabs of the home page for the website there are pages with info on staging and grading and also pages on treatment protocals that may be helpful to you. I am not trying to distress you, but rather want to speak up to be sure you get the quality after care you deserve.
If I can be any help just message or post. Everyone here is friendly and willing to share to help everyone. God Bless, Holly -
GKLINE-
Unconnected thoughts and rambling are OK.
The journey will continue and hopefully, it will be more positive.Look at all the new friends you have out here!
Happy Holidays, BJ
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Michelle-
Thanks for sharing.
Please wish your father continued success from me.
Your family seems to be very supportive, kudos to you.Happy Holidays and Best Wishes for a better New Year
BJ
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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
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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.
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
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
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduitSign In to reply.
