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Our journey!! Neobladder!

10 years 10 months ago #22799 by EG1680
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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10 years 10 months ago #22713 by sydelle
Thank you so much for your upbeat message. Good luck and life's joys to all.Sydelle

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10 years 10 months ago #22707 by newbie08
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

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10 years 10 months ago - 10 years 10 months ago #22698 by mznoregrets
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

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10 years 10 months ago #22688 by BJsHere
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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10 years 10 months ago #22687 by BJsHere
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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