Newly diagnosed (6/19/09)

14 years 9 months ago #26813 by Melodie
Replied by Melodie on topic Newly diagnosed (6/19/09)
Mike,

Thanks for including the link from Cleaveland Clinic on the diversions; thought it was very good info. except for the idea that recovery is 1 - 2 months...I would add, that is the case if everything goes well. We know all too often that life doesn't always go as planned, and we are all different and won't know how well we will recover until we get there.

My surgeon told me "tell your boss you will be gone 6 weeks and that way if you are back in 4, you'll look like a hero". (got the Indy pouch) Well, I had read enough on the forum so I knew NOT to tie myself to any timeframe. I had read somewhere to allow one month for every hour of surgery and that proved true for me. I was in surgery 7 hrs...had my surgery in late July 07 and went back to work mid Feb. of 08. I have to add, however, if I had not also gone through chemo prior to the surgery, I think I could have returned to work at the end of three months but the chemo I had just prior to surgery messed with my brain so I delayed my return.

Larry, I know you are anxious to be able to return to work as soon as able, following your surgery but would caution you to take it slow on the lifting and hard, physical work. I think the guys will agree with me. Don't expect too much from yourself. I think this surgery takes alot out of most folks, no matter which diversion you choose and the healing process simply takes time and patience. If you try to rush the recovery period, you might find yourself with complications and we sure don't want that to happen. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

Please Log in or Create an account to join the conversation.

14 years 9 months ago #26810 by mmc
Replied by mmc on topic Newly diagnosed (6/19/09)
Larry,

Here is some info I found. You doctor may be able to give you a copy of his post-operative care sheet now rather than waiting.

The following is a cut and paste from: www.flinturology.com/radcyst_ic.shtml

Also, if you haven't already been directed to it, here is a link to the Cleveland Clinic site that explains the diversions and typical recovery times. my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_Urinary_Reconstruction_and_Diversion.aspx

Best of Luck! Keep us informed and keep the questions coming.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

14 years 9 months ago #26808 by maz
Replied by maz on topic Newly diagnosed (6/19/09)
Thanks to all for your input. Yesterday I was at the hospital for pre-admission testing (2nd time in less than a month) so was different.
Met me ET (stoma nurse)she was very informative, gave me a lot of info, my wife was with me and got a bit distressed, she she was worried how I would deal with it. Wish I knew if that were true. I am fairly comfortable, as goal is getting on with LIFE an work.
I haven't approached VA yet, this is all thru Blue Cross.... but I plan on contacting VA.
Also today I am emailing my urologist, and asking a few questions
1-I'm ok with Ileal, but why is it his choice, 2-how many of each of 3 options has he done 3-he has already told me minnimum week in hospital, but
a-when can I eat, b-when can I lift 75 pounds (must be able to to return to work) and return to work c-how long before we know if CT showed everything and I'm open 2 sugestions. Bless youall

Dx-11/12/09 pTa G2
Mitomycin C x6

Please Log in or Create an account to join the conversation.

14 years 9 months ago #26803 by RAH
Replied by RAH on topic Newly diagnosed (6/19/09)
Larry,
Pat let me know about your post and since I just logged on, it looks like you already made your decision.
I have an Ileal Conduit. I was slated for a NeoBladder but during surgery there were challenges that caused the surgeon to go with Plan B.

I am satisfied with my diversion. I feel that I can do everything that I could before. My recommendation if it is not too late is talk to other surgeons to get their inputs on the different diversion.

If you choose to go with the Ileal Conduit, I am more then happy to provide my experiences, lessons learned, and advice.

Good Luck

Rick

Please Log in or Create an account to join the conversation.

14 years 9 months ago #26799 by Patricia
Replied by Patricia on topic Newly diagnosed (6/19/09)
Larry ..it looks like you're committed to this doctor for the surgery without a second opinion. Do you know how many cystectomys he has done? This is really important and hey you might be with the right person ...i just want you to be aware of what an intricate surgery this is and you want a highly qualified surgeon and institution to back you up. Honest i'm not trying to rain on your parade.
i understand your wifes concerns...i've seen it too many times..with the men they ignore the blood...with the women they see someone about it and get treated for a UTI........way too many delays.
Unless you've got 10 thumbs you should be able to handle an ileal conduit.
pat

Please Log in or Create an account to join the conversation.

14 years 9 months ago #26798 by maz
Replied by maz on topic Newly diagnosed (6/19/09)
Patricia: Thanks again for directing me to this site. no I'm not involved with VA yet,possibly later. I was employed b4 dignosis, and fellow workers and the Company are helping me stay up to date with insurance. My disability insurance from work is giving me a whole 5o% salary, but we will deal with it. The big thing is to win this battle.I am confident with the Ileal, but today at my preadmissions my wife cried, sid she was worried about the way I will doeal with this,true or not true???? she is still upset about my waiting when the bleeding first started 1- 1 1/2 yrs ago. I met my stoma nurse today, she had answers to all my questions, seemed to very well at her job, and a very caring person. Will keep you posted.

Dx-11/12/09 pTa G2
Mitomycin C x6

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne