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8 years 6 months ago #36957 by CatherineH
Hello Charlene... I just wanted to welcome you and say I am sorry about your diagnosis. Those are certainly words no one ever wants to hear, but after the shock wears off somewhat, this site is such a wonderful place for valuable information and warm acceptance and encouragement, as you have already found out.

I can't offer anything about your upcoming surgery since I have not had an RC, but just wanted you to know there is one more person in your corner as you start down this path. Sending you my best wishes and hopes for a good report on your scans.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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8 years 6 months ago #36951 by sandie
I did not have to go through chemo or radiation before the surgery. So my recovery may have been quicker than some others. I also had plenty of time to get used to the idea of a RC because I had bladder cancer for 9 1/2 years. The biggest problem after surgery for me wasn't waking up the colon (no colostomy) but the appetite/nausea/gas. It was just hard to eat - you are on liquids for a while, then a soft diet. I'm still finding I can only comfortably eat a limited number of foods, so I imagine if you throw in chemo it would be really difficult. I know Melodie on this site had chemo before her Indiana pouch surgery and she has been mentoring me. You may want to look at her website. It is bladdercancerwarrior.com.

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8 years 6 months ago #36950 by CharleneMc
ahhhhh....big sigh of relief...thank you Mike!

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8 years 6 months ago - 8 years 6 months ago #36949 by mmc
Ack! No colostomy!!! They take out a segment of the intestine and sew (or staple) it back together. Waking up the intestines should be a matter of days. Chew gum the same day after surgery. Walk, walk, and walk. The more you walk, the more it helps stir things up with the intestines and get them going again. Colostomy? No, no, no... :)

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...

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8 years 6 months ago #36947 by CharleneMc
Sandie, thank you. Its good to hear from someone who is only weeks ahead of me in the process. I need mentors at this point I think.
My uro is a surgeon who did a fellowship in rebuilding bladders, so I think I am in good hands.

And Mike, yes, at this point, I am leaning towards the Indiana pouch. I think it it would be a lot easier for me than to find the hole if I need to catheritize. :P I like to see what I'm doing.

Sylvia, its heartening to hear from someone who has had 16 years experience with this thing. I suppose you just work it into your daily routine and it all becomes the "new normal".

I am waiting on pins and needles for a bone scan and pet scan to be sure it hasn't metastisized, before I continue. My chemo appt is on Friday.

Sandie, did you have to go through chemo and radiation before your surgery?
Do you have to deal with a colostomy until your bowels "wake up"?

I am looking forward to all the "gifts" that going through an ordeal of this magnitude are said to bring. Right now the darkness seems to be obliterating the light, but I know that its there.
Maybe I'll start journaling.

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8 years 6 months ago #36944 by sandie
I can't answer about neobladders but I don't think they are a good choice for women. My surgeon said if I chose a neobladder I would certainly have to catheterize it and, to me, that would be real difficult because of the position. The Indiana pouch always needs to be catheterized to empty it. It is internal. My stoma (opening) is in the belly button. It doesn't hurt to cath, it is not difficult to do. I don't think infections are very common. It is suggested that you rinse with saline once a day. I just had the surgery 5 weeks ago so I am rinsing with saline 2 times a day (a very simple procedure). I get up 2 times at night to cath but in a few weeks I hope to be down to once a night (and I was getting up once a night before the surgery anyway). The first 2 weeks post op were hard but things get better! I do think the choice of surgeon is very important so do some research on that. You should feel encouraged by all the people on this site who have been through this and find afterwards that life not only goes on but gets better!

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