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I'm NUMB!

4 years 10 months ago #45851 by Alan
Here is a good article in diversions: http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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4 years 10 months ago #45843 by GKLINE
Yes
We are now in this with you. Can't get rid of us now.
Sara Ann knows her stuff.
Please follow her lead to a bc hospital that manufactures a cure as a regularity.
Don't let someone experiment on you.
You want someone to follow a proven protocol and save your life!

George

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]

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4 years 10 months ago #45838 by sara.anne
This is the time for a second opinion, AT A PLACE THAT SPECIALIZES IN BLADDER CANCER and that can offer options with regard to types of surgery. I know of no "alternative" treatments that have any effect whatsoever at this point. The advice you are getting here is right-on. You need to find a place that does LOTS of these surgeries. For-profit CTA is, IMHO, not one of those places. If you can do it, places such as Memorial Sloan Kettering, Johns-Hopkins, USC, MD Anderson...and there are dozens of others depending upon where you live. Check out the Treatment Finder on our front page.

While time is of the essence, you DO have time to seek a second opinion (which may very well agree completely with your current uro...but you will feel much better knowing that).

We are all with you in this!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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4 years 10 months ago #45837 by GKLINE
Rheba

First of all, Catherine is right about the neo bladder being a "guy" thing. It appears as though this may not be the best thing if you have to have your bladder removed. So follow her advice for all things female.

But! bc does not discriminate with gender. You need to get that cancer out! If they take the tumors out and you go back and it is NOT muscle invasive and you have clean margins....... Yo can have BCG treatments and keep your bladder.
If they find ANY cells with cancer........ Get that ugly bastard out of there!
If it has been muscle invasive and they need to use Chemo or radiation, that will usually come first and then surgery. The type of diversion is up to you and your "EXPERT" Surgeon.

As for "alternative" care. I have only one thought. bc is a very aggressive cancer. Once it gets out of the bladder, it is big trouble! If you think of the environment that it lives in....
If the Dr. start talking about "alternative medicine" and saving your bladder? Get to a bladder cancer hospital for a second opinion...... NOW!
I know that some people are attached keeping their bladder..... It is an ugly organ and if it needs to come out.....IT NEEDS TO COME OUT!
We have all watched with concern as someone searched for "someone" who would give them any hope of keeping their bladder. Time is not on your side with bc. I went from.... You have some blood in your urine to Bladder removal in 60 days! I may be an exception, but I didn't want to give those little cells a chance.

As for the chance of infection after RC...... It is a possibility. You need to go to a place that has seen it all and can take measures. I mean.... A Surgical bc assembly line. I want you to have a Dr. who has seen every bc scenerio and is prepared to deal with it all.

Please find a bc specialist who will take care of you. Will be aggressvie and get rid of it.

Oh, I am not perfecr in every way. I still think about how this disease changed me..... every day. I have some incontinence at night. I have some trouble "going" at times. But this is a small price to pay for Living.

Sincerely
George

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]

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4 years 10 months ago - 4 years 10 months ago #45831 by CatherineH
Hello Rheba... What an impressive itinerary you have ahead of you! George is right, you need to get busy kicking bc's butt!

I saw your question about the neobladder. Many of the women here who have had RC's opted for what is called the "Indiana Pouch" which is also a continent diversion (no outside bag). A section of intestine is used to fashion a pouch inside your body but instead of being attached to the urethra as in the neobladder, it is attached to a stoma in the abdomen (sometimes naval). You do have use a catheter to empty the pouch every few hours and after some weeks/months of "training" it seems to settle in enough to get a good night's sleep with one/two times to get up, depending on how long you stay in bed. We have people here who lead very active lives with their Indiana Pouches and after their recovery and adjustment period, it is just their "new normal".

The neobladder generally works better for men due to the assistance of gravity aiding in emptying. Women tend to have more complications with it. As you discuss options with your uro, inquire how many of each type of diversion he has performed. It seems sometimes they may recommend the procedure they are most familiar with. As George (gotta love him) pointed out, radical cystectomy is a BIG surgery and you want the best surgeon you can find doing it. That may or not be the person who has diagnosed you.

As always a second opinion after all your tests are back is a strong option to consider. If you let us know where you are located, perhaps some suggestions can be offered to you from the members if you are not already at a major bc center.

Sending you more gentle {{{hugs}}}...

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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4 years 10 months ago #45828 by Alan
George is living proof that life can and does go on after BC & a cystectomy. To add food for thought. In the past two months I have had two friends with brain tumors and their prognosis is not near as good as us with BC! While I didn't have to have a diversion, I try and keep up with things in case something should change. The only extra advice that I add, be sure you have someone doing the surgery that he/she is doing a high number a year. So many do just prostates and bladders are a sidelight. If your insurance allows it, a major cancer center that specializes in these.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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