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JUst Found Out That I Have Stage 3 Bladder Cancer

blondie01
Posts: 1
Joined: Aug 2004

Hi All,
I am a 56 year old female with T3 stage 3 bladder cancer. I had surgery last week that was supposed to be be for a superficial papillary tumor.
It turned out to be worse.
OK I have been reading everything that I can Get my hands on about my cancer and the neobladder.
I have a 10 yearold so I have a lot at stake here.
I have had a hyterectomy 10 years ago, so I guess that could be good or bad. This particular surgeon told my family right after the surgery that he had got it all, but on Friday the 13th told me it was a T3. He said it was the smallest T3 he had ever seen. What exactly does that mean I wonder. Anyway, I called my husband to come to the hospital and he asked to speak with the doctor.
The nurse came back in and told us the surgeon had said he would talk with us next week when we had an appointment.
Needless to say we called a friend who is a doctor and he made an appointment for us to see his own urologist. This urologist is the one that operated on President Reagan. I faxed a permission slip to medical records at the hospital where I had the surgery in order for them to to send them to the new Doc.
So, here I am looking for answers to questions that I am not sure of.
I have to wait until the new Doc gets all of my reports.
From what I have read am I correct to assume because the original surgeon said T3 grade 3 that I am going to lose my bladder?
Would it make a difference if the tumor was localized in the one particular area. Or if it had not went completly through the bladder wall.
I am so confused and angry that I got a surgeon that was not interested in answering any of our questions when he gave us the news.
One of my questions is how is it with the neo bladder? How long was the recovery? Are there lingering problems? How often do you need to catherize? When you do catherize is it painfull?
How do you manage when you travel?
Anyone that has had a neobladder please let me know.
Thanks Patti (Blondie)

AuthorUnknown
Posts: 1564
Joined: May 2006

Hold on. Take a deep breath. From What I have read, you are doing all the right things. This new urolgist will get on top of things.

I am a 51 year old female who has TCC or bladder cancer since 1997. Right now I am Stage 3 T4. I go to the Mayo Clinic. I have has 27 surgeries, 6 of which were major and two chemos. They removed my right kidney, 8 surgeries on my bladder and then they took it. TCC traveled to my left lung, they removed that tumor and gave me chemo. It came back again and they surgically removed it. I am currently cancer free.

OK, here are some questions to ask your urologist. What kind fo bladder cancer do I have? There is TCC, transitional cell carsonoma, and RCC, Renal Cell Carsonoma. CCC, Clear cell but children get that. and I am sure there are other types. Find out what kind you have and research it. Who is doing the current research for my type of cancer. Then go to the clinic doing the research.

I have a urostomy. They removed my bladder in 2000. I have traveled all over the world, so one gets used to the ostomy. I know people who have the inside bladder. Some have had problems, others not.
Knowledge is Power. Learn everything you can about your type.

I know you mind is racing, but you are on top of it now. If I can be of any help, let me know.

tmargaret
Posts: 2
Joined: Aug 2004

Hello.I was diagnosed with bladder cancer with an invasive T3 tumor this spring.I had my bladder removed, no signs of cancer outside the bladder and have a neobladder.So far, it is working very well for me.I'm grateful that it was an option and that the second urologist I consulted recommended it strongly relative to quality of life. There's no catheterization involved; it's important to drink plenty of fluids and empty the bladder often so it doesn't get too stretched out. I go for a cat scan and checkup next week and am anxious but positive.

duke777
Posts: 1
Joined: Sep 2004

I had a neo nladder done in March/03, it was the best choice for me. I am 59 yr. male, it is unbelievable what they are able to do. With a bit of pushing i void very well. Only problem for me is i have to remember to urinate, since u dont get the same sensation like before. If i wait too long i feel a bit of pressure in my pelvic area. There is no other option as far as i am concerned unless u r not a candidate for this proceedure. The neo bladder allows me to live a normal life with hardly any side effects if any at all. I am fortunate in that i can sleep thru the nite and not wet as i have heard others might. I hope by now all is on track for u, i think it is important to get it done quickly. I had follow up chemo for 4 months. Good luck

Blackhill's picture
Blackhill
Posts: 4
Joined: Aug 2004

Patti,

I had a cystectomy and neobladder construction this past February. There is life after cystectomy! My neobladder works better than I ever could imagine. I do not have to catheterize as I had feared. In fact, my worst fear (incontinence) did not happen.

I've got a page on this site (Blackhill) and I've listed some sites on bladder cancer you may find helpful. Email me if you would like to talk further.

Laura

eyes2
Posts: 13
Joined: Dec 2003

Hi Blondie01
Just read your message on CSN from August was wondering if you ever had to have your bladder removed and if you got a neobladder. I got a neobladder in Feb 04 and self cather I also needed two bladder slings I am 52. If you want to talk you can e-mail me at mariann04@sbcglobal.net

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

Just to let you know, you can always email this individual at through their CSN internal email account by clicking on the envelope icon next to their original email. That way if they are no longer checking this discussion board they will know that you would like information regarding their experience.

I would also like to let you know that posting your personal email address on unrestricted areas such as discussion boards exposes you to hundreds of thousands of users, is searchable by internet search engines and increases your chances of contracting one of the new strains of Internet viruses, spiders, etc. One of the benefits of the CSN is its private and secure email system restricted to registered users. It includes a feature that sends automatic notifications to your personal email any time you receive new CSN email. This user preference is listed on your CSN profile page.

Take care and be well,

Dana
CSN Dana

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