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First Time on Site with Invasive bladder cancer

12 years 7 months ago #4043 by Mike
Marylou it seems you have alot to deal with here but with the knowledge and technology there are always positive things to come to all of us. I just wanted to know this my ureter was blocked on the left side my tumor was large Stage2 G3 and and about 2-3 inches. Also the tumor had grown into my ureter thus shutting down my left kidney. The first attempt during my TUR they tried to put a Cath in well that fell out and did not work. The next day back into the OR yay and this time they put in what they called a J-stent and this opened up my ureter. I was just wondering did you ask your Dr what he was going to do to try and get that kidney working. Anyway this is what they did to me the stent in the ureter and left kidney is now functioning. I don't know if this helps but maybe you ask your Dr about this cause you are right you need to get that kidney working. Best Wishes, Joe

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12 years 7 months ago #4037 by Dixie
MaryLou,
I am a 49 yr.old female with BC. I was diagonosed in Sept. of 2005, with a cystoscope. The Dr. at that hospital(Lehigh Valley) told me he removed what he could of the tumor from my bladder but that it had gone through the bladder wall and was blocking my R ureter and I needed my bladder removed with a total hysterectomy.  He told me about the three diversions that were available but told me I was not a canidate for the neobladder.  He wanted to do the surgery the next week by giving me a stoma on my side, then I would have to cath myself every four hours for the rest of my life, followed by chemo.  I told him I needed a second opinion due to the type of major surgery he was talking about.  So my journey began.
I think having some medical background helped me out  a lot. I was a nurse and respiratory therapist but didn't practice any more. I knew I had the option to look else wear but didn't want to waste a lot of time.  I knew time was important.  I will try to keep this short because it is a very long story.  
As soon as I got home I started calling hospitals to be seen.  My first choice was Sloan Kettering in New York City which I live about 1 1/2 hrs. from.  They are one of the top Cancer hospitals in my area.  I really liked the oncologist there Dr. Bajorin.  He wanted to give me chemo before surgery to shrink the tumor and make the surgery less invasive.  Made sense to me.  Then he sent me to one of his surgeons who I didn't really care for.  She scared me to death with the explanation of the surgery.  She also said I was not a canidate for the neobladder which I really wanted.  I wanted to try to stay as normal as possible after surgery if I could.  So I started chemo the next week at my local hospital working with Dr. Bajorin at Sloan Kettering.  He just gave my local Dr. the recipe for the chemo.  I took Cisplatin and Gemcitabin for almost four months.  In the mean time I kept looking for my surgeon and trying to find out if it was possible to have a neobladder done.
I visited three other hospitals and found two surgeons that agreed that I probably could have a neobladder depending if my urethra was cancer free.  I found out later that at some of the hospitals I visited they just didn't know how to perform the neobladders or didn't feel comfortable performing them, it wasn't that I wasn't a canidate.  I was even thinking about flying to California to see Dr. Stein if I couldn't find any surgeon on the East coast to perform a neobladder.  I have done a lot of research with the three different diversions.  The neobladders in women aren't 100% perfected yet.  You take about a 40% chance of leaking or having to cath yourself in the normal place for the rest of your life.  But, I still wanted to try it.  I am a pretty active person and plus I didn't know if I could cope or my husband could with me having a stoma or bag.  I guess I am sort of vein, but everyone is different.
So, anyway I found my surgeon at Johns Hopkins, Dr. Schoenberg who I would highly recommend.  He also has such a wonderful nurse Charlene that helped me all the way. So, I had my surgery on May 25, 2007.  I am not sorry I got my neobladder, even if I am having some problems with leaking I have faith that it will work.  I still don't have a stoma.  
So, I just wanted to let you know I had hydronephrosis of my R kidney but I had no stent put in.  Dr. Schoenberg mentioned it but never did it.  My tumor was around 4cm when I started chemo and when I finished it was smaller then 2cm.  I really responded well from the chemo.  I guess all my blood work was ok with my kidney functions so they didn't do the stent also my tumor had gotten so much smaller.  I remember Dr. Schoenberg saying he hoped after the surgery my kidney would start to come back and it did.  I don't know how much but my MRI's(I can't do CAT Scans because I am allergic to the dye)shows no hydronephrosis.  Oh, by the way I was told in the beginning I was probably a T2 or T3.  Well, after all done with the surgery and I got all my path reports back I am a Stage 3 T4aNO.  I feel like I had a miracle happen that it didn't go into my lymph nodes thank God.  Don't give up it will get better and life does get back to normal.  If you have any other question please ask.
Dixie

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12 years 11 months ago #1765 by wendy
Hi Elsie,

Where are you going for treatments? I can imagine how devastated you must feel, and I offer my sympathy.

It's good you are following through and getting another opinion, I hope it's a good place because the possibility of long term survival for those who have spread confined to regional lymph nodes only is actually quite good. It is still considered stage IV but doesn't have the same dire statistics as when the spread is distant. That being said, I know people who are surviving with distant spread as well, who continue to have quality in their lives for a number of years.

Also, micro-mets are a lot better than macro-mets.

I know of women who have had this happen and who have also continued with more chemo and are effectively cured.

I agree that pre-op chemo should have done the job and this is less encouraging. But it could be that they used the wrong drugs for you, and there are different chemo combinations out there. Unfortunately most places do not to chemo sensitivity testing before hand as this is not an accepted modality yet, not considered accurate enough. Also, fresh tumor tissue is needed for testing and that is not possible for you anyway.

It seems awfully unfair, abritrary even, how chemos are applied in a 'one size fits all' kind of manner, but there isn't much we can do about this...yet.

Where are you going for a second opinion? In your circumstances it would be worth it to go to one of the top places such as MDAnderson, Johns Hopkins, USC/Norris, Mayo Clinic or some other cutting edge institution as close to home as possible.

All the best...and don't start planning the funeral yet, please!
Wendy

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12 years 11 months ago #1735 by elsie
After 3 months of grueling chemo and now recovering from the major surgery, I was just told that I now have Stage 4 aggressive cancer. All through the long summer I was told that after the surgery, I would be cured. Now I am devastated. I am going for a 2nd opinion at another cancer center and am praying for a miracle. So far, they found microscopic cells in one node and in the area surrounding the bladder. I thought the pre surgery chemo should have done the job. and I was not prepared for this shocking news.

Has anyone ever recovered from this?
elsie

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13 years 7 months ago #322 by KIRKWOODRES
MARY LOU

I HAVE BLADDER CANCER ALSO JUST NOT AS SEVERE. JUST SENDING YOU A QUICK NOTE TO LET YOU KNOW I'M THINKING OF YOU AND WISH YOU THE BEST.

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13 years 7 months ago #262 by Cynthia
Mary Lou,

It sounds like you have gone through a lot but that you have a handle on where you are going with it. I  thought I might give you a few links to other places on the web that might be of benefit to you. You already know about the BC Web Café but here is the link to sign up for its list server there are over 500 bladder cancer survivors that offer information and support to each other and could be a great deal of help to you with helpful hints before and after your surgery.

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=bladder-cancer-cafe&A=1

The site for the Bladder Cancer Advocacy Network offers some good advice for the newly diagnosed and there is a link of a sign up for a twice weekly on line support chat held twice weekly

www.bcan.org

This one is for the bc sisterhood a newly formed group that is for woman with bladder cancer

http://health.groups.yahoo.com/group/bcsisterhood/

I hope this might be of some small help. I know for me that having contact with others who understood what I was going through has been invaluable.

Cynthia

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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