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5 years 1 month ago #45446 by GKLINE
Welcome to this forum.

Sorry you need to be here.

But this is the place to ask questions, Rant, and Just hang out with people who have the same concerns.

I am 5 years cancer Free and here is to hoping you can be too. I was only 53 when I was diagnosed. I have a neobladder and it has worked out pretty well for me. But every person is different and getting a second opinion is important. I just hope they make their decision based on the BEST procedure..... Not your ability to pay.

Please keep coming here and venting. That is what we are here for.

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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5 years 1 month ago #45426 by motomike
Hi Jack, I'm sorry that you are in a bit a medical fix but you have come to the right place for info. One of the big problems with cancer is there just isn't much "public" knowledge about it. When I say "public" knowledge" I mean that most of us just don't know much about it. I is a bit complicated. The media likes sound bites and easy medical things to show the public. Much of what is being suggested for you has been done for many years. When I first heard of this and studied up on it on the internet I was amazed that the medical people could take my cancer bladder, throw it away, and give me a stickon plastic bag to do the job. (why not- my teeth are plastic and they work just fine!) Well, to make a long story short- they did that over 4 years ago and I go in once each year to hear that cancer has not returned. There are many of us here who can advise you and guide you in dealing with having a goofy plastic bag hidden under you shirt. If that is the one you chose we can answer lots of questions later. For right now I found it was helpful to take notes when I had Dr. visits. That way I could surf the inter net to beef up my head. Then I could ask better questions when I had my next appt. Ask anything. That's what we are here for.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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5 years 1 month ago #45425 by sara.anne
That is very good news. You need a doctor who will be with you throughout your journey...not just in the OR...and you seem to have found one. And the fact that he was able to answer your questions about the appropriate diversion is very important.

You do have a hard road ahead, but remember that the odds are that you will be very successful. And yes, please keep us informed about your progress. There are lots of others here, perhaps not posting, but reading, who can also benefit from your experience.

Sara Anne

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

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5 years 1 month ago #45424 by 1995fxsts
My consultation yesterday went much better. The Dr. I saw was much better. He answered most of the questions I had about my condition before I asked them. He also said that because of what he read in my medical record that a stoma and bag was the best option for me. Due to the way the cancer progressed after BCG treatments. He does 50 to 60 of these surgeries a year. I left his office feeling like a real person/patient, not just a number. Much more comfortable.

I don't have any type of medical insureance (self pay) and when I told him this he just said that it didn't matter he would take care of me first and worry about payment later. He can't do anything about the hospital though, but he is send letters to the state health care system to help expidte my approval.

Between talking with him and the advice here I feel much more comfortable and positvie about my chances of beating this. thank you for your input and concern, I will keep up dating my progress.

Again thank you both.

Jack

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5 years 1 month ago #45422 by sara.anne
One of the acknowledged experts in bladder cancer is in Phoenix....Dr. Donald Lamm
http://www.bcgoncology.com/drlamm/
For example, he is the one who developed the BCG protocols.

I do not understand why the doctor said what he did about neobladders. There are patients for whom they do NOT work well, women for example. But I have never heard the statistic you quoted.

Time to see someone else!!

Just my opinion.

Sara Anne

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

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5 years 1 month ago #45421 by 1995fxsts
First of thank for the welcome.

I live in northern Arizona. My Dr. here refered me to a surgen at the U of A medical center in Tucson. I went and had a consultation with him. He and another Dr. there work together with this and from the information I got, they do alot of these. But the "bedside maner" I felt like a cow going to slaughter. I have an appointment tomorrow in Phoenix with another Dr. for another consult.

My urologist wrote in his last assesment after my visit said, TURBT again With high grade T 1 disease, malignant ureteral obstruction, bladder neck disease.

The Dr. in tucson told me that with a neo bladder my chances of having to have more surgeries was about 50/50, if I went with a stoma and an external bag my odd got much better.

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