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7 years 8 months ago #45417 by 1995fxsts
New to the forum was created by 1995fxsts
:angry: :unsure:
I was diagnosed with cancer about a year ago. I've done BCG treatments 3 different times and had three surgeries to remove tumors and now my Dr. says that bladder removal is next. I'm very unsure how to deal with this.

I'm 52, male, and there are so many things running through my head. I don't know anyone in the area to talk to that can help me with what to expect.

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7 years 8 months ago #45419 by sara.anne
Replied by sara.anne on topic New to the forum
So sorry to see you here, but Welcome anyway! Your latest diagnosis is NOT what you wanted to hear, I know.

This would be the ideal time to get a second opinion at a place that specializes in bladder cancer treatment. A second opinion is NOT a repudiation of your current doctor....the best possible outcome would be confirmation that your urologist is doing the right thing and is current with the latest practice in this area. The second best thing would be that if he ISN'T, you would find out what a better approach might be. My urologist told me that, if it ever came to a recommendation for bladder removal, he would INSIST that I get a second opinion. If you should wish to do this, if you let us know where you are located, some of our members might have recommendations as to places you might go.

There is a TON of information in this forum on cystectomy and the options you might have. There is also a lot of information under the Forum heading about "MEN and bladder cancer". Feel free to ask all the questions you want....someone where has "been there, done that.'

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: 1995fxsts

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7 years 8 months ago #45420 by mmc
Replied by mmc on topic New to the forum
It sure sounds like your urologist is correct and that it is time for bladder removal.

I had mine out five years ago. I still remember most of it however and I did post a lot back then asking questions prior to and after my surgery. A few of us posted a lot about our surgery and recovery. Ask us anything you need/want/can think of. We are happy to help.

Where do you live? You want someone who does at least 50 of these surgeries a year. Also, depending on the type of diversion you get, you want someone with particular expertise in that type of diversion. The more they do, the better the outcome. Lots of studies behind that statement.

You also want what is called the "nerve sparing" surgery. That is, they save the nerve bundles from the prostate. This is so you can still remain sexually active later. It may take some time for things to work properly but if done right, the nerve sparing allows for that. Of course, being alive is the first priority so getting the bladder out is also important.

You may have to do some chemo rounds prior to the surgery. That depends on the current stage/grade but it has shown better numbers when people get chemo prior to the surgery. I did not. However, mine came back after 4 and half years after my cystectomy. That's not supposed to happen but I wound up having to go through full chemo when it came back and my current status is "all clear".

It's been seven years since bladder cancer and I first came across each other. I've kicked it's butt three times so far!

Welcome to the site and please ask anything and everything you can think of. Knowledge is power and it helps to defeat worry and fear. Getting the best surgeon with high volumes of surgeries is the other key thing needed to win!

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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7 years 8 months ago #45421 by 1995fxsts
Replied by 1995fxsts on topic New to the forum
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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7 years 8 months ago #45422 by sara.anne
Replied by sara.anne on topic New to the forum
One of the acknowledged experts in bladder cancer is in Phoenix....Dr. Donald Lamm
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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7 years 8 months ago #45424 by 1995fxsts
Replied by 1995fxsts on topic New to the forum
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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