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Seeking serious treatment advice

7 years 8 months ago #43976 by mmc
Sara Anne is correct and her advice is in line with the treatment protocols advised by NCCN and those have the HIGHEST good outcomes. Whoever advised you to stop BCG and go with systemic chemo does not know much about bladder cancer. That is not good advice.

If you want supporting advice get it from a doctor at a top bladder cancer hospital. They don't track outcomes for people following the advice of a charge nurse at some hospital because it is a good idea to take that advice.

I have great respect for nurses but she should not have said what she did.

Read studies on best outcomes. Some cancers don't respond we'll to chemo at all so a blanket statement like that is just plain wrong.

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 #43936 by CatherineH
Best of luck in your chosen course of treatment. You are very fortunate to have personal connections to multiple medical experts who can advise. And, truer words were never written than it is a personal choice and the only person who can make that final choice is YOU! We all have to be the ultimate captain of our own healthcare ship.

I hope you are in that 70+% as well. Please check in from time to time and let us know how things are working out for you. There is never just one solution to any given situation.

You remind me of the Robert Frost poem...
"Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference."

Best wishes...

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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7 years 8 months ago - 7 years 8 months ago #43935 by GKLINE
And THAT is why we are here.

To discuss ALL the alternatives and Never dismiss any lifesaving treatments.

Our only goal here is that you keep on living a happy life. A LOOOOOOOONG Happy life!


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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7 years 8 months ago - 7 years 8 months ago #43927 by wjjjcm
Thanks for the response. Your question about the ugly bladder, sexual issues, incontinence, open surgery to me are simply not the big picture all though very important . All these treatments, i.e. BCG are sorta baby steps to stop the cancer and save the bladder. That's all great. BCG is a 70% success rate and I suspect removal of the bladder is probably in the upper 90% range.

The concern I have is that too many surgeons, for whatever reason, which I personally suspect is financial driven, want the bladder out. That ugly bladder you describe is what God gave me and for those reasons I want to keep. I had so many problems with the removal of the prostate that you had mentioned that at times I wondered if I made a mistake.

I understand the theory that you don't cut off your finger for just a cut. You take logical steps. You weigh the odds. Well cancer is not logical. I know people, and probably you do to, that waited and looked and hoped the steps (protocol) were the right choice. Removal of the bladder can cause other problems that are not user friendly and may or may not work. Again the odds. The bladder God gave me does work.

I'm not trying to propose to anyone anything. I'm just sharing my thoughts, my research and my decision. I may change in the end if the BCG works. However, I will be prepared to hit the cancer head on. Thanks again for your input.

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7 years 8 months ago #43926 by GKLINE

Ultimatly, you are in control of yourself and your body. The information is provided to you, and reccomendations are made, and You have the final say in your treatment.
All of this is very true. We are in control of our own bodies. You have the final say in your treatment. And I wish you well.
Fingers crossed for you and a prayer for your well being.

But, I have one question.
Why the attachment to that ugly assed bladder? Is it the the sexual effects? The incontinence issues? The open surgery? These are all risk factors to consider. But the side effects of Chemo are also very dangerous and long lasting.

I just wanted to respond to you and let you know that, Whatever you choose, we want you to get well and recover from cancer


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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7 years 8 months ago #43924 by wjjjcm
Thank you all for your advice.

I completely understand what each and every one of you are saying. I have complete confidence in my doctor and in fact after I sent out the last blog we sat down and had a two hour conference. You would be amazed as to the results of that meeting.

Regardless, I wish the very best for each and every one of you. The "Dutch Uncle" response was also appreciated, however, things have changed.

I have done a lot of research on this bladder cancer issue. I have a well respected pathologist in the family, the chair of Urology at a major hospital in the south is a personal friend of mine. I have another relative that is a charge nurse on a cancer wing in CO and 2 other general physicians in the family. Consulted all including the good people on this site. I 've come to the conclusion it's all a personal choice and only one person can make that choice. Physicians do not tell you all!!!!!. The lady that had breast cancer and then bladder cancer God Bless her. I don't know what kind of treatment we done regarding the breast cancer. But I'd like to share some additional information on this bladder cancer issue.

Please do not think for one minute that I don't take this serious. I have not given up the fight - in fact - I just began the fight and I intend to hit this problem so hard that it will be gone once and for all.

Now I know the current protocol and most of you seem to believe that's the way to go. I do to up to a point. You get 6 washes, they wait 4 to 6 weeks look and if everything LOOKS ok you start maintenance 3 washes in 3 months, look again, looks good 3 more washes in 6 months, etc., etc., etc. All along the physician wants to knock the cancer in the head back to remission. That's the Protocol.

At this point that is not what I want to happen. First of all the initial 6 week treatment is only 70% successful and they can only do it twice - then what - take the bladder. My bladder is going nowhere. We are going to kill the cancer once and for all if the initial treatment does not work and before the cancer gets out.

My Dr. finally admitted that after he removed the high grade cancer tumor he believed he got it all. But to be sure he went back in and did a TURBT around where the tumor was removed and found out I had severe dyplasia. Now to determine that he had to go into the muscle to be sure the dysplasia was in the lining and not entered the muscle. Now he tells me bladder cancer is very aggressive and I can expect to have more tumors. At least that's the odds. Well by going into the muscle and opening was created but he, the physician states, ODDS are no cancerous cells will enter that microscopic opening - you know like a microscopic cancer cell. He really just could not guarantee anything.

Well I just don't like time for things to develop the wrong way so we (The Dr and I) have decided on a new protocol. One for guys that don't want to wait and see if bladder removal is the solution.

I agreed to go through the first 6 week treatment. After that the physician will not just LOOK but do another TURBT to find out what the condition of the bladder really is. In fact I want him to take a few samples around the bladder. If severe dyplasia and/or cancer cells exists we have to make a decision. And as of right now if this first treatment does not work I'll electing full blown systemic chemo. And I'm fully aware of those side effects. I refuse to wait and see for years with numerous washes. If you are going to kill it - kill it. I know some will say well bladder removal is not that bad. I just happen to be one that disagrees with that position. So, I'm giving the treatment the 70% chance and will stay positive that with God's Grace I'll be in that 70%. Thank all of you for your valuable input. WJJJCM

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