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Newly diagnosed and new to the forum with questions

9 years 5 months ago #47412 by rbmc
Replied by rbmc on topic Newly diagnosed and new to the forum with questions
Hi Bad. Getting told that news would affect your cruising style. But only because removal is yet more new unknown territory. Read more around here, you'll find it to be a successful procedure to be cancer free, if necessary. And your route is including some very good information, including a second opinion. From what I'm reading, you only had one round of BCG, and they are already talking about chopping? I'm not a doctor, but that seems premature. Sounds like you have the Cysto due in about 4-6 weeks now(?)That may determine if you want/need a 2nd opinion. Your battle plan looks good. Wait for that next piece of the puzzle, then you can make choices on how to proceed. Will bet you get better answers/support right here than that from generic on-line looking. Come back again.

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9 years 5 months ago #47408 by GKLINE
Replied by GKLINE on topic Newly diagnosed and new to the forum with questions
Too bad
(I just had to do that! I couldn't help myself)

I am truly sorry to have you here. Don't get me wrong, I like having you here, but this is a club we actually want you to quit and move on. As in cure

You are one of the few who seem to have a very firm grasp on your treatment and prognosis. You are indeed asking the right questions and looking forward to the next steps. Keep on doing exactly what what you are doing. You are doing fine.

I am here just to tell you that there is indeed life after bladder removal. I hope that you don't have to go that far. It appears as though you are one of the lucky ones that caught it early and the treatment is for BCG treatments instead of surgery. Let us all hope that you need not go further to surgery and bladder removal. But if you have to, I am here to say that there is a BIG life after removal.
But, and it's a BIG butt, I hope you can maintain with BCG.

Sincerely
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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9 years 5 months ago #47405 by badblad
Replied by badblad on topic Newly diagnosed and new to the forum with questions
Thank you Sara and Alan,

I went to see a "cancer navigator" today. She gave me names of several Urological Oncologists in my area. Should the high grade tumor repeat I am armed with names of doctors who can give an informed second opinion. It was also comforting to find out that if the worst comes to pass, I will have up to 3 months to decide where and what style.

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9 years 5 months ago #47403 by Alan
Replied by Alan on topic Newly diagnosed and new to the forum with questions
Bad,

I was in a somewhat similar situation except I only had one tumor episode. My URO indicated that should it have come back quickly he recommended bladder removal. Not a pleasant thought. I have not had to face that and hopefully you won't either. After 6.5 years free they probably now would say a round of BCG again. For peace of mind, most of us say get a second opinion at a major bladder cancer hospital, one that sees a lot of BC, perhaps a teaching hospital. My backup is MD Anderson in Houston as they are 2.5 hours from where I live.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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9 years 5 months ago #47402 by sara.anne
Replied by sara.anne on topic Newly diagnosed and new to the forum with questions
First, welcome to a club you didn't want to join! I can really appreciate your topic title...."with questions." You have just discovered one of the "dirty little secrets" of bladder cancer...it tends to come back.

BCG is currently the most effective treatment, especially for high grade. I HOPE
that now that you have finished the six initial treatments, your urologist has scheduled you for a series of maintenance treatments. These have been shown to increase the effectiveness of BCG significantly. There are other drugs that are used, such as Mitomycin C, but they are not as effective and are usually used when, for some reason, BCG cannot.

Don't agonize over the statistics. You can find statistics all over the map on effectiveness. I have seen some that are better than the 60% you quote, and maintenance treatments improve on those significantly.

Finally, BE SURE TO KEEP YOUR CYSTOSCOPY APPOINTMENTS. If there should be recurrences, you want them found early. It is much premature to be overly worried about bladder removal (easy for her to say!) because the odds are that it won't happen. But if it does, and if the recurrences are caught early, it IS the real cure. There are many who regularly post on this Forum who live very full lives without a bladder...car racing, scuba diving. It would not be the end of the world.

Be sure to ask us any questions you have.
And best of luck to you!!

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

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9 years 5 months ago #47401 by badblad
Newly diagnosed and new to the forum with questions was created by badblad
This is my first post. I am a 63 year old male. I was actually diagnosed in Jan of 2013. I had the tumor removed. It was TA low grade. Nine months later a small tumor was seen during the cysto and cauderized in the office. My next cysto was March of 2014 and I was all clear. I was ecstatic. September I had another cysto and in just 6 months a tumor had grown that required TURB. This was graded TA high. I have just finished 6 weeks of BCG. When I asked my Urologist if another tumor occurs can we just remove it. His reply was yes but if it is high grade, I should have my bladder removed. I am scared and confused. At this point I can't grasp the idea of life without a bladder. Since the BCG is only 60% effective, are there any other options?

I have been cruising along with the naïve idea that this cancer would just be controlled. The reality of what I am facing has hit me extremely hard.

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