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bladder cancer

7 years 4 months ago #38846 by dieseldoc
John. Were are you in missouri, I live around Ft. LeonardWood. I've had BC for about 6 years now, mine was low grade to. I did the BCG treatments for 6 weeks and that was it , haven't had any more ,but my cancer keeps coming back about every 9 months to a year.

T1,NO,MO battling bladder cancer since 2005

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7 years 4 months ago #38843 by johnm126
Hey patricia, I plan on finding out next week exactly what stage etc, at the time I didnt want to do anything but put faith in the doctor.when I had biopsy they never really saw anything, the doctor told my sister he was expecting biopsy to come back negitive because of not seeing anything. so anyway right now Im trying to gather information and knowledge so when my next doctors visit comes up I can have lot a questions etc to ask him.thanks to everyone here responding.It is helpful

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7 years 4 months ago #38842 by Patricia
John,
you really need to know what your stage and grade was at initial TURB. That report is available to you. I'm assuming if you had BCG you had a higher grade or multiple tumors that were non-invasive...but the standard of care is a second TURB. I'm guessing your cysto's have been clean as far as the doctor can see with the naked eye.
A good second opinion if you can get there is in St. Louis ..Dr. Adam Kibel
http://www.siteman.wustl.edu/docprofile.aspx?memid=932&type=patient
pat

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7 years 4 months ago #38841 by sara.anne
Dr. Donald Lamm, now in Phoenix, AZ, is one of the US experts on treatment of bladder cancer with BCG..(When I first was digging into this, and found Dr. Lamm's web page, I asked my uro about him. He told me that Dr. Lamm is the REAL THING and that his recommendations are the gold standard for BCG treatment.) Go to
http://www.bcgoncology.com/treatment/bcg.html
And you can read, in laymen's terms, about the recommendations.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 years 4 months ago #38839 by johnm126
Thanks Sara. I'm learning now something I guess I should have done from the begining was to ask questions and read.I am from Missouri for those that ask.And yes I do believe it was the Bcg instillations,I took them for 6 weeks .My question now it what are you calling maintenance treatments,are you saying every 3 months you go through another round of the bcg instillations?and if so does anyone have problems with the insurance companys paying for this and how could I convience my doctor on this ? thanks again this comming week I will deff talk to my doctor and get more information.

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7 years 4 months ago #38836 by sara.anne
John, one of the primary problems with bladder cancer is that it can/and does come back. I assume that you had BCG instillations after your diagnosis. This works very well for some types of bladder cancer and is not so effective for others. The recommended protocol is to have six treatments a week apart, and then maintenance treatments about every three months for up to several years. The statistics show that the chance of recurrence is MUCH less than with just the one series, assuming the type of bladder cancer you have is sensitive to this.

The recommended treatment also has an exam (cystoscopy) every three months for two years, before transitioning to every six months.

Your urologist will do cytology (checking for abnormal cells OR infections) on your urine with every exam. Not all do a FISH test each time if the other tests are negative. Cytology tests are not perfect, and can give both false positive results and false negative results on occasion. This is why doctors need to use all the other tests AND their own experience.

We always recommend that patients seek a second opinion at a center that treats LOTS of bladder cancer, since not all urologists are as familiar with the current practice in this area. The very BEST thing that would happen is that the cancer center would tell you that your doctor has everything well in hand and that you are receiving the very best level of treatment. The other thing you might discover is that you are not receiving the best treatments available. Then you would be able to make some educated decisions about your course of action.

While early, low grade or even high grade bladder cancer is very treatable, it can...and does...return. This is your life you are dealing with, and it is important to have the best care you can get.

If some of us seem a bit "pushy" it is because we have been there/done that...right where you are now...and learned some of this the hard way.

Sara Anne

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

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