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denial..BCG therapy
Hi I am new to this site. I had been blessed earlier by receiving this site and getting a chance to talk to Cynthia. Awesome lady. I had bladder cancer surgery in March. My doctor removed a tumor from the inside of my bladder and quite frankly told me that he “got it all”. It was non-evasive cancer. My doctor told me at the time that to prevent or to help prevent the cancer from coming back I needed to have BGC therapy. I put this off, thinking that I didn’t really need this therapy and that I was cancer free, so to speak. I get a letter today that basically said,” I had a life threatening illness and that I needed to have this therapy done” It brought back all of those memories of hearing the word “cancer”. So here I am in denial that I need to have this done. I have questions that I don’t know the answers to. I have 2 grand babies, that are 2 and 3 years old and are the loves of my life. I can not and will not put them at risk of getting ill from this therapy. My life is not as important as their lives are. Can this therapy harm them? Is this actually putting the TB virus into the air? Can my husband get sick? We only have one bathroom. How clean must we make it? Can people visiting my home get ill? I am still in denial that I even need this therapy at all. I need help in making this decision.
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9 Replies
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The devil is hiding behind denial waiting for the cancer cells to move to other parts of your body and kill you faster. Denial is evil. Denial is dangerous. Denial is a killer. Denial is stupid. You will find no one here signing about wonderful DENIAL.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
I would be a little careful about the recommendation of depending only on those little tablet that go in the toilet tank. My uro’s instructions, and that of the material that came with the BCG itself, says “1 cup of bleach.” Bleach is dirt cheap, especially if you buy the generic kind (it is all the same anyway). No sense in being careless for no reason.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Alan wrote:
I found that putting release tablets in the water basin (tank) were an easy solution. That way with each flush there was an active cleanser and didn’t have to pour after every trip!. As the other ladies have indicated, it is good to be safe but, as my URO answered my concerns several years ago “If it were extremely dangerous he wouldn’t let his staff handle it”. Be careful and cautious but, you’ll be fine!
Thanks for the good idea, and advise.
Please consider getting the BCG, it can, and has been handled by many others with no problems. You can’t run from this disease, you have to fight it or it will surely win.
You have to show your children, and grand-children how even cancer can be controlled, if you keep fighting.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
“Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
First, you NEED the BCG treatment.
Second, it is NOT a choice between your life and your grandchildren’s lives, or your husband’s life or anybody else.
Third, ask your doctor some of these questions.
Where in the world did you come up with spreading TB through the air if you got BCG.
Fourth, Tarot cards are just make believe.I can’t believe you are considering throwing your life away based on such crazy misinformation.
The fact that you skipped it this long isn’t good but the fact you are least trying to find out facts now is a positive sign.
Do you think more than one in ten trillion people would ever do BCG if it was going to kill their loved ones???????
Don’t let your denial prevent you from finding out the facts. That CAN kill you.
Don’t let your grandchildren drink from the toilet on the day of your BCG before or after putting the bleach in it. Then they will be fine.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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Holy Cow!
And My answer is!
GET THE BCG Treatment! Save Your Life!
Be there for your Grandchildren for a long time!
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]
I found that putting release tablets in the water basin (tank) were an easy solution. That way with each flush there was an active cleanser and didn’t have to pour after every trip!. As the other ladies have indicated, it is good to be safe but, as my URO answered my concerns several years ago “If it were extremely dangerous he wouldn’t let his staff handle it”. Be careful and cautious but, you’ll be fine!
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.
By all means, please go thru the BCG. Saying you life isn’t as important as your grandchildren is how all grandparents think (I know I do:), but this is just a bladder wash as Sara said. I had 24 BCG washes, and I am five years cancer free.
Just look at those darling babies and think how much you mean to them! You have a lot of years ahead to have many happy memories with them.
I just kept a gallon bottle of clorox in the bathroom the day of the wash and added two cups after urinating – let it sit for 5 minutes – then flush. As Sara said, drink plenty of liquids after the two hours and the BCG passes much quicker.Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
I was so eager to answer some of your questions that I see that I didn’t pay attention to the last part of your inquiry.
You were concerned about having only one bathroom. The procedure will most likely be that after the treatment, you will be told to try to hold it for two hours, or as long as you can up to that time. For the next four hours or so, every time you urinate, they ask that you add a cup of bleach to the toilet and wait a few minutes for it to kill any residual BCG before flushing. After that time, you can clean the toilet as usual and everything should be clear.
You will not want your grandchildren around during this time, and you definitely won’t feel like having friends over! For several hours after the treatment you will have urgency and probably feel like you have to go every five minutes!! You should drink a lot of fluids to help wash this through. There may be a bit of bleeding (the lining of the bladder is sloughing off a bit…this is what you want to happen.) And you may feel crampy.
For a day or so after you may feel extra fatigued. All these symptoms mean that the stuff is WORKING. And these minor side effects get a bit more noticeable with each additional treatment. The purpose of this treatment is to REALLY kick up your body’s immune response in the bladder, so it becomes a bit more sensitive each time it is challenged. If the symptoms become too uncomfortable, your urologist can reduce the dose. By the time I finished I was on 1/3 the original dose; even down to 1/10 has been used successfully.
Here is a very good source to read up on BCG therapy:
http://www.bcgoncology.com/treatment/bcg.html
Remember, that ALL the possible side effects are noted. Very few people have these. As you know, every drug has side effects and, if we read them all, we probably would be afraid of taking anything!
Again, ask all the questions you can think of….there are MANY of us here who have done this very successfully.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Oh if you only knew how lucky you are, and here you are almost throwing it away!!
You had a bladder cancer that, apparently, was found early. The problem with this type of bladder cancer is that it can, and does, come back. Which is why BCG treatment is such a good idea. It can reduce the chance of a recurrence dramatically. I was diagnosed with high grade cancer, had BCG treatments, including maintenance treatments, and am now 4 years cancer free.
BCG is NO BIG DEAL. A small amount of a modified tuberculosis bacteria (not viruses) are rinsed into the bladder. You hold it for about two hours, and then pee it out. Your doctor will give you instructions about cleanliness. By the next day you are practically normal. The bacteria (which were used in the 1920’s to vaccinate children) are only in your bladder or in your toilet. There is nothing to get into the air.
I probably wouldn’t want little kids around the day of my treatments; you might be a bit uncomfortable and will be spending quite a bit of time in the bathroom. BUT, assuming that the treatment is effective…and it is, more often than not, you will be insuring that you are around to see those grandchildren graduate from high school!
When I think of what friends who have had systemic chemotherapy for other types of cancers have gone through, I am so grateful that BCG is available for bladder cancer that is still limited to the bladder. This treatment is NOTHING compared to chemotherapy.
There is a lot of information on this forum and on the web site about BCG. You need to familiarize yourself with it. You will then discover that your fears do not have a basis in fact. You can then face these life-saving treatments with a smile.
Sorry if I have come down hard on you, but I want you to realize how do-able these treatments are and what they can mean to your future and that of your grandchildren. There is nothing to fear from them.
Please ask us all the questions you can think of…and MAKE THAT APPOINTMENT.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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