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Final Decision on Treatment

3 months 3 weeks ago #57129 by EdFlaherty
I had a TURBT for a T1HG (1.5 cm tumor). Then my first "round" of 6 weekly BCG treatments.

I went 2 years before a second tumor was found.

2nd tumor removed, second round of 6 BCG treatments was completed one year ago.
I've had 3 cystoscopies since completing the BCG and so far I'm good.


I expect if there is a 3rd tumor I'll have it removed and do a 3rd round of BCG.

My first round of BCG was easy, no side effects. I thought that there was something wrong because I had no problems. After going 2 years without finding a new tumor, I thought I was cured. But, bladder cancer is something we need to fight all of our lives.

My second round of BCG was terrible, with pain, bleeding, and bladder spasms. I had to sit on the toilet all night because I was passing a small amount of urine and blood every 5 to 10 minutes. I started taking medication for the spasms and that helped a lot. If I go for BCG again I'm going to take the anti-spasm meds before BCG so that they are already in my system and helping me

To me, what this proves is that bladder cancer treatment is something that each patient and doctor must discuss and decide what they want to do. There are so called "standards" but they are subject to individual situations.

We all need to keep a positive attitude and keep fighting. We also need doctors that we can trust and understand, doctors that help us participate in the decision making. Trusting your doctor is very important, but don'r be afraid to get a second opinion.

Good Luck!

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3 months 3 weeks ago - 3 months 3 weeks ago #57128 by Alan
All I can add is simply take one day at a time. As Sara Anne said the important stat is you. At the same time there are many studies that indicate (and I believe we have discussed this on another thread) the odds of BCG working is better than 50%! We are with you!

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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3 months 3 weeks ago #57126 by sara.anne
I wouldn't want to disagree with an experienced urologist, but I do know a lot of people (myself included) where it did NOT come back....I am now 11 years out and counting. Also know some where it DID return and they were successfully treated with a second round of BCG and it worked!! Also know some where it didn't. All the statistics in the world do not describe what will happen to ONE person...you.

Those of us like you do need to keep up with the exams since we know it can return.

Sara Anne

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

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3 months 3 weeks ago #57125 by tgrocky
Hi Sara Anne,

Thanks I really appreciate it!

The only thing that I am concerned about, my urologist told me even if the BCG treatments work on my CIS and said my odds of my tumor coming back is about 70%, so if the BCG works I still have that to worry about.

But I am just taking it one day at time.

tgrocky

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3 months 3 weeks ago #57123 by sara.anne
We are keeping our fingers crossed too!!!

Sara Anne

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

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3 months 3 weeks ago #57122 by tgrocky
Hi all,

Well as of March 20th, 2019 I went to my urologist and we discussed all my options and my urologist really believes the best course of action for my bladder cancer (Stage One High Grade with CIS) (and my tumor was very large and extremely bad cancer) is to have my bladder removed and get the neo-bladder as that is my best survival rate as he gives it 90% that I will be cancer free. I told him I really want to give the BCG treatments a try as it is a lot less invasive and if it does not work I could either at that point go with getting my bladder removed and get the neo-bladder or there are two other types of treatments that could be done by "IV" they are a trial type drug and he said it works about 40% of the time however there not much data on it as yet as it is somewhat new.

So I decided to go with BCG treatments for the next six weeks then in four weeks I will get scoped by my urologist to see if the BCG treatments are working.

So my first BCG treatment was this past Friday March 22nd and I had little pain at all when they gave me the treatment and also I received "NO" side effects at all, which I am so happy to report!

Now I just have five treatments to go and I go every Friday and after my last treatment I wait four weeks and then I will get scoped by my urologist on May 31st to see if the BCG treatments are working.

So I am praying and keeping my fingers crossed that it will work for me!

tgrocky

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