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BCG or No BCG with low grade cancer

6 days 2 hours ago - 6 days 2 hours ago #54332 by Alan
You are in control of your body! Nothing says (unless your insurance says otherwise and I can't imagine them saying no as this is better than ignoring then having a major bill down the road) you can't ask for 4 or 6 month checkup. Otherwise get another URO. Maybe even for peace of mind and fresh eyes a second opinion?

I am not a good reader of path reports but, "low grade, focally high grade". puts out a few flags. However, wasn't that a year ago? My URO believes on any high grade it should be considered all high grade. I am answering my advice as I type. Get a second opinion at a major bladder center or teaching hospital or a second reading on the path report.

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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6 days 2 hours ago #54330 by Win55
Since my original tumor was very large (over 30 mm) and I had multiple tumor locations on my 1st re-occurrence (10 -12 small tumors) I considered myself an intermediate risk to develop high grade cancer and thought that probably should have continued with BCG maintenance. One of the biopsies from my last surgery did come back "low grade, focally high grade". I was told that this was still considered low grade cancer and that the pathologist could not determine what some of the cells were. My doctor seems to consider me a low risk and he is probably right, but I do not trust this cancer. He also recommended me going out to a 10 -12 month between check ups which is scary as well. I am trying to stay involved in my own health care regarding this matter and sometimes I get confused at all of the information and some of the terminology used in things I read. I am willing to do what ever it takes to keep my bladder. If becoming a Vegan makes a difference then I have the willpower to do it. I also do my best to follow the recommendations for supplements and diet that Dr Lamm has published. My doctor says that diet and supplements probably won't help but it won't hurt either.

This website is very helpful to me in finding out what other BC patients are going through and how they are being treated. I do appreciate all of your comments and the information that is published on here.

Thanks!

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6 days 5 hours ago #54328 by Alan
I am simply concurring with what Sara Anne posted. On a side note. I was able to get my annual physical 6 months apart from my annual cysto years ago and have had the urine cytology done at my physical to give me an every 6 month non invasive check. Cytology is not perfect creating some false positives but, it is an additional option.

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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6 days 7 hours ago #54326 by sara.anne
Generally, BCG is not recommended after diagnosis of low grade bladder cancer because it is not as effective in low grade and it is being "saved" as a BIG GUN should it become necessary. If, however, it returns, often BCG is used.
This appears to be the case in your situation.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 days 9 hours ago - 6 days 7 hours ago #54322 by Win55
What are the deciding factors that determine when a person with low grade badder cancer should receive BCG and when they shouldn't? I have been to three different doctors and one originally said BCG (then changed and said no BCG after two 6 week installations) and the other two say no BCG.

6/2014 - Initial diagnoses: Low Grade, Slow Growth but Large Tumor, NO mitomycin after surgery
Changed doctor
7/2015- 3 month cysto schedule, all cancer free until 8/2015
8/2015 - Cancer returned multiple small spots (10-12), all low grade, mitomycin after surgery
11/2015 - Completed 6 weeks of BCG
1/2016 - One small spot cauterized in office
4/2016 - Three small spots removed, low grade, mitomycin after surgery
6/2016 - Second round of 6 week BCG
8/2016 - Was advised to not go through with BCG maintenance, new patient care recommendations
Changed Docotor
1/2017 - Cysto no cancer, New doctor agreed no more BCG for low grade,
5/2017 - Cysto, no cancer found
11/2017 -Cysto scheduled for later this month. Doctor has suggested that I go to 12 month Cysto schedule.

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