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Just Diagnosed

1 year 10 months ago #52732 by raya
Thank you Sara Anne.

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1 year 10 months ago #52731 by sara.anne
For those of us with CIS, bcg is often like a "miracle drug." Here is a recent summary taken from the Johns-Hopkins website:


A majority of UC are non-muscle invasive bladder cancer, however a high proportion of which will either recur (40-80%) or progress to muscle invasive disease (10-25%) despite complete resection.
Bacillus Calmette-Guérin (BCG) intravesical immunotherapy is standard of care and now recommended for high- and intermediate-risk NMIBC with complete response rates of 55-65% for Ta/T1 tumors and 70-75% for CIS.
Maintenance BCG therapy is recommended after induction therapy using the SWOG schedule of a 6 week induction course followed by 3 weekly instillations at 3, 6, 12, 18, 24, 30, and 36 months.

I was diagnosed with CIS almost 9 years ago, went through BCG and the BCG maintenance protocols and have been cancer-free ever since.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 10 months ago #52729 by raya
It's been awhile since I last posted and things are moving slow. Had my 3rd TURBT at Sloan Kettering on 1-19-17. Returned this week for results and I am again shocked. They removed 4 tumors total (last Uro said 3) 2 were HG Papillary and 2 were HG Carcinoma in SITU.(last Uro/pathologist said all tumors were Papillary) The good news is none were muscle invasive and I am scheduled to start BCG on 2-17-17. As I read, Carcinoma in SITU is worse than Papillary? What are my chances for cure/remission with BCG?
Thanks

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1 year 11 months ago #52531 by Alan
Ray,

I am sorry this happened to you and I too would be unhappy. When a 1st TURB doesn't include muscle in the specimen OR is high grade a 2nd should always be done. When you have a 1st exam to work on you then know where to dig and while I am sure this requires skill and dexterity I would think you MUST get margins with muscle understanding doctors aren't perfect. I have not seen this problem crop to my memory in 8 years watching this board. SK is where I believe you need to finish this up at and let's hope that is the end of it!

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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1 year 11 months ago #52529 by raya
Confused. Mad Scared.

Had my second TURBT last Thursday 12-15-16.This was to determine if there was muscle invasion as the first test samples did not have muscle in them to evaluate. Still have not heard from Urologists on results so I again went to my family Dr this morning and he had received the results Monday 12-19-16. He shared the results and I am furious. The second biopsy states: 2 tumor samples received (the first test stated 3 tumors). Tumors are High Grade Papillary Carcinoma in each sample. Both samples have invaded the lamina propria.(the first test stated only one tumor invaded the lamina propria) No muscularis propria in sample to evaluate! This test was a waste of time, pain and $1000.00 deductible. I am totally stunned at the incompetence of a Dr in practice for 30 years. I contacted Memorial Sloan Kettering who was also waiting for me to forward the second pathology report and they set up an appointment anyway for Wednesday 12-28-16. They said they will determine if a third biopsy is required at our consult. Can't see how we will determine a treatment plan without knowledge of muscle invasion. Has anyone experienced anything similar? Thanks, Ray

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2 years 6 days ago #52468 by raya
Scheduled for my second TURBT this Thursday 12-15-16. Having it done locally as Sloan Kettering said it would take longer to schedule at their facility. I have requested the results of the second test be sent to Sloan and my family Dr. I have also requested all my records transferred to Sloan. The wait is killing me and I am concerned the second test will show muscle invasion and there goes the BCG option. Thanks for listening.
Ray
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