Just Diagnosed

7 years 3 months ago - 7 years 3 months ago #52435 by Alan
Replied by Alan on topic Just Diagnosed
Raya,

Not to diminish your experience with your URO as I believe a second opinion is warranted, my URO told me my path report couldn't tell if they had enough muscle the 1st time hence a second TURB. At the same time he said any high grade reading is cause for a second TURB. Sloan Kettering certainly has a great reputation. I did stay with my URO for a variety of reasons not the least that he personally read the CT scan with the radiologist saying "no tumors visible or apparent in the urinary tract" and my URO said, "no I see the shadow and that is a tumor". Plus, when I had a question about antibiotics sometimes making low grade tumors read high (I was treated initially for a week to see if all I had was an infection-which is normal protocol), he replied he personally read it and it was high grade. To top that off he personally called my wife 1st (she worked at the hospital where he had privileges) to see if she or he should break the news about being high grade. She said no he is a big boy, tell him straight, which he did.

My point is: I was simply lucky with a great URO that knew what he was doing. In hindsight a second pair of eyes would have been good if I hadn't been so lucky. You will get through this and be better and stronger!

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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7 years 3 months ago #52432 by raya
Replied by raya on topic Just Diagnosed
I had a consult with my original Urologist today. He said I should not be too concerned. His plan is to do a second biopsy to confirm the 1 of 3 tumors did not invade the muscle. He said he did not think this was the case. The other 2 tumors were superficial in nature. He then wants to do BCG treatment and monitor closely and is confident I will be cured. I know he was giving me the best possible outcome. I did not inform him that I was going to Sloan Kettering yet for a second opinion. I did find out that after my first TURB I did not receive Mitomycin which from what I read I should have received. I will contact Sloan Kettering tomorrow to discuss if they want to perform the follow up biopsy or if they want me to do locally and provide the results. I have guarded optimism as the Dr said I was not yet a candidate for bladder removal due to age and progression. Still worried.
Thanks, Ray

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7 years 3 months ago #52410 by raya
Replied by raya on topic Just Diagnosed
Thanks. Will post as things develop.

Ray

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7 years 3 months ago - 7 years 3 months ago #52407 by Alan
Replied by Alan on topic Just Diagnosed
Sloan Kettering is a good move! First rate bladder group and doctors. As Sara Anne indicated a second TURB will probably be done just to be sure of the first path report and is pretty normal protocol. The good news is your first TURB showed no muscle involvement even if the sample was flawed. Waiting is no fun but, you're already way ahead of so many as you are taking charge of your situation! Keep posting as you have questions.

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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7 years 3 months ago #52403 by sara.anne
Replied by sara.anne on topic Just Diagnosed
Just a quick thought for you....it does seem right now that things are moving much too slowly and you can just imagine that cancer growing like a weed. However, whatever is there was probably there for years before it even began to show symptoms. Yes, you DO need to have it taken care of. However, a few weeks at this point will not make a bit of difference. What WILL make a difference is the quality of the medical care you receive to treat it.

You are on the right track!

Sara Anne

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

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7 years 3 months ago #52402 by raya
Replied by raya on topic Just Diagnosed
Hi Sara Anne.

Thank you for the positive words and thanks for the quick response.

I do expect a second TURB for a clearer picture of the situation. It all seems to be moving so slow and I am told the cancer is fast growing.

Thanks again!

Ray

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