AS the 27th Draws Near

9 years 4 months ago #47451 by AnneH
Replied by AnneH on topic AS the 27th Draws Near
Thank you, it might take me sometime to understand, but I really appreciate you sending me this information. Hope you are doing well now and on the road to recovery.

Regards,

Anne

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9 years 4 months ago #47445 by fighterm
Replied by fighterm on topic AS the 27th Draws Near
Dear Anne,
I was recently diagnosed with TCC though I was fighting the Non-Hodgkin's lymphoma for a long time now (since 1992). There are so many new treatments for lymphomas/leukemias now that sometimes it's hard to chose. When I started looking for similar treatments for TCC I was surprised that for the last decade there was almost no progress. But then I found some new research that just started that will drastically change the front line therapies for this cancer, too. What I tell myself is that I need to hang on for 5 more years and then we will have plenty of wonderful choices. The major progress comes from the monoclonal antibodies specific for each cancer and from engineered car t cells. Both are in development now for the bladder cancer. That will be the medicine of the future. The first monoclonal antibody for the PD-L1 receptor got a breakthrough therapy designation for bladder cancer from the FDA. It might be approved very soon or has been approved already. Please, check the articles section where I put some links about some new research that I found. So, keep your spirits up. I understand that some papers are difficult to understand even for me although I am a biochemist. If you google car t cells it gives you some explanation.

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9 years 4 months ago #47439 by AnneH
Replied by AnneH on topic AS the 27th Draws Near
Unfortunately he didn't do that, not sure why he wouldn't follow those steps. Even more of a reason for me to make an appointment at Moffitt. Within eight months to have one very large over 5cm, and the other five months later 2.9 cm, seems to me they are growing rather quickly.

Thanks everyone I really appreciate all your support and knowledge.

Anne

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9 years 4 months ago #47438 by sara.anne
Replied by sara.anne on topic AS the 27th Draws Near
You may have seen us mention here on the Forum often that it is not uncommon for a second TURB to be performed several weeks after the first. After the pathology report comes back, the urologist has a much better idea of where/what he might be looking at inside the bladder. He can then take more samples from areas of concern and arrive at a much better diagnosis. This is common practice in many situations.

In my case, the first TURB showed low grade papillary plus some "areas of irritation." My urologist went right back and really took samples where the "irritation" was noted and the final diagnosis was papillary AND CIS. This led, of course, to quite different treatment plans than if it had just been low grade.

Sara Anne

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

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9 years 4 months ago #47437 by AnneH
Replied by AnneH on topic AS the 27th Draws Near
After first TURBT waited 3 weeks had BCG 6 weeks 4 weeks later did cystoscope, I think he did take a biopsy from two areas, I remember because it hurt. Then 3 months later cystoscope found another tumor different area, then TURBT.

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9 years 4 months ago #47436 by fighterm
Replied by fighterm on topic AS the 27th Draws Near
My urologist said that after the first TURB they do biopsy and if it's not sufficient they repeat TURB.

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