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Lynch syndrome and bladder cancer

4 years 8 months ago #48226 by Marble68
I had my first TURB and they gave me mitomycin. I woke up after surgery with them having me roll this way or that to coat the bladder. :)

46m, superficial bladder cancer. Just had my first TURB; waiting to find out if it comes back.

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4 years 8 months ago #48225 by sara.anne
When the word "chemo" is used with the TURB, that usually means that they might instill a wash of mitomycin following the TURB. However, if the urologist feels that it might work, he may recommend BCG after you heal completely. It is sometimes not quite as effective with low grade tumors as it is with high grade, but when they keep coming back (a characteristic of bladder cancer) it might be worth a try.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 8 months ago #48223 by Laddy640
I just received the report. Says. 3 low grade urethral papillary carcinoma non invasive. Early stage. I still haven't heard back from doctor to tell me how we will treat this. I know in the Past when I had single tumors they did a TURB. Since this is multiple and my 3rd in 6 years. I have people saying. They should look at chemo with the TURB this time. Any thoughts

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4 years 8 months ago #48205 by sara.anne
There is just no way to "second guess" what the doctors are thinking! Since you have a history of cancers, it is probable that they are being super-cautious in their diagnosis. Think you will just have to be patient and wait for the reports.

You are very fortunate that they are sending the samples to Hopkins for review. You will know that whatever the outcome it has been checked by some of the best.

Wishing you the very best of luck...and let us know what happens.

Sara Anne

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

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4 years 8 months ago #48204 by Laddy640
I'm 50 years old with a family history of all types of cancer. I have had bladder cancer 2x skin cancer invasive 3x. And prostate tumor. Recently had a scope and watched dr do 3 biopsies. In didn't look like my past bladder cancer. Cauliflower looking. This looked more like a melanoma in all 3 spots. Dr called and said pathologist wants 2nd opinion. So they sent it to John Hopkins In Maryland. Getting nervous. Never had that happen it's always been direct People are telling me it's probably positive they just want John Hopkins to confirm and advise on treatment. Has anybody have that happen to them. Also people are telling me they dought it is negative and sending it to John Hopkins to confirm a negative. Any ideas or suggestions. Thanks

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