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My first cancer with Lynch Syndrome

3 years 6 months ago #48923 by sara.anne
That is really good news, Dawn!! It is SO important to get evaluated at a really top center, ESPECIALLY when you have an unusual situation.

Now be sure you keep up with those checkups!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 6 months ago #48922 by Alan
That is great news! Just to reassure, low grade often the protocol is no BCG but be sure to continue the 3 month cystoscopies! They can tell a lot along with the cytology.

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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3 years 6 months ago #48921 by dawnk
I want to thank you both for encouraging me to get a 2nd opinion. I was able to meet with a top urologist at Sloan-Kettering who did a TURBT procedure on June 1st. I just heard from him regarding my pathology results from BOTH the TURBT biopsies as well as the original biopsies taken locally by my 1st urologist. I was told that my "bladder looked GREAT" - no evidence of any cancer -- he checked the muscle as well as the lining. Also the MSKCC pathologists found no evidence of Carcinoma in situ (Tis) and said I should NOT do BCG treatments at this time. Additionally they determined that I had a PUNLMP not a Ta tumor and told me that PUNLMPs are often misdiagnosed in regional labs because they often mimic Ta tumors. Needless to say I am quite relieved that my cancer is gone and was only low grade with low malignant potential. I am so glad I got such good advice from this forum! Thanks! Dawn

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3 years 7 months ago - 3 years 7 months ago #48756 by Alan
I want to second Sara Anne's comment on a second opinion. My URO was very concerned when his first TURB came back and the path report said he didn't get enough muscle. He re-scheduled me promptly. That is very important to make sure there is no muscle involvement.

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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3 years 7 months ago #48751 by sara.anne
That is sort of an "on one hand, but then on the other" decision!! However, it might be a good idea to get a complete treatment plan set up at MSK and follow it through. Don't think a small delay in starting the BCG would be significant. If you do decide to call for an appointment now, be sure to ask if they have a cancellation list and get on it for the first available appointment.

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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3 years 7 months ago #48750 by dawnk
Thanks Sara Anne.

I just had my urologist schedule my BCG treatments to begin June 1st. I live in Connecticut and thought I'd go to Sloane Kettering for a 2nd opinion after my 6 weeks of BCG treatments. Do you think I should put off the treatment until I get a 2nd opinion?

Once I get an appointment with a urologist at MSKCC (which I've been told could take a week or two (if Im lucky) to possibly even a month) and then they first set up a biopsy, this would probably be sometime in June. This would mean I would be waiting another month before I could begin treatment if necessary.

My initial thought is that I would try to see a urologist there this summer (after my BCG treatments) and have them do the follow up biopsy. Do you think BCG would be bad to do before getting a 2nd opinion? As you can imagine my head is spinning here.

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