My first cancer with Lynch Syndrome

8 years 10 months ago #48923 by sara.anne
Replied by sara.anne on topic My first cancer with Lynch Syndrome
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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8 years 10 months ago #48922 by Alan
Replied by Alan on topic My first cancer with Lynch Syndrome
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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8 years 10 months ago #48921 by dawnk
Replied by dawnk on topic My first cancer with Lynch Syndrome
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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8 years 11 months ago - 8 years 11 months ago #48756 by Alan
Replied by Alan on topic My first cancer with Lynch Syndrome
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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8 years 11 months ago #48751 by sara.anne
Replied by sara.anne on topic My first cancer with Lynch Syndrome
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
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8 years 11 months ago #48750 by dawnk
Replied by dawnk on topic My first cancer with Lynch Syndrome
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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