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My first cancer with Lynch Syndrome
I found out I had lynch syndrome in 2012 and have been getting annual screenings every year since. Last month during my cystoscopy screening my urologist saw something and ordered a biopsy for last week. I didn’t present with any symptoms. The pathology said I had a 3mm low grade non invasive papillary carcinoma as well as a high grade flat carcinoma in situ. My urologist did not biopsy any muscle as he thought it was very small and appeared to be on the surface only. He is now recommending BCG therapy to begin in 3-4 weeks after my bladder recovers from the biopsy. I’m a 47 year old woman and this is my first cancer. I’m pretty scared — especially since my family tree has 14 members with cancer — 5 with urological ones. (my dad had ureter cancer twice (the 2nd time it spread to a kidney), and prostate once (plus2 non urological cancers). My grandma had bladder and ureter cancer (plus 4 non urological ones). My dad also had an uncle and 2 first cousins who died from urological cancers. How well is BCG really tolerated? My doc says it might feel like a bad bladder infection for a day or two after treatment. Is that really true? Should I be getting chemo with this as well?
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7 Replies
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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
Forum Moderator
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.
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
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.
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
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.
So sorry to read your post.
First, to answer your questions about BCG. If you look at the threads at the top of the topic “Non-invasive bladde cancer” you will find LOTS on BCG. Also, if you use the “Search Forum” function at the very top of this page, you will discover much more.
BCG is instilled directly into the bladder where its purpose is to kick up the immune system to fight the cancer. If your cancer is indeed superficial (ie, still limited to the bladder lining) there is no need for systemic chemothereapy.
Your urologist’s description of the side effects is spot-on…some burning with urination and fatigue. The side effects do increase as the treatments progress…this indicates that they are working and the body is reacting.I am somewhat surprised that your urologist did not biopsy any muscle tissue. Many urologists follow the current “standard of care” and do a second biopsy after the first has healed to be sure that they had muscle present. Bladder cancer is very often understaged and a second biopsy, when the urologist is surer of where the problem exits and can get more accurate sampling, is really a good idea.
I would strongly suggest that you get a second opinion on your case at a center that sees LOTS of bladder cancer, if you have not already done so. Your case is not typical and you have additional risk factors (Lynch Syndrome) that make it critical that you get the very best of diagnosis and care. Depending upon where you live, such places as MD Anderson in Texas or Memorial Sloan Kettering in NYC, Johns Hopkins in Baltimore, USC in Los Angeles. If you let us know where you are located geographically, others may have suggestions for you.
As you know, CIS is high grade and nothing to fool around with, and the Lynch Syndrome puts you at greater risk for recurrences.
Best of luck to you, and please let us know how this goes.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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