Mom just had TURB and I have questions

Are you suggesting we just have the BCG done at Sloan? That is my gut feeling. I am assuming that the choice of doc for the BCG treatments is just as important as choosing a doc for the diagnonsis, TUR or anything else, right?

Not sure if they injected her with anything during the TUR -- it wasn't mentioned if he did, but I will ask.

Kim

Kim, I was hoping to hear from you and your mother's pathology report. Yes, considering removal of bladder is too soon particularly when she has papillary TCC - transitional cell carcinoma. Superficial Papillary TCC is not as aggressive as other types of superficial bladder cancer. For instance superficial CIS or TIS which is Carcinoma InSitu. Was any mitomicyn instilled after the TURB? That seems to be the newest treatment to take care of any possible additional seeding and/or recurrence. My BCG treatments were done at UTSW which was 2 1/2 hours from our home. We stayed the night in a nearby hotel. Most hopsitals have arrangments with nearby hotels at reduced costs.

Well we got the pathology report. The doc says she has superficial bladder cancer but it is high grade. No T stage was given and there is none in the report either. How does one find out this critical piece of info? For those of you who went to Sloan Kettering, was the T stage mentioned in your pathology reports? The report reads in part " high grade papillary in a background of predominantly low grade carcinoma." Also, they are concerned about bone lesions that were seen on the CT scan, but they can't really say what they are just yet. She has an appointment with an orthopedic surgeon next week.

Also, they want her to have six weeks of BCG, once a week. They said she could have this done locally instead of traveling to Sloan to have it done. I'd like her to have everything done at Sloan, but I am afraid she might not feel well enough to travel there once a week for six weeks. Can anyone suggest a good doc in NJ?

I've also read that removal of the bladder may be the best bet when dealing with superficial aggressive cancers -- is it too soon to be thinking about that? From what I read the sooner the better.

Kim

- Kim, the daughter, said: Of course we are on pins and needles again now until Monday.

You remind me of my own daughters when I was first scheduled for surgery/TURB, then after the surgery while I was still "sleeping" the doctor talked to my husband and daughters. He said, "the stalk was much thicker than we had anticipated, I may have to take out her bladder." I heard later my oldest daughter started sobbing and crying then exclaimed "tommorow is her birthday, no fair." The doctor told me as I was awakening that he may have to remove my bladder and I yelled "that is not going to happen." Everything was tense and bleak for us that 5 days until we received the pathology report stating superficial papillary possible lamina propria invasion. I could keep my bladder. I know how tense and anxious you all are at this time and my heart goes out to you. It is a time, however where the love and caring brings all together in even closer family bonding. By the way, my initial pathology was downgraded a year later from a T1a to a TA, which meant no invavsion into the lamina propria.

Yes, she did have a CT scan in the ER when she first started bleeding last month. Besides the mass in the bladder, the CT also showed some lesions in the pelvic bones and we were very scared so we asked her uro to order a bone scan (because he didn't think she needed one at first!). She got the scan before she even had her cysto (because we were so anxious about the bones) and we breathed a sigh of relief when it came back clear. We brought the bone scan and the report to Sloan with us and at the initial consultation the doc said the bone scan was negative. A nurse from Sloan just called my mom and told her that the doc has some questions about the bone scan and is just being "cautious". The nurse said she won't hear from the doc until Monday because he is in surgery tomorrow. I just can't imagine what an x-ray would show that a CT scan and bone scan did not. Of course we are on pins and needles again now until Monday.

Kim

Did your mom have an initial CT scan for diagnosis? If not they are probably just doing a lesser X-ray of the area without exposing her to lots of radiation. Just a guess. Don't panic. If i remember right it took 5 days to get my stage and grade from the path lab at Sloan............Pat