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maybe a better Question is does your uro check urine
Posted by sarahlee on June 23, 2008 at 12:01 ammaybe a better question is does your uro check urine before BCG treatments?
replied 16 years, 7 months ago 6 Members · 14 Replies -
14 Replies
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GuestJune 29, 2008 at 9:41 pm
Saralee…trying to get this post back up in the forefront instead of hidden 7 pages away…lets see if this works……….:S
Pat -
Sarahlee, Pat is so correct. After several recurrences of non-invasive papillary TCC. communicating with Wendy Sheridan, who directed me to some studies done by Dr. Mark Soloway, I contacted him. He directed me in their long term trial of watchful waiting rather than surgery then directed me to a physician in my area who would also be better able to get clearer margins without threat to my left ureter orifice where the recurrences kept appearing. He also told me of the one instillation of Mitomycin C within an hour of TURB that would be beneficial at delaying or eliminating a recurrence. Dr. Soloway is an expert in both non-invasive and invasive bladder cancer and is also helpful in directing us to best treatment in our area. Thank you Dr. Soloway! My best to you. Rosie
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GuestJune 25, 2008 at 12:12 am
That would be a no-brainer for me….Miami definately. Heres one of the top docs in the blc world down there………http://www.umiamihospital.com/PhysRefProfile.asp?guidPhysicianID={4AADCF9F-3868-11D5-81FF-00508B116BA6}
You don’t get a lot of chances to do this right.
Your nurse is tired huh?…………great answer…love the compassion.
Pat -
Thanks Pat, Heres what I ve got first uro refered me to a very good DR in Miami because he thought my bladder needed to come out . The second Dr in Miami says his pathology is a T1 high grade,no need to remove the bladder at this time, and wanted me to have six weeks Bcg, he said I could get the BCG close to home as Miami is a couple hours from my home,but he wants to look in the bladder in Aug. well the Dr #1 says oh no if he gives the BCG he is the one to look, after the way Dr#1 has handled this simple job,no urine check , never any questions about any side effects and when I told his nurse Ive been very tired she told me SHE WAS TIRED TOO ::) I want to use the more experienced Dr,in Miami, I have an appointment , I think he has a better eye for whats going on .I do want to go to Miami what do you think?
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GuestJune 24, 2008 at 4:47 pm
One would think so….??…However if you read Yosarians post one of his nurses actually decided to mix the BCG mixture in his bladder…in went the BCG and then the saline…i’m surprised he has a bladder left. All this is very specialized and you really have to be up to speed on your treatment and make sure everyone else is…unfortunately! There are over l00,000 mistakes made a year in hospitals with drugs alone……thats enough proof for me to be my own advocate or if i’m doped up enough not to be to make sure i have someone there who is knowledgable.
Pat -
Yesterday the nurse wasn’t going to check my urine till after she got ther cathater in. I had to tell her that if she found infection i couldn’t have bcg that day. I’m not very smart i know, but aren’t they suppose to know that if even i know that?
it seems ok now since i told them, but i feel like i am the doctor and the nurse not them
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GuestJune 23, 2008 at 6:13 pm
Maybe your doctor doesn’t know how the nurse is administering it? He should know. I posted on your other board…here it is again
http://www.drugs.com/ppa/bcg-live.html
Pat -
Im not going to tell my doctor how to do his/her job. if they want to give treatments they need to know how to do it right , they should not depend on patients to tell them how to do their job, if they dont know what their doing they shouldnt be doing it. my doctor has 4 people hes treating right now with BCG and he s done it plenty of other times. IM no way going to that office for anything if giving out this medication is so hard to do right ,I dont want to test him on more difficult things in the future. this Doctor sees plenty of bladder cancer.he should know what and how.
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sarahlee, if you took your car to a mechanic and didn’t feel that he was doing a good job (and maybe wasn’t fixing things that might endanger your life) would you feel uncomfortable going to a different mechanic or asking him questions? A doctor is being paid, BY US, to do a job. In this case, our lives depend on his doing a good job. If, for any reason, we feel that the match up isn’t right, we have the right/duty to ourselves to ask questions or even change “mechanics.” Of course we can do it politely.
I have raised several issues that I have learned about online with my uro. He welcomes the discussions.
Went to an internist I really liked for serveral years. Had “asthma” which he was treating. Not helping. Finally, on my own, went to a pulmonologist and found that I did NOT have asthma. It was severe (and getting worse) GERD. Took months to clear it up. I changed internists. But I was the one who decided that things were not right and made the change.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorMy uro told me right up front that he does not see much bladder cancer in this part of the country. He dealt with a few cases when he was in Houston. He sent me to an oncologist for BCG, however the oncologist called and spoke with my uro to let him know where the outpatient cancer center is at the hospital – I was sent back to my uro for the treatment. The first time I had BCG I did not get checked, but after many consults with other doctors and my questions from reading about BCG, my uro insists on testing before BCG. He even referred me to Dr. Lamm just to review our protocol. What I am trying to say is that I hope your uro is comfortable reviewing your treatment and will be open to questions like mine was. I fully trust the doctor that I am seeing and I know I am getting good care. I hope this works out for you as well.
Ross
Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatmentI dont like telling my doctor and his nurse what to do, thats why Im trying to find the norm, I think I already know and every visit I felt like it should of been checked, I dont like having to tell them ,they are the specialists , Im so disapointed,and concered I dont want to go back.Does he have to be the poke and peek guy? I have someone else to do that,I really dont trust him any more.
Mine checks both the paper stick (blood?) and in a microscope for
cells.Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorYes but he isn’t doing the bcg stuff so he told the infusion center at the hospital to check it.
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