Home Forums All Categories Newly Diagnosed, New To The Forum University of Rochester medical Center

  • University of Rochester medical Center

    Posted by Jjbrown on March 28, 2019 at 12:46 am

    Has anyone heard or personally know if the University of Rochester medical center is a good place to transfer my care to? They are the only hospital near me (an hour away) that offers blue light. I am obviously willing to drive the hour for each appointment if I know the care is good. My urologist now seems good and has good reviews however he did not use the Mitomycin after my turbt and that concerned me. When I asked him why he said that all the doctors in the practice ( about 25) have stopped using it because it calcifies the bladder and can cause other problems. He said they use gemcitibine if and when they know they are dealing with cancer so I presume that would be after a second turbt, not after the first because they would need to see the pathology report. Has anyone heard of this? I would like to trust my surgeon because he comes highly recommended in my area but it seems alot of posts on this forum, docs are still using mitomycin. I have to question then, why not my urology practice? Also, they do not have access to blue light. I was diagnosed as TaG1 so am I jumping the gun to transfer care with a low grade diagnosis? Any insight is greatly appreciated! Thank you

    Jack R replied 5 years, 7 months ago 5 Members · 8 Replies
  • 8 Replies
  • jack-r

    Member
    March 31, 2019 at 3:30 pm

    Jjbrown

    Explore the website for Roswell Park for a display of the breadth of services offered.

    A follow up call to the information line (or email) allows the opportunity to explore your specific concerns.

    Determining WHERE to obtain your care, in a manner acceptable to YOU, is a task only you can research. It can be a daunting chore.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Alan

    Member
    March 31, 2019 at 1:34 pm

    Here is a start on hospitals. Within these you will have to research the best bladder ones: https://www.cancer.gov/research/nci-role/cancer-centers/find

    I know the Cleveland Clinic, Sloan Kettering, MD Anderson etc are excellent!


    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.
  • jjbrown

    Member
    March 31, 2019 at 1:58 am

    Jack
    Thank you for the links. I feel blessed that I am not too far from some great cancer centers, but it is hard to find ( online) which ones deal with alot of bladder cancer. I have learned from this forum how important it is to have a surgeon that deals with bladder cancer often, as opposed to prostate issues. I have my homework cut out for me I guess!
    Do you know if there is a site that lists how much a certain cancer center deals with bladder cancer?
    Thank you!

  • jack-r

    Member
    March 30, 2019 at 6:39 pm

    Jjbrown

    I note your search for a recognized leader in cancer care AND your mention of Roswell Park being “in your back yard”.

    The National Cancer Institute (NCI) lists about 70 of the nation’s cancer centers as the backbone of cancer research and in controlling cancer. Roswell Park is one of those centers. Learn more about NCI Cancer Centers at:

    https://www.cancer.gov/research/nci-role/cancer-centers

    And learn more about Roswell Park at:

    https://www.cancer.gov/research/nci-role/cancer-centers/find/roswellpark

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • jjbrown

    Member
    March 30, 2019 at 12:45 am

    Ange
    Cleveland Clinic is one of my choices. I heard they are top notch. I am waiting on my 3 month cystoscopy results to make a decision. That is in May. Hopefully no recurrance but if so, I will have to make a choice then as to what to do. I am about 3 hours away. I also have Roswell Park in my back yard so to speak so that is also an option. I heard tney are great there also. Thanks for your input.
    Good Luck!
    Also, I didn’t urinate completely comfortably for 3 1/2 weeks after my TURBT. We all heal differently but a call to your doctor wouldn’t hurt.

  • ange

    Member
    March 29, 2019 at 6:44 pm

    Cleveland clinic you may want to look into. My doctors credentials are excellent as is his experience

  • ange

    Member
    March 29, 2019 at 6:42 pm

    Hello. You must not be far from me. I am about a hour and half from univ of Rochester. I have jus had surgery las week in Cleveland clinic. They are wonderful, but wondering if I need chemo treatments if I could go closer like the u if of Rochester, so as not to have T travel 5 hours to get there. But I will if that’s my BEs alternative. Cleveland clinic is so wonderful, I highly suggest it.

  • sara.anne

    Member
    March 28, 2019 at 1:29 am

    I do not personally have any knowledge of the University of Rochester, but their list of faculty has a number who appear very qualified in treating bladder cancer. I would certainly be relatively confident in a medical school practice since they should be familiar with current treatment standards.

    Some urologists use mitomycin and some don’t. It is NOT a critical part of treatment. Mine didn’t and I consider his training and background excellent.

    Blue light cystoscopy is the latest “buzz word” in urology. Some studies say that it find more cancer than white light and some say there is no difference and some say that blue light finds more “false positives” (showing cancer when there really is none.) Since it is an expensive service to set up initially, hospitals that have it will, of course, proclaim its superiority. I am always more impressed with the experience and reputation of the urologist ( or any other doctor) than I am with the purchased bells and whistles. My own opinion…others may differ.

    It all comes down to your comfort level. If you do not have confidence in your doctor, go elsewhere. But be careful of following “Dr. Internet.”

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator

Sign In to reply.