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  • sara.anne's avatar

    sara.anne

    Member
    February 24, 2020 at 1:40 am

    Makes sense. You will see lots of people giving out “advice” on diets, supplements. A couple of things to remember IMHO: a healthy diet and life style never killed anyone; whatever caused your bladder lining to become “unstable” probably happened years and years ago and it took this long for one damaged cell to proliferate and finally become cancer. One reason that bladder cancer “returns” is that cells in the bladder have developed a propensity to mutate and become malignant.

    I would advise a healthy diet (which means everything in moderation), a healthy amount of fluid to keep “things” moving in your bladder, and exercise. PLUS keeping those checkup appointments with your urologist. Extra special supplements and elixers do a lot of good…..for someone else’s wallet!

    Sara Anne

    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • phleabee12345's avatar

    phleabee12345

    Member
    February 23, 2020 at 9:48 pm

    Sara.anne, You are absolutely correct. Thank you for that bit of piece of mind. The question I have is, what can I do to change the environment in my bladder as to not keep it cancer friendly . I hope that makes sense.

  • knifedealer's avatar

    knifedealer

    Member
    February 23, 2020 at 8:01 pm

    [quote=”Phleabee12345″ post=59127]Has anyone had the same? if so what did you do next ? [/quote]

    To answer your questions directly: Assuming that sara.anne’s reasonable assumption about your diagnosis is indeed accurate, I had the same diagnosis about 1.5 years ago. What I did next was learn as much as I could about the disease, within reason. While knowledge is power, I spent an inordinate amount of time online reading about bladder cancer and it began to feel as if bladder cancer was enveloping me. In hindsight, some if not most of this time would’ve been better spent engaging in life. Today I do my best to not let the disease control me.

    Also, I kept every subsequent appointment. While ongoing surveillance is key to long term positive outcomes, only 40% of patients comply with bladder cancer surveillance guidelines.

    Finally, while I’m not much of a writer, I started a journal. Nothing elaborate. Simply a recording of dates of cystoscopies, TURBs, outcomes, and other salient information. In hindsight, less than 1.5 years later my log has become indispensable.

    Best of luck to you. Please check back regularly and keep us informed of your progress.

    https://www.cxbladder.com/us/blog/the-importance-of-bladder-cancer-monitoring-and-surveillance/

  • sara.anne's avatar

    sara.anne

    Member
    February 23, 2020 at 7:24 pm

    Welcome!

    While you did not provide the complete diagnosis (which should be on the pathology report, which you should keep a copy of) I will make some assumptions. I am assuming that you had a TURB (transurethral resection of the bladder) and that your urologist gave you your copy of the path report. IF your tumor was transitional cell low grade with no evidence of spread into the muscle tissue (and the presence of muscle tissue was mentioned in the path report) you are a very lucky patient.

    IF my assumptions are correct, you will have no need for chemo or radiation! Your urologist will probably put you on a schedule of exams (yes, cystoscopy exams) every three months for about two years. After that they will be scheduled for every six months until 5 years have passed, and then annually forever. Low grade bladder cancer is highly treatable, but does have a nasty little habit of returning which is why the frequent exams.

    Chemo is only used with bladder cancer when it has spread beyond the bladder. While radiation is sometimes used in advanced bladder cancer it often causes more problems than it solves and is not the treatment of first choice.

    If my assumptions are not correct, please let us know what your exact diagnosis is and we can try to give you a better idea of what to expect.

    If you go to our Home Page
    https://bladdercancersupport.org/index.php
    And look at the items in the box at the upper left ABOUT BLADDER CANCER you will find more information.

    Good luck to you

    Sara Anne

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

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