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  • upnorth's avatar

    upnorth

    Member
    March 18, 2012 at 11:36 pm

    Ray;

    Great artical.

    I really like the fact that they will be able to tell if a person will benefit from Chemo instead of just putting them in the microwave to see what happens.

    Thanks for the heads up. Let us know if there are anymore stories like that.

    Mark


    Age 55
    Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
    “Please don’t cry because it is over….. Smile because it happened!” {Dr. Seuss} :)
  • mmc's avatar

    mmc

    Member
    March 18, 2012 at 11:35 pm

    JD,

    Keep in mind that you don’t even know if you have cancer yet.

    Looking at Cancer Centers of America is like looking at Bob’s Screen Door company to build a skyscraper.

    Go to an actual recognized cancer hospital (NCI).

    Here is a link: http://bladdercancersupport.org/bladder-cancer-help/resources/finding-a-doctor-and-centers-of-excellence-

    Look there and scroll down to Illinois. There a couple of places to check AFTER you are diagnosed.

    Regarding the article (I didn’t read it). Don’t get the idea that Bladder Cancer is no big deal. Every damn cancer is a big deal. Some cancers however, are easier to treat and have better outcomes. Bladder cancer is one of those. If it is bladder cancer, then you need to get it treated. You don’t know what that treatment is until you know what it is.

    You do realize, that it very well could be nothing and I’m hoping that is what it is.

    If you are diagnosed with bladder cancer, then go to a bladder cancer specialist (not a general urologist) to get a 2nd opinion. If it is a “watchful waiting” treatment plan (likely if low grade T0) then you can go to you local urologist for that on a regular basis. If it is BCG (likely if high grade T0) then you can also do that at a local urologist. You just want the 2nd opinion to confirm the treatment plan (and diagnosis by having their pathologists evaluate your slides).

    The stress is likely doing more damage to you right now than the tumor/polyp/what-ever-ya-want-to-call it.
    A couple of weeks one way or another makes no difference at all in treating this EXCEPT for your anxiety level. Get something for the anxiety so you can relax.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • JD37's avatar

    JD37

    Member
    March 18, 2012 at 10:58 pm

    Thanks. I didn’t mean to make it sound that way either…just been trying to deal with this as best I can.

    Thanks again for your kind words.

  • Corkyd614's avatar

    Corkyd614

    Member
    March 18, 2012 at 10:45 pm

    Hi JD,

    I hope you read the most current article March 2012. Another article was in the magazine but was published in 2006. I do not read any article that is over five years old as progress is being made on a daily basis.

    I apologize for not being more specific but you should know I am not a doctor and I thought the information provided in the March 2012 article was beneficial at least to me. I am sorry for the post that set you back a mile. There certainly was no intent on my part. Good luck with your treatment and I wish you and your family the very best.

    Regards,

    Ray

  • sara.anne's avatar

    sara.anne

    Member
    March 18, 2012 at 5:30 pm

    Cancer Centers of America is as for profit outfit that specializes in charging a lot of money for not much. This is just my private opinion. I know of no one there with expertise in bladder cancer. Bladder cancer does not present itself in the same ways as many other cancers and is usually treated by urologists who specialize in bladder cancer.

    On our home page, at the top, click on HELP. You will see another option call “RESEARCHED RESOURCES” and after you click on that you will see a huge list of places in the US that have special expertise in bladder cancer treatment. I would suggest that AFTER you get your initial diagnosis, IF it is cancer, and you feel that you need to see another specialist, that you consider this. If you let us know where you live, geographically, we can help you find such a place near where you live.

    When your urologist calls it a “polyp,” it may be that he thinks it is something called “papillary transitional cell carcinoma.” This IS a kind of cancer but can be very low risk and treated only by the procedure you will have. It grows sort of like a mushroom coming out from the wall of the bladder. It is the very BEST kind of bladder cancer to have, if you have to have it.

    We are here to answer your questions.

    Sara Anne


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

    catherineh

    Member
    March 18, 2012 at 5:23 pm

    JD… I suggest you start a new thread in “Newly Diagnosed” and ask for recommendations for doctors/hospitals in the Chicago area.

    We always strongly encourage second opinions and since you already know there is that small polyp in your bladder, now would be a good time to go ahead and consult with an experienced bladder specialist.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • JD37's avatar

    JD37

    Member
    March 18, 2012 at 5:15 pm

    chicago il. Please know that I don’t know if anything I’m doing is right or wrong, I just feel really helpless. I’ve also had flank pain on right side and low back discomfort for a while too, which I read were signs of advanced bladder cancer…so even though my CTs were “normal”, I cant help but freak out thinking this is all way worse than my doctor seems to think. I checked out my doctor too and it seems he is just certified in general urology. Does this mean I should seek out someone w/ a lot more certifications? I’m going crazy w/ all of this.

  • catherineh's avatar

    catherineh

    Member
    March 18, 2012 at 4:43 pm

    JD… where are you located? Our members have had experience with some of the best doctors in the country for bladder cancer.

    I don’t know anything about Cancer Centers of America except from their TV commercials. I don’t recall anyone in the forum since I’ve been here talk about going there. Perhaps we can offer you some additional places to check out while you’re considering them.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • JD37's avatar

    JD37

    Member
    March 18, 2012 at 4:38 pm

    but that was “pre-cancerous” and my doctor called mine a “small bladder cancer” so is that essentially the same thing? I’m just so confused.

    Everyone keeps saying that I won’t know if this is bad until I have the polyp removed, which is why I am trying to make sense of the facts so I can adjust my anxiety accordingly. I’m just concerned that, regardless of the doctor’s expertise, that I should take action somewhere else. I called the Cancer Treatment Centers of America today and am having my records sent there. The lady I talked to is a cancer survivor and said she thought it was a bit selfish of my doctor to make me wait 3 weeks to address this (especially when I expressed how much anxiety it was giving me.) I don’t know what is right or wrong at this point, but I do know that I cannot wait 3 weeks. I simply cannot. I have to get this out of me (regardless of whether it turns out to be something or nothing) so I can have some answers and begin to TRY and regain some hope for my future.

  • catherineh's avatar

    catherineh

    Member
    March 18, 2012 at 3:07 pm

    It is a fact, JD, bladder cancer is a scary thing. And this is why it is so important to catch it early like in your case. And, that is still IF you even have bc.

    Early detection is the key to optimum treatment of any cancer. You may even get to the point where you can thank that little polyp because it sent out a signal that something further needed to be looked at!

    Even Dr. Oz had a pre-cancerous colon polyp as clean a lifestyle as he practices. It was done live on his show and he was as shocked as we have all felt. But they found it on his first colonoscopy and got rid of it.

    Early detection and finding a doctor who is an expert in that particular field are two key ingredients of successful treatment.


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • JD37's avatar

    JD37

    Member
    March 18, 2012 at 2:53 pm

    Well, I was feeling a bit better until I read the article..it nearly gave me a heart attack. Which part?…where do I begin…the part about people not always getting the correct treatment…testing being out of date…false positives…people having clear scans after three months and then metastatic spreading after the 6 month…you name it.

    I hope this helps someone, but it just set me back a mile. I am even more petrified now than I was before.

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