Home Forums All Categories Non Invasive Bladder Cancer Joining the BC Club: Episode 2

  • Joining the BC Club: Episode 2

    Posted by rbmc on November 5, 2011 at 1:19 pm

    If you read or remember from #1, I joined the BC Club back in March 2011. Of course, the Cystoscopy/surgery is a procedure you sleep through. For me, that waiting period afterwards to see the doctor caused anxiety to peak, as I was released from the hospital not knowing a thing they did that day. The doctor never came back to visit the patient. Did I have surgery, or what?? Joining the club wasn’t official until 10 days later, meeting the doctor and confirming the results of the tests. The Cancer word had entered my life.
    I was also wearing the catheter & bag system after this first round. That was easy to get used to, but wow, such a painful experience during elimination for the next 10 days. Once that was removed, my brain was contemplating being a new cancer patient, and there was a 4 month wait to go back up there and check things out.
    Life got back to “normal”, with no further problems to indicate bladder problems. I even slipped in a quick vacation down to the sun belt. Being a summer person, I grab every possible moment to be down at our Lake Michigan beach under blue skies and hot sun. Don’t forget that cooler loaded with cold beer! I was feeling obnoxiously positive about this whole ordeal. After all, they had looked, found tumors, and removed them. The next Cysto would be easy, with good news.
    July rolled around, right on schedule. Summer seems to go by to quickly anyhow. Although I was not overly pleased with this doctor, nor the hospital, I used them both again. Another Friday in late July found me at the hospital at 6:30 am again.
    No waiting this time. Several nurses began prepping me up, as I had been moved to be #1 on the schedule today. I was wheeled into a pre-op area. Next thing I remember was looking at the clock, and ready to ask “When will they start?” The nurse said “Good morning …… you’re done!” Let’s get you back to your room. That was fast! The first thing I peeked for, and didn’t find, was those damn hoses and a bag. Thank goodness neither was present.
    The discomfort was noticible, but minimal this time. I’m sure poking all their equipment up in there must cause some irritation to these tender areas. Well, again the doctor never came back to visit the patient. And again, the nurses were mum. Gosh, why was it so difficult to inform the patient what was going on? The same scenario set in …….. the follow-up appointment with the doctor was in 10 days. Deemed stable, the patient was ready to go home by noon.
    Back home, and feeling quite good, the “worst” effect was the burning sensation during elimination, and that subsided by the next day. And only a few drops of blood this time. Shhhhh, I even “broke the rule”, and drove myself for a quick shopping trip later that evening. The weekend went well, and it was back to work Monday morning. My confidence level was holding at positive, yet there were the unanswered thoughts ….. what did he do/find this time?
    Whoops, 5 days later, during my morning routine …… ping….. out popped a tiny dark piece. Well, was that a scab? If so, then it looks like he did more than just go up there and look around. Maybe just from scraping to do another tissue sample? Determined to keep my positive mind-set, I didn’t call to ask.
    The 10 day wait was up, let’s go find out what happened. Not overly surprised this time, it was another 5 minute conversation with the doctor. Another small tumor was located, and removed. Positive for cancer, but Non-invasive. I guess that the 3-4 month period is normal time for another tumor to grow? Bad news, but, good news. I was still feeling lucky to be finding them early. OK patient, see you in 4 months again. Bye. Sheesh, was my case so simple it didn’t require much concern? Hey dude, I’ve got cancer. You’re sure not communicating well with your patient? I did finally snare the nurse, and demanded that she try to explain more of what was going on. This conversation didn’t help a whole lot either. The best news was that the cancer was being detected early, keeping me on the positive and lucky side. And I did get copies of the reports.
    As a patient, I was SLOWLY becoming more informed. Still curious, random searching continued, which continued to provide random anxiety. And yes, back to ABLCS, to “lurk and fish around” for more specific conversation. Bladder Cancer needs attention, proper attention. And due to its seemingly sneaky nature, this was going to be a long term journey, requiring those Periodic exams to monitor the situation. Let’s keep my luck on the lucky side. Now part of the BC Club, I can partially visualize and feel what some of you have, or are now going through.
    The rest of summer went well. Blue sky and warm sun at the beach. Of course, that cold beer! If liquids are recommended, it also makes a good medium for flushing the system?
    While I waited for this exam, my hopes for a positive outcome didn’t happen in July. And, besides a few family members, I had not spread the word of the situation. The only people who knew of my hospital visits for surgical reasons was work. But, not why. While unable to share good news in July, it was time to inform them that their employee was a new cancer patient. It was great to receive concern and support as they learned of the battle ahead.
    This second procedure was much more palatable than the first. Now the waiting routine had me scheduled for the next exam. Having 2 trips behind me now, I was getting to be an “old-pro” at this. Ha, believe me, I’m still a newbie. Question please: the Cystoscopy is a “go look” procedure. You don’t have to be asleep for that. But both of mine were outpatient surgery, requiring anesthesia. How do they know they will be performing surgery, before they have gone in for a look? Did they have a clue via a test beforehand? Am I not asking the right questions about a test that may indicate cancer is present?
    Thanks for following my journey. Episode 3 will continue the adventures in the Club.

    rbmc replied 13 years, 2 months ago 7 Members · 18 Replies
  • 18 Replies
  • rbmc's avatar

    rbmc

    Member
    November 22, 2011 at 10:22 pm

    Hi again Diesel ……. sorry for the late reply here to this. The Newbie is also a dumb Newbie! Not until recently did I finally get a copy of a CT scan report prior to my first visit, which revealed the need for surgery then. #2 was the mystery, but, a tumor was removed. Urine tests seem to be questionable in detecting cancer? As you can tell, the Episodes following had much better activity.
    RB

  • dieseldoc's avatar

    dieseldoc

    Member
    November 8, 2011 at 12:22 am

    chapter 3 should by no means include this doctor. You need to get to a professional doctor. this doc you are seeing could not poss ably tell if you had a tumor. that is why they do the scope before hand.
    I have had several tumors, and a pee test never showed cancer.

    This doc you are seeing is taking you for a ride.
    Please do not let this doctor make decisions for you or with out your knowledge.


    T1,NO,MO battling bladder cancer since 2005
  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 11:12 pm

    Thanks G:
    Clubs can be cumbersome and heavy, but effective….to swing at doctors. Being of German heritage, I prefer to wield a beer. I am now #5 in the family of cancer history. Rub that Crystal Ball, Chapter 3 is on the way.

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:56 pm

    Mike…….
    it was still summer, and lots of time for that beach and beer. Better anesthesia than the expensive crap the hospital gives you! Stay tuned, Chapter 3 even surprised the hell out of me, and my still semi-positive outlook.

  • gkline's avatar

    gkline

    Member
    November 7, 2011 at 10:41 pm

    Oh man! I love that you have gotten that Bc sense of humor! You are NOW a TRUE member of the club! This Bc thing is a real pain, and the only way you can get through it is with a club in one hand and a stand up comedian’s microphone in the other.

    You have crossed over to the survivors side. I can feel your energy as you write your Chapters.

    This bump in your road will pass

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:39 pm

    Maddening & frustrating are correct. Are they doing the right thing for each case? Yes, it seems tough, for a newbie to try and determine what to do based on their situation. If the doctor doesn’t communicate, what do we do? And the PS, I prefer late summer when Lake Michigan is up to 78-80!

  • mmc's avatar

    mmc

    Member
    November 7, 2011 at 10:30 pm

    If it wasn’t you with the amnesia, how come you aren’t telling us what your uro’s office said when you called to fire then and get copies of all of your records?


    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.
  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:29 pm

    Hi again G…………
    did I fog up your crystal ball? With all the damn equipment they have, this is definately the season for a Hollow-Wienie. Thanks for following the crazy journey from a crazy newbie. #3 is in process.

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:23 pm

    Thanks for following the journey. Chapter 3 is in progress.

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:21 pm

    Neat, you are the first I’ve ever seen/heard to do this with a local anesthesia. I think this doc knew beforehand, but never told me that. Sorry, he never came back afterwards to talk, after #1 or #2. I think it was the doctor who had patient amnesia, not me!

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 10:10 pm

    Hi Mike……..
    I guess after the first non-invasive tumors were found/removed, I was put on the 4 month schedule. My family doctor, who saw the reports, said this seemed fine for the situation. But now it sounds strange, why was I scheduled again for surgery in 4 months, and not just a cysto? Sorry, doctor, nor nurses, failed to inform me of anything that day, on either occasion.

  • rbmc's avatar

    rbmc

    Member
    November 7, 2011 at 9:56 pm

    Hi Diesel Doc……
    Maybe its possible that his urine test indicated that cancer was present? I was scheduled for outpatient surgery the first time (not just a cysto.) There is a feeling that he knew beforehand, but again, did not tell me these things.

  • mamatrausch's avatar

    mamatrausch

    Member
    November 7, 2011 at 8:20 pm

    I agree!!! Find a new Doctor!!! You deserve to be kept informed!!
    I find myself struggling to communicate with my Dr also. When you dont feel informed enough by the Doctors to make choices about your own treatment path it is maddening!!!
    Julie
    PS I love a good cold swim in Lake Michigan!!!


    T1/G3-CIS 10-01-2010
    10-27-2010-Indiana Pouch
  • gkline's avatar

    gkline

    Member
    November 7, 2011 at 4:46 pm

    Isn’t this a little late for a scarey Haloween tale?

    I’m with them…… fine a new Dr.

    You deserve it!


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • DougG's avatar

    DougG

    Member
    November 6, 2011 at 6:26 pm

    RBMC,

    Hope you got to a new doctor by Episode 3. The doc in episodes 1 and 2 is rather scary. Very well documented. Thanks for sharing.


    Anita
    Forum Moderator
    Caregiver
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