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  • Old Neobladder – New problem

    Posted by kcnorthstar on April 13, 2009 at 1:17 pm

    I have had a neobladder for 3 years now. I could not have imagined how well the surgery would turn out for me as I have been lucky enough to have a perfectly functioning neobladder. My Life has been back to totally normal the last three years. About 6 or 7 months ago I started having lower back pain. Because I have had previous lower back problems, I just figured it was muscular pain. Both my urologist and my family doctor attributed it to musular pain also. As time has gone by the pain has worsened especialy at night. I went to the doc 2 months ago and complained about the pain again. He did a x-ray, and bone scan. Both were clear. My last pelvic ct was 7 month ago, and it was also clear. This past week the pain has gotten worse is now in my left flank. Yesterday I was alarmed to see a small amount of blood in my urine and a small blood clot. I am going to call my uro today and get in there asap. I’m hoping this is nothing major, but cant help but wonder if the other shoe is about to drop.

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
    mmc replied 15 years, 9 months ago 6 Members · 12 Replies
  • 12 Replies
  • mmc's avatar

    mmc

    Member
    April 30, 2009 at 12:59 pm

    KC,

    Sounds like great news!

    I understand your comment about worries. Seems natural to be concerned when symptoms can potentially be a return of cancer. It’s the old “Hope for the best but be prepared for the worst” thing.

    Here’s to hoping that the news continues to be good!

    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.
  • alsimons's avatar

    alsimons

    Member
    April 30, 2009 at 11:52 am

    Dont worry about the insurance company…………take care of yourself. Sorry about your back pain, but in this case its sounds like good news.

    WTG

  • kcnorthstar's avatar

    kcnorthstar

    Member
    April 30, 2009 at 1:40 am

    Ok , so my cystoscopy was ok, my CT scan was clear, my bone scan was clear and all my blood and urine tests came
    back OK.
    My GP sent me to a physical therapist for the back pain I have been having for the past 8 months and he says I have a sliped disk in my back. I have had 2 sessions with him and my back pain is about gone. After all the stress worrying about a recurance, it turns out to really be a muscular/schelaton back problem. I guess I dont feel bad because my uro and GP both went straight to all those tests.
    On one hand I guess you have to be carefull to look for recurrence, but you also have to be aware that not every little pain or simptom is return of the C. Where do you draw the line? Im sure I am hated by my insurance company.

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • gkline's avatar

    gkline

    Member
    April 24, 2009 at 2:04 pm

    Your post has put into words what has been hounting me since my surgery. I sometimes wake at night and wonder….If
    If they got it all
    If I will have more
    If something is still floating around in me
    If I will get back to normal
    If that pain is normal or something else
    If I am a pain in the butt to my family
    If I should get out of my business and find something else
    If I will ever just put this behind me
    If…If…If
    Whew! My Spider Senses were tingling when I read your post… I wonder the same things you do. I sometimes feel foolish for jumping at shadows. I thought I was just being foolish. I’m feeling less foolish knowing that others have the same thoughts.


    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]

  • 's avatar

    Guest
    April 18, 2009 at 11:36 pm

    I actually read a article from Henry Ford Hospital where they said
    the constant irritation from the bike seat and microtrauma from running could easily explain your symptoms. It is not uncommon for cyclists to have a urethritis and runners to have some blood in the urine.
    Pat

  • Andy_D's avatar

    Andy_D

    Member
    April 18, 2009 at 9:13 pm

    One other thing:

    I wrote about this about a year and a half ago titled ‘Occasional hematuria 1 year after neobladder’.

    There were a few responses from others with a similar story – might be worth a read.

    All the best,

    Andy.

  • Andy_D's avatar

    Andy_D

    Member
    April 18, 2009 at 9:07 pm

    I have a 2 1/2 year old neobladder. I get blood/clots in the the mucus quite regularly, especially after cycling, constipation and possibly dehydration. I have regular screening for mets/recurrence and have multiple negative scans, cytology/FISH and a couple of negative cystoscopy’s. It takes quite a lot of effort not to worry when the blood is there. We have never found the source of the bleeding. I am colonized by pseudomonas, and take suppressive antibiotics, but I always wonder whether the bleeding is in someways related to bacterial overgrowth/infection.

    I also have reflux pain, but this has improved after going back to setting my alarm to empty my bladder in the night – annoying, but actually the daytime pain improved too.

  • kcnorthstar's avatar

    kcnorthstar

    Member
    April 18, 2009 at 1:33 pm

    Went to my uro and he did a poke and peek. He said my neobladder looked a little reddish and that the blood and blood clot may have been caused by irritation to the neobladder. I also had a abominal CT which came up clear.
    Anyone else had blood from an irritated neo? although I am a cancer survivor, I have always wondered how many years my life has been shortened just by the stress involved from BC!

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • kcnorthstar's avatar

    kcnorthstar

    Member
    April 13, 2009 at 7:12 pm

    Ive got an appointment for tomorrow. Im a little ticked off that I let the doctors convice me that my back pain was nothing to worry about. Its been 6 months or so and I wish I had pushed the issue, but at the time it did feel like just sore muscles.
    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • 's avatar

    Guest
    April 13, 2009 at 7:05 pm

    Sounds very suspicious for hydronephrosis to me…a blocked ureter…can be caused by a stone or blockage or twisting of a ureter. Have them check it out ASAP……
    Pat

  • kcnorthstar's avatar

    kcnorthstar

    Member
    April 13, 2009 at 7:00 pm

    Thanks Mike,

    I actually got an appointment set up for tomorrow. They initially had me down for three weeks from now, but I pushed a little and got in tomorrow afternoon. At least I dont have to play the waiting game.

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • mmc's avatar

    mmc

    Member
    April 13, 2009 at 1:38 pm

    KC,

    I hope everything is OK!

    Here’s hoping it is unrelated and just something else (not cancer) that can be dealt with.

    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.

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