• Posted by on December 6, 2016 at 10:03 pm

    I am a 64 year old male, have never smoked, and in otherwise good health. I had not spent overnight in a hospital since third grade…until last week.
    I have been urinating blood for about a year and it got to the point where it was the color of dark red wine. Upon my insistence, I was referred to a urologist. He performed a cystoscopy, told me there was a bloody cyst in my bladder and scheduled to see me in three months. Three months later, because my urine had not changed color, he scheduled me to have the cyst removed in as an out patient. They diagnosed me with a “Invasive high grade papillary urothelel carcinoma, with muscularis invasion identified”. The urologist treatment at UCLA, where the bladder will be removed laparoscopicly and a section of my bowels will be used to make a bladder. I just got approval for a consult with the surgeon. Everything else lay ahead.

    sara.anne replied 8 years, 1 month ago 4 Members · 9 Replies
  • 9 Replies
  • sara.anne's avatar

    sara.anne

    Member
    December 22, 2016 at 8:09 pm

    Cancer of the spleen is not one of the most common causes of an enlarged spleen. It is probably more due to other causes (inflammation in the bladder?) because the spleen does react to what else is going on in the body. Even STRESS.

    You need to step back. You will be seeing your doctor soon and you will get all these questions answered. Your over-stressing can cause other things. I know that it is easy for me to tell you this…I get it….you can’t help worrying. But that will not get anything fixed.

    You can do this!!!

    Sara Anne


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

    Guest
    December 22, 2016 at 7:18 pm

    Update: I have had some minor pain while urinating – this is a symptom of prostate cancer. Seeing that the bladder sits right on top of the bladder, this could be happening. Since my prostate will probably be removed during the radical cysectomy, I was advised to discuss this with the surgeon during my meeting with him on Jan. 9th. I also read a report from a CT Scan of my pelvis in July. In it, a growing “abnormal soft tissue” growth in the bladder was noted. The CT study also diagnosed Splenomegaly, which is symptomatic of cancer in the spleen.
    Why wasn’t anything done until now? I am really streesed.

  • Alan's avatar

    Alan

    Member
    December 8, 2016 at 5:30 pm

    Probably not a bad idea on adding to newbies posts. It is almost too long and big however most can sift what is pertinent to their situation. I am just glad I saved it from someone else’s post years ago.


    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.
  • sara.anne's avatar

    sara.anne

    Member
    December 8, 2016 at 4:14 pm

    Excellent list, Alan!!! Maybe we should attach it to every newbie post?
    :laugh: :laugh: :laugh:

    Sara Anne


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

    Alan

    Member
    December 8, 2016 at 2:26 pm

    Welcome. Enclosed is a file with questions to ask, at the risk of too many questions and confusion. Also, some are too involved and not pertinent as you are further down the road in your journey. It can augment or add a few things you may not think of. George is a wealth of information also!

    Attachments:


    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.
  • gkline's avatar

    gkline

    Member
    December 7, 2016 at 8:40 pm

    A YEAR ? REALLY ?

    Thank God you were vigilent about getting something done….. Or you wouldnt be writing this post.

    So you are going to get a neo bladder…… I have one. It has been good to me even with it’s quirks. I hope you know that you will continue to lead a normal life after recovery. The operation is Major surgery and the recovery is lengthy and you must be careful of infection. But you will be able to lead an active life afterward.

    I was 53 when I was diagnosed. Non Smoker( aside from the celebratory cigar) and had never seen the inside of a hospital room (but a well known emergency room attender)
    and always active. And then BAM! blood in my urine and an astute Dr had me at a urologist in 2 days for a scope.

    I’m not a Dr but I also get mad when I hear that you spent a YEAR with that much blood coming out. Even I would have had someone take a look and check it out.

    Sheesh

    Glad you are here

    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]

  • sara.anne's avatar

    sara.anne

    Member
    December 7, 2016 at 8:20 pm

    While you really are anxious, a few weeks won’t make much of a difference. I, too, was told right before the holidays that we needed to “do a scope.” Unfortunately people are all trying to get anything done they can before the end of the year and they start a new insurance deductible, so the docs really get booked up.

    Sara Anne


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

    Guest
    December 7, 2016 at 5:26 pm

    Thanks for your advice. I will lookup the questions to ask on the link you supplied. I do not know if I will get chemo before the operation but I will bring up the topic with my Urologist. One distressing piece of news I received yesterday is that I have to wait until January 8th. just to get the initial one hour consult with the surgeon. I want this procedure done before it spreads to my Ureters.

  • sara.anne's avatar

    sara.anne

    Member
    December 7, 2016 at 4:53 pm

    So sorry to see you here!

    Stories such as yours make me so angry. Yes, there are MANY possible causes for urinary blood, but one of them is bladder cancer!! It is often difficult to find the cause, but that doesn’t mean that doctors shouldn’t try. It probably would not have made a difference, but one wonders what the result might have been had you been referred to a urologist when the bleeding first appeared. (My father had blood in his urine ONCE. Turned out to be kidney cancer…thank goodness the doctor sent him to a specialist right away.)

    You will be in good hands at UCLA….a university medical center is the place to be. I assume from your description that you will be having a neobladder?

    Here is a very good discussion of the main types of diversions currently used that you may want to read so that you can formulate questions for the surgeon:

    http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

    Will you be having chemo prior to the surgery? After the surgery?
    These are other questions you might want to ask.

    Wishing you all the best

    Sara Anne


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

Sign In to reply.