Home Forums All Categories Newly Diagnosed, New To The Forum Diagnosed this week, would love some feedback

  • Diagnosed this week, would love some feedback

    Posted by Joseph O on June 18, 2015 at 9:42 am

    Hi everyone.

    I had 2 tumors removed last week, and this week found out they were malignant. TCC Low Grade pappillary, 1.3 cm and 2.5 cm. Are those big tumors?

    Meeting with my Doc next week, but have some questions beforehand.

    Does anyone know what WHO stands for in the the path report?

    I’m 41 with young children and worried about recurrence. I smoked for the better part of the last 20 years. I also was horrible about drinking water. I have quit now and am drinking plenty of water. Does the not drinking water part play a role in why i developed cancer?

    So glad to have this forum.

    Regards,

    Joseph

    Jack R replied 7 years, 9 months ago 5 Members · 6 Replies
  • 6 Replies
  • jack-r

    Member
    January 21, 2017 at 4:56 am

    Joseph,

    I have been bleeding, to some degree for most of the past 18 months. Most often it is microscopic, sometimes vivible as a tint, occasionally bright red and Once in a awfful while with clots and tissue debris. Or, simply put very variable. Lab tests always come back with some blood, and I can feel the blood burn when I urinate. My uro wants me to report all changes in bleeding and other sysptoms as we continue treatment.

    If you don’t have a primary watching the other aspects of your health while you go through this, ask your urologist for a referral. Cancer can cause many other changes – you don’t want to let them get out of hand while you concentrate on the cancer.

    Spill your guts to your doc about everything that bothers you. Bladder cancer can have some strange side effects, and you need someone to put it all together.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Joseph O

    Member
    January 20, 2017 at 1:23 pm

    How are your treatments going?

  • Joseph O

    Member
    January 20, 2017 at 1:21 pm

    Hello again,

    So, I guess a year and a half later it should not be a big surprise that I had some bleeding recur when I urinate. I know bladder cancer has a high recurrence rate. It only happened once, but they have moved up my 6 month scope a month to check it out.

    More concerning is that I have lost 20 pounds in 2 months (over Christmas and Thanksgiving during which I certainly did not diet). I also have a strange pain/tenderness in my right calf that has not healed over that 2 month time frame as well.

    I know what this could mean, or at least I think I know, but any help, thoughts, feedback, support would help.

    1. Could the weight loss be caused by recurrent bladder cancer?
    2. Could it be something else?
    3. What’s with the calf pain?
    4. For men, is the bleeding always the same? This time it was more of a mucus “clot” that came out (sorry for the image).

    Hope everyone is well and at peace.

    Regards,
    Joseph O

  • Georgieb

    Member
    June 19, 2015 at 12:32 pm

    Me too,start bcg treatment next week stay positive

  • nicke

    Member
    June 18, 2015 at 11:00 pm

    Hi Joseph,
    Sorry about your diagnosis, but as Sara Anne wrote, it is as good as it can be. Answers to your unanswered questions:
    WHO stands for World Health Organization. WHO has set the standard for grading cancer.
    Tumor size > 3 cm is considered large. However, size is less important. Grade is more importent. Low grade has very little risk to progress to more serious cancer.


    Niklas

    12-12 Diagnosis
    13-1 Turb TAG1
    13-5 Turb Ta low grade, multiple
    13-10 Turb TaG2, multiple
    13-11 Mitomycin 8 weeks + 6 month
    15-01 Turb

  • sara.anne

    Member
    June 18, 2015 at 4:45 pm

    Welcome, Joseph, to our very exclusive “club” which you did NOT want to join!

    Your diagnosis is about as good as it could get, for bladder cancer. I am not sure what WHO means…perhaps if you provided the context…how it was used in a sentence…it would be easier to tell.

    My guess is that your urologist will not prescribe any additional treatment right now. However, he will no doubt schedule you for cystoscopy exams every three months for a while. If everything goes well, they will then be done every six months and, finally, every year for life. As you have probably read, bladder cancer has a very nasty habit of returning and you want to be scrupulous about keeping these exam appointments.

    Not a whole lot is known about the causes of bladder cancer, but smoking is one of the few things that are definitely linked. Drinking water is good for all kinds of health reasons, so that is a good idea.

    Please keep us informed of how you are doing

    Sara Anne


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

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