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  • Large amounts of blood in urine

    Posted by angelgrl on October 20, 2015 at 4:58 am

    Hi everyone. I was diagnosed with T2 high grade muscle invasive bladder cancer in 2014. Underwent three months of MVAC chemotherapy. After the chemotherapy was finished the tumor decreased in size dramatically. The current size of the tumor since my last CT scan which was last month, is 7cm. The doctors are monitoring me since the end of my chemo which was in March. The original plan was for me to undergo three months of chemo followed by a radical cystectomy. Since the chemo decreased the size of the tumor so much they have decided to monitor me instead upon my request.

    There have been some recent developments however. In the past several weeks I have been feeling very weak, so I went to see my primary doctor about this. He ordered some blood work and a U/A. The blood work came out normal, the U/A found large amounts of blood in my urine. I am scheduled to see my Urologist this Thursday to go over these results. Is it possible that the tumor has grown or the cancer has spread? What are the survival rates of those with this type of cancer without have a RC? I just do not see any reason to have that type of surgery if it is not necessary, since the tumor has shrunk so much. Thank you.

    Angelgrl

    Angelgrl replied 8 years, 8 months ago 5 Members · 6 Replies
  • 6 Replies
  • Angelgrl

    Member
    October 28, 2015 at 2:52 am

    Thank you for your replies and advice on this matter. I have been reading up on Proton Therapy for bladder cancer and it is saying that it has very similar results as having a RC without having surgery. Does anyone have more information on this type of therapy for bladder cancer? I am making an appointment for a consultation with a Proton therapy radiologist to go over this therapy and to see if I am a candidate. My Urologist did give me this option other than an RC.

  • Plk

    Member
    October 25, 2015 at 12:38 am

    HI Angel, I completely agree with Cynthia.Blood in the urine was what led to my diagnosis and I have just had a radical cystectomy with an Indiana Pouch. tHis website and Cynthia in particular,let me know that there is life at fee surgery. mY surgeon believes that I am on myway to being cancer free and that I can live a full life. Find someone who specializes in the surgery you need. My doc does 5-6 per week, and we know that practice makes perfect. hIs team predicted every stage of more overt accurately so far.

    gOd bless and good luck and use this site for support, it has certainly helped me.

    Plk


    PLK in NJ
  • gkline

    Member
    October 20, 2015 at 4:57 pm

    I am not a Dr and I don’t pretend to even play one on TV.
    But I have an opinion to share….
    Get that bladder out of there!!!!
    If your Dr is trying to save your bladder….. get a new Dr.
    Unless there are other circumstances other than what you have shared with us…. You need to get rid of this uglyass bladder and get a fresh one.
    Too many times I see a person trying to save their bladder when the rest of their body is at risk.

    Just sayin. From a long time bladder removal survivor..

    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]

  • Angelgrl

    Member
    October 20, 2015 at 3:31 pm

    Thank you Catherine and Cynthia for the welcome, support and encouraging, kind words. No, I know you are not trying to scare me, I have been thinking about all this ever since my diagnosis last year. Going through emotional issues as well does not help either. I am seeing a therapist however. On top of having cancer, I am blind too. Catherine, you mentioned if I state where I live someone might recommend a good medical facility for cancer patients. I live in San Diego, CA. I am aware of the Moores Cancer center at UCSD, I had my second opinion their last year. The doctor I saw was a specialist in bladder cancer and he informed me that I did not need chemotherapy, I already started chemo at another facility, Scripps Clinic. My current doctor is an Oncology Urologist, however I am not certain how many RC’s he has done, he only just started working at this facility for a year now. I am just going through a lot right now, mostly mentally. Thank you for your support.

    angelgrl

  • cynthia

    Administrator
    October 20, 2015 at 3:06 pm

    Angel, Everything Cat said is true. We are not trying to scare you i can understand not wishing to lose your bladder I entered a clinical trial after an invasive diagnosis in 04. It failed and I underwent the surgery for a radical cystectomy. I thought it would be the end of the world but it wasn’t my life is full and good and cancer free. Please consider a second opinion at a center of excellence for bladder cancer if you are not already being treated at one. As an example my local Urologist did three to five radical cyctectomys a year the Urologist that did mine did that many a week. Dealing with doctors that are not generalists is ok for most things but with invasive bladder cancer outcomes and options are enhanced when dealing with a specialist.
    Good luck and know that you are welcome to be part of our community.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • catherineh

    Member
    October 20, 2015 at 1:20 pm

    Hello Angelgrl… Welcome to our forum. I am very sorry that you had to seek us out due to your bc diagnosis. None of us are medical doctors, but we do have a large collective knowledge of bladder cancer because we (or a loved one) have been there.

    No one would opt for an RC if it weren’t a potentially life-saving procedure. While it is good news that your tumor has decreased in size, you also need to consider that although it is smaller, it is still there. As long as it is inside your bladder, it has the potential to invade further into the muscle wall, especially a high-grade tumor. From there it can spread to other parts of your body.

    I don’t intend this as a scare tactic, but only as information to think about. You’ve probably thought about little else since your diagnosis. It is so very hard to make these life altering decisions. It’s not an exact science… we just have to go with what seems best for long term survival.

    Also we encourage everyone who is newly diagnosed to seek a second opinion at a large hospital that treats many cases of bladder cancer each year (if you are not already at such a place). If you give us your location, perhaps someone here can give you a recommendation. Again, welcome. Please post any other questions of thoughts you may have.


    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

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