Home Forums All Categories Metastatic Bladder Cancer 5 things I wish I knew (Mets)

  • 5 things I wish I knew (Mets)

    Posted by Cynthia on July 2, 2009 at 2:52 pm

    The content working group is busy coming up with content for the update that is being done for the site. We would like for you to give us a hand by answering a question. I am going to post the question under the different categories in the forum so if you fit in more than one place please give us your insight where you feel you can. It is asking you for the five things you wish you knew at dx but if you can only come up with a few or even one please post.

    Thank you

    If not in your signature please let us know you original diagnosis.

    “What are the five things you wished you knew (and think others should know) when you were first diagnosed as having Metastasized Bladder Cancer?”


    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
    CHR replied 15 years, 3 months ago 4 Members · 4 Replies
  • 4 Replies
  • chr's avatar

    chr

    Member
    November 14, 2009 at 3:23 am

    Julie and Leigh

    Thanks for your insight and concern. Yes, the journey does seem to vary individually. That the cancer had invaded the liver caught us flat footed. The blood work was positive as well as the x-rays of the lungs, and since she had a complete hysterectomy as well as lymphectomys (all coming back negative) we felt any bladder cancer migration would be to the lungs. We also felt optimistic in that since her sister had survived breast cancer for 15 years (the sister died from a stroke–unrelated to the cancer) perhaps my wife’s genetics was favorable to a better than average outcome.

    Sifting through the site I did discover that Stage IV bladder cancer may or may not be a three months’ death sentence–which helps. So while I accept Ecclesiastes Ch 9 vs 11-12, we will try to live Eccl. Ch 9 vs 7-9. Thanks again.
    CHR

  • leigh's avatar

    leigh

    Member
    November 13, 2009 at 10:59 am

    Dear CHR,

    I am assuming that your wife’s cancer has progressed and if that is so I am really sorry to read that.

    My Oncologist advised me that the first two years after RC is the risky time for reoccurrence. CT scans apparently can only pick up mets from 4 millimetres and larger.

    It can take a long time for the body to grow a new lesion-tumour and this beast can also grow flat extending the time of detection.

    Having read the experiences of others here at this section the journey differs with each individual.

    My understanding of chemotherapy the second time round would be to use new agents as the first line did not work with a curative intent and with reoccurrence used again would be resistant.

    The cancer can take up residence anywhere in the body although bladder cancer cells tend to favour regional lymph nodes, bones, lungs, skin and liver.

    I am truly sorry that you and your wife are faced with this and I hope that you get all your questions answered easing this journey you both are facing.

    As I am sure you are aware we have an amazing network of forum friends here to guide and support.

    Take good care of each other and please keep us updated on the treatment options offered.

    Kind Regards
    Leigh


    Leigh, 39
    Dx July 2007
    TURBT July 2007
    RC/Neobladder ,Studer Pouch, September 2007
    Erasmus Centrum Rotterdam
    TNM Classification: pT4 N2 Mo
    4 cycles aduvant chemo Gemzar & Cisplatinum
  • julie's avatar

    julie

    Member
    November 12, 2009 at 11:50 pm

    CHR, These are questions I wish I had the answers to. From the list I take it that your situation has changed from Invasive to Metastatic.
    1. I’m not sure that the pathway of metastatic bladder cancer is known. I posted under articles of interest recently a long article about the speculation of the metastatic process. It seems that it takes some time before the lesions become large enough to be visible. They also speculated that cancers may attempt to spread from the initial site from the start and that several things need to occur for the cells to take hold. Apparently we are fighting off cancer cells every day. So what appears sudden has taken some time.

    2.I don’t know about the side effects of chemo the second time around. That would be something to ask the oncologist.

    3. I don’t know if the cancer will spread beyond the liver and intestines. That is outside my experience. My husband had a lesion in his lung and another in the pleura that went into the ribs. I not aware of anyway to predict where the bladder cancer will spread to once it leaves the urinary tract.

    4. I have not seen actuary tables for Mets Bladder Cancer. There may be some research but I was not able to find much research on metastatic bladder cancer. I am aware of people who had chemo who are in remission.

    5. Pain management for Mets Bladder Cancer. I think individual circumstances differ. My husbands oncologist was willing to prescribe pain medication and he saw two different pain specialists. In his case his need for pain medication increases over the weeks and months. There are several pain medications that can be used. Some people tolerate morphine, my husband couldn’t and was switched to Fentanyl patches. Constipation adds to the pain so it’s important to avoid constipation.

    I hope that other people will relate their experience or knowledge regarding your questions. Please let us know how you are doing. We are here to support you in your coping with Bladder Cancer.
    Julie


    Volunteer Coordinator
    ABLSC
  • chr's avatar

    chr

    Member
    November 12, 2009 at 7:27 pm

    1-After two years of CT scans and X Rays every six months, why did the cancer reappear so suddenly?

    2-What are the side effects of a Chemotherapy the second time around?

    3-Will the cancer stop at the liver and intestine or keep on migrating else where?

    4-What are the actuary tables for Mets Bladder Cancer?

    5-How difficult is pain management for Mets Bladder Cancer?

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