Home Forums All Categories Newly Diagnosed, New To The Forum Please give me direction.

  • Please give me direction.

    Posted by C1nicole on November 18, 2015 at 3:01 am

    My father has been given a diagnosis of TCC with metastatic lesions in the lung. He is understandably hopeless and is in a lot of pain. Please help me know what to do to help him. We are meeting with the oncologist in a few days. This is happening so fast and it is very overwhelming. Will chemo help with his pain? Please offer any advice. This is beyond heartbreaking watching the strongest man I have ever known become so vulnerable and to be suffering. Thank you.

    Jay replied 8 years, 10 months ago 3 Members · 4 Replies
  • 4 Replies
  • jay

    Member
    November 22, 2015 at 12:39 pm

    I’ve heard some things about Cancer Treatment Centers of America (CTCA) As some of you know, I had both Prostate and Bladder Cancer at the same time. CTCA took care of my bladder first and then the prostate. Both these procedures could not be done at the same time and with the BCG treatments, cystoscopy, etc., both processes to 8 months. Prostates gone, all looks good. Bladder is being treated. Although they are a for profit, my Blue Cross/Blue Shield has seemed to be just fine. I have never thought they were supporting their efforts from trying to get more money from me. And, I couldn’t be happier with all the aspects of CTCA. Before becoming a patient of CTCA, for a few months I went here for that test, there for that procedure, there for labs, etc., I go to one building with CTCA and get everything done. This experience comes from their Phoenix/Goodyear Hospital. There are other facilities like CTCA and I’m sure they are good also, but a visit to check out what CTCA has to offer and a talk with their finance office might be an eye opener. If you live near one of the CTCA Hospitals, the finance people are much better to talk to than their 800 number. Good luck, Jay

  • sara.anne

    Member
    November 21, 2015 at 5:19 pm

    Again, I am so sorry that you and your family are facing this. When does the chemo start? We will hope that this really helps. Radiation has not been shown to be really successful with bladder cancer, and often makes the situation worse.

    Yes, all those forms can be a bit much! I often wonder who reads them. But it is sort of a cover your #@## thing….they are so afraid that if they miss something….an interfering drug, for example…. BTW, Cancer Treatment Centers of America is a for-profit chain whose main priority, as you discovered, is the bottom line. They are not known for expertise in treatment of bladder cancer.

    Will be thinking of you

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • C1nicole

    Member
    November 21, 2015 at 1:08 pm

    Sara Anne,

    Thank you for your words of encouragement. The doctor we met with was very matter of fact. He simply said as we move forward with chemo, one of three things happen: 1) the cancer shrinks 2) the cancer stays the same 3) the cancer gets worse. He said my dad is not a candidate for surgery and that he did not see any reason for radiation? this is opposed to research I have seen. He really did not offer much in line of “hope” or direction as to how to deal with the pain. My father is not one to take pain meds but he is on constant pain. Praying he can get relief soon. He is having severe constipation and we are giving him miralax. I am wondering of this is not due to obstruction due to the pelvic location of the tumor behind, and invading the bladder. It seem like he has to go to so many different doctors: pulmonologist, urologist, oncologist, primary care doctor. Every visit, having to fill out 10 pages of “new patient” paper work. This is exhausting for someone already limited in energy. Are there any places that can stream line his care? I contacted cancer treatment centers of America, but they wont take patients on Medicare, even though he also has a second insurance he pays for. Thank you for offering direction in things you have learned along the way. Prayers your your health as well!

  • sara.anne

    Member
    November 18, 2015 at 3:15 pm

    So sorry to hear about your father. If the chemo reduces the tumor load, yes, it may very well help with the pain issues. Please have your father discuss this as soon as he can with his doctor. There are a lot of things that can be done to help with this.

    Your father is lucky to have you by his side. Based on what you have said about his character, I would bet that once things have settled down he will be right back to his fighting self.

    Sara Anne


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

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