Home Forums All Categories Metastatic Bladder Cancer Frustrated, Disappointed, Angry at these Doctors!!

  • Frustrated, Disappointed, Angry at these Doctors!!

    Posted by ginagrothe on May 31, 2011 at 1:14 pm

    I have been giving updates on dad since last year. I cannot tell you how disappointed and frustrated I am. Not to mention, heart broken. My dad had a cystecomy last year, I wish his surgeon would of removed his bladder 9 months ago, after the cystecomy. He was healthy, strong and in good spirits! Not to mention the man is ONLY 55 years old!!! No, they said to do chemotherapy first before surgery. After the cystecomy, a petscan was done and showed 1 or 2 lymph nodes involved. Now that I look back, we should of insisted radition therapy be done along with his chemo. We didnt know, we just listened to the Oncologist who in my opinion is a heartless human being who only cares about the size of her check she will be taking home and not the well being of the patient. She said “NO” radiation when I asked her back in January. The first round of chemo didnt reduce the tumor and now more lymph nodes were involved!! You would think at that time they would say lets start radition!! NOPE!!! lets give him another chemo!! That chemo didnt work either and the doctor says No to surgery “It wont be succesful!, Sorry go seek other opinions”

    We went last month and seeked other opinions – Mayo said he should of received radiation. But now he is too weak for it. So no one offers any solutions, just bring your father home and call hospice!

    I cannot belive my father is in this situation, the poor man – only 55 years old. He is the life of the party, loves to sing karaoke, loves life….why is this happening??

    Now, sadly to say he barely has the strength to walk, his voice is a low whisper, he cannot eat or drink as it makes him sick. He looks like a prisoner of war, down to 100 lbs. It just kills me inside. He looks at you with fear in his eyes, he just wants to be able to laugh with us like he used to.

    I just feel like if these Doctors did what they should of 9 months ago, we wouldnt be in the situation we are in today. It is so sad. Not only has he had the worst 6 months of pain, suffering, catheters, blood clots, bleeding, chemotherapy, hospitals, sickness, infections, needles, hair loss, weight loss, the humiliation of not looking like yourself, not being able to even enjoy your last 6 months with your family. It just isnt fair. There are so many questions, that I guess can never be answered and I just hope and pray that he is at peace soon. No one should have to go through this and my heart aches for anyone having to live with this disease.

    jimswife replied 13 years, 8 months ago 6 Members · 7 Replies
  • 7 Replies
  • jimswife's avatar

    jimswife

    Member
    June 12, 2011 at 8:40 pm

    Gina, my heart goes out to you and I wish I could tell you something magical to make your pain and frustration and anger go away. I cannot but I agree with what Herb and George have said. Make the remaining time with you much loved father matter and become among your most happy memories. I watched both my parents at a much later age than your father die slowly and it is among some of the most painful times in my memory bank. But, I also have some wonderful memories of sharing with both of them as their lives slowly closed. I focus on those memories over the sad ones. I recently came across a photo of my late father at the last birthday we celebrated with him and saw that he was so much thinner, had a confused look on his face as if what is this card about, and he looked soooo old. But, honestly that is NOT how I remembered him at all from that time. As others have said, make this time matter more than any other time with your father as those memories are what will carry you through the rest of your life. Meanwhile, know that my love and prayers are with you and your family and especially your father for peace, to not have pain and to know your love.

  • gkline's avatar

    gkline

    Member
    June 10, 2011 at 7:43 pm

    Well said Herb.


    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]

  • herb's avatar

    herb

    Member
    June 10, 2011 at 3:59 pm

    Where Angels Fear To Tread: Just because I lost my brother at 55 to cancer and before that I lost my Dad to Cancer at 57 — and now I fight: I do not have to tell you cancer is a terrible disease. With all the medical folks sincerely, honestly trying to find a final solution we can win a lot of battles but the war is still nasty. I just buried an uncle last week who lost the battle to the same cancer that I continue to battle.

    I have no religious, psychological or magic words to make the anger, fear, and hurt go away. I will say that there are various approaches used in treating cancer and doctors use what they ‘think’ is the best protocal that they have experience with — there are successes but sorrowfully there are too many people we lose.

    I hope you have the strength to contain your anger for it will not help your loved one’s journey — your love and support will make all the difference in the world. I pray that you will be given the strength needed to bare the journey before you. Take Care, Herb†


    Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50’s.
  • 's avatar

    Guest
    May 31, 2011 at 6:24 pm

    Gina,
    I’m a little confused by your post. You said he had a cystectomy but then said he didn’t have surgery? Cystectomy is complete removal of the bladder and surrounding lymph nodes.
    It is terribly confusing…..so many people have a cystectomy with no indication that lymph nodes are involved only to find that they are and have adjuvant therapy after the surgery either to success or not. Why a chemo works on one and not another has to do with gene expression and bladder cancer is in its baby stages in research as to who will respond and who won’t. Some of the larger Cancer centers like MD Anderson and Memorial Sloan and USC/Norris are researching that very thing and maybe a contact with one of them might bring a solution??
    In the meantime at least palliative treatment should be executed.
    I’m so sorry. Florida is sorely lacking in bladder cancer specialists. At least that has been my observation.
    Pat

  • ginagrothe's avatar

    ginagrothe

    Member
    May 31, 2011 at 5:35 pm

    Unfortunately, we did receive other opinions. First, he went to Cleveland Clinic -then Miami Univ. (he stuck with Miami Univ)in the interum of chemo treatments, I took him to Moffit in Tampa, that Dr. confirmed chemo prior to surgery but didnt really say much about radiation. Then last month we took him to Mayo and they would have had him on radiation but by the time we took him there, he was already to weak to receive the radiation. The taxil chemo was brutal. I wonder now, had he not had the chemo if he would of been able to enjoy the last few months instead of being sick, weak, depressed.

    The problem that falls with seeking other opinions is the Dr.’s really dont want to see you when you are already receiving treatments by another facility. They feel it is a waste of their time because they cant undo what someone else has started – so to speak. I wish we would have taken him to Mayo sooner because they are more agressive than Univ of Miami and he would have had better quality of life if they would of radiated the bladder and diverted the kidneys to a bag. It is just a shame….

  • catherineh's avatar

    catherineh

    Member
    May 31, 2011 at 2:42 pm

    Oh Gina… I am so sorry to hear about your father’s situation. My heart is breaking for him, you, and your family. I think George has given you some wonderful insight.

    I know there is no consoling your pain but please know you are in my thoughts and prayers.


    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

  • gkline's avatar

    gkline

    Member
    May 31, 2011 at 2:35 pm

    I am so sorry to read this post. This is the heartbreak of this disease. Right now nothing can console you, so I will not try.

    Time and time again we hear the need for a 2nd and even a 3rd or 4th opinion! Even the best in the business (and maybe this is what makes them the best) know they have to have others look at each patient to get the right treatment schedule.

    Please try and find some good in all of this. The time spent with your father is precious now. Please let him know how much you love him and keep your anger in check. This cancer is an evil bastard and very trickey indeed.

    Our love is with you.

    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]

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