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Frustrated, Disappointed, Angry at these Doctors!!

8 years 4 months ago #38013 by jimswife
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.

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8 years 4 months ago #37980 by GKLINE
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]

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8 years 4 months ago #37972 by Herb
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.

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8 years 4 months ago #37888 by Patricia
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

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8 years 4 months ago #37887 by ginagrothe
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....

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8 years 4 months ago #37881 by CatherineH
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
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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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