Mom was dx

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  • #35245
    mlepp0416
    Spectator

    Talex:

    So sorry to hear of the loss of your Mom. Generally a liver resection is the only ‘cure’ for cholangiocarcinoma. However with that being said, there are some other options for getting one into remission with this kind of cancer also.

    My husband Tom had a resection in June 2008. Unfortunately, all too often, even after a liver resection, this type of cancer reoccurs in about 5% of those who have had a resection. My husband Tom has had a reoccurance. He developed Jaundice in Nov. 2009. He now has a new tumor in the remaining right biliary tree. Because of it’s placement and because it involves the main blood vessel, it is inoperable.

    We did seek 2nd and 3rd opinoins both prior to his initial surgery and also for his reoccurance. His first oncologist told him to go home and prepare and that radiation and chemo were not an option.

    Your questions will most likely never be answered. Instead of asking your self the “should have’s” or “could have’s” focus instead on the positives of your mother’s life. Remember the wonderful things she accomplished in her life. Remember all the people whose lives she touched. She is at peace now and no longer has to suffer with this terrible disease.

    My husband Tom currently has an external drain tube to try to bring down his bilirubin level (it was up to 24.7) and he just finished 28 radiation treatments to shrink the inoperable tumor. His bilirubin level is now down to 9.1 but it has been a very bumpy, painful, exhausting road which he is now traveling. He has said that there are days when he wishes he’d just died on the operating table.

    I can only be there to support him in whatever he decides to do, to go forward and continue fighting, or to give up. I do agree with you in that if you have a loved one who is going through this type of surgery you need to be there with your loved one. You need to question all the things that they are doing and question why they are doing them. If I had not been there for Tom to be his advocate, I’m positive that he would have never left the VA Hospital in Milwaukee.

    Talex, go with God and prayers from Wisconsin are coming your way.

    Margaret

    #3150
    talex
    Member

    My mother was diagnosed with Bile Duct Cancer(cholangiocarcinoma) last January, she had surgery 2/05/09. They told us that surgery was the only cure and that her tumor could be removed successfuly and that she would only need a mild course( few weeks) of chemo afterwards, “just to be safe”. They did remove 75% of my mother’s liver. . She passed away 14 days after surgery, in the hospital. She was doing well ( they moved her out of ICU 3 days after surgery) up until about 10 days post op, then she started getting worse. It is almost a year later and I am still asking what went wrong… One Dr. that I consulted with said that she may not have died from what they did not do (after care) after surgery but wheter he questioned if she should have had the surgery in the first place, if she was a good candidate. All I can say is to do your research. Get a couple of consults. I wish I would have done that with my mother. And be there at the hospital with your loved one, they need to have someone there that can be an advocate for them, I trusted that they were doing everything correct and I don’t think they did. My mother went to California Pacific Medical Center in San Francisco and I would not recommend that hosptil or team of Dr.s’ to anyone. My mother’s gastroenterologist sent her there.

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