Discussion Board Forums General Discussion intrahepatic vs extrahepatic

Viewing 15 posts - 1 through 15 (of 31 total)
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  • #17443
    lainy
    Participant

    paulaalmquist, Congratulations on your successful treatment and this is another good story of why we don’t listen to numbers! Keep up the good work and best wishes to you!

    #17442

    I was diagnosed with intrahepatic as well. I was stage 4 at diagnosis and the tumor had become massive and involved most of my liver. Resection was not possible. A stent was put in and this helped relieve some symptoms including pain. I have a wonderful surgical oncologist and oncology team at OHSU in Portland, Oregon. I am just a few days from completing palliative radiation. I have already gone through 8 weeks of chemo. More chemo is scheduled. Maintaining your healthiest weight possible is critical. I hope the best for all of you!!

    #17441
    lselby
    Participant

    THEY SAID THAT DAD WAS #21 ON THE LIST TO GET A CONSULTATION WITH AN ONCOLOGIST. THEY ACTUALLY CALLED ME AND WE HAVE A TENTATIVE DATE DEC 10TH. I WAS VERY HAPPY TO GET THIS NEWS YESTERDAY.
    THANKS,
    LANA

    #17440
    marions
    Moderator

    Lana,
    Who are you #21 with at UCSF?
    Marions

    #17439
    fatherson
    Member

    Lana,

    My heart goes out to you and your family right now. When my father was first diagnosed, it was at a local medical center and the impression I had was that they did not have any pro-active plan to treat my dad but rather were just going to deal with symptoms as they came. The problem was magnified by the fact that he was on a HMO. That was probably the most difficult week – the feeling that doctors and hospitals would just literally make you wait what seems to be an eternity while the one you love is getting worse before your eyes. So, I started contacting individual doctors directly by email and giving them the dire urgency of the situation and the roadblocks we were facing. To my surprise, I got responses literally that day or the next, with some responses coming as late as 11 PM or as early as 5AM. Next thing I knew, I had consults scheduled to bring my dads records/scans/etc. to both Cedars and UCI medical center. Later, I had the same type of expedited action at UCLA.

    What I realized was that hospitals are as bureaucratic as you can get. As such, going through the typical routes gets you nowhere. Instead, by going directly to the doctor/specialist it is much more likely to get attention right away. I’m not sure if that’s what you did with UCSF but I’d recommend going to their website, looking for the individual doctors (contact multiple) in the specialty and then emailing AND calling their offices. For me, emailing was generally more effective since there is no screener and goes directly to the doctor. What then happened is that the doctor would respond to me ASAP and refer me to his/her administrative coordinators. However, once I had that email response in hand from the doctor, it proved to be a lot more effective than going directly to the office/coordinators.

    Lana, my “advice” really isn’t much but I just wanted to let you know that I’ve had some positive experiences even when it seemed like the hospital was putting us on a “wait list”. Unfortunately, it sometimes requires being a bit of a pest and working around the usual way of doing things.

    Good luck and I hope #21 on the wait list becomes #1 very soon.

    BTW, there was some news on Dr. Canady this past weekend. Apparently, he was suspended by the hospital but he obtained an emergency court order that allowed him to perform procedures for the time being. There are no details on the cause/reason for the suspension by the hospital.
    http://www.pittsburghlive.com/x/valleyindependent/news/s_537317.html

    Richard

    #17438
    devoncat
    Participant

    Lana,
    Ok. You are very stressed right now. It is difficult. YOU ARE DOING THE BEST YOU CAN! That will not take the worry away (and everyone knows I am the biggest worrier), and it will not take the stress away. But it is important to point out. This disease has no right or wrong solution. It is understandable why you went to Dr. Canady and why you want another opinion. You WILL find the right solution for you and your family. I have so much faith in all of us. I think people come in and out of our lives for a reason. Maybe Dr. Canady is the one to help, maybe he isnt. Maybe he is there as a stepping stone to make you look for someone different, or maybe he is the one who will give you what you need. But everyone we talk to about this disease, every perspective we get from them, every ounce of information is important. There are many centers that deal with this cancer, Dr. Canady and UCSF are not the only ones.

    Best of luck making your decision. You will make the right one for you. Just get as many opinions as possible and choose the one you are most comforable with.

    KRis

    #17437
    lselby
    Participant

    DEAR RICHARD,
    AFTER READING SEVERAL OF THE POSTS IN REGARDS TO DR CANADY, I WANT TO GET THE SECOND OPINION FROM ANOTHER FACILITY. WHEN A COMMENT WAS MADE BY ANOTHER PHYSICIAN QUESTIONING DR CANADY’S COMPETENCY, THIS IS NOT A GOOD THING. I AM VERY SCARED RE; UCSF AS THEY TOLD ME THAT MY FATHER IS #21 ON THE WAITING LIST TO HAVE CONSULTATION. THEY WILL NOT EVEN REVIEW HIS RECORDS TO SEE IF THEY CAN HELP HIM. I AM PHYSICALLY, EMOTIONALLY EXHAUSTED…AND STILL DON’T KNOW WHAT TO DO.
    WILL KEEP YOU POSTED!
    LANA

    #17436
    sara
    Member

    I am cross-referencing this summary on this thread since in involves Dr. Canady.

    FYI: I cannot comment on the acuracy of the following summary, but I thought I would post it on here since there’s an ongoing discussion regarding Dr. Canady. The comments provided below were found at the following website: http://www.aana.com/resources.aspx?ucNavMenu_TSMenuTargetID=54&ucNavMenu_TSMenuTargetType=4&ucNavMenu_TSMenuID=6&id=2324

    I will try and provide the actual case soon.

    Canady v Providence Hospital
    The case of Canady v Providence Hospital, 942 F. Supp. 11 (D.C., 1996) is a collection of the legal remedies that are often used to attack the denial or restriction of privileges. Jerome Canady, MD, a surgeon, met with the representatives of a hospital in the District of Columbia, indicating that he wanted to perform vascular and thoracic surgery, as well as general surgery. Over the next few months, Dr Canady met with a number of physicians associated with the hospital, discussing various types of procedures that he wished to perform but, when viewed in retrospect, not necessarily being guaranteed that he would be allowed to do so. He finally received a letter from the president of the hospital informing him of his provisional appointment to the staff, but the letter was silent as to privileges. When Dr Canady inquired what his privileges were, the president of the hospital responded verbally that as far as she knew he had been granted everything he applied for. However, the president of the hospital was not the person authorized to grant privileges.

    Not long after Dr Canady began operating at the new hospital, things went rapidly downhill. Four months after he began performing operations at the hospital he was sent a letter stating that the hospital would not schedule a patient for thoracic surgery if Dr Canady was the private primary surgeon. As a result of problems he was having with the hospital, he reviewed his credentials file and discovered, for the first time, that he had not been given thoracic or vascular privileges.

    Consequently, Dr Canady retained a lawyer and brought suit against the hospital. This resulted in a settlement in which both sides appeared to save face. The suit was withdrawn, Dr Canady’s privileges were reinstated, and Dr Canady agreed to furnish a written second opinion for certain cases. However, it turned out that this did not resolve the matter. Misunderstandings continued about Dr Canady’s compliance, and Dr Canady did not get satisfactory answers to questions about his privileges. Matters continued largely unresolved until winter when there was another incident in which another staff physician questioned Dr Canady’s competence. A proceeding for “corrective action” was instituted, and the process ultimately resulted in the suspension of Dr Canady’s privileges. Dr Canady’s suit is a catalog of legal theories that a practitioner can use to challenge the actions of a hospital in denying privileges.

    Legal remedies
    The first legal theory is a claim that the action of the hospital is a violation of the Sherman Antitrust Act: “Every contract…or conspiracy in restraint of trade…is declared to be illegal.” (15 USC

    #17435
    fatherson
    Member

    Lana,

    I empathize with your situation. As a professional in the medical field, you must be the one that your family is looking to in order to provide the right answer on how to treat your dad. I know how hard that can be since there are so many times when I question whether my choices for my dad are the right ones. One day I want to try aggressive actions to attempt to “cure” dad. Other days I just want to focus on palliative quality of life. Dad pretty much says he wants to do whatever I think is best for him. And that’s why something like the Dr. Canady story is so difficult even though it sounds good.

    I hope that your brother’s adamancy on getting the second opinion from UCSF does not cause any friction within the family. My experience with a large, established UC hospital is that they will likely take a more scientifically proven approach to medicine and not take actions that they deem to be excessively risky. And even if they do say it is ok to go ahead with the surgery, you will still need to decide whether to do it at UCSF or go to PA. I guess what I’m trying to say is that there really is no right or wrong decision. Your dad knows that all of you love him very much and simply want the best for him.

    Lana, ny thoughts are with you and your family. If you don’t mind, could you let me know what UCSF thinks about Dr. Canady’s surgery. Thanks.

    Richard

    #17434
    lselby
    Participant

    Dear Richard,
    I totally understand where you are coming from. I am a healthcare provider. A nurse practitioner. I am realistic about the fact that my father’s cancer could come back anywhere, at anytime. My hope is that he will be able to be with us a bit longer. The way things are going for him, wt loss, fatigue, weakness, vomiting, increase ab pain, I know that without doing anything, he may not make it to Christmas. I am very scared as well, and hope that he will have the health and strength to go through this major surgery. My brother is firm that he would like a second opinion from a large facility prior to going through this procedure with Dr. Canady. So he will send Dad’s info to UCSF.
    Thanks for the support.
    Lana

    #17433
    fatherson
    Member

    Hi Lana,

    I wish you and your family the best of luck with Dr. Canady. Like many others who viewed the Russels video, my first reaction was hope but then it was followed by some fearful apprehension. My father also has intrahepatic and an attempted resection was done in Feb06, whereby the doctors said it couldn’t be removed. The first 12 months were pretty good, but things have deteriorated since June of this year.

    Was your father’s situation the same as far as doctors saying they couldn’t cure it? It really sounds like Dr. Canady is a miracle worker and the thought of that is both optimistic and very scary to me. It seems that he says he can do what no other doctors are able to. I’m so confused.

    Richard

    #17432
    marions
    Moderator

    Lana,
    hoping so much for you Dad to be finding some relief and hopefully a cure but, what struck me is your comment: “and he knows that he will die very soon anyway.” Is his intention to take “any ‘ risk, or would he possibly like to consult with other surgeons in order to have a comparison in re: to risk vs. outcome.
    Marions

    #17431
    lselby
    Participant

    Thank you Kris,
    I really needed to hear that! My family is worried because Dr. Canady called me 2 times. They are wondering if he is a good Dr. I am impressed by the fact that he literally, with the help of God, saved Cindy Russels life. He was also mentored by Dr. Starzl, the WORLDS first liver transplant doctor. Of course I will ask him plenty of questions when we have our first appt. Hopefully sometime this week!
    Wish us luck!
    Thank you again,
    Lana

    #17430
    devoncat
    Participant

    Lana,
    Of course some of your family is scared. It is natural. I was scared, my parents were scared and my friends were scared when I had surgery. Things can go wrong, but more likely they will go right. Only very skilled doctors attempt this, so your dad will be in good hands. Sometimes people have to chose between two very scary options. You and your family are doing what you feel is the best. Nobody that loves you and knows you and your dad will blame you. From what you write, your dad is reaching out with both hands, fighting for a way to improve his life, get better and have more time with his family. People will respect that and not look for blame.

    I pray that everything works out and that your dad finds some relief. Keep up your strength and know that everyone is doing the best they can and that includes YOU. People fear for your dad because they love him not because they think this is the wrong choice. And deep down you and your dad know that if it is possible to have surgery, that is usually the best course of action for this cancer. Stay strong.

    Kris

    #17429
    lselby
    Participant

    I have to let eveyone know that my some of my family members are very scared to see Dr. Canady. They are worried that this may be too good to be true. My dad and I are so excited, hopeful, and have a very strong faith that we feel very good about taking this next step. The only thing I fear is if my father has a complication and dies on the table…, that my family will blame me for the rest of my life. I have to say, though, that my dad is in quite a bit of pain, losing wt, vomiting intermittently, and knows he will die very soon anyway.
    Thoughts and prayers welcome!
    Lana

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