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We need HELP!! I need a NorCal EC Doc pronto!!

Amjosmom
Amjosmom CSN Member Posts: 212
in Esophageal Cancer #1
Okay... here's the story. My dad has been seeing the 1 of 2 oncologists at Kaiser in NorCal. She thinks she knows everything about what he is going through, and as good as she thinks she is... she IS NOT an EC specialist and she DOES NOT know what she is doing. So far, they have denied my dad an ultrasound for a blood clot he had in his leg... TWICE. That was finally resolved. Then, she sent us the results of some other person and nearly gave my parents a heart attack... turns out the record was for a 47 year old woman!! Certainly not my 67 year old father!! They are currently in the process of applying for different insurance, but I need some other sets of eyes to help me search for a WELL QUALIFIED ESOPHAGEAL CANCER DOC in our area. I have stressed that since he hasn't had an opinion from someone in this particular type of cancer field, that we may be going about treatment all wrong or worse not being given the chance of finding treatments that may benefit EC specifically!! Time is of the essence! Please help me find a good one in the Sacramento, CA area or San Fransisco area, if they are accepting new patients and what kind of insurance they take. We are smack in the middle of both locations. He is Stage IV and I know CURE may not be in our cards, but he is doing well and I want every opportunity for him to SURVIVE with the highest QUALITY of life possible. Kaiser isn't cutting it anymore.

Thank you!!

~Jayme
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Comments

  • lenlee65
    lenlee65 CSN Member Posts: 40
    #2
    Suggestion
    Sorry to hear you are having such problems. This might sound off the wall because surgery in Stage IV is usually not an option but check with some good Thoracic surgeons, they might be able to refer you to a good Oncologist. Just a thought.
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  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
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  • Amjosmom
    Amjosmom CSN Member Posts: 212
    #4
    unknown said:

    This comment has been removed by the Moderator

    Thank you!
    I will call in the morning! Thank you!
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  • jaycc
    jaycc CSN Member Posts: 122
    #5
    Help in CA for EC
    Jayme,
    If you are in doubt of your doctor, then it seems the need for a second opinion is critical as you stated. What a rough time with these wrong files, you don't need that extra stress, or does your Dad. I'm not from your area, but I did email you an EC survivor's phone and email in your area that can talk with you if you would like. (on left hand panel of this screen select CSN email)

    There are others on this discussion board far more experienced then I, but do know your journey as another Stage IV caregiver. Stage IV EC is very specialized.

    If you need help with phone calls, I can do that for you from my area.
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  • jaycc
    jaycc CSN Member Posts: 122
    #6
    jaycc said:

    Help in CA for EC
    Jayme,
    If you are in doubt of your doctor, then it seems the need for a second opinion is critical as you stated. What a rough time with these wrong files, you don't need that extra stress, or does your Dad. I'm not from your area, but I did email you an EC survivor's phone and email in your area that can talk with you if you would like. (on left hand panel of this screen select CSN email)

    There are others on this discussion board far more experienced then I, but do know your journey as another Stage IV caregiver. Stage IV EC is very specialized.

    If you need help with phone calls, I can do that for you from my area.

    Another Stanford reco
    Also have another survivor recommending Stanford.


    Just passing along from another survivor,
    Oncologist - George Fisher
    Surgeon - Jeff Norton (he is general though, and there is other Throstic specialist there)

    Insurance is listed on their website
    http://thoracicsurgery.stanford.edu/
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  • jaycc
    jaycc CSN Member Posts: 122
    #7
    jaycc said:

    Help in CA for EC
    Jayme,
    If you are in doubt of your doctor, then it seems the need for a second opinion is critical as you stated. What a rough time with these wrong files, you don't need that extra stress, or does your Dad. I'm not from your area, but I did email you an EC survivor's phone and email in your area that can talk with you if you would like. (on left hand panel of this screen select CSN email)

    There are others on this discussion board far more experienced then I, but do know your journey as another Stage IV caregiver. Stage IV EC is very specialized.

    If you need help with phone calls, I can do that for you from my area.

    Another Stanford reco
    Also have another survivor recommending Stanford.


    Just passing along from another survivor,
    Oncologist - George Fisher
    Surgeon - Jeff Norton (he is general though, and there is other Throstic specialist there)

    Insurance is listed on their website
    http://thoracicsurgery.stanford.edu/
    Like Care
  • Tina Blondek
    Tina Blondek CSN Member Posts: 1,500 Member
    #8
    unknown said:

    This comment has been removed by the Moderator

    Hi Sherri
    Sherri,
    So happy and nice to see you posting and helping others, as usual! Your picture looks great, you look beautiful and well rested! Just wanted to say hi.
    Love,
    Tina in Va
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  • Gail4beagles
    Gail4beagles CSN Member Posts: 15
    #9
    We Need help too!
    HI Jayme,
    My brother has EC as of 7/13/12 and he lives in Hayward. They have been seeing an oncology Dr Arora at the Hayward Kaiser. We have also had a hard time getting referred to a doctor that can look over my brother's case. Dr Arora has given my brother 6 months and said the tumor has now grown and chemo, radiation are not an option because my brother is so weak. He has been having fluid collecting in his lungs. He was given a feeding tube last week but the fluid is now making it hard for him to breathe. We need help! We are not ready to accept this and feel there has to be a way to slow the tumor growth to give us more options to get my brother stronger. Please pass on any info you may have and I will do the same. Please keep in touch. Thanks Gail
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  • Unknown
    Unknown
    #10
    Gail4beagles said:

    We Need help too!
    HI Jayme,
    My brother has EC as of 7/13/12 and he lives in Hayward. They have been seeing an oncology Dr Arora at the Hayward Kaiser. We have also had a hard time getting referred to a doctor that can look over my brother's case. Dr Arora has given my brother 6 months and said the tumor has now grown and chemo, radiation are not an option because my brother is so weak. He has been having fluid collecting in his lungs. He was given a feeding tube last week but the fluid is now making it hard for him to breathe. We need help! We are not ready to accept this and feel there has to be a way to slow the tumor growth to give us more options to get my brother stronger. Please pass on any info you may have and I will do the same. Please keep in touch. Thanks Gail

    This comment has been removed by the Moderator
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  • Ucsf_smile
    Ucsf_smile CSN Member Posts: 79
    #11
    My mom had great treatment
    My mom had great treatment and experience at UCSF dr. Kate Kelley. Give her office a call.

    http://cancer.ucsf.edu/people/profiles/kelley_katie.3354
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  • unclaw2002
    unclaw2002 CSN Member Posts: 599
    #12
    Since your dad is 67 he
    Since your dad is 67 he should be eligible for regular Medicare. It sounds like he is in one of those Medicare Advantage HMO Plans. My dad was in an Advantage Plan with Humana. Humana refused to allow my father to get a second opinion, even when his treating oncologist and surgeon suggested he go to a major cancer center. We appealed the denial and they still refused to pay. My dad, fortunately was able to afford to pay for the second opinion out of pocket. We were lucky and hit the time period when you can switch your Medicare Plan. I switched him out of the Medicare Advantage to regular Medicare (he had Tricare for Life as his supplemental insurance) and for the next two years we never had another problem getting him the best medical treatment available. He went to Sloan in NY, MD Anderson in Houston and UPMC in Pittsburgh in addition to receiving treatment in New Orleans from the local doctors. I will note that we did have a fight to get him the Erbitux off label but that is another story.

    So as soon as I switched him out of the Medicare HMO we had freedom to select doctors and they were all willing to take the Medicare insurance. Indeed, after the experience with my dad I switched my own insurance from an HMO to the PPO at work. Never did I want to face having to get permission to seek medical treatment from an insurance company if my life was on the line. Now with the PPO I can self refer and although I pay a bit more a month I don't worry about the HMO refusing to let me get treated. If at all possible you might want to see if you could get some assistance from the Insurance Commissioner in California.

    Good luck and I hope you can get to a doctor soon --- this cancer is bad and you need the A team on your side not someone just learning about EC while practicing on your dad.

    Best,
    CIndy
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