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Thread: Need cancer center, Doctor advice.... Little overwhelmed at the moment

  1. #1
    Newbie New User
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    Need cancer center, Doctor advice.... Little overwhelmed at the moment

    Good day. My dad has been diagnosed with EC. We are working to get an EUS and PET to formulate a plan. He is working with a local oncologist however, he is in a semi-rural part of Virginia. I say "however" because given EC is not as common as BC for example, I believe we need to find a specialized center for EC. I google for information and I am immediately consumed with ads and "we are the best to treat EC." I am understandably overwhelmed and while fairly intelligent and competent can not process the inordinate amount of data presented to get to a point where I can actually formulate a list of centers and doctors to call and engage. I have been able to find UVA cancer center, Duke cancer center, Georgetown medstar and Johns Hopkins. I have no clue if they are competent, only seek trail candidates, etc. Can anyone here help me? What would be most helpful would be names of centers and doctors who you recommend in and around VA, MD, NC. Dad said he will go anywhere but my initial hope is to find something regional so that our family can visit, support, etc. Thank you for any information you can provide and God bless.

  2. #2
    I'm sorry about your dad's diagnosis.

    The National Cancer Institute's list of NCI-designated cancer centers is here:
    http://www.cancer.gov/research/nci-role/cancer-centers

    When you google, if you include site:edu as a search term the results will all be from educational domains, so the hits you get are mostly from teaching hospitals. You can narrow the search further by using quotes around phrases. Googling for

    "esophageal cancer" site:edu

    should give you some useful results.

    Some patients travel to a major center for diagnosis and surgery, etc. but are still able to get most of their care (such as chemotherapy, blood tests, frequent check-ups) close to home. Most doctors are very good about cooperating and consulting with each other, and doctors at the major cancer centers are aware of the needs of people from rural areas. They don't expect you to drive for hours every time a test needs doing, and you do want to have some arrangements made for local care in case there's a crisis.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  3. #3
    Newbie Top User BobInBonita's Avatar
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    I'm so sorry to hear about your fathers diagnosis. It is always devastating to hear the words. He is fortunate to have someone helping him sort out the options.

    Although I don't have experience in your area of the country, my feeling is that the best centers are generally larger. They have the most experience dealing with less common cancers or cancers with more difficult presentation. Large centers also tend to use a team approach to treatment, where medical oncologists, surgical oncologists, and radiological oncologists work together with other specialists to formulate and execute a treatment plan. Large centers also have the best access to clinical trials. That doesn't mean that there aren't truly skiulled providers elsewhere, just that finding them is harder.

    The National Cancer Institute has a list of "Comprehensive Cancer Centers" that meet their standards of care. They have a website to help people find a designated comprehensive center - here's a link to it:

    Best of luck to you and your father. Please let us know how things unfold.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  4. #4
    My cousin loves Duke. She has been in remission from Breast cancer for 12 years now.
    My husband goes to Baptist/MDAnderson here in Jacksonville. He has on,y gone for one appt. after chemo and for a port flush. The facilities are beautiful though. They start the new hospital sometime this month. If he needs an SCT, clinical trials or anything not offered here, we go to Houston.
    Good luck to you and your Dad.
    His fight is over. How brave he was. 47 years of love.

 

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