ACC , Adrenal Cortical Carcinoma

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tisado
tisado Member Posts: 6 Member
edited October 2022 in Rare and Other Cancers #1

Anyone else recently been diagnosed/treated? I live near Seattle and seem to have great doctors at SCCA who "have a plan".

I had surgery then stereotactic radiation and now getting insurance approval for mitotane with hydrocortisone. Sounds like it is usual treatment. This is tier 5 drug so UHC only covers 75% . My cost will be just $200 a month. We can make that work, no choice.

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  • CSNSupportTeam
    CSNSupportTeam admin Posts: 204
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    Hi tisado,

    My name is Emily, I'm a member of the CSN Support Team. If you need help finding resources or support, please call the American Cancer Society at 1.800.227.2345. There are Cancer Information Specialists available 24 hours a day, seven days a week to answer your call. Or you can visit cancer.org and speak to a specialist through the Live Chat feature Monday-Friday between 7am-6:30pm CST.

    Warm Regards,

    Emily

    CSN Support Team

  • tisado
    tisado Member Posts: 6 Member
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    Got my 6-month MRI and CAT scan done last week. Online results say no new tumors. Have telehealth visit with Dr, tomorrow. Fingers crossed that I am reading the report correctly.

    I suspect that they'll be upping mitotane as that level is 8.6 and she wants it about 14 or so.

  • scott1968
    scott1968 Member Posts: 9 Member
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    Yes I have adrenal cortical carcinoma. It's a rare one isn't it? Mine was stage 3 and was removed last October. I have at nodule/tumor on the right gland also. But they say it is a benign adenoma.

  • tisado
    tisado Member Posts: 6 Member
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    https://www.facebook.com/groups/1046439086194860

    This is a greats support group. way better than Cancer Society page. More active, links to current research etc. You will see me there as Sandy Subert

    I've now had 3 surgeries, 2 series of radiation. Not looking good. Doc say to have fun.