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Long Distance Advocacy

13611
Posts: 2
Joined: Dec 2013

Hi everyone,

My mom was diagnosed with lung cancer ("at least" stage III, according to her lung specialist) in May, and just completed 7 weeks of 5 day/week radiation in October. She lives in SC with no immediate family nearby -- my sister and I both live in other states, and work full time. How can we make sure our mom is getting the best possible care if we're not there to be her squeaky wheels? She's on Medicaid, and it seems like those patients are the lowest priority. Last week they let her rot in the waiting room for more than two hours for an appt. where she was supposed to be told how her doctors wanted to proceed with her treatment. (She is also supposed to have chemo, and possibly surgery after that.) She finally gave up and went home, and asked to reschedule. They didn't reschedule her for almost another MONTH, and told her nothing about her treatment status. This will make two months that she will be going without treatment. (The radiation kept the cancer from growing/spreading, but it didn't shrink any of the cancer spots, as they'd hoped.) I called her lung specialist in frustration, and he had NO CLUE what my mom's treatment status was. He tried to tell me she's still doing chemo treatments, and they planned to restage her after that. I had to tell him she's had NO chemo as of yet, and completed radiation more than a month ago. My mom has only met her oncologist once, and this doctor declined to meet with my sister and I when we flew to town to meet our mom's doctors. (I had made an appointment through the nurse, but the oncologist canceled it, because she had "nothing to report.") What can we do to keep our mom from being ignored and forgotten?

dennycee
Posts: 667
Joined: Mar 2011

Please get a second opinion ASAP.  There is a National Cancer Institute affiliated hospital in Charleston- Hollings Cancer Center.  She should see a lung cancer specialist.  Find a dr she trusts and treats her with respect.  

 http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html#SC

13611
Posts: 2
Joined: Dec 2013

Thank you, I will look into that.

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