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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Thursday, September 24, 2009

More Frustration at MD Anderson

Here's a log of the last week and 1/2 I've been fighting to try to get a simple answer to the question: "Do the radiologists at MD Anderson feel they can effectively screen me after lumpectomy?"

Called and spoke to someone in screening department at MDA. They told me I had to go through my primary doctor out there, which is my oncologist Dr. Pusztai.

Called and spoke with Gina Garcia, Dr. Pusztai's nurse. She said to send an email using my.mdanderson.org to Dr. Pusztai explaining in detail what I was requesting.

Sent email to Dr. Pusztai, return receipt.

Received a call from Gina Garcia saying that Dr. Pusztai had read the email and agreed that they couldn't help me with this unless I came in and made an appointment with Dr. Pusztai. Explained to her that I was currently in weekly chemo treatments locally and that I only had a week to make a decision. She sent me back to screening.

Called my patient advocate at MD Anderson Sonya Tucker and left a voice mail explaining my situation.

Received return receipt for email AFTER phone call with Gina Garcia

Called Sonya Tucker again, since I hadn't received a return phone call. Someone paged her and I was able to speak with her directly. She said she would take care of the problem by emailing radiologists and speaking with Dr. Pusztai's office. She said she would call back on 9-22-2009.


Waited for call from Sonya Tucker. Did not receive a call.

Frustrated and fed up, I asked Jesse to advocate for me. He called back to advocacy office and spoke with someone named Luz. She said she would make sure Sonya Tucker called us back.

Received phone call from Theresa. She said to call my breast surgeon's office (Dr. Fieg) and speak with his nurse Tina Miller.

Jesse called back to advocacy office and spoke with Luz again. She said she would have Sonya Tucker's supervisor, Michelle Walker call us back.

Called American Cancer Society and asked if they had any external advocates who help with this type of situation. They said they would have a patient navigator call me back in 1-2 days to see if they had any ideas.

Called Dr. Fieg's nurse, Tina Miller. She said she would email radiologist who read the diagnostic mammograms and ultrasounds I had done in August and see if she could get an opinion from them. She says she will call back in 1-2 days.

Received another call from Michelle Walker. She was trying to get me to come in next week to discuss all this. I explained to her that I can't. That I didn't feel it was necessary since I'd already consulted with a breast surgeon while there. She seemed to think I needed a consult to discuss my surgical options again. I told her I was well researched and understood my options, and that I had already consulted with a breast surgeon down there already. I told her to think of it as a post office visit question. I also told her if it was a matter of money, I'd pay for an office visit. At the end of the call she said she'd try her hardest to get me an answer. Hopefully she will...

Received a phone call from Maegan Jansen, Patient Navigator at American Cancer Society. She said if I don't receive a call back from Tina Miller or Michelle Walker today, to call her and she will try to advocate for me.

Getting really frustrated with this! I have MRI on Friday, should have results on Monday, and if it hasn't shrunk I have to make a decision regarding surgery. Without this information, I really don't feel I can make a well informed decision. Why would a cancer center, KNOWING you are already going through a difficult time, make getting such a simple question answered so difficult?


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