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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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Wednesday, September 16, 2009

Navigating Bureaucracy at MDA

MD Anderson has to be the most frustrating health care system I've ever had to deal with. You make a phone call to try to obtain something as simple as an answer to a question, and they send you from person to person. You have to be VERY persistent, even if you go to an advocate, to get an answer. Here is a copy of an email I was told to write, after attempting to get my question answered by two different people.

Date: 09/16/2009 08:15:11 AM
To: Dr. Pusztai Clinical
Subject: Screening
Message: I called the screening department to talk to a radiologist there at MD Anderson, to find out if they thought that I could be effectively screened following lumpectomy. The nurse there called me back and said I could not talk directly to a radiologist. She said I had to go through your office and have someone in your office contact a radiologist and request this information for me. I called your office and spoke with Gina Garcia. She said that I should send an email with my specific question, so here is my question:

I am reconsidering lumpectomy as an option for surgery after consulting with Dr. Feig and several plastic surgeons, including one at MD Anderson, and finding out that my reconstruction options after mastectomy would be severely limited. My concern is that after surgery I will not be able to be effectively screened for a local recurrence due to the density of my breasts. Since I was misdiagnosed here by our local screening facility, I would not feel confident returning to them, so I am interested in having my post surgery screenings done there at MD Anderson. In order to make an educated decision (regarding the type of surgery I have), I am seeking the opinion of a radiologist(or radiologists) there at MD Anderson as to whether they feel they could effectively screen me. I know that mammograms and ultrasounds are not a perfect science, but I am wanting to know if they feel they could, with some accuracy, screen me effectively. I had a mammogram and an ultrasound done at MD Anderson in August. If one of them could take a look at my films and offer an opinion it would greatly assist me in making my decision.

It was mentioned to me that I might have to come down there. This is not an option at the moment, as I am currently doing weekly Taxol treatments. In 3 weeks they will be complete. At the end of the treatments, an MRI will be done to determine if my tumor has shrunk. If it has not shrunk, my oncologist here is recommending surgery. I need to make the decision before then so I can get the surgery scheduled.

Anything you can do to assist with this would be greatly appreciated.


Amy Townsend


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