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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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Monday, June 8, 2009

More Phone Calls

On the phone all day again today. This morning I called MD Anderson and spoke to someone regarding my situation. They hooked me up with someone at their breast center (Nelly B Conelly Breast Center). I explained my situation to them and they said that would be feasible to get all the necessary visits done in a 5-7 day period. They checked and said that they had some appointments available the last week of June. They asked me to fax over my pathology report, insurance card and x-rays(????). I have the x-rays, but I haven't figured out exactly how to fax an x-ray yet. I was told to call the center than did the x-ray and they could do it.

I called Diagnostic Health where I had the x-rays done and they said there was no way they knew of to fax the x-rays. I asked about getting copies of my originals... They said they could give me copies of the ultrasounds, but had no way to copy the mammograms. I called back to the person I was supposed to fax the information to and left a message asking what she wanted me to do. She hasn't responded yet.

I received a call from Dr Jonathan Heistein's office. He is a plastic/reconstructive surgeon. They wanted to set up an appointment for a consultation on Wednesday. they will discuss my options should I choose to do unilateral or bilateral masectomy. Added this to my calendar.

Called North Hills Family practice and got Katie's camp physical set up. I had almost forgotten about this! She has to have it completed before she leaves for camp on Sunday. I also picked up a new swim suit and the dress up dress for her "glamour night" at her Glitz and Glam Girl Scout camp. I still need to go over her packing list and pick up a few things and get her packed and ready for camp.

I called Barbara, katie's old babysitter and asked her to help with child care during all these appointments. I'm trying not to put too much on anyone who is helping out. She said she's willing to do hourly drop ins for $5/hr. Nice to have her as a back up and know that I dont have to worry about getting that covered.

Went to the office where I have the genetics testing on Thursday to pick up my information packet. Spent an hour or so going through all that. Made some phone calls to gather information to fill the family history form that's required. The information was really eye opening. If this test comes back positive it can increase my risk of getting breast or ovarian cancer in the future (or a second occurance) significantly. Also, family members would have a 50% chance of carrying the mutated gene, and with it the increased chance for certain cancers.

I also went back to the breast surgeons office to pick up another copy of my pathology report. The last one had some of my personal information wrong on it and I wanted a copy with it fixed to fax to MD Anderson. When I got the copy, they had added some test results I hadn't seen before to the bottom. This is what was added:

  • Estrogen Receptor: 90% positive
  • Progesterone Receptor: 75% positive
  • Her-2 by IHC: No overexpression detected
  • Her-2 by FISH: See separate report
  • Ki-67: 30% Receptive
I called the 24 hr American Cancer Societies hotline to find out what it meant (since my doctors office was closed by the time I got home) and they told me that these stats tell them which types of chemotherapy will be most effective against my type of cancer. They said it was a good thing that these came back positive because that means they should be able to more effectively target the cancer cells.

Also asked them about filing a complaint due to my misdiagnosis. Hoping to get something done to prevent this from happening to me again or someone else. They gave me a resource that will check into the state laws and see if I have a case. If I have a case, they will contact me with legal referral.

Came home, too tired to cook. Went out to Luby's to get some dinner. Then came home and soaked in the jacuzzi tub for a bit. Started re-thinking MD Anderson. If I go there, katie wont be able to go to her swimming lessons. I really dont want to impact her life with this anymore than I have to. Not sure what to do about this yet. Maybe the local doctors would be good enough?


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