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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, July 2, 2009

Frustration in Houston

Yesterday we spent over 6 hours at MD Anderson. Finding parking is a very difficult. We had initially planned to use our one free valet parking, but forgot to leave some of our valuables at home and decided to just use a parking garage. Parking garage 2 which is the closest one to where we needed to be was full, so we ended up parking a few blocks away at garage 10. The hike was hot and tiring lugging all the things we needed and wanted to bring along.

Once we made it to our entrance and went in, we searched for the 'U' elevator we needed. The place is really confusing. They have multiple banks of elevators that take you to different places. If you take the wrong bank of elevators to the right floor you end up in the wrong place. Finally found a security guard and he pointed us to our bank of elevators.

We arrived at check-in early and they got us in right away. I was disappointed that the lady registering couldn't answer questions on some of the things I had to sign, but other than that registration went smoothly.

After registration we grabbed some lunch at the waterfall cafe. With all of the stuff we had to carry we had to take turns getting our food. Jesse went first and the place was rather confusing and he came out the wrong door and didn't pay. I asked him if he had to pay and where to pay so I'd know and he was unsure. He also forgot to grab a fork. I went in and got mine and figured out where he should have gone while searching for the silverware. I explained to the lady the situation and was trying to pay for his salad as well as mine, but she said she needed to weigh them (rather rude about actually), so I went and got his salad so she could weigh them both. We ate and then went back to wait for our next appointment.

We had just found a place to sit and I went to use the restroom, and when I came back the nurse was already trying to take us back. They did the usual weight, height, temp and blood pressure and put us in a room. An intake nurse asked a few questions and then they left us in there for hours. Cell phone and wireless reception were dead in the room, and there was nothing to do, so we both took a little nap.

Hours later the Oncologist arrives. We had about an hour long consultation with him. I did get some information out of him regarding what type of chemo regimen he would prescribe, and also that the order of things was not really important in our case. He said personally, since I hadn't had time to consider all my options on reconstruction, he'd advise me going ahead and starting chemo first. I thought that sounded like a good idea. He also said where I had the chemo done wasn't important. I could have the same chemo regimen here as I could there. He said he'd advise having surgery there due to the fact that their surgeons are only breast surgeons. Their surgeons don't do cosmetic nose jobs and other non-essential cosmetic type surgeries. I think I will explore the one doctor in Dallas still that specializes and see if I feel he is adequate or if I should heed this advise and deal with the inconvenience of having the surgery in Houston. He said as far as radiation goes (which he said it looked like I'd need) the only difference in quality would be the type of machinery they had. As long as the place I was being treated at had the newer machines with the 3D CT Scan, rather than the older ones, I'd get the same quality here as I would there. He also seemed to concur on my concerns regarding inadequate screening methods for women with dense breasts. He did not seem to think bilateral masectomy was a bad option for me.

After the appointment, I asked about a possible consult with a breast surgeon, plastic surgeon and radiation dr there. He said he'd have those set up. I thought he meant that day. It turns out that it would be weeks before I could get in to those. So I may be making a trip back down here in the near future. I also inquired about the rest of my 2nd opinion. I had requested a full second opinion from the biopsy slides up. I was expecting to walk away with all the information I needed to know to make informed decisions. This didn't happen. Since it was so late, there was no way to talk to anyone that evening. We were advised to call back in the morning and speak to an advocate or a scheduler. They also didn't seem to have all of my paperwork in their office and that concerned me. If I wanted my x-rays reviewed I had to leave them there, I hope they dont lose them. We have back ups of the films on cd, but the mammograms and ultrasounds are the original films. I sure hope they don't lose them out there.

I came home rather frustrated last night. I'm feeling like this was somewhat of a wasted trip. About the only thing I got out of this, was that it didn't matter which order I did things in. It helped me to make the decision to do chemo first, while further investigating my options for surgery and reconstruction.

This morning I called the lady who had coordinated my visits. She is also the one I have been faxing all my reports to. She said she takes all those faxes, puts them in a file and gives them to the nurse at the doctors office you are coming to visit. I think there may have been some confusion there, since they switched dr's on me at the last moment. I wonder if the rest of my reports are in breast surgeon's office they had me originally scheduled with? Anyhow, she transferred me over to patient advocacy. Of course I got voicemail.... I left a message and I am awaiting her call.

I called my local dr's office and made an appointment for a consultation with the ocologist there. The doctor I will be seeing is Dr. Krekow. I have an appointment with her Tuesday at 3pm to discuss the possibility of starting chemo first.

I guess we'll be packing up today and heading home. At least I get to see Katie swim on Friday...


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