What the @##$@&%@##?

Okay, I am really upset right now! I went for my radiation consult appt. today and that went fine (more about that later) and afterwards went over to my gyn onc's office and picked up my records so I can get the 2nd opinion appt. at Fox Chase. It was an inch or so thick stack of papers so I didn't get to sit down and look through it till this evening. I have been asking my drs. to test my original tumor pathology sample for the Her2 protein. It is relatively rare in endometrial cancers but does exist. My late sister's breast cancer was positive for Her2. It is more aggressive and has a poorer prognosis. So I asked my original gyn onc to test for it back when I finished chemo, have repeatedly asked my med onc to test for it and a couple weeks ago asked my current gyn onc to test for it. He did and the test came back negative (or 1+). So I'm looking through my records and I find both that recent pathology report and also a pathology report dated May of 2005. The May 2005 report says that the sample tested POSITIVE for Her2 (2+) over expression!!!!! It also states that 0% of the cells counted were estrogen positive (which is what my gyn onc was saying my cancer was when I saw him a few weeks ago) and 50% of the 100 cells counted were positive for progesterone receptors (which has never been discussed at all). I feel like I've been punched in the stomach!

Many of you probably have no clue what any of this means. I have some idea, enough of an idea to be upset. Basically being Her2 positive gives me a much poorer prognosis, it is much more aggressive than estrogen or progesterone positive endometrial cancer (just as it is in breast cancer). I don't know why one test would be positive and one would be negative. I have read that 2+ readings are more likely to be false positive or false negative than 0, 1+ or 3+ readings. There is another test that can be done (a FISH test) when a 2+ reading is gotten. The FISH test is considered more accurate and also helps to determine if Herceptin is likely to work. I think this FISH test really needs to be done!

So, why didn't I know about any of this? Why didn't my current gyn onc or my med onc know anything about this (according to the report it was not cc'd to my med onc so that's probably one reason)? And what does this all mean for me? There is a drug called Herceptin that is used in treating breast cancer patients with Her2 positive tumors. They are using it in a Phase 2 trial for endometrial cancer patients (Phase 2 trials mean they really don't know if it will work or not and what dose to use, a Phase 3 trial is a much better trial to participate in). They are doing this trial at Fox Chase (and a couple other hospitals in my area, but not at my hospital). So I need to get into Fox Chase or one of the other hospitals for an appt. ASAP (preferably before my radiation starts) to see what they have to say about all this.

So, back to my radiation appt. I was feeling really good when I got home tonight before the sucker punch to my stomach. I met with the rad onc and initially he was talking about my having a course of 10 to 15 conventional radiation doses. But as we talked he decided that since the tumor was small (the ct gauged it at 1.7 x 1.5 cm) that IMRT (Intensified Modulated Radiation Therapy) would be better. It's a much more precise and much more intensified radiation approach. He felt that we should treat this aggressively and try to really get rid of it and the IMRT would allow a much higher dose than conventional rad because it is so precise it causes less damage to the areas around it. I am going in for the radiation simulation on Monday.

This Her2 wrinkle may have an effect on this because the Herceptin trial requires measurable disease. However I don't want measurable disease if it can be eradicated by the IMRT thank you very much. I have no idea if I could be treated off trial, I would guess that depends on whether the insurance company is willing to pay for it or not (which I would think would be iffy with a phase 2 trial but I don't really know).

At this point I am sure that I am just babbling on and only make sense to those with medical degrees so I'm sorry but I just need to talk this all out. I will be on the phone first thing Monday morning to my gyn onc's office to see what they have to say and to Fox Chase and the other 2 hospitals that have the Herceptin trials to see about appts. and will bring copies of these reports with me to the simulation to show the rad onc also. Why do these things always happen on a Friday night when you can't do anything but stew about it all weekend?