I've been waiting since last Thursday for THE BIG RESULTS which would answer all of my questions and help me know exactly what to do surgery-wise. But that's not what happened. All last week they did tests. They took blood which I thought was for my genetic testing to see if I had the mutant gene, did a heart test (echocardiogram), CAT Scan of the pelvis, chest and abdomen to look for anything fishy, and a bone scan to see if the cancer was in my bones.
The bone scan turned out fine - no cancer in my bones. Heart test was fine - my bod should respond okay to chemo with no problems. CAT Scan showed some dense material in my kidney and left ovary. So I'll be getting an ultrasound to check that out on Friday. She said she was pretty sure it wasn't cancer but just wants to "dot all the i's." To me that's her way of saying "Crap it's probably cancer but I don't want to say anything." Whatever. When I asked about the results for the genetic testing she said she didn't know that I'd had blood taken for that yet (???) and checked with her nurse who said the folks that do the test are still checking with my insurance to see if the test is covered. !! Apparently the blood they took that day at her office was to check on liver and kidney function. GAH. So yeah I'm mad about that since surgery was going to be based on those results.
I just feel like the oncologist office is wishy-washy right now. And when you have this many doctors (surgeon/oncologist/plastic surgeon) they don't or won't or can't talk to each other to find out what needs to be done. It's like they're all on different pages. So I'm really frustrated. Here my mom left work to come meet me there and I feel like we didn't do anything new.
I did get a better idea about the time table for treatment. At this point I'm going to have a mastectomy and be done with it. I JUST WANT TO GET THIS BALL ROLLING. She said if I have the surgery on the week of the 20th, then chemo would start on Sept 11 and and go through December. Radiation would start in January. I know you guys are all tellin' me not to worry about school and work and stuff - just to concentrate on my health - but realistically I can't help but look at the big picture. I need to know how soon this stuff is going to be done so that I can know when I'll be going back to school and get my life back on track. That being the case I told her "no" for clinical trials regarding chemo. I need them to know what they're doing so I can get going here.
Wednesday morning I'll be visiting the surgeon to discuss the surgery. He's going to be antsy when I tell him that I insist on having the expander put in at the time of surgery and he'll use the scare tactic of "possible infection" but I don't care. I want it done right away so I dont' keep having to go back for surgeries. I've got the time to recover now since I won't be going to school this semester anymore.
Anyway, that's what's going on. I may look into finding a support group or something so I can vent and just to hear what the other women had to go through. I wish there was a group of younger women to talk to who have young children and are trying to go to school, etc. rather than the older set whose children are grown and have different lifestyles.
Sorry for venting. I'm just really frustrated right now. I'm afraid my poor surgeon is going to get an earful tomorrow. But I feel like the only person willing to actually put their foot down is me. If it's really "all my choice" then here ya go. Like it or lump it, doc.
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3 comments:
I know things are a little crazy right now but going ahead with the mastectomy is the right way to go. I TOO would opt for the immediate expander. Why go through another surgery when you don't have to. Also, to me it doesn't sound like anything is wrong with the other organs. Don't get too worked up over this. It's not likely that the tumor would go to the kidney before the liver or bone, so don't stress too much on that. The ovary is likely a cyst but without the genetic testing its hard to say. I don't know exactly why they didn't do the testing but you should keep insisting. This would have made the decision easier. Do go and find a local support group. In the meantime you can check out http://www.youngsurvival.org/bulletin-board/
This website is specifically geared for younger women. Many of them also talk about being mutation carriers for BRCA1 and BRCA2. Hope this is helpful. You can see what other people have done and even join the discussion board and have others respond to your concerns. This group also tends to be on the younger side <40.
That looks like a cool website, thanks Julie! I also wanted to thank you and Aunt Penny for keepting tabs on me. Penny tried to call the other night and the machine cut her phone number off. ?? Please let her know I'm fine but I'm sure she knows exactly what I'm going through so I shouldn't have to tell her. I am mad about the genetic testing and about my onocologist justifying it by saying "well a bilateral would mean a longer recovery anyway" - !!! Jeesh. No, it's called "let's get MOVING people." Anyway I'm going to check that site out some more. Thanks again!! :)
Ok, I did not raise you to have pink hair!
Can Jill do mine too? I want blue.
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