FINALLY

My BRCA results are FINALLY in. took long enough. 6 weeks for what should be a two week wait! They are negative!!! I do not carry the gene mutation!! I am THRILLED!! Thrilled for myself, thrilled for my daughter, thrilled for my sisters and nieces and thrilled for my son. It carries a lot of cancers with it so I am glad to not have to worry about all of that.


The oncologists office called me on Friday asking if I wanted to do another test called the BART test if my results came back negative. It's $700 and since it's an experimental test, insurance won't pay for it. I asked if my results were in and they said no. Then they called on Monday and said they are in. Fishy to me, but whatever. She wanted to set me up for next Tuesday to come in for my results...um, no. I went in yesterday.


When she called she said, your BRCA results are in and the dr would like you to come in and discuss the results. I KNEW they were positive because who gets called in for negative results?? Stressed out all night and all yesterday morning. All kinds of stuff going through my head. So when he said, it's negative, you don't carry the mutation, I didn't know how to react at first. My mind was so set that it was positive that I kind of sat there not knowing what to say. I asked him, why did you call me in for negative results?? Couldn't they have told me on the phone? He flipped through all my papers and said, actually, I don't know. oy. 


He also asked me how my second surgery went. I said, second surgery? I haven't even had one surgery yet. I've been waiting on these results. He said, oh, how did your surgery go then?    ??????? I said again, I haven't had any surgeries yet. Me & Matt kept looking at each other like, wow. He spent a lot of time flipping through my folder. Then he asked me who I was using for my lumpectomy. I told him, I still want the bilateral mastectomy. I've had 11 weeks to think about it and research everything and I am set on doing this. I have no doubt in my mind that this is what I want, what I'm going to do. He said he couldn't 100% agree with me because if he did, he'd be out of a job. It's his job to preserve the breasts and if he recommended all his breast cancer patients to have mastectomies, then he would be out of work. He said he didn't disagree with me either because if I'm going to live in fear of it coming back...and it does (he said that), and it also goes to the other one, then this is probably the best choice for me. He asked if I had a surgeon to use. I told him about the 2 he recommended...one won't talk to me about it and the other flat out said no. He was very surprised about that. He said he couldn't believe they said that. He said this is definitely an option and lots of women choose this option and it's my body, my life, my decision and he didn't understand why they felt that way. Then he got on his phone and made a couple calls to surgeons and plastic surgeons. I'm still waiting on call backs from them or him.


By the time we left the office I was starting to feel the weight lift off my shoulders. I've been so blah for so long. No energy, just dragging around. I feel such a weight off my shoulders. I can't imagine how I'm going to feel after my surgery is complete and I'm healing and healed. 


I asked him if I did go with the lumpectomy, what would be my treatments afterwards and for the rest of my life. He said radiation for sure, 7 weeks, 5 days a week. This time he said no hormones. I pointed out that last time he said hormones. More paper flipping haha. And also said every dr has told me hormone receptors. He said, we'd have to see after the lumpectomy. That's what I've been afraid of! That they tell me I don't need this and that so I go ahead with the lumpectomy and then they tell me I do need this and that. no thanks! And then he said he'd order MRI's every 6 months, probably for the rest of my life!! 


So then I asked what my treatment would be if I do the mastectomy and reconstruction. He said my numbers were so good on the BRCA report that it would be nothing. My chances of ever getting breast cancer would be extremely low. No mammo's, no MRI's, nothing. Done worrying, done dealing. That's my ticket! THAT'S what I want.


So, now to find a surgeon. I have an appt Friday afternoon with a breast specialist/surgeon. I'm hoping and praying she's on my side. I really want this done and over with.


For now I'm celebrating my good gene's!

Unbelieveable

the receptionist at the dr office told me she would have someone call me for sure today with some answers. it's 6pm and my phone hasn't rang. at 4 I decided to call again. I got no answer twice so decided to call their social worker, who told me to call her anytime I needed anything. I told her what was going on and she said the dr has gone home already and won't be back until Thursday now but on Thursday she will get the letter ready for him to sign and have it sent. I explained to her that I have a surgeon appt Thursday and now don't know what to do.
she asked me what the dr suggested I do. I told her lumpectomy but then he wanted me to test for the BRCA gene so I was waiting on that. she suggested I go with the lumpectomy and then when I get the results, we can go from there. OMG, I lost it on her. I said, so you're suggesting I have the lumpectomy and then if I come back positive, I can go back for the mastectomy? she said, well, the mastectomy would be your choice. I said, I was told that the dr's would suggest a mastectomy if I test positive. she didn't know what to say, just kind of sat there. she said, there really isn't anything we can do until Thursday, he doesn't come in on Wednesdays. nice.

I told her about calling Shannon twice and she has never called me back and never called the lab back and guess what? Shannon left for vacation today! I cannot believe she would leave me hanging like this. you honestly went on vacation without calling me back?! she said, they were really busy yesterday. I said, really, that's no excuse. she couldn't find 5 minutes to call me back and let me know what's going on? she also went on vacation without getting that letter ready for him to sign. so, she was just going to never deal with it? Or deal with it next week, or whenever she comes back from vacation?! I am so pissed. I can't believe this keeps happening to me. Its like a nightmare. I find out I have cancer and no one will help me.

I'm going to my surgeon appt Thursday and telling him I want the mastectomy and I'll see what happens.

White lies

Well, they called back, but it was the receptionist and she had no idea what was going on. She called to tell me that my results weren't in yet. She was all rushy until I said, I know, I called out to the lab in Utah. They told me Dr Pallas hasn't sent in the letter of medical necessity yet and that makes my kit incomplete and they don't accept incomplete kits. She immediately put me on hold to go "check on something". She comes back and says, Shannon is gone home and Dr Pallas isn't available (even though the office is closed), so I will get some answers for you and call you back. I then told her I have an appt with a surgeon on Thursday and I really needed to have these results back because they were going to be my deciding factor between a lumpectomy and a mastectomy (white lie) and now I feel it's a wasted appt since I don't know whether I'm predisposed to the cancer gene so can't make that decision for another month now. Told her the lab told me I could have had my results last week and would have been all set for my surgeon appt but now I'm going with no answers. Also told her that I've been sitting here with cancer for 2 months and I'm getting nowhere with dr appts (crying at this point out of frustration) and I'm getting really sick of all the mistakes which result in delays of my recovery. She was VERY apologetic and said she'd call me as soon as she found something out. It's not her fault, I know, and she's probably wishing she wouldn't have called me and let Shannon call, who was supposed to be calling me, but too late now. She got the ear full. She definitely wasn't expecting me to say I called the lab myself but I'm sick of depending on these dr offices and getting nowhere. Absolutely nowhere. I've never heard of someone being diagnosed with cancer and left sitting for 2 months!


As for Shannon, for someone who showed so much compassion when I was at the office getting my blood drawn, she sure isn't very compassionate when it comes down to it. the lab faxed her several times trying to tell her they needed my letter of medical necessity and she never responded. They called her and she said she'd ask the dr for it and has never gotten back to them. I called her twice yesterday and she never called me back. the last time I called the receptionist said she was with Dr Pallas going over records and she would give her my message which was, I need her to call me back TODAY. Nope, never called. Went home knowing I NEEDED a call from her. I thought once the receptionist told her I was calling maybe it would jog her memory and since she was with the dr she would say, oh yeah, we need that letter for her. But nope, she just went home, not even telling the receptionist what was going on. When this is all said and done and I am recovered, there will be lots of people getting letters of their poor professional and personal skills. I'm really sick of being pushed aside. I know there are people out there with a lot worse cases than me, that need much more urgent care than I do, but I still have cancer. I still need surgery. I still need to be cured. I would like to get rid of it before I turn into one of those cases that need urgent care!


So I'm going to my appt with the surgeon on Thursday, telling him what has happened to me and telling him I want the bilateral mastectomy asap, I want to get this over with and I don't want to go the lumpectomy/radiation/hormone route. I'm sure Dr Pallas' office put me on the back burner because of the decision I've made. After all, it makes no money for them since I won't be needing their services of radiation and hormone therapy. Thanks for your compassion Dr Pallas.

Venting

Really stressed out right now, need to vent. Called the oncologist office this morning to talk to them about my letter of medical necessity they haven't written yet and the receptionist keeps telling me Dr Pallas isn't available and Shannon is busy. I am waiting on a call still. They close at 4:30 and here it is 3:40 and nothing. Called again about 3:00 and she said Shannon was with Dr Pallas going over charts and she will get her the message. I told her it's really important she gets back to me today. Whenever I say something like that, the receptionist gets all business like and snotty. She cut me off twice. I finally talked over her and said, I NEED to talk to Shannon TODAY. If she doesn't call,  Matt will go in there tomorrow on his lunch hour. Believe me, they will wish they had called me back today. =/


He wants to go in but I am trying to deal with this myself. He has enough stress going on and I don't want him going in there and yelling at people when this is something I can deal with. But if they don't call me back today, I know him, he will be in there tomorrow. 


I made an appt with a surgeon for Thursday. The dr is recommended by a friend but I'm so paranoid now after all the bad experiences I've had that I'm really stressed right now. Not to mention that you don't want a bad dr when it comes to someone performing this surgery on you!! So nervous to choose someone. Not feeling very lucky right now...or confident in my dr choices! Hoping for the best. Receptionist was nice =/


I just want all this over with. Been reading all weekend about it and the recovery is scary. Seems you heal pretty good and up and around fast but the total healing is over a month or two and you're very limited on what you can do. One person described it as, hold your elbows into your sides, keep them there and move your arms about. That's your mobility. Matt said like a T-Rex!! So, combing my hair? Make up? dishes up high? anything above your head. no lifting, no closing car doors, no vacuuming, you can't even open your own pill bottle for the first week or two. Never thought about how much you use your chest muscles.


On the good side, no more bra wearing!!!!!!!!!!!!!! I will be FREE! Loving that!! ;)


More when I have more...

More...

I forgot..I called the lab back to tell them to just go ahead and run the tests without the insurance approval because I thought the paper said it was $375, but she said if we don't run the insurance, it's $3340.00!!!!! wow, really!!!??? For a blood test? That's ridiculous!!

talking with Matt this evening, we both have decided that we need to just move on. we've had such bad luck with dr's since moving back to Michigan and we're just going to find a good surgeon and plastic surgeon and get this done and move on. we both need to stop thinking about this all the time, it's driving us crazy...literally. Matt doesn't know what to do to make things better and he said its making him crazy because he's always been the one to fix things and he can't fix this. he has a hard time leaving me all week because he thinks I sit here and think about it all week. Most of the time I don't. I have my days but I try to hide it cause I don't like him worrying about me and he needs to go to work. And I do keep busy. Most days I handle this better than I ever thought I would. but one thing can send me straight over the edge.

And you can bet, if Dr. Pallas' wife or daughter had breast cancer, he would NEVER forget to send in a letter of medical necessity.

PISSED. OFF.

After waiting for 16 days for my BRCA results, I decided to call today, out to the lab in Utah and see what they had to say. Dr office is supposed to be calling me with test results. I ask how long it takes to get results and they say usually 14 days. My heart starts racing, thinking I'm about to hear whether I'm positive or not. She looks up my account and proceeds to tell me that Dr Pallas, the oncologist who ordered the test didn't send in the letter of medical necessity. The lab has been faxing and faxing, several times, asking for the letter before they can run the test. She said she ended up calling on Wednesday because she was thinking they weren't getting her faxes. They were getting them....and not responding. I asked why they weren't responding. She said, I asked too and Shannon, the girl who drew my blood, helped me with the requisition form, said she asked Dr Pallas for the letter of medical necessity and he hasn't given it to her yet. This letter was supposed to go out to Utah WITH the blood and with the requisition form and with the copy of my insurance cards. I could've had my results TODAY had the dr office got off their asses and did their jobs. Every single day I sit here with my phone next to me, waiting for it to ring, thinking today is the day I'll get the results and then I can move on, make appts with plastic surgeons, get this going. Every single day I wake up thinking today is the day. I carry my phone to the basement just in case it rings. I run to it when it does ring. You know what the problem is here?! The problem is that the dr office has already forgot about me. THEY don't have cancer so no hurry to them. THEY don't have to wake up in the middle of the night every single night of their lives and the very first thing as soon as their mind works is the words I have breast cancer. They don't have to wait and wait and wait and anticipate getting their breasts cut off. I left that office and left their minds. Why would they even send the packet out there incomplete? And then just forget about it and not even answer the faxes?? I am beyond pissed right now. I am on the edge of losing it. THE EDGE. right there. one little tiny comment, action, word, mistake away from completely losing it on someone.


So now it's going to be another 2-3 weeks, could be more, before I get results. they have to wait for the letter to get to Utah. Then the lab has to submit it to my insurance and my insurance has to review it all and submit it and see if they'll cover it. And the BART Shannon ordered, they don't cover it. It's $700. I didn't even know what they was. She said it's in case I come up negative. They will run more tests to check better. Screw that. If I'm negative, I'm negative. I'm still getting a mastectomy. 


I tried calling the dr office and lucky for them they were closed. Because I was so pissed off I was crying pissed. I was going to let them have it. I was going to tell them they weren't sitting at home with cancer waiting on a phone call that would change their lives, thanks a lot for forgetting about me. So they will get that call at 8am Monday. Welcome to your work week.


I'm not waiting anymore. The next call after that will be to surgeons. I'm done waiting. I'm done thinking about this. I've had cancer cells in me since December 14th that I know of, longer than that, but who knows how long. I'm done. I'm proceeding with surgery without the BRCA results. Then if they come in positive, then I'll look into getting my ovaries out. I'm gathering all the numbers I've been given by friends and relatives and making calls on Monday for some appts to surgeons. I'm done waiting on people that don't care.


I'm so done.