Frustrated

I have been meaning to post for awhile, but I haven't been able to bring myself to actually do it. Every time I think about it I get so frustrated. Things were going great (considering the circumstances). Dr. Reading was great she was coordinating with Dr. Ferguson for a surgery date. I was happy with my Doctors and we found out surgery was scheduled for May 6. I liked that, I was ready to get things done. I found out on Monday the 21st of April about surgery, we also got some insurance papers in the mail. Turns out UPS updated their contracts and switched insurance providers. We knew the contract was coming up so when we found out about the cancer in March Ryan tried calling to see what was going on, he told them about the cancer and tried to explain that we didn't want to be in the middle of everything and find out our insurance had switched. Basically he got the run around and no one could give him any answers, Until April 21 when we found out that as of April 1st our insurance had switched! Instead of IHC being a provider the U of U was the big provider, IHC is not even contracted, which is where ALL my doctors are! I as so upset. The stupid third party insurance ladies we get to talk to are rude and not helpful at all. Basically they can recite what the insurance book says, which I already read. They told me I "could go anywhere I wanted" DUH. Of course I can go anywhere I want, it doesn't mean they will pay for it! I don't think she understands how insurance works. "We will pay 100% of reasonable and customary" She told me, which doesn't help because I would be responsible for the difference! I can't even imagine what the difference would be on that surgery and reconstruction! I wanted to reach through the phone and punch her in the face! I also hoped all the houses of the high ups and UPS would burn! I am so happy their wallets are getting bigger because they can screw their employees by getting a ghetto insurance plan and letting them know about it in the middle of the month!! You can probably tell I am still a little upset about it. It is not that I can't go see good doctors still. We can now go to the Huntsman Cancer Institute, which is good. But it is so frustrating when you have been referred to good doctors, feel comfortable with them and have surgery scheduled in 2 weeks. Now I have an appointment with a plastic surgeon at Huntsman on the day I was supposed to be having surgery, and I can't even get in to see the surgeon until the 14th of May, which means surgery won't be until the end of May (earliest) to beginning of June! We are staring over. I am sorry this is a depressing post.I just can't even tell you how upset, mad, and defeated I have felt. I have been trying to have a positive attitude about this, not easy, people tell me what a good attitude I have, and I feel like I am lying to everyone! I am feeling a little better. I know Huntsman will be a good place to be, I am nervous about meeting new doctors and waiting another month for surgery. Waiting weighs on you, it consumes your thoughts, it steals my days off, it adds tension. My sisters wedding is the end of June. I want to throw her a bridal shower, but when? What if I schedule it and then end up having surgery? If I wait I will still be recovering. I was hoping to feel pretty good at her wedding, I don't want to have drains coming out my sides! I know it is a silly thing to worry about but I do. She is my only sister and I want to be able to do all the things a sister should do. I know she won't be mad and I know she understands, but I don't know if I do. So thats the latest drama in my life. Technically nothing is really happening. Just waiting. Sorry this is such a depressing post. Maybe I will post a happy story next time. Thank you all again for your love and support, you really do make a difference and help me get through the rough days!

Busy week

Its been a busy week! Monday and Tuesday were my last 2 days of school, I am finally done, even though graduation isn't until the 25. I am so grateful everything happened when it did and I was able to finish my last semester. I can't imagine what I would do if I was this close and wasn't able to finish. Tender mercy. Monday during class, well my teacher left a 8:30 and our second class wasn't until 12...my surgeon called twice. The first time she was wondering what I had decided and we talked about options. The second phone call was the stressful one. She wanted me to get an ultrasound. If you remember my MRI showed spots in both breasts. When they do the right mastectomy they will take the sentinel nodes to make sure no cancer has spread, we had talked about that at the clinic. So she wanted to me get an ultrasound of the left breast to check out the concerning spot on that side to see what we needed to do. So then I got the ultrasound scheduled for Thursday. Just thinking about all that and school and work was very overwhelming. Not to mention the surgeon who called is the surgeon we aren't thrilled to work with, but we hadn't had the appointment with the new surgeon yet, we did Thursday afternoon. 8:30 am, too early for me, I went and had a breast ultrasound. I think I was stressed because it seems like every time I go in for a procedure they find some other spot they want to check out. The though of having more cancer spots is really scary. Because I don't want to deal with waiting for the next spot to show up, which inevitable it will, I decided to do the double mastectomy. Back to the ultrasound. The ultrasound tech could not find the spots they found in the MRI in either breast so the radiologist came in and tried and he couldn't find them either. Really there was just one spot on the left side that was really concerning to them. If they had been able to see the spot they would have biopsied it, since they couldn't he recommended talking to my doctor to see what we should do. Either not worry about it since I am doing a mastectomy, or do a MRI guided biopsy, that sounded terrible. If you have ever had a MRI you know how uncomfortable they are, now imagine one lying on your stomach while they do a biopsy! Only 1 1/2-2 hours! I really didn't want to do that. Later Thursday afternoon we had an appointment with a new surgeon. She was wonderful!! I was happy and Ryan was happy! She answered all our questions, she was nice and could talk to us. So relieving, I felt like a weight had been lifted off my shoulders. She said I didn't need to the the biopsy, we would just do the mastectomy and take the sentinel nodes on both sides. I am fine with that. So after a few stressful days worrying why they all of the sudden wanted me to get an ultrasound and biopsy and wondering if there was something they weren't telling me, I finally felt relieved. The decision has been made, I feel comfortable and confident with both my surgeon and plastic surgeon, considering the circumstances I am happy. So there it is. I am getting a double mastectomy at 29. Even though I feel like it is the right decision it is scary! Now we are just waiting for the surgeon and plastic surgeon to coordinate their schedules and let me know when the big day is. Sorry that is a lot of explaining. But that is what is going on in my crazy life! So I was thinking with all these doctors appointments and a hospital stay coming up maybe I should get my own hospital gown, one size does not fit all!

Clinic

Thursday Ryan and I went to a multidisciplinary clinic at the Cancer Center at IMC. Apparently on Thursday mornings a big group of different doctors get together and talk about different cases, like mine, then they meet with the selected patient.We met with a surgeon first, then a radiation oncologist, then the medical oncologist. After the doctors we met with a long list of support people like a genetic counselor, 2 different social workers, a dietician, each came in individually and talked to us for 15-30 minutes...it was a long but good day. We didn't really learn anything new. Basically the medical oncologist said since my cancer is so early and we don't need to do chemo and because we are trying to have kids I won't be on tamoxifen, he didn't have anything for me. Every one agrees that mastectomy is still recommended. If we only do a right mastectomy I have to have an ultrasound biopsy of the spot on my left breast to make sure it isn't cancerous or anything. There is still the option (according to the radiation oncologist) that we can do a lumpectomy and radiation on the right side. But where I already have cancer on that side and a few other spots that would also need to be biopsied if we did that, I think mastectomy would be best. I thought I had decided on a double mastectomy, but after talking to all the doctors about just a right mastectomy it is something I need to think about. We have an appointment next Thursday with a different surgeon (hopefully one who will be a little more personable and easier to talk to) hopefully we will have decided then and can do some scheduling. We have to coordinate the surgeon and plastic surgeons schedules. Whatever we choose to do I hope we can do it sooner rather than later. We have been given so much good information and have so much support not only from doctors and other support staff, but also from friends and family. It has been a little hard for me to put so much information out there, but I hope it helps and everyone can know what is going on. Thanks again for your love and support! We are so blessed!

MRI

First of all let me say thank you to everyone for your thought, prayers, and kind words. Knowing you have so many people praying for you and supporting you makes a big difference. I am so blessed to have you all in my life! This week I had an MRI and got the results back. They did find a few spots on both breasts, most looked benign the radiologist said, there was on that looked suspicious though. If we do a lumpectomy then I would need to have an ultrasound and biopsy to see what the spots are. If we do a double mastectomy they will be taken care of with that I don't need to do the ultrasound and biopsy. Not exactly the news I was hoping for, but we are doing the best we can with it. We still need to talk to the doctor about it and see what they recommend with this new information. Otherwise we are still in the same boat, waiting to talk to the doctors next Thursday. Thanks again everyone, we love you and appreciate all your support!

A difficult diagnosis

I don't really know the best way to go about this. It seems awkward to call people and tell them, and I really don't want to have that conversation that many times! I am not looking for sympathy I just want to let you know what is going on. I figure at some point people are going to start hearing things and I would rather you hear it from me, so here goes... I have the BRCA2 gene mutation, I have known about it for awhile now. Because I have this gene I have a higher risk of getting breast cancer. I have been getting mammograms and breast MRI's yearly to screen for cancer. On March 7 I had my annual mammogram, I got a call a couple days later saying they found some calcifications on my mammogram and want to get a better look so I went back in for another mammogram to magnify the area. The calcifications looked suspicious so they wanted to do a biopsy. I had a biopsy on March 21. On the 25 I got a call that the calcifications were cancerous. I was diagnosed with DCIS or Ductal Carcinoma In Situ, stage 0. Which basically means that the cancer cells are contained inside the duct, they have not invaded the cell wall of the duct or the surrounding tissue or lymph nodes.I had an MRI on Monday to make sure the cancer had not spread and there was nothing in the other breast that the mammogram missed, I don't have results back, but should by the end of the week. I have met with a breast surgeon and plastic surgeon and next week I will meet with a team of doctors and then an oncologist. It has been pretty overwhelming. We are still going over options at this point. But most likely I will have a double mastectomy because of the BRCA2 gene and my risk of the cancer coming back. After the mastectomy I will have less than a 5% chance of getting breast cancer again. Like I said we are still talking to doctors about options and I don't have any surgery scheduled at this time. For those of you who are wondering, yes we have been trying to get pregnant. I started the first round of Clomid in March. Actually at the time I was diagnosed we thought I might be pregnant. I was in the middle of mammograms and biopsy and the OB called and said my progesterone level was high, which meant that "hopefully" I had ovulated and "possibly" I was pregnant. Well I'm not. Maybe it's a blessing at this point, but still disappointing. We will continue trying after surgery, I'm not sure on all the details yet. This is a lot of personal information for me to share, I don't really love throwing my personal information out there on the internet. However impersonal it may seem to some of you that this is the way I have chosen to inform you of my diagnosis, I hope you will support me and not criticize me. It is a lot to deal with and talking about it can be really hard. I am not by any means saying I don't want to talk to people I just couldn't have this conversation that many times. Please feel free to call me anytime. I have been in contact with a few other BRCA2/post mastectomy women and (at least at the moment) feel inspired to keep track of what is going on and maybe help someone else in a similar situation. One of the hardest things for me to reconcile has been that I am not sick. I feel fine, I am otherwise healthy, but I have cancer. I hope to continue to update the blog as we go along and find out more information. I probably won't post much on Facebook about this. My work has been fantastic about helping me work my schedule out around doctor appointments and so has Ryan's. We are very blessed. Thank you all for your love and support.