Issues with a top-ranked NCI hospital, Huge Anxiety/Frustration
I had my first surgery consult and MO consult this week, and after waiting 2 weeks when the new patient coordinator at the top-ranked NCI I transferred care to, set those up, I find out my imaging is NOT at the NCI. The coordinator claimed to have sent the request form for all imaging, but the imaging center I went to prior to NCI (which has my mammograms + ultrasound that found the cancer) said they only got a request for the biopsy info.
I've asked her twice to request the imaging. I called the imaging center two days ago to check if a request had come in -- no. I emailed her again, explaining my doctors hadn't been able to do any analysis of my case because they don't have my imaging, and can she PLEASE make sure the imaging gets sent. She said she'd re-send it. I call the imaging center today, and no request was received. I finally call her and get her on the phone, and she assures me (early this morning) that she would call today and get it straightened out. Well, it's 4:30pm Friday (she leaves work at 5pm) no follow-up email, and I call the imaging center and there IS STILL NO REQUEST.
After calling the imaging center to see if the fax number is the problem (why on earth did the coordinator not check after 2 weeks went by without receiving imaging???), I found out that there's a specific fax # for orders she's supposed to use - the one on the release form she sent me is the general fax, this number is for orders --- and am waiting for her reply.
My anxiety and frustration is so insanely high right now. I feel like that coordinator totally dropped the ball, and here I am with a ticking time bomb of cancer in my breast waiting to see if my doctors can FINALLY see my imaging before the surgery they want to schedule ~4 weeks from now. Should I just get a CD made and drive (1.5 hrs) to NCI myself next week? The imaging center said it could take 7-10 business days for NCI to receive the imaging.
I thought this NCI was supposed to be one of the top cancer centers in the US, how has my experience been so bad? Coordinator messing up my results, and then didn't fricken bother trying to figure out why she hadn't gotten my imaging for TWO WEEKS UP TO AND INCLUDING the date of my appointments?? This is the same person who told me I didn't need to bring a CD to the appointment because she had taken care of the imaging. I'm so scared/stressed/that this is going to affect my care at NCI (lack of information, etc).
In addition to the new patient coordinator dropping the ball, on Tuesday of this week (now Friday) my surgeon had sent in her PA with pre-surgery paperwork and I mentioned that I had called my imaging center (in between the surgeon and her arrival) and they had not received any request for imaging, and the PA said she would take care of it -- and obviously didn't!
My fear is that the lack of information is going to affect my treatment plan / results at one of the top NCIs in the country. The surgeon and MO said it was IDC stage 1 grade 2 right now based on results and weren't very concerned, but that's ONLY from the biopsy sample and report that they got --- they haven't seen my mammograms or ultrasound to see if there's anything else! So I'm supposed to get a call for surgery scheduled in 4 weeks, and that's been 100% based on the biopsy alone. Is this normal?? Surgeon said she'll look at imaging when it comes in, but it won't be in for who knows how long. The MO told me she didn't even need to see me until after the surgery / sample analysis is done because of my stage. I just feel like I'm the only one worried about my cancer when I'm being treated at one of the top cancer centers in the US, how is that even possible?