Oncologist Update

I’ve been getting asked for updates on my quest to have my records transferred from Novant Health (one Charlotte hospital system) to CMC/Levine Cancer Institute (another Charlotte hospital system and where I had my DIEP flap surgeries), so I thought I’d write up a little blog post to give some insight on that.

First off, in case you’re just joining me here: I am trying to switch hospital systems because I’ve had issues with Novant from the start of this diagnosis. The latest being that two visits – out of three – that I paid to the oncologist recommended to me there were coded wrong, denied by my insurance and resulted in me having to make a ton of phone calls and spend hours (total) on hold – during the time I was supposed to be at work because their offices are only open until 5 – to get sorted out.

Two out of three visits denied + all that time wasted on the phone fighting the hospital and my insurance = a failing grade in my eyes, so I decided not to stick around to wait for anyone to get their shit together. I’m trying to get my own shit together, so, no thanks. And if I’m going to switch oncologists anyway, I figured why not go to the place in Charlotte that ONLY deals with cancer patients and treatment. Not to mention I don’t have much faith in an oncologist who could only recommend conventional medicine as a treatment option (of which there were two that were offered and I’ve already ruled one of them out as an option for me). I’m looking for integrative treatment and LCI offers that. They also have doctors who work closely with Duke in clinical trials, which screams “open-mindedness” to me, which is what I want. A system who makes it their priority to be up to date on all the latest cancer research – especially given my pathology history and the mistakes made with it *by Novant* – is where I want to be.

So, back in April, I called the Novant oncologist’s office to figure out how to get my records transferred over to LCI (Levine Cancer Institute) – they need these records in order for me to even make an appointment, which makes sense. Anyway, the Novant office told me they’d mail me a release form to fill out and send back to their office (they offered to fax it, but I’m living life in 2019 and do not have a fax machine at home or at work, so mail was the only other option). A few days later, I received the form, filled it out, mailed it back, and waited a few days before calling again. When I did they told me they’d gotten my form and forwarded it to the Medical Release of Information office. This office then had 30 days to respond to my request.

So I waited. 

In the meantime, I tried to figure out how to request my records online. I put in two requests and was finally given a link to download them, but when I tried, it was a password-protected zip file that I was not given the password to and of course would not open, so I gave up on that end.

So, last Tuesday, July 16 and more than a month after my form had been forwarded, I called the Release of Information office to see where my original request was in this process. I had to specifically ask about this request with the girl I spoke with because she only originally saw my two online requests. It took her a minute to find the original, but when she did she assured me she would “get them out by the end of the day today.” Which to me said they’d been sitting on them for a while, but I already knew this and, not wanting to piss off the people doing things for me, I didn’t push it.

So a week later on Monday, July 22, I called that office again to see if she’d done what she said she would. I spoke with another woman who told me they’d been faxed, which was not what my original request had asked for. In fact, I had made 3 phone calls and spent a total of 30 minutes on hold JUST to get the correct address I needed at LCI for Novant to mail them to. 

Irritated at this serious waste of time, I hung up with this girl and called LCI to see if anyone happened to see this supposed fax. And after 30 minutes on hold and two transfers, of course, no one had any record of them coming in. 

So I called back the Release of Information office to let them know. I also informed this woman (do no men work in this office??) that LCI did not receive my fax and asked her if they could just mail them to my house instead. That way I can walk them into LCI myself and know that they ended up in the right hands. This lady informed me that she’d have to forward my request to yet another department who then had 72 hours to respond. JESUS CHRIST.

This tidbit of information sent me into a tailspin. I informed her that my original request asked that they MAIL my records to the address on the form I’d filled out and that when the first woman told me she’d be “getting them out by EOD today” I wasn’t aware she’d be faxing them – this entire process was meant to AVOID FAXING ANYTHING BECAUSE ITS 2019 AND NO ONE FAXES ANYTHING ANYMORE. Was I an idiot to assume she’d follow through with my original request?? 

The lady on the phone assured me she understood my frustrations but that they have “processes” that need to be followed. I informed her that I did follow the process, and they were the ones who did not follow through. Meanwhile, I haven’t seen an oncologist in 6 months and have NO treatment plan. I did not have another 30 days to wait for their “process” to happen. In response to all this, she let me know that they usually have an answer well before the 72-hour timeline, and they would give me a call when they do. 

So, yesterday, July 24, I got a call from Lashel who said I need to pay a fee to get the records emailed and that she would email the invoice to me. Once that was paid, she would email my records to me in a pdf form that I shouldn’t have any problems downloading (I asked).

AWESOME!! 

FINALLY SOME PROGRESS!

I received her email a few minutes later. This email contained a link that took me to a page that asked me for a special code in order to log in to see the invoice. I then had to click a link on the page in order to fill in my email address and wait for the automatic system to email me the special code. 

*Insert heavy sigh here*

Anyway, I finally got the code and was able to log in. I was taken to a PDF that had absolutely no instructions on how to pay the $3.50 fee online. The only instructions it gave were how to mail a check to a special office in Winston Salem, NC. It didn’t even tell me to whom I needed to make the check out, so I gave it my best guess. 

I cannot roll my eyes hard enough at this entire situation. THIS is the reason I am leaving the Novant health system and THIS is the reason I get so stressed out about this whole situation. The run-around I got for what should have been a simple request completely sums up the majority of my last year dealing with the Novant hospital system. 

I now have to wait for this check to mail, be cashed, and then hope I don’t have to make yet another phone call to tell them my payment has been received so that they will email me my own records that I should have been able to just walk in and pick up months ago (oh, but Novant “doesn’t do that”). 

THEN I have to hope the email she sends me with records attached will open, unlike the last time I tried to view them online. And only then will I be able to make an appointment at LCI with a doctor that was not my first choice, as I was recently informed that the doctor I really wanted to see is now only accepting patients with active cancer diagnoses and that I do not have anymore. 

So, there it is. It doesn’t matter that I no longer have cancer. It still affects my life every. single. day.