They kept telling me to get a biopsy, but that was entirely wrong.

The mismanagement of crucial records and lack of conscientious administrative practices can cause unnecessary trauma for patients, or worse, result in mismanagement of care with deleterious results. 

I presented the front desk of my primary doctor’s office with my mother’s genetic results showing her recent RET+ Medullary Thyroid Cancer diagnosis on January 3, 2024, as I knew this would be needed to get authorization for my own genetic testing. I asked for scripts for both bloodwork and an ultrasound. 

This should have been a simple process, but what resulted was delayed care and unnecessary stress. On January 6th, I went to the lab for a blood draw, only to hear two weeks later that they didn’t have authorization to run the genetic testing, and they would need to dispose of my sample as it was no longer viable. When I called my primary care office, they directed me to call my insurance company. When I called my insurance company, they insisted that authorization documentation needed to come from my doctor’s office. I even sought assistance from a wonderful non-profit organization, Community Health Advocates, who joined me on a call to the insurance company on January 25th. I had given documentation citing medical necessity, so why all the run around? I felt rudderless, like no one was paying attention or advocating for me! As a breast cancer survivor, the idea of facing another cancer diagnosis was already stressful enough. 

Meanwhile, I went to get an ultrasound on January 12th. When I arrived, they said that they hadn’t received a script. I have come to expect this as an experienced cancer patient, so I called my doctor’s office from the waiting room. The person I spoke with there said the script had been sent to the lab, and not MD Imaging. The technician spent a long time on this sore spot I had noticed on the lower part of my neck, and I couldn’t hold back my tears. Part of me knew what was coming. 

I called the doctor’s office to speak with someone at the desk and sort out this genetic testing authorization delay, and they told me to just go get a biopsy. This person was not a doctor, and in fact, this was exactly the wrong thing to do in my case. What I needed was genetic testing and a referral to an oncological surgeon who specializes in endocrinology. 

The ultrasound confirmed a suspicious nodule, and still no authorization for genetic testing. I could not get anyone on the phone at the doctor’s, and had to physically drive to the office to speak to someone. At the office I was told that my mother’s genetic results were not in my file, and were nowhere to be found. I brought this paperwork in again only to then learn that the authorization had been denied and the short window to appeal the denial had lapsed. I asked the gentleman I spoke with to try and setup a peer-to-peer review and that was denied. Again I was told to “just go and get the biopsy.” 

Thankfully my annual oncology appointment happened to fall on January 29th, and my oncologist had his nurse do the blood draw for genetic testing right there in the office. It would be another month until I had results that confirmed that I too share the RET gene mutation, putting me at a high risk for MTC and a few other types of cancer. I now have surgery lined up for May 1st, nearly 4 months after learning about my genetic risk. 

Having had a breast biopsy, I knew it would be multiple punctures directly into my throat. This seemed incredibly scary and invasive, especially if ultimately a thyroid removal was going to be required. I kept wondering if this were cancer, would this procedure start spreading cancerous cells around? My surgeon agreed that a biopsy would have been unnecessary and invasive. A total thyroid removal is what is required in my case given my family history, and for the fact that 3 small nodules had been confirmed. Blood work is indicating that I may already have a case of medullary thyroid cancer, but that can only be confirmed post surgical biopsy. I am just hoping that it is localized and hasn’t spread anywhere else in my body.  

I am not in the business of medical practice management, but I have managed teams and done extensive administrative work. I want the practice staff and associates at my doctor’s office to understand the incredible strain it puts on patients to expect them to drive the medical authorization process. I do not have access to the portal that communicates between insurance and my doctor. Staff need to be checking on this. By the time I had received the denial in the mail, it was obviously past the 3 day window to appeal. This is simply not a functional system or what I would consider 1st world medical care. 

If you are reading this with a detached clinical mindset, perhaps you are thinking, “medullary thyroid cancers spread slowly and surely this patient is being overreactive,” but that would be missing the point. If I present as a little anxious, it is because I should be. I sadly have too much first hand experience with cancer as someone who was diagnosed with breast cancer nearly 10 years ago at the age of 36. I know what it’s like when scripts aren’t sent, when much needed imaging discs aren’t mailed, when care team members aren’t communicating, and when medical practices fail to send much needed documentation on to insurers. Is this a staff shortage issue? Are local jobs being farmed out to call centers far away? Why did my paperwork end up at the bottom of some recycling pile? Please. For all the patients out there struggling with medical trauma, please do better. 

I happen to be a strong self-advocate and a savvy admin person, and this was time consuming and stressful for me. The not knowing is hard. The not knowing and feeling like the doctor’s office that is the gatekeeper for your care isn’t minding the store is intolerable. It is hard to imagine seniors or people with debilitating mental challenges trying to navigate this broken system with much success. If this falls into hands that sincerely want to make meaningful changes in practice management and patient communication, I may be willing to have a follow up conversation with you after I get the care I need and have some time to recover. 

Thank you for reading. 

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For those of you who know me personally, and are feeling worried or shocked…Me too. I can barely digest this myself. I needed to write this letter to make it real. Sigh. Sorry to tell you this way. I’m OK. I’m keeping my eyes to the horizon, breathing and keeping busy. I needed my “processing” to be more than a cathartic release. I plan to share this with my primary doctor’s office next week and hope I can inspire change for other patients out there with medical trauma.

This beautiful painting is by Rakīa. Check out her Insta and buy her work here.