Letter to the Neurologist Who Misdiagnosed My Brain Cancer…

To APNP ———-,

I really hope that you remember me, but in the event that you do not, I will start with a brief review. My name is Michelle Morrow. I have been a physical therapist at ——— for about 8 years now. I have treated many of your patients and vice versa. In January of 2021, I became a patient of yours myself. In August of 2020, I began to experience paresthesias in my right hand and forearm. This gradually worsened over the course of a couple months. When I had an EMG, which was normal, Dr. ——- determined there was likely a central cause to my problems. I was referred for an MRI and referred to see you. A large enhancing mass was found on my left frontal/parietal lobe and based on the radiologist report, you had an initially diagnosed me with ADEM. We began a course of IV steroids. This initially helped some, and then we preceded with plasmapheresis which did not help at all. In fact, during that time, the mass on my brain grew. I had worsening symptoms. We did an MRI spec that was negative for glioblastoma, but inconclusive for lymphoma.

Helga

For Plasmapheresis

I was given another course of IV steroids and was referred to a neuroimmune specialist at Mayo Clinic to attempt to determine if I had MS versus ADEM. There was so much testing required and in the meantime my symptoms continued to get worse – spreading to my leg and foot and my entire face, essentially the right side of my body. By the time I had my follow up with them six weeks later, after yet another round of IV steroids, it was finally determined that I needed a brain biopsy. My mass had grown again. By the time I had the biopsy, I could barely walk with a walker. When I saw the neurosurgeon, he was completely flabbergasted that it had taken this long to get a biopsy. A doctor at Mayo Clinic called me at 7:00 o’clock at night on a Wednesday, so I knew that it wasn’t going to be good news. After having symptoms for nine months, I was finally diagnosed with Primary CNS Lymphoma, aggressive B cell. Nine months. Honestly, I was not surprised. It was relieving to have an answer instead of living in limbo, of not knowing, as I watched my body deteriorate in front of my eyes.

Brain Biopsy Incision

Facial Droop

After trying two different regimens of chemotherapy, my tumor continued to grow. Mayo Clinic said that the only option now was to try palliative whole brain radiation. Being that I am 33 years old and otherwise very healthy, that was not acceptable to me. I searched for other options, and I have since found myself at Dana Farber Cancer Institute in Boston, where I will be undergoing a clinical trial for CAR-T therapy. I have completed five days of focal radiation, which has been very helpful. I’m hopeful the trial will lead to long term remission.

Since I have not been under your care since April, you might be wondering why I’m reaching out to you about my case. I would like to preface any further comments by making it clear that I am in no way seeking any legal action. It is simply my wish to help other people learn from this experience. This diagnosis is a tough one – its prognosis is very poor, especially in people like me who are considered refractory. I have had a lot of time to consider my own life and death, what I need in order to be at peace with the fact that I am possibly going to die very young, well before I am remotely ready. For the most part, I think I handle it very well. Tough things happen to good people all the time and there is no sense worrying about how or why. We just have to focus on what we can control and let go of the rest. That is all I really want – for other people to be able to learn from this experience so perhaps the next person’s disease can be caught earlier and treated more effectively.

After taking so much time to finally get a diagnosis, I found myself asking, “How did we get here?” I was trying to wrap my head around how it takes an educated healthcare professional nine months to get diagnosed with brain cancer, especially when imaging showed such large abnormality early on. I know that hindsight is 2020, but I will own my share the responsibility in missing this diagnosis. I let my symptoms continue too long before I sought treatment because I thought it was a peripheral nerve issue. My symptoms mimicked cubital tunnel syndrome very well and even had an acute onset after overuse. When you were initially discussing my case with me, and diagnosis of ADEM made no sense to me at all. I’m not a neurologist, but I am trained to critically examine clinical patterns and it didn’t seem to fit my clinical course or match up with my symptoms at all. I would normally be a stronger advocate for myself, and I didn’t do that. I thought to myself after the mass grew the first time, “Why don’t we just biopsy it since it is growing despite treatment?” Once again, as a healthcare professional, I should have been a stronger advocate. I also understand my age was a complicating factor, because MS would make so much more sense for someone like me then brain cancer.

Now, I would like to address some of the issues I had with your care specifically that contributed to my misdiagnosis and the subsequent delayed care that I received. I’m sorry if this is hard to hear. Hopefully, you have already spent a lot of time reflecting on your clinical practice and on ways you can improve it. Hopefully, this is all information that you have thought of already and I am just being redundant. However, I know enough healthcare professionals who are not reflective about the mistakes they make, and it costs people their lives. It’s not a risk that I’m willing to take. I will feel much more at peace with my situation if I know that at least somebody can learn something from it.

I think the first issue comes down to availability and confirmation bias. You are used to seeing people my age presenting the way I did end up with diagnosis such as MS or other autoimmune diseases (ADEM). You relied heavily on personal experience and the radiologist report and not on my clinical presentation over the course of time. I distinctly remember a conversation I had with you when I explained that my symptoms were getting worse even though we were treating with steroids and plasmapheresis. You sounded quite frustrated and said, “I don’t know what you want me to do, we are doing the gold standard of treatment, my all of patients with MS or ADEM would be thrilled to get plasmapheresis.” I remember feeling like you punched me in the gut. I didn’t care that it was the gold standard of treatment, I cared that I was not getting better, and you were not listening. It’s like you were trying to fit me into a box that you had already determined was the accurate diagnosis, when my clinical response to treatment should have indicated that there was something else going on. This is when I was referred to Mayo Clinic, and I was referred to neuroimmune specialist. My team at Mayo Clinic never mentioned ADEM as a possibility, and when I brought it up, they told me absolutely not, that it made no sense clinically. They were not confident in the ability to rule out cancer yet but did consider tumefactive MS. It took a few weeks to get all of the testing done that I needed, delaying care further. Then they decided to do another round of steroids over a period of time, and I was to follow up in six weeks. When I came back to see you after seeing them the first time, you asked, “Well, did they agree with me? Do they think it’s ADEM?” I felt like being right was more important to you then how I was doing. By the time I made it back to Mayo Clinic for that six week follow up, it was getting harder and harder to walk and I could barely drive anymore. I told my doctor that I felt like I was literally dying. They finally did a biopsy that next week and, like I said before, the neurosurgeon was appalled that it had taken that long to get a biopsy. Everyone in my support group with this disease had a biopsy done exceptionally quickly after an MRI showed lesions. Nobody else I’ve talked to had a delay like mine after an MRI showed lesions, and all of the lesions people had discussed were much smaller than mine when found.

I don’t know if you have spent any time thinking about my case and wondering if there was something that you should have done better. As a healthcare professional myself, I know that I would be very critical of myself in this situation. I understand that all of us can misdiagnose; we can and do all make mistakes. In healthcare, I understand that sometimes those mistakes have very serious consequences. I do not want you to beat yourself about this but at the same time I needed to express how I am feeling about it to feel at peace. I don’t know if an earlier diagnosis would change the overall outcome, but it could have led to appropriate treatment much faster. I might not have lost function in my leg, I might not have lost my ability to speak for several weeks – my neuro function before radiation was getting pretty awful.

I guess what I am trying to say is that it is very important to me that you remember who I am. Please don’t forget me when it comes to thinking about your critical thinking and clinical reasoning. Remember to check your confirmation and availability biases often. Listen to your patients when they tell you something else is wrong. Check your ego at the door. Always think about the risk to reward of missing certain diagnosis. Please always try to grow and be better for the patients that you serve. They deserve it. I probably sound arrogant or like I am lecturing you, but that’s the thing about having brain cancer: you don’t care so much about convention anymore. I needed to say what I needed to say, so thank you for letting me express that. I assume you did the best you could under the circumstances. I know that you do a lot of work to help your patients and have done well by them for the most part. In healthcare, I think most of us are trying to do the best we can to make people’s lives better. That can be really, really hard sometimes. Please know that I don’t harbor any ill will towards you. I hope that you strive to be the best practitioner you can be, always driving to be better than you were yesterday.

Sincerely,

Michelle Morrow, DPT