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

27 thoughts on “Letter to the Neurologist Who Misdiagnosed My Brain Cancer…

  1. Please know that you were not being seen by a Neurologist, you were being seen by a nurse practitioner…. A Neurologist is a Physician (MD/DO). There’s a HUGE knowledge gap between a Neurologist and nurse practitioner so please be very careful who you trust your care to.

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    1. I know that, but the nurse practitioner was still consulting with an MD throughout the course of my care. Both of them and the radiologist and even the specialist I saw at Mayo clinic overlooked things that in hindsight were pretty obvious.

      And while there may be a knowledge gap between a nurse practitioner who works in neurology and an MD, I have also had to care that is amazing from nurse practitioners in the past.

      This is not an error that was made because I saw a nurse practitioner. It was an error made by several people, and also because this particular practitioner did not listen well. That is a trait I have found in most specialists that I have seen throughout my cancer treatment until I went to Dana-Farber.

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      1. The amount of supervision NPs receive is highly variable. Who knows how much an actual neurologist did or didn’t know about your casee. The Mayo doctor’s mistake was trusting the NPs autoimmune diagnosis. A med student wouldn’t miss this if they’d seen you initially.

        As an MD I am say straight up, you are the victim of gross incompetence/negligence. That NP needs to answer for it. She had no business treating you with their level of training,

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      2. It’s funny that you think a med student wouldn’t miss this when a physiatrist missed it and a radiologist didn’t even have lymphoma as a possibility on the MRI report but listed ADEM as most likely. And also a specialist at Mayo missed it for several weeks-you cannot claim that mistake just on the NP. That physician had their own responsibility to make a diagnosis. And they also did much more testing including repeat MRI that showed that my mass was growing and they still misdiagnosed me and and mistreated me. This isn’t a problem with just the NP. This is a problem with many different types of people that work in the medical field who do not bother to assess their clinical reasoning skills, reflect on their practice or listen to patients. To just simply set there arrogance aside and listen. That is why I made this letter public. I sent it to the office and they are working on some education/competency issues as well as restructuring to try to ensure this type of thing does not happen again. But I still wanted to make this public because so many of my medical providers, mostly physicians to be honest, are simply not reflective, are not open to feedback from me, and do you not listen to their patients.

        Liked by 1 person

      3. Michelle, we’re very sorry to hear that this happened to you. However, please recognize that a nurse practitioner “consulting” with a physician is very, VERY different from actually being seen by a neurologist. In reality, “consulting” often means nothing more than having a physician rubber-stamping their chart to pass cursory medicolegal legal muster. Quite frankly, the fact that this nurse practitioner felt that it was clinically appropriate to mess around with a course of steroids even after getting an MRI that showed *a large enhancing mass in your brain* is downright unacceptable, to the point that if we were writing a post about this on our own site, it would be amply laced with expletives. We regret to hear that you don’t plan on considering legal action, because from the story you’re telling it certainly seems that there could be a compelling argument to be made that the NP who first saw you acted below the standard of care after learning you had a brain mass.

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      4. I know this particular NP, and this entire neurology group. I know for a fact that the neurologist was consulted in person. I also know that the radiologist misdiagnosed me as well. And then the MD at Mayo clinic also misdiagnosed me. I think it is pretty awful that you are all turning this into an issue about mid levels versus Physicians when in reality, throughout this process I have met many physicians who are in capable of listening and have poor clinical reasoning. This is a letter about a series of unfortunate medical care that I received, it is not a letter about mid levels versus physicians.

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      5. Manny states do allow nurses to practice independently. Across the country many nurses are not required to consult a physician (MD/DO) when diagnosing and usually do a great gob at it. Im sorry that this was your experience.

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      6. I know for a fact, because I know this neurology group well on a professional level, that the physician was consulted. I don’t like my experiences being turned into fodder for the mid-level competency versus physician competency arguments. The truth of the matter is is that multiple different physicians missed this diagnosis as well. This is more of a letter geared towards anyone who treats patients. We can all use better clinical reasoning and listen better. That’s why I I published this letter instead of just sending it to the practitioner, which I also did. And that neurology group is making some changes in their education, communication and structure to improve.

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      7. No, they are often not consulting an MD. Only a technicality. What you experienced here was changing legislation allowing nurses with 2 years of often online schooling take care of you independently. If you really want to understand the root of what happened to you, I suggest you look this up in detail. Start with Reddit.com/r/Noctor or r/residency. I am sorry for your tragic story.

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      8. Your arrogance is showing. I worked in healthcare and I understand the difference between the two professions and I understand the law and how many times they are not being consulted. Which is why I took the time during one of my appointments to make sure that the MD was consulted. I spoke with the MD myself face to face. How dare you assume that I don’t understand the root of what happened to me. It happened to me after all and I’ve had many many months to understand it. Please don’t pretend that you know anything about my situation other than what I have shared. The absolute arrogance! Instead of actually considering that you might have your own biases and your own problems listening and your own issues with critical thinking, you just insist on doubling down that the only reason that I had a problem was because I saw a mid-level at first. Please pause and do some self assessment.

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  2. The letter should include her supervising physician. Let’s be honest, ANYONE seeing a specialist should get to see an actual physician. NPs are not trained in rare, difficult to diagnose diseases…most go to online school now

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    1. I agree that she should have referred me to MD right away, but you should also read my other comments. I really do not like my personal medical experiences, but I shared because I want all healthcare practitioners to improve their clinical reasoning in listening skills, to turn into fodder for this competency argument between mid levels and physicians. I can honestly say that some of the worst care that I have received throughout my diagnosis and cancer journey has come from physicians. This wasn’t just a problem because I saw an NP. This was a problem with the Physiatrist I saw, a problem with the radiologist that read my report, A problem with the very specialized and highly trained MD that I saw at Mayo clinic who misdiagnosed me. Having an MD or DO behind your name does not automatically make you a good clinician. It doesn’t mean that you listen to your patience and respect them. It doesn’t mean that your arrogance and ego are not getting in the way. It does not mean that you are not prone also to availability bias and confirmation bias. If you are a medical professional of any kind, this letter was shared so you can take a look inside and examine your own flaws and weaknesses and work on those to better help your patients. It was not shared to vilify an entire profession. In the area that I was initially seen in, neurology often has a three month wait for new patients. NPs and PAs are critical for people to access any form of specialty care in this area in a somewhat timely fashion. Once again highlighting major problems with the entire system. It’s not as simple as “ NPs are incompetent”.

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    2. I wouldn’t see any midlevel for anything complicated like this. I’ve had plenty of PTAs tell me they’re “essentially PT” when I know I need to see a PT. People need to stay in their lane and if a letter behind someone’s name doesn’t matter that much then I’d love to see an NP perform surgery

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  3. Michelle,

    I am so sorry to hear about your delayed diagnosis and I wish you the best of luck moving forward with the CAR T-cell therapy. As a neurologist, I have nurse practitioners who work under my direct supervision and I review every case with them, so to all of these keyboard warriors on here looking to place all of the fault on the NP’s, it is really the attending who is to blame, as it is his/her job to know the limitations of the various healthcare professionals he/she is working with. I’m no way, shape or form should an ARNP be expected to interpret an MRI with an evolving mass. All abnormal imaging should be reviewed by the attending (and maybe it was) and evaluated in context with the clinical findings and your subjective reports.

    Although I don’t see a clear timeline of events based on your post, it sounds like the biopsy should have been performed immediately after the MRI spec and before the referral to Mayo. Either way, this is all in retrospect now and obscures the point you are making of the fact that we all need to listen to our patients and remember that, while uncommon, zebras do exist, and not everyone fits into the same box.

    Thank you for your service as a physical therapist and for the great post.

    Warm regards,

    Dr. Gallagher

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  4. This would almost be a comedy of errors except it’s not funny at all, it’s tragic. Humans are vulnerable to cognitive biases, premature closure is one of the most dangerous. But adding that element of treating people you know professionally adds potential for “VIP” syndrome where clinicians chase a zebra because they subconsciously don’t want to be true. Also the academic center syndrome where things are so sub specialized that the whole human/context is not integrated. But is foolish to dig your heels in a diagnosis when treatments for that aren’t working. “What is my differential? What don’t I want to miss ? Should be an automatic repeating script with every patient every time, but even more so when treatments aren’t working. Delays in dx like this are my worst nightmare as a Family Medicine physician I appreciate you sharing your experience so others can learn from it. I’m so sorry this happened. And while I would sue if in your position, I respect your decision not to.

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  5. Michelle, What has happened to you is so infuriating and heartbreaking. I hope your letter makes an impact on those who failed you. Going through something myself, I chuckle when I read how so many illnesses can take years to be diagnosed. It’s difficult enough getting tests approved but having to deal with being dismissed and/or assured it’s “just” whatever benign thing that comes to mind probably eats up a big chunk of time. I hope your treatment continues to help and that you do well.

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  6. It is inspiring how kind in your words and thoughts you are towards the professionals who failed to employ critical thinking in their work. I can’t help thinking that going legal after them would probably make them reconsider how they work at a much faster pace but I imagine that right now you’d want to focus on your health most. I wish you a full recovery ❤️‍🩹.

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  7. Michelle, I have half a mind to send this to my own neuro-oncology team. Their behaviour hasn’t lead to f-ups (excuse my language) as large as yours but my condition is worse because of their incompetence which includes behaviour by both doctors and nurses.
    Yes, this is a systemic issue but individuals within the system are culpable. I hope this feedback invokes some type of self-reflection around their practice.
    I work in legal services and I understand how difficult it can be to center my client’s directions but I remind myself of their importance every day. Michelle knows the same about physical therapy and her patient’s results. Physicians and nurses should realize this difficulty and, further, realize that this is about someone’s life. Be self aware, listen, acknowledge your limits, allow your patients to challenge you and you’re already halfway to being the best care practitioner that your patient has ever seen in their lives. If that isn’t important to you then quit your job.

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