Elizabeth McSpadden

Four months ago, my headaches became increasingly worse. I advocated for a brain MRI, which showed brain tumors in the dural cavity of my brain. However, within a short time frame, I was diagnosed with leptomeningeal disease due to all ofthe symptoms I was having. 

Fast forward to now, where my brain tumors have shrunk and I've had several rounds of radiation, I'm still left with many side effects and carefully watching for new changes.

My care team has expanded to multiple neuroncologists, a neurosurgeon, radiologists, an ocular oncologist and an ear, nose and throat (ENT) doctor. Any new change in my brain symptoms, from facial paralysis, vision loss, hearing loss, taste, numbness, tingling, headaches, falling or double vision, are all side effects that I need to monitor and speak up about. My brain has become the priority (as it should be) to focus on, yet I am not used to advocating for it. Here I am expected to be so mindful of any and all changes. 

Brain metastases and leptomeningeal disease have taught me a lot about taking days slower and allowing myself to need more rest. Steroids have been a pain but helpful and I hope maybe one day to be off them permanently.

This brain disease has also shown me to be extremely grateful for my support system. Without Team Sunshine, I'd be lost, unable to get to my doctor’s appointments and would be without groceries and meals. Asking for help has become essential in surviving the last few months. Strangely, I've gotten better at it, and I'm not ashamed of needing people. I joke how I am 36 going on 85 most days, but honestly, it's a pretty true statement. These past six months have been such a rollercoaster of symptoms that I've turned into needing so much help.

To me, it's truly scary how a brain disease and three brain tumors can destroy independence within 24 hours.

I'm looking forward to eventually getting a little of my independence back, maybe someday, even all.

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My metastatic breast cancer has caused metastases to my brain, so it's important I advocate for my brain when symptoms arise.

Advocating for My Brain After Metastases from Breast Cancer

When I started having severe headaches back in November 2023 that were not my typical kind of migraine, I became worried. These headaches were on the side of my head and at the front of my skull and they lasted for days. I spoke to my oncologist about these headaches after five days of them not going away with my migraine meds, and she ordered a brain MRI.

Thank goodness I spoke up because it revealed that I had two spots in my dural cavity, and eventually, a third spot that grew near my left ear. After getting a neurooncologist, I endured three rounds of gamma knife to my brain. I also had testing done for leptomeningeal brain disease, a deadly aggressive brain disease. My spine MRIs and spinal fluid both showed negative for it, but it still didn't clear me.

What is leptomeningeal disease? It means it has spread to your spinal fluid and leptomeningeal areas. Side effects are nausea, confusion, vomiting, double vision, seizures and so on. It’s a deadly disease and when left untreated, it’s a scary thing to beat.

After my gamma knife radiation was over, the left side of my face drooped, and I was left with facial paralysis. My cheeks and eyes were numb and I couldn’t smile very well. I called 911 not knowing if it was a stroke or something else and got admitted to the hospital for three days around Christmas.

That was an incredibly hard time in my life — being hospitalized at Christmas — and having my face droop. I also knew that my brain was just not working properly. While being hospitalized as a neuro patient, I underwent further scans (brain MRI) and additional steroids to help with facial swelling.

Once I was released from the hospital on Christmas day, I spent the rest of 2023 getting chemotherapy (Trodelvy [sacituzumab govitecan]) and meeting with my neuro team to understand what was happening with my face. My team believed (and still believes) that although all of the tests showed no evidence of leptomeningeal disease, my facial issues of drooping continued. Now that third spot near my left ear has begun to show early signs of leptomeningeal disease.

I don’t have a textbook case of leptomeningeal disease, but my doctors are concerned that everything is starting to point in the direction of that disease. So to treat this, I got five more rounds of radiation to my face and ended up partially losing hearing in my left ear. I also got an Ommaya brain pod surgically placed, which I will have treatment directly put into my brain. This will avoid my veins, and act like a normal port but will give me fewer side effects.

The treatment will either be Herceptin (trastuzumab) or Herceptin plus Perjeta (pertuzumab). I'm waiting to find out whether I can qualify for a clinical trial for HER2-positive status of my CSF fluid. Either way, the Ommaya pod will be utilized, and I will get this treatment on top of Trodelvy.

Overall, three months ago, I was extremely scared and nervous about my brain metastases. Now I feel a lot more informed having a dedicated team on my case.

It is wild to me to know that it’s not all black and white for leptomeningeal disease. For me, I’ve become so involved in learning about the brain, my side effects and what part of my brain function I am losing.

I still work full-time and want to be able to continue to do so. Thankfully, my support system and Team Sunshine have been immaculate in providing love, care and help.

When I found out I had a metastasis to my brain, I felt so uncertain, until I learned more about leptomeningeal disease.

The Uncertainty of Brain Metastases and Leptomeningeal Disease 

I’ve had stage four cancer for 5 ½ years, and it never dawned on me to name my tumors or cancer. Personalizing cancer didn’t seem helpful at any point. I created a cancer support name called Team Sunshine because it helped me feel supported and loved. I felt more like myself during my first and second years of cancer. After that, my cancer stabilized, so I didn’t need as many coping strategies like naming my cancer tumors. However, I knew folks who had done so, for example, calling their breast tumor “Norman.”

Fast forward to last month, when I found out I have a total of six active tumors between my brain, liver and right eye. Two in each organ, which we found by me advocating my symptoms and asking for scans, for the doctor to investigate and so on. Still reeling from the total shock of the progression to my organs, I hadn’t found a way to deal with the news fully. I felt I was just “surviving” and getting from Point A to Point B again, which was the same as when I first was diagnosed with breast cancer. This didn’t seem as healthy to me, and I didn’t want to crumble to depression around the holidays. My therapist has been amazing in trying to help with all that I have going on with all of my doctor appointments, scans and chaos. I kept trying to write and find the words, but I still at times felt stuck, and couldn’t fully process my feelings.

A few family friends urged me to keep things “simple” for the holidays like decorating and giving myself grace. However, the only thing I kept thinking was that I just wanted to curse my tumors, swear at them and just call them a bunch of names. With this idea, I found a little joy, and the more I focused on the idea of “kicking them to the curb” and yelling at them; it would give them an identity. Thus, it began the hunt to name them with evil personalities after evil characters. I asked friends and family for the best evil characters they could think of, and I’d collect them, and draw names out of hat.

This brought a lot of joy because the name submissions were positively so exquisite. The creativity and responses really showed where people pulled their submissions from. Hades, Jafar, Napoleon, Stalin, Hitler, Mao, Sarun (evil eye from Lord of the Rings), Dracula, Dr. Jekyll and Mr. Hyde, Ursula, Gaston and so on.

The final names are: Brain- Voldemort and Putin; Ocular Right Eye - Cruella and Hannibal Lecter; Liver- Scar and Ivan the Terrible

Brain radiation started on Dec. 14, finished the week of Dec. 18 and chemotherapy will resume on Dec. 22. How cool will it be to say, “I’m off to zap Voldemort and Putin today!” and then when chemo resumes, I can say “Were kicking Scar and Ivan the Terrible to the curb. Watch out!”

Then when I have my scans, hopefully we can say “They all died!!!! Or at least a few of them!”

I didn’t think creating personalities for these tumors would help me, but having such severe side effects from the tumors, and knowing the pain they’ve caused, and what they’ve taken from me, it does help. It has made a difference. My battle cry is so much stronger — my fight to push harder and stay on the path is so focused. My attitude is pure might, and I’m so much less scared. I’ve put my fears into fighting all of them, and finally the weight of this diagnosis feels a little lighter. For reasons I still don’t understand, giving characters and personalities to these tumors really helped with some of the stress and anxiety of the progression into my organs. It is something I have feared of happening with my stage four breast cancer, knowing that once its in my organs, it’s a more severe prognosis. Tissues can only be radiated so much, and tissue is more sacred.

To Putin, Voldemort, Cruella, Hannibal Lecter, Scar and Ivan the Terrible: with every fiber in my soul and being, with the help of my fantastic medical team at Northwestern and Mayo Clinic, with the support and love of Team Sunshine, all six of you will be kicked to the curb, annihilated and cursed. You are hated, unwanted and wished by many to never return!

To all of you reading, I hope this article brings you joy and a few laughs.

With love, grit, grace and gratitude from Team Sunshine

I've found a little bit of joy in naming the six active tumors in my body. 

Naming my Tumors Helped Me Process My Grief

After five and a half years with my stage 4 breast cancer in my bones, I’ve learned when to speak up when something isn’t right. This can be when I have questions, felt something was missed or not covered during an appointment, wishing to discuss something, following up on something that was talked about, or even a test result.

Most recently, I started having headaches that were unlike any other kind of headache I’d had before. These were constant, very painful, dull ache and hard to sleep with. After almost two weeks of them, and no medication helping, I communicated my pain to my oncologist, and asked for a brain MRI.

Thankfully, my oncologist put the brain MRI request in stat, and we got it scheduled pretty quickly. After a grueling hour in a loud tube, the brain MRI was over, and I just had to wait for my results. The following day I was at my radiation oncologist appointment to follow-up, and my brain MRI results were in. Luckily, he was able to read them with me, and go over the results. I had two lesions in my brain that had cancer, and there was the potential for leptomeninges or pachymeningitis. Due to the fact I was with my radiation oncologist, he could act swiftly, talk to my care team, order additional testing, and get the ball rolling.

I was so grateful that I had spoken up for my brain, and that I had this amazing care team.

At the same time of all of this, for several weeks, I kept having issues with my gallbladder, and heartburn, so I finally asking for an ultrasound of my gastrointestinal system to see if we could get anymore details. My GI doctor ordered one, and it came back with spots on my liver that looked like cancer, which prompted the need for an MRI. A liver MRI was ordered, and sure enough, the same spots on my liver lit up. I now have two spots on my liver that will need to be biopsied.

With progression between my brain and liver, I began on weekly chemo because I ran out of options that were oral medications. Every medication that was an oral option had failed me — Ibrance (palbociclib), Kisqali (ribociclib), Xeloda (capecitabine) and Orserdu (elacestrant) had all not worked for me, or stopped working for me. We 

even tried Enhertu (trastuzumab deruxtecan)

, which is a targeted chemotherapy, but I am in the 10% of patients that get a rare side effect that develop a lung disease like pneumonia.

After a few rounds of my gemcitabine/carboplatin chemo, I started to develop vision issues in my right eye (not as a side effect from chemo), but rather as another issue altogether. I saw squiggles, blurry lines, had no peripheral vision in the lower half of my eye, and had a shadow (curtain) in my right side. After seeing the eye doctor, he saw a blob on my retina, and sent me to an ocular oncologist. With some panic and anxiety, I underwent more scans of my eye, and pressed on. This doctor determined I had two ocular secondary tumors in my right eye from my metastatic breast cancer advancing to my skull and now my eyes. Horrified and surprised, I was speechless, but it made sense for my vision issues.

I begin this upcoming week three rounds of gamma knife brain radiation to my two brain lesions. While I am nervous and anxious for brain radiation, I am beyond excited to get rid of my headaches. I’ve stopped driving between the brain side effects, and now the vision issues. It was an easy decision because safety first, and I have to take care of myself, and not harm anyone else.

I am still processing the fact that I have six tumors in three organs of my body; it’s a lot to take in, and I don’t know how sane people process this news. The days and nights just pass quickly with all of my doctors’ appointments, and I take them in great stride, just allowing myself to take it one day at a time. Thankfully, I have a great medical team, support system and I can work from home. Beyond all of that, I am eternally grateful for every day I am alive, and for advocating for myself. Had I not done such, my six tumors may not have been found. It gives me such hope that I still fight so hard for this body and don’t give up. Deep down, it’s why I continue to share with all of you, and why I continue to advocate for others. All of our bodies are important, and our stories, too — how we discover the truths of our medical issues, and find out information can lead to important lessons.

While hard news may still take time to process, it is still absolutely important to always speak up, fight for our symptoms, and always keep the hope & faith that what we are doing is the right thing.

With love, grit, grace & gratitude from Team Sunshine

Soon after experiencing headaches and other symptoms, I spoke up to my oncologist — and I’m glad I did. 



Elizabeth McSpadden

Advocating for My Brain After Metastases from Breast Cancer

The Uncertainty of Brain Metastases and Leptomeningeal Disease

Naming my Tumors Helped Me Process My Grief

Speaking Up About Symptoms Led to the Discovery of Cancer Progression

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