I like being a student. Learning is something I never get tired of. The work I did as an undergraduate student in a neuroscience lab, as well as getting my master’s degree in library science set me up to be a lifelong learner, but in a way, I did not expect. About six years after I finished my secondary education, I was hurled into CancerLand as a patient who could not sit idly — I became a student of a different kind.

In the first part of 2016, I was diagnosed with Stage 1 breast cancer (HR+, HER2-). I had two little children, no major risk factors, and a generally healthy lifestyle. Becoming a patient was a new role for me, and boy did I have a lot to learn. After surgery, chemotherapy, and radiation were finished, I thought, “Hurray, I can put this behind me and move on!” But clearly, I hadn’t learned that once a patient is touched with cancer, it’s never too far behind you — whether that be a mental state or physical manifestation of the disease itself. In fact, for many of us, it comes back again (if it ever went away at all) in the form of metastatic breast cancer (MBC).

In 2018 life was just beginning again for me after my early stage treatment was completed. I traveled with my family, celebrated a wedding, had a relatively new job, my kids were entering school, my husband and I were bringing to reality the things we put on hold while dealing with cancer treatments, and we were creating a community of wonderful friends around us. But then I found a lump on my sternum — one thing led to another and I was diagnosed with MBC to my bones and one spot in my lungs. I was sent back to being a student again…I had a lot to learn.

I navigated through something unimaginable at age 33 by spending countless hours reading research papers, learning about my disease, talking to my doctors, etc. In that first year, I started planning for the end of my life as I knew it. Nothing could ever be the same, right? As time passed, and that first hard year slipped behind me, I was accepting my cancer reality and living a full life doing things I loved -knitting, studying genealogy, traveling, making plans with friends, cross-country skiing, paddle boarding, walking in the woods, cooking, etc.

The part of CancerLand I wanted to be a part of the most was research. I said yes to any opportunity I could to participate in research — from drug trials, to side effect management, to blood tests for cellular research. Being involved in and up to date on research was something that kept me learning, evolving, and hoping for better disease management, and maybe someday a cure.

Early last summer, I decided to take part in a study at Brigham and Women’s Hospital that was looking at whether or not adding brain MRIs to standard of care would help in early detection and treatment of brain metastases if they were to occur during MBC disease management. For me, at that point, I had progression to my liver, but no indication of brain metastasis. From my research as well, because of my subtype, I was at very low risk of ever developing brain mets. Spoiler alert…I am writing this blog entry on MBCBrainMets.org for a reason 😉

The screening MRI results came back showing a couple of very small brain mets in the back of my brain. I was shocked and so sad to learn of this progression, but also determined to again be my best advocate and learn all I could so I could get back to living. And after doing a full brain and spine MRI I was told that I didn’t just have those little spots on my brain, but I was also living with leptomeningeal disease (LMD). This, I would come to find out, is cancer that is in the cerebral spinal fluid. I had never heard of this before.

With this news, I was plunged back into student mode. I felt like I was learning about a brand new cancer type for the first time. It felt like I was back in the first year of my MBC diagnosis — just barely being able to come up for air, gathering so much information, and realizing just how rare LMD is and how difficult it is to treat. I was low, but I wasn’t without hope. I felt empowered to figure out how I was going to treat this new uninvited CancerLand resident.

I poured my worries and sleepless nights into researching LMD. I knew I wanted to do radiation, and specifically proton therapy. Proton therapy requires a special proton machine, and there aren’t many facilities around the US, plus I was advised not to fly. But I was also told I needed to start treatment quickly, so I agreed to whole brain radiation (WBR) in Boston, and started working on looking for someone to do proton therapy to my spine. I found a facility in NJ that could and would do it. After five daily WBRs were completed, I made plans to head down to NJ (6 hours away) to complete ten daily proton radiation treatments.

Radiation to my brain and spinal cord was a lot like traditional radiation to the breast, but it also had its own unique features. WBR (which used photons) and proton therapy required a special mask to be made to stabilize my head and neck. The mask is quite cozy and required a lot of deep breathing on my part to get past any inkling of claustrophobia, which I don’t usually have. I also had to get small dot tattoos on my hips and abdomen for the proton therapy so that my spine would be in the exact same location each session.

Once the mask was on, WBR sessions were quick and easy – lasting less than a minute; each session of proton therapy was a bit longer – lasting 5-10 minutes each. The side effects of WBR didn’t hit until about a week or so after my treatment course was complete. I experienced hair loss, fatigue, numbness in my toes, balance issues, unusually slow thinking/processing, forgetfulness, and basically any ability to multitask. Everything I did from thinking to walking required deliberate attention. These side effects lasted most intensely for about 4-6 months. I still have numbness in my toes that I don’t believe will ever go away. Since the proton therapy was focused on my spine and spinal fluid I didn’t notice any changes like I did with WBR, with the exception that I had drier skin along my spine, which darkened over time, but never burned.

While I was doing radiation and after, I couldn’t just sit back and recover. I needed to know what was next for me. LMD as a disease is treated almost as if it’s a separate cancer because it doesn’t often respond well to treatment and it can progress extremely rapidly. So I started to talk to specialists who had experience with LMD and made a plan to even start a treatment that was invasive and intense to treat the LMD if it didn’t respond to radiation.

The good news is that my LMD has responded extremely well so far to the radiation (9 months out). It has shrunk and stabilized while being on systemic chemotherapy. I attribute so much of my success with treatment to educating myself on my disease and my treatment options. My love of learning has served me well.

Hi, I’m Natalia!

Here is my breast cancer elevator pitch: I was diagnosed with early-stage breast cancer in 2017 when I was 33 years old, diagnosed with metastatic breast cancer in 2019, and here I am, not dead. I’m from Salt Lake City, UT, and I lived most of my adult life in Phoenix, AZ, until 6 years ago when I moved back to Utah with my family.

I’ve had several progressions, mostly in my bones, but in October of 2020, my cancer progressed to my brain.  There was nothing obvious that made me believe there was something wrong except I had been getting very mild headaches from time to time and I had a small bump (the kind you get when you hit your head) on the top of my head. I mentioned it to my oncology team, and they thought it was worth looking into and ordered a brain MRI. What they found were 2 lesions, one on the left cerebellar hemisphere and the high right leptomeninges. Basically, in the lining between my skull and my brain. Things got really serious when they thought that I might have cancer floating around in my cerebrospinal fluid (leptomeningeal disease). Luckily, I dodged that bullet, and my spinal tap came back clean. I was eventually treated with full brain radiation to shrink those lesions and I have had no brain progression since then.

Mental Health Side Effects of Brain Radiation

However, what I really want to talk about is the mental health side effects of the treatment of brain radiation. In the 5 years, I’ve had MBC, I have never been as blindsided and unprepared for the side effects that came from the medication I took during my radiation. It might seem obvious, but any small amount of messing with the brain can lead to a lot of problems. Because of this, when I started radiation I was prescribed a steroid called dexamethasone (Dex), to prevent swelling of my brain. My radiation oncologist explained that some side effects might be trouble sleeping, an increase in appetite, and some mood changes. That explanation was super mild and over-simplified.

Mood and Sleep Changes

The mood changes were the first thing I noticed. I felt anxious all the time, very on edge, and I had tunnel vision in getting things done around my house. I felt like I was always picking fights and became overly upset over the smallest things.

After the mood changes, I noticed the sleep changes. I was sleeping maybe 3-4 hours a night. What would I do at night? You know, the normal stuff: social media, reading the news, and shopping. One night I stayed up so long that I managed to purchase around $2000 of little things through online shopping. This was very unlike me. Don’t get me wrong, I love online shopping. I tend to be one of those people that get the gratification of putting things in my cart, but not committing to buy the actual items. I normally do pretty well sticking to a budget but am notorious for having buyer’s remorse.

At the time my husband was trying to be supportive, but I can tell he was worried. He was trying to take as much as he could off my plate and get some support from our wonderful family. Later he admitted to me that he did not recognize the person at this time. I don’t blame him, I didn’t recognize myself.

I was feeling different but also having trouble thinking and expressing my thoughts. One night I went to the bathroom, and as I washed my hands, I looked in the mirror and noticed my reflection. I felt that there was someone, who looked like me, staring right back at me. I freaked out, climbed right into bed, and tried to calm myself down until I fell asleep.

The next day I called my oncology team and told them that I thought I was going “crazy.” They reassured me that I wasn’t and were trying to be supportive. At the time they thought they could decrease the dosage of the Dex, but that lead to having seizures and ultimately my admission to the hospital. I was at a loss and started to look up the side effects of Dex.

Mania, Depression and Other Mental Health side Effects from Cancer Treatment

Through basic online research, I found that dexamethasone can cause mania, depression, and other mental health side effects. I went to my nurse practitioner on my oncology team and asked her opinion on whether I was having a manic episode. She told me it was likely. She even told me because of my lack of sleep and the mania, it would be safe to assume I might have been experiencing psychosis.

I was in shock. Why had no one prepared me? Mania and psychosis seem like a little more than some “mood changes.” I was very angry at first—I’m sure the Dex didn’t help—that no one on my medical team was talking about the mental side effects and was only focusing on the physical side effects. I kept thinking to myself, am I safe? I didn’t have any feelings to harm myself or others, but could I? Just the thought of it made me feel uneasy, so I made it a priority to ask for help.

They say “knowledge is power,” and they weren’t wrong. Just knowing what I was feeling was actually a side effect of the Dex that helped me cope with what I was going through. It turned my fear into understanding, it allowed me to self-reflect on my emotions better, and it also helped me pivot my actions to deal with the side effects. Instead of online shopping at night, I would journal. Since I knew I would be easily agitated by my kids, I asked for help during the day. I took more time to rest by following a sleep schedule that would allow my mind to calm down so I could sleep better.

I’m not sure if what I experienced was rare, but I don’t know anyone who has experienced these same symptoms. But there is no way that I’m the only person that has gone through something like this, which makes me think we need to start talking openly about mental illness as a side effect of cancer treatment. I think this should be communicated better with our physicians and our community.

It was scary and lonely feeling these side effects, and I wish I had known or heard of similar stories to normalize my experience. I truly feel like I would have coped better. I share this story to let others know they’re not alone and to notify your medical team if you, friends, or family notice changes in your behavior.