Kate – Living Life with Brain Mets

The bad news
In May of 2022, I was diagnosed with hormone-negative, HER2+ breast cancer. Almost every scan or study brought more bad news. The CT showed two small spots in my lungs, which the biopsy confirmed were metastases. I knew that cancer could metastasize to the brain, which was the one thing not getting scanned. I asked the breast surgeon initially in charge of my care if I would get a brain MRI. She agreed that it was a good idea, and said I should ask the medical oncologist who would soon take over my care.

When I met with the oncologist, I asked about a brain scan. She said she’d order one if I wanted, but she felt it wasn’t necessary. She said that if there were brain metastases I’d probably have symptoms, and without symptoms, a brain scan wasn’t recommended. At that point, I had gotten so much bad news that I was happy not to go looking for more. I agreed to let it go. I feared that if I had too many metastases, the treatment plan would basically be to give up before we even started. I had just turned 50, have two teenage kids, and until this, have always been entirely healthy. I’m nowhere near ready to call it quits yet.

The value of community
I’m a pediatrician, and early on I connected to a Facebook group of women doctors with cancer.  Several women with my subtype of breast cancer had encouraged me to ask for a brain MRI after my workup showed metastases. They encouraged me to ask again when I told them that I wasn’t going to get one. They reassured me that if it showed anything, I could still push for full treatment.

I decided to read the medical literature. I found that once HER2+ breast cancer is metastatic, it can metastasize to the brain 20-50% of the time. I also learned that though a brain MRI isn’t yet part of the standard of care for metastatic HER2+, there’s movement in that direction. In the past, brain mets had fewer treatment options, but there’s now SRS radiation and chemo that can get into the nervous system. In medicine, it’s not very useful to go looking for things you can’t treat, but there’s a rapidly expanding toolkit of treatments for brain mets.

So, I messaged my oncologist to ask again for a brain MRI. Continuing the trend of bad news at every turn, it showed a small metastasis. The plans for chemo were suddenly put on hold as I quickly got in for a high-resolution MRI. It showed a second small spot, and a few days later both spots were zapped with SRS radiation before I started my chemo. Fortunately, the follow-up MRI three months later showed that the mets had resolved.

My first oncologist
Both times I asked my oncologist for the MRI, she was perfectly willing to order it at my request. I can’t fault a doctor for following guidelines, which she was doing. But I was dissatisfied with our interactions. When I cited the medical literature that I mentioned above, she shot down my reasoning in a way that I felt questioned my skills as a doctor. When she called to tell me the MRI showed metastasis, one of the first things she said was “Well that wasn’t what I was expecting to find!”. I was devastated at finding out I had cancer in my brain, and she seemed more focused on her surprise at being wrong. As I processed this and learned more, I decided I wanted to consult a researcher in HER2+ brain mets about the best course of treatment. Guidelines take time to formulate, so if the field is rapidly changing – as it is for MBC with brain mets – they may not reflect current treatments and outcomes. I needed an oncologist who was willing to work in partnership with me and with an outside expert. I didn’t trust that my original oncologist was well-suited to that role.

Changing doctors
I asked my contacts to recommend an oncologist in my HMO who was willing to work in a more collaborative approach. As a primary care pediatrician, I didn’t want to manage my cancer care. I  wanted to be treated as part of the team, with valid questions and opinions. As doctors, that’s what we’re taught to do in medical school, but with post-pandemic burnout and the constant crunch of too many patients in too little time, it can be hard to do. As patients, we all deserve to have our questions answered, input treated respectfully,  be presented with our options in ways we can understand, and be allowed to choose what fits best that’s aligned with our values. Any doctor can have a bad day, or accidentally say something a little off now and then. But if you consistently feel like you’re not able to advocate for yourself or get your questions answered in a way that makes sense, it might be that your doctor is not a good fit for you.

I now have a  medical team I trust. I consulted a clinical professor at a nearby medical school with expertise relevant to my case and is available as questions arise. My new oncologist listens to me, gives me my options, and is willing to engage in dialogue. I try to be pleasant and respectful to her because I know I’m not a quick and easy patient. After all, I have a lot riding on this! I also like my breast surgeon and my radiation oncologist and feel like I am treated as an important part of the team. I’m confident that my treatment will be based on the most current knowledge and tailored to my goals. More than any fancy facility or new diagnostic machine, that’s what makes the best medical care.

Natalia – Living Life with Brain Mets

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.

Terry Cohen – Living Life with Brain Mets

Yes, it is malignant

Just as with my early-stage cancer diagnosis, my diagnosis of metastatic cancer and then brain Mets took quite a while. In each case, we weren’t quite sure what I had.

I was diagnosed and treated for stage one breast cancer in 2003. All was well until 11 years later when I started having neck pain. MRIs showed something, but they weren’t quite sure what it was. My oncologist did not think that it was metastasis since it doesn’t often present in the cervical spine, but that’s what it turned out to be. So now I was stage 4 with bone metastasis. I learned to live with uncertainty after these diagnoses.

My first brain MRI 

A few months into the treatment I decided to attend the Living Beyond Breast Cancer conference for people with metastatic cancer.  I didn’t know anyone else with this disease and wanted to meet people and learn as much as I could.  It was a fantastic event, and I met a group of women that became friends and great sources for support. Unfortunately, most of these wonderful women are no longer here, and I miss them very much.

Back to the hotel

I woke up in the middle of the night and felt that the back of my head was sticky. I got out of bed and realized I was bleeding.  I woke up my boyfriend all panicked.  We think I must have hit my head on the nightstand.  I freaked out worrying that maybe I hit my head worse than I thought, so we decided to go to the nearby hospital. The doctor at the hospital gave me a simple stitch. I called my doctor the following day, and she set an appointment with a neurologist who ordered an MRI.  What I didn’t know was that my doctors were concerned that perhaps I had a seizure. The MRI ended up showing a little spot that would not have caused a seizure. The next MRI was a few months later and showed that it shrunk. They said that means it’s either not a Met or the Xeloda is working, however, it reemerged in the following MRI and was larger. I was advised by my neuro team to get rid of it. They recommended SRS (stereotactic radiosurgery), which enables a high dose of radiation to be pinpointed to a single spot.

SRS treatment 

The radiation is composed of hundreds of beams, but they have too small of a dose of radiation to hurt or impact other parts of the brain. What makes this work so brilliantly is the system can be programmed to make sure that the beams only intersect at the location of the tumor, where they now have a dosage high enough to impact the tumor. The former physics major in me was highly intrigued.

For this to work, your head must be perfectly still. This is accomplished in various ways depending on the system used and where you are treated. At my hospital, they use a mask that is customized to your face. The bottom of the mask is screwed into the machine. Once you have a custom mask, you wear it, and it is also screwed into the bottom mask.

Getting the mask made was no picnic. I felt it hard to breathe and swallow and couldn’t wait to get it off.I got used to it pretty fast, which is lucky for me since I’ve used it multiple times since that first time. This is a picture of me right before my first SRS radiation. I was nervous about the side effects, but otherwise, I was comfortable and okay with the mask. I can imagine that claustrophobic people may have a hard time getting used to this.

Here I am after it was over, sending a pic to family and friends.


Ongoing treatment

My main side effect was fatigue. It’s now been over seven years since then, and I’ve had multiple SRS sessions. They typically would break the SRS session into three sessions. In general, it seems to work well for me in that the targeted mets will either shrink, disappear or stabilize. My biggest concern now is wondering how long can I continue to zap away the new mets as they arrive? How can we prevent them from arriving in the first place? I’m looking at new medications that may help make a difference for brain mets.

I recently participated in a clinical trial with Immunotherapy (Pembrolizumab) and SRS. The theory is that the immunotherapy if taken right before the SRS could enable an immune response against the nontargeted mets.  So, for the trial, the radiation targets some mets and we look to see if other mets nearby are stabilizing or reducing, etc. I had some success with it, but I am no longer on the trial since I had a progression with one of the nearby mets. 

My recommendation to everyone is to keep yourself knowledgeable. Keep learning about possible treatments. It does help to learn how to live with ambiguity because there are not always clear answers.

I wish everyone much success with their treatments. Here’s to living life with brain mets!