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.
