Julia was diagnosed with breast cancer in 2013 while pregnant with her son, and scans following his birth showed it had already metastasized to her brain, liver, and bones. After many setbacks, the cancer started responding to treatment, and Julia has made it her life’s mission to use her bonus time to make cancer research more patient-centered, innovative, and inclusive.
Introduction & Background on Julia
When my brain mets were found I was asymptomatic and there were three spots and they were treated with Gamma Knife. They were tiny. And my doctor said that we would treat them with this radiation, that it was very effective, that it was a treatment that was minimally invasive and that I would possibly, and hopefully, be able to continue my treatment for the cancer from the neck down. And if they ever popped up again, we would find them fast because we were always checking my brain.
So what happened with me was what happens with many people that have brain mets. And after you receive one treatment, you have a few scans and then the scan looks a little different. Does it look different because you radiated that area? Or does it look different because perhaps the cancer’s growing again? And then you do a couple more scans over the months leading up to – maybe it is growing too much and something does need to be done.
And I went through that a few times and did have two more radiations. So out of those three that I initially had, only one of them kept coming back. We treated it twice more and at that point it was probably going to be the last time that I could do radiation to that same spot. So the doctor started talking about possibly changing my systemic treatment, my chemotherapy.
And at that point I had done treatments that had made me very, very sick. I had had heart problems. I had ended up in the hospital, cardiac ICU. I had come very close to dying from the side effects of drugs that I had taken. So at that point I was on the drug that was actually not being too toxic to my heart and I was handling it quite well and it was effective against the cancer. So when they suggested possibly changing my systemic treatment, my first reaction was, “no, don’t take this drug away from me!” This has allowed me to live, to live my life.
I still have to go get infusions. I still have to go get scans. I still have side effects right after the infusion, but I’m not in the hospital in the intensive care unit. So don’t take this drug away from me. And I told my doctors, “do whatever you have to do to my brain.” Like, cut it open if you have to, but don’t take away my systemic treatment.
They said, well, that is an alternative. We could open your brain and remove what’s there. And if we do that, we’ll actually know exactly what it is. So that’s when we started exploring the idea of a craniotomy.
We were leaning towards a craniotomy. And I actually did meet with the surgeon at the hospital where I was being treated and I had excellent care. And I mentioned to my doctor that I would be willing to travel, if I had to, to go see the best neurosurgeon for my situation. And he said that he went to school in a particular place and he had this – I don’t know if he took his class, or if he just knew of him – but this was a world-renowned brain surgeon at Sloan Kettering. And I used to live in the Midwest and he said I can send him an email and say like, you may not remember me, I was in your class many years ago, but I have this patient and she’s willing to travel to New York and I think that you can help her.
And so he arranged that for me, and it did happen. I first traveled to New York to meet him. And I went to Sloan Kettering – this immense, very known cancer center, and entered the building. And those are memories that I still have. And walking up, or taking an elevator in a high rise up to this man’s office. And when I get there, he’s sitting in there and he’s older. Probably in his seventies – he’s retired since. So that was close to the last few patients, probably that he operated on.
And I entered his office, and it was a big office. Very messy, with books everywhere and a board and a big screen, a TV screen. And he said, well, have a seat. I did, with my mom, and then he pulled up my scans on that TV. It’s like a big image of my scans. And he used a pointer and was like, oh, this is where the spot is that we’re going to remove, and we’re gonna go in through here. And then I’m going to travel like with the – whatever the tool is that they use. And I said, well you’re going to go all the way there and you’re gonna come in through here – what happens like with all this brain stuff on the way?
And he looks at me and he’s like, you don’t need that. And I was like, okay. My brain mets had not really affected my balance or anything. Balance because in the cerebellum, that’s usually what they worry about. But, of course, with having them cut into my brain and remove parts of it, you wonder like, how are you going to wake up? What is going to be missing?
So I went back home. I prepared for – like, it took a couple months when I was able to travel there again. We scheduled the surgery, I went, I did pre-op and did everything that has to be done. Went in for the surgery and they did the surgery. I dunno – I think it lasted three to four hours. I don’t remember. My family probably remembers exactly.
But when I finished, they brought me to a post-op room and I woke up and, you know, they check like, can you talk, can you hear, can you move your arms and legs? And everything seemed fine. And I knew where I was. I remembered why I was there. And, yeah, apparently I didn’t need whatever he had to go through.
Recovery Time (Part 1)
So after having brain surgery they take you to the post-op room and I don’t know how long after you wake up. So I woke up. I think they did bring my family in to just say hi to me. And, before, I stayed there for a longer period just to recover in that room. And eventually was brought to a room in the hospital.
I don’t remember having pain. And I do remember them saying that there’s not too much pain with brain surgery. I was then brought to a room and I spent – I think I was supposed to spend at least a week in the hospital. And in the end, I spent maybe four days. I spent less than I had to. My recovery was excellent. I mean more than anything, it’s like, yucky. Like I don’t remember pain, I remember pressure. And the nurse would come and check and clean a little bit. But, you know, all the hair – well, they do shave the hair right around the spot. But I had more hair around it, so it gets pretty gross.
And you have staples. So I mean, I remember being grossed out by the pictures, or the images that people would show me, because I couldn’t actually see what it looked like. And I remember having pressure. So they would put pillows in a way where I could sleep comfortably. But I had excellent care. I still remember a male nurse that I had at that hospital. And they’re just so knowledgeable and so helpful. Every time you get up, they’re very worried that you would fall. You just had your brain operated on and that’s the part that helps with your balance.
But, you know, everything was fine. I mean, as any hospital stay, they worry about, are you having bowel movements? Are you peeing? And all of those things. And when your body is somewhat recovered and you’ve done those things they let you go home. And I did.
So I went home to my sister’s place in New York and I stayed there for a few more days. Maybe a couple of weeks. I remember they didn’t want me to get on a plane for, I don’t know, maybe it was like a month. I don’t remember exactly. But I ended up recovering so well. They removed the staples, they had all the things that they had to do after the surgery. And then they released me to travel back home way earlier than they expected.
Recovery Time (Part 2)
So after being sent home, my recovery was going very well. I was sent home from the hospital even earlier than we thought. After being sent home, you can’t do much. You have to really take it easy. And one of the hardest things was not washing your head. You can’t wash your head for a long time.
I think something like two weeks, well, maybe not that long. Maybe it’s like five days. It felt like an eternity because it starts getting harder and harder with like the yuckiness that’s coming from the actual scar and just being dirty and like – So the day that they tell you, okay, now you can wash your hair, you feel like your life has changed completely. Like, a hundred pounds are off your head and gross stuff that is around your scar and your hair. I had hair about this length at the time, and they shaved the area of the cut, but around it, you know, I still had more hair. And because my hair was long enough after – even right after this surgery, it was always hidden.
And right after, as I started recovering over the next few months, I eventually shaved the whole back, like the whole bottom part of my hair. Just because on one side it was shaved and I did that to the other side and I wore my hair like that for a few years, I think, with the bottom part shaved. Yeah, I don’t know when I stopped.
But, yeah, I feel fine and I can lay on that side or I can, you know, get my hair tied or anything like that. I can brush my hair. But it is more sensitive. And if I touch my head, really, like the shape of my skull is different on that side. Like there are some bumps that I don’t have on the other side. I mean, they literally have to drill through your skull. So if you think about the bone, they have to drill a hole, take off a lid, go in, do whatever they have to do. Get that lid, put it back in and staple it.
I had two main experiences with second opinions. The first one was when I lived in St. Louis. I had a doctor at a comprehensive cancer center that was a breast cancer expert. Very respected in the community. I really trusted him. And when we were talking about surgery and possibly doing a craniotomy, and I brought up to him that I would be willing to travel, really anywhere, but that my sister lived in New York, and that was a very convenient place for me to travel, if that was a place to find the right surgeon. He really guided me in finding the right people and reaching out to him, to the neurosurgeon at Sloan Kettering, who ended up doing the operation.
My second experience with second opinions, that really marked me around brain mets, was after my surgery, I would have my routine scans and scans were starting to, again, show an area that perhaps would be a recurrence or necrosis or a hole from what they removed in the surgery, I don’t know. And my doctor, he was really working hard and close with me, and we were following this and we were talking to radiologists and trying to understand what it was.
And as I was doing research, and at that point, I had been living with MBC for a few years, so I was a little more educated. I came across Dr. Nancy Lin. Mind you, this was 2015-16. So it was a long time ago. And her name already kept coming up as someone that really focuses on management of brain mets and had written a number of papers and there were presentations. Like her name would come up on agendas, big conferences.
And I told my doctor, I said, “Do you know her?” Like, do you know this doctor? I kind of want to go see her and I don’t know if he knew her or if he knew of her, but he definitely knew who she was and was supportive. And he said, absolutely, if you would like to speak with her and see what she recommends and you know, more smart people thinking about this very complicated problem is a great thing.
And so when I was able to get in with her and schedule a trip and meet with her. You know, they sent all my records. He sent her an email directly, really updating her on what the situation was from his perspective. And I think they had a few phone calls. And I just felt like the amount of knowledge would just grow. You know, it was like multiplying by each expert that looked at my case, and thought about it, and then bringing in people that were really at the forefront of the research for my particular case.
Julia (I) – Advice
As I think about what I went through and what I still go through and what other people I’ve met have gone through. The biggest thing that comes to mind is that every situation is unique. Every situation has to be discussed and has to take into consideration that specific patient, their life, what their life was like before cancer, how they want to live their life with cancer, how they are affected by their treatment.
Of course, the doctors will know specific characteristics of the tumor. All of those factors have to play a role in deciding what each person will do.
Julia (II) – Advice
I remember when I was newly diagnosed with metastatic breast cancer. I could find people here and there that were living with this disease, normally. There were differences in terms of subtypes and also age.
But it was very difficult to find information on brain mets. And, you know, there were websites that were outdated. There weren’t too many experts around the country and I had to go look for them myself. There wasn’t a central place where I could get information that was reliable and updated.
Julia (III) – Advice
So I think this website with information on breast cancer brain mets is a really wonderful and needed tool for people dealing with this diagnosis. I mean, I don’t think it’s right to compare diagnoses and say, what is the hardest? But brain mets is very, very unique and requires a lot of attention. So people need all the resources that they can get.