® program titled “Management of Cancer That Has Spread to the Brain.” Because of the tremendous multidisciplinary approaches being implemented and novel treatments being investigated, the treatment of cancer that has spread to the brain has advanced, showing better effectiveness and safety outcomes.

I am Priscilla Brastianos, the director of the Central Nervous System Metastasis Program at Massachusetts General Hospital, Harvard Medical School, in Boston, Massachusetts. I’m joined by two patients: Ivy Elkins, who will be sharing the details of her journey of being diagnosed with lung cancer, and Katie Doble, who will be sharing the details of her journey of being diagnosed with ocular melanoma. They will share their experiences with learning that the cancer had spread or metastasized to the brain and the care that they received.

We’re also joined by Nick Doble, Katie’s husband and caregiver; Dr. Manmeet Ahluwalia, a brain tumor specialist from the Cleveland Clinic in Cleveland, Ohio; Dr. Raymond Sawaya, a neurosurgeon from The University of Texas MD Anderson Cancer Center in Houston, Texas; Dr. Vinai Gondi, a radiation oncologist from the Northwestern Medicine Cancer Center in Warrenville, Illinois; and Ralph DeVitto, patient advocate representative from the American Brain Tumor Association in Chicago, Illinois. Thank you all so much for joining us. Let’s get started.

First, let’s talk about the risk of brain metastases from different cancers, and let’s start with Dr. Ahluwalia. Dr. Ahluwalia, tell us about which cancer types are most associated with the development of brain metastases, and how prevalent are brain metastases in terms of the overall cancer diagnosis?

Thanks so much, Dr Brastianos, for the invitation to participate in this roundtable with these patient advocates and these luminaries. As you know, brain metastases are a common clinical problem. It is estimated that every year, 200,000 to 300,000 patients will be diagnosed with brain metastases. We do know that there are some cancers that have a propensity to go to the brain. The most common cancer that results in brain metastases is lung cancer, followed by breast cancer, melanoma, and renal cell. These four cancers typically constitute 85% to 90% of the cases of brain metastases that we encounter in our clinic every day.

What is also very important, and this session is very timely, is that the incidence of brain metastases is increasing because although we have systemic therapies that are taking care of cancers in a better manner, the brain is a sanctuary site. So there is a higher likelihood of brain metastases resulting from good systemic control.

Also, we are getting better with our imaging. A lot of clinical trials require you to have brain imaging before you go on clinical trial, so we may find incidental brain metastases in those patients who may be asymptomatic. If someone has a stage IV lung cancer, for example, the NCCN [National Comprehensive Cancer Network] Guidelines recommend a brain MRI, even at the time of diagnosis, because 20% patients who have stage IV lung cancer can have brain metastases at diagnosis. If they are treated and did not have brain metastases at diagnosis, but they’re alive two years out, their chances of developing brain metastases goes up to 80%. We see more of these patients at our clinics, and we are very excited because we have better therapies to take care of these patients when we see them.

Cancer Types Associated With Brain Metastases

At what point do you discuss the potential for brain metastases with patients, given that we know that the incidence is rising and we know how common brain metastases are in certain histologies?

Great question. For someone with stage IV lung cancer, you have to talk about brain metastases often from the outset, because 20% or 25% of these patients may have brain metastases even at diagnosis, and NCCN [National Comprehensive Cancer Network] recommends an MRI screening for these patients. For example, we know patients with hormone-positive breast cancer have less likelihood of developing brain metastases. But those who have triple-negative disease or who have 

+ [human epidermal growth factor receptor 2-positive] disease may have a greater propensity. If someone has a stage IV breast cancer, their chances of having brain metastases is around 9% to 12% based on a recent review from Boston that looked at the SEER [Surveillance, Epidemiology, and End Result Program] data. It might be reasonable to alert such patients to be looking out for neurological symptoms they may encounter. If someone has brain metastases, we are able to find out sooner because we know we are able to manage those brain metastases, if someone has a limited number of brain metastases, better compared with someone who has a number of brain metastases.

The same goes for patients with advanced melanoma to a metastatic melanoma, where about 50% of those patients develop brain metastases too. It’s really important for patients to be aware that this is a possibility and that if they do develop neurological symptoms, they should let their physician know fairly early. At what point do you discuss clinical trial enrollment with patients?

As oncologists who are involved with clinical investigations, we know that trials are the way to move the field forward. We like to bring up trial discussion at the very onset if someone is diagnosed. We always try to look if there’s a clinical trial for such patients because a lot of times management of brain metastases is a multidisciplinary effort, and we want to make sure we are providing the best care to our patients. In the past, most of the clinical trials excluded patients with brain metastases. However, several of us who have been involved in the field and who have been leading in this aspect have worked hard to get trials that primarily focus on brain metastases. Every time someone has a brain metastases, we screen through a portfolio to see if there’s a clinical trial for those patients. We like to talk about it because if we do not have a trial and maybe you have a trial, we are always happy to refer, because these patients with brain metastases are those who have complex cancer, and we always feel a complex cancer should be managed at a tertiary care center, a place that has access to clinical trials while providing best possible care or maximum potential…for such patients.

I completely agree. And in the current era, there are more clinical trials for patients with brain metastases. As you said, in the past, there were very few. Encouraging patients to enroll in clinical trials when they’re feasible is a good idea. Final question for you, Dr. Ahluwalia, do you usually meet with patients and caregivers together to discuss these things? Who else in your office participates or manages these discussions?

We like to meet with the patient and the caregiver together, because when someone has a diagnosis of cancer, it becomes a family perspective. A patient, specifically when they have brain metastases, may have neurological symptoms, and at that time their needs substantially increase depending on how symptomatic they are. The caregiver’s role is of immense importance in such patients. We like to understand what the patient’s situation at home is and who is going to take care of them. We like to talk about potential risk for seizures and potential risk for falls. And we like to make sure that the patient and their family, which includes caregivers or friends who are going to be involved in the care of the patient, are actively involved in that discussion.

When we manage patients with brain metastases, we like to take care of such patients in a multidisciplinary manner. We like to talk to the neurosurgeons, our radiation oncology colleagues, medical neuro-oncology colleagues, to pick the best modality to give these patients. I would highlight the role of our nurses, who are going to be extremely important because they interact with these patients most of the time and they’re the first to take the phone call. They’re an important link in the chain of communication. We also like our patients to meet social workers. We like to even see if these patients are willing to undergo neurocognitive battery, so we need research nurses and coordinators for that aspect. There are a lot of people who are involved in the care of these patients.

Then we like to give them support group information, organizations like ABTA [American Brain Tumor Association], NBTS [National Brain Tumor Society], organizations which support patients with brain metastases. Several systemic cancers also have foundations, such as Susan G. Komen and several other foundations, which can help such patients. We like to offer that. A lot of times at our place, either a nurse or a social worker will meet with the patients and caregivers to provide them this information.

Discussing the Potential for Brain Metastases With Patients

I want to turn to Ivy and Katie. A special thank-you to the two of you for sharing your deeply personal stories. For each of you, please share with us the journey from diagnosis that you have had with your cancer. Ivy, if you want to start, and then we’ll have Katie also share her journey.

Sure, thanks so much for having me here to talk about my journey. I was diagnosed at the end of 2013, pretty much seven years ago, with stage IV non–small cell lung cancer. It was a diagnosis for me that came out of the blue. I didn’t have any known risk factors. Prior to my diagnosis, for about six months, earlier in 2013, I had some problems with my right elbow. I couldn’t completely straighten it, it hurt a bit, and I also had some trouble with the left side of my neck. It was a little painful—not horrible pain, but it was bothering me.

I eventually ended up going to my primary care physician, whom I had been seeing for a long time. I otherwise was very healthy and active. He thought that since I was in my 40s, it was just an overuse injury—I was using my computer too much, maybe not bouncing back the way I would have when I was younger. He sent me to physical therapy, and for about six months, I did different physical therapy exercises, I visited an orthopedist and had cortisone shots in my elbow, I went to a rheumatologist, and no one could really figure out why my elbow wasn’t getting better. They thought it was a condition called tennis elbow, and it just wasn’t responding to any normal treatment. Ironically, my neck started feeling a lot better, but no one really knows why that was the case.

Eventually, one of the orthopedists—I had seen two at this point—did an MRI of my elbow and found that there was a mass that had eaten away some of the bone. He didn’t really know what it was either. He sent me to an orthopedic oncologist, who basically took one look at me and said, “You know, the way you present and the way you appear, I’m telling you that otherwise, if you presented differently, I would look to see if this was a metastasis from a different type of cancer. But I am 95% sure this is a benign large cell tumor. Let’s do a biopsy, just make sure. I’ll take it out, and you’ll be all set.”

I remember going into that biopsy worried about how long it would be, if I had to have surgery, before I could drive again. I had that biopsy and the results came back that they were malignant as opposed to benign, as they had expected. And I was told that it was adenocarcinoma, but I had no idea what that was. That’s when I found out that adenocarcinoma doesn’t originate in the bone; it came from somewhere else in my body. I remember asking my orthopedic oncologist where it could have come from, and he said adenocarcinoma could come from your lungs or from your breast. I was sure I had breast cancer initially.

To make a long story short, I had a full work-up at that point, a PET [positron emission tomography] scan that identified the source of the cancer as my lungs. It had spread to my bones, neck, elbow, pelvis, and ribs, and I had eight small lesions in my brain, which was also found through a brain MRI. A lot of cancer, no symptoms other than the bone pain in my elbow and neck, no neurological symptoms, no coughing, no wheezing, no shortness of breath, nothing like that. I ended up having my biopsy tissue tested, and found out that I had a specific mutation called 

 and was put on a targeted therapy for that, which I responded to extremely well. My brain metastases disappeared, my bone grew back in the areas where I had metastases, and my main lung tumor shrunk but didn’t disappear.

After three years on that targeted therapy, I had a little progression in my lung tumor. I had another biopsy and qualified for a new targeted therapy, which didn’t exist when I was first diagnosed, and I’m still on that to this day. My brain metastases never came back, and earlier this year I had surgery to remove my upper right lobe, because that was the area of my originating lung tumor, and it was the only area that still showed up as active cancer within my body. I had that removed, and I am considered NED, no evidence of disease. That’s my journey—probably not a short summary, but that’s my journey.

That’s incredible, Ivy. We’re keeping our fingers crossed that you’re going to continue to be NED. Wow, that’s incredible.

Ivy’s Journey With Stage IV Non–Small Cell Lung Cancer That Has Spread to the Brain

Thank you, first of all, for having us here. Ivy, thank you for sharing your story. It’s always inspiring for me to hear of other stage IV thrivers. Thank you. I am 38 years old, and when I was 31 years old, I was experiencing some issues with my vision. I called my ophthalmologist after a black line sort of danced across my windshield while I was driving one afternoon, and they had me come in the following morning. I went in, and they told me there was a bump on my retina and that it could potentially be a tear, which could be serious, and they wanted me to get into a retina specialist immediately. I went straight to a retina specialist, where I was diagnosed with ocular melanoma. I was by myself that day. I was totally blindsided—I have a lot of eye jokes if you want to hear them—and I didn’t know what to do. I called my sister, who is a nurse and lives in town, and she came to the doctor with me that afternoon, where we went through what this meant and what my options were.

I have always been in the camp of “I don’t want to know.” Some people like to google everything and know everything. I have not once googled ocular melanoma and what that means. But my sister did, and we learned it affects six in 1 million people and that the standard treatment of care is to have plaque therapy to the eyeball. We underwent the radiation to my eyeball shortly after my diagnosis. It was a weeklong radiation, and it left me 100% blind in my left eye. That was it: I became a cancer survivor. They biopsied my cells during the radiation procedure, and they told me that I had a less than 2% chance of metastatic disease. I thought, “I’m good; life goes on. I’m blind in one eye, with no depth perception, but I’m going to be fine.”

A few months later, I met this young man, and we quickly fell in love. A year later, I went in for a routine liver ultrasound, which was what they had suggested as follow-up care. I had had one in April that year that was totally clean. I went in, it was November 2014, and I got a call that afternoon from the oncologist herself telling me that I had 12 suspicious lesions on my liver, that it was likely that I had fallen into that 2% category and that it had metastasized. We had a liver biopsy. My dad flew out the next day and was there for my liver biopsy—my dad is an internist in Omaha, Nebraska—and it was confirmed that I had developed stage IV cancer.

My oncologist told me, “You’ll get started on Yervoy [ipilimumab], the only FDA-approved drug for your disease. We’ll get you started next week.” My dad said, “That’s not good enough. I want to know if clinical trial options are available.” That doctor replied, “That would be really expensive.” We left her office that day, and my dad was on the phone with every single doctor across America who would speak with him about my case. He presented my case to the tumor board of Nebraska, and he got in touch with some doctors at Memorial Sloan Kettering Cancer Center about a clinical trial there. I never talked to that doctor again. If she saw me today, she might think she saw a ghost. But I started in January 2015 at Sloan Kettering for my first clinical trial. Two days after my metastatic diagnosis, by the way, Nick proposed, and so we had that going on as well.

I had my first clinical trial in 2015, and by August of that year I was booted from that trial because of tumor growth, and I had my first liver embolization at that point. Actually, sorry, I had a second clinical trial at the University of Colorado here in Denver and was booted from that trial as well. I’m good at getting in and out of trials. So, that trial I was booted from. I did a liver embolization, which is a targeted therapy to the liver, and I’ve responded well to that. They treated only half my liver because they wanted to have a baseline to see how I would respond.

I went about six months in 2016 getting a break from treatment, which was glorious, and then in June 2016, there was additional growth. I entered my third clinical trial, and I was in that trial for about three months when there was growth again, and the doctor said, “We want you to go back and have the rest of your liver embolized because you’ve responded very well to that therapy.” I went back and I got the other half of my liver, had the embolization done, and then 2017 was great. We finally took our honeymoon—I had no treatment that year; it was a great year. And 2018 was going really well. I was living with stage IV cancer, but you never would have guessed it.

But midyear 2018, I started presenting with stroke-like symptoms. I remember one morning getting out of bed and feeling like a drunken sailor on a ship that was in the middle of a storm. Everything was moving. I was clipping door frames, trying to go up the stairs was a huge effort—I kept tripping. I knew something was wrong with me, but I didn’t know what was going on with me.

Nick and I carpool to work sometimes, and I was driving us into work and we got rear-ended. I remember thinking, “I can’t even get out of the car right now. I can’t deal with anything.” I thought I was just dehydrated. I had scans the following week, and I mentioned what was going on to my oncologist. He said, “We should get a brain MRI.” Sure enough, something showed up in the left pons—as if I know where that is—and then we found out that it was likely a brain tumor. It’s still unknown; they didn’t biopsy it. I underwent gamma knife the following week, and my brain has been stable since. I had been, as of earlier this year, doing great. I was stable nearly two years in my brain, I had been stable in my liver for about three and a half years.

But on brand with 2020, my scan showed massive growth in my tumors in my liver earlier this year. I ended up enrolling in my fourth clinical trial at the University of Pittsburgh Medical Center and that was TIL [tumor-infiltrating lymphocyte] therapy. I went to Pittsburgh; we went for the month of September and I was in the hospital most of the month. Got my free haircut, got my TIL, and got my IL-2. We just got off the phone with the doctors this morning before this call to get my updated results from my latest scan, and things are going well. The tumors are slightly shrinking, and so we’re pleased with the results. That is, in a nutshell, what we’ve been doing the last seven and a half years.

That’s an incredible story. Thank you for sharing that. I’m thrilled that things are going well with this trial.

Management of Cancer That Has Spread to the Brain | Cure Connnections

Cancer Types Associated With Brain Metastases

Discussing the Potential for Brain Metastases With Patients

Ivy’s Journey With Stage IV Non–Small Cell Lung Cancer That Has Spread to the Brain

Katie’s Journey With Stage IV Ocular Melanoma That Has Spread to the Brain

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