Receiving a diagnosis of metastatic breast cancer that has spread to the brain can be a frightening time for patients, however a new resource may help guide them through the stressful journey.
When breast cancer spreads to the brain (or metastasizes), patients may often be scared of what lies ahead. Reliable information can be overwhelming and hard to find for most patients, making it difficult for them to understand what is going on with their diagnosis.
In an effort to streamline the pertinent information on breast cancer that has spread to the brain, SHARE, a nonprofit cancer advocacy group, recently launched a website to provide patients with a reliable resource. The aim of the website is to provide visitors with information on clinical trials, treatments as well as patient stories.
CURE® spoke with Dr. Nancy Lin and Christine Benjamin, who played a part in the development and launch of the site, to learn more about what it means when breast cancer spreads to the brain and why there was a need to better inform patients about this disease.
Brain metastases are not very common in patients with early-stage breast cancer. In fact, according to Lin, the associate chief in the Division of Breast Oncology at Dana-Farber Cancer Institute in Boston, brain metastases only occur in less than 5% of patients with early-stage breast cancer.
However, patients with late-stage breast cancer are more likely to develop brain metastases. Lin noted that it mostly occurs in patients with HER2-positive or triple-negative breast cancer, with about 50% and 25% to 40% developing brain metastases over time, respectively, but also occurs in up to 15% of patients with ER-positive/HER2-negative breast cancer.
And although it is very common for some patients, many of them are not well-informed on the risk of brain metastases when they are first diagnosed, Lin added. She explained that what patients go through is scary enough, and to add that the cancer has spread to the brain can become overwhelming. During that stage patients may have to add more experts to their original care team, such as a radiation oncologist and neurosurgeon, which can be difficult.
“It’s kind of a scary topic to bring up, especially when people are worrying already about a lot of other things,” Lin said. “It’s not a comfortable topic to discuss before somebody develops (brain metastases). And once somebody develops brain metastases it can be a stressful experience, because although the medical oncologist is typically the same, (patients) may meet a new cast of characters. … And so it can be, I think, an overwhelming time because it’s not only a new diagnosis but for many patients it involves meeting a whole new set of people.”
It is important to identify the person on the care team who is going to coordinate the medical care, Lin noted, which is usually the medical oncologist, even as more physicians are added to the care team. Many patients can feel lost when seeing all of these doctors on their care team and are expected to make many decisions but having one primary oncologist to help make these decisions with the patient can be beneficial, she explained. It is also important that all parts of the care team are communicating with each other.
“You want people on your team to communicate well with each other so that they can discuss your specific situation, what would make the most sense and give you advice that is coordinated advice — as opposed to three different people telling you three different things and then you have to weigh them all separately,” Lin said. “That’s very hard to do, I think, as a patient.”
Historically, there have been a limited number of clinical trials available for patients with brain metastases, though this is changing. If a patient is interested in a clinical trial for their brain metastases, they may find that academic centers are more likely to offer clinical trials matched for their situation.
However, there has still been many advancements in this space for patients, Lin added. There has been advances in neurosurgery that can minimize side effects and any neurologic problems that may come of it. Systemic therapies can now take the place of radiation therapy in some cases. There are also ways to reduce cognitive side effects caused by whole brain radiation, including the drug memantine — however it is not always offered to patients.
“I think, for example, there have been a lot of advances in each of the different specialties and (patients should) really want to be at a place where their care team is fully utilizing these advances,” she explained. “It’s really important to ask if there are ways to reduce complications from treatments and if they are using state of the art methods. These are relatively recent advancements in oncology and so if somebody is being cared for by someone who’s less aware of these, they might end up not receiving or not being offered a choice of different options.”
As Lin said, having brain metastases during a late-stage breast cancer diagnosis can be scary and overwhelming, as is all the available information on the topic. So, there was a need for a “one-stop-shop” to help better educate and support those going through brain metastases during their breast cancer journey.
That’s where the nonprofit SHARE came in to create a new website, called MBCBrainMets.org.
“Getting diagnosed with breast cancer (and) brain metastasis is scary and could be very overwhelming, and there aren't many experts in the world,” said Benjamin, who is the vice president of Patient Support and Education at SHARE.
She explained that the website will provide a plethora of information on brain metastases for patients with late-stage breast cancer, as well as what experts are saying, what treatment options there are and how to find clinical trials — all things Lin said that can be overwhelming for a patient.
“I think it’s a really important resource because it’s a central resource that’s really focused on this problem of brain metastases,” Lin said.
Many breast cancer advocacy and education websites have information on brain metastases, however it is often scattered and a hard to navigate, they both noted. MBCbrainmets.org also includes leptomeningeal disease, which is often overlooked in our other resources.
“A lot of the big breast cancer organizations have a lot of information about different things. So, it can be hard to do justice to every nuanced diagnosis that a patient might have in the breast cancer space,” Benjamin explained. “Having a dedicated site, we’re clearly able to take a deeper dive. There is some good information out there and reliable sources, but not all in one place.”
“I think it’s a really, really needed resource for people to feel like there’s just one place to be able to go to,” Lin agreed.
Lin also highlighted that the clinical trial match portion is important, as it can possibly offer new treatments to patients in this population. As well as the patient portion, in which patients with breast cancer that has spread to the brain will share their own story with others — she said this will give them a sense of hope as well as a resource for support.
“What I’d like people to come away with is a little bit more of an understanding that the treatment options are not always straight forward,” she said. “I think it can be a very frightening diagnosis to have and a big impetus to have this website was to hopefully make things a little less frightening and to feel like there’s a resource to go to for help.”
Benjamin agrees and hopes that patients will walk away from the website with more information about their disease, knowledge of what questions to ask their doctors and the idea of seeking a second opinion that treats brain metastases.
“We want people to be empowered with information. To be able to get the best care they could possibly get,” she concluded.
MBCbrainmets.org was co-developed with Christine Hodgdon and Lianne Kraemer from the Marina B. Kaplan Project, a subcommittee of the Metastatic Breast Cancer Alliance who focus on accelerating research and treatment for patients with breast cancer brain metastases.
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.