Dr. Kelly Shanahan: [When I learned about my diagnosis I thought] I can’t die before my mom. I can’t leave my daughter. I had to stop practicing. I really felt adrift. Why am I using up oxygen on this planet?

It was crazy because I felt stupid. I’m a physician. I should know 25 to 35% of people with an early-stage diagnosis, especially hormone receptor positive, will eventually become metastatic. I’m five years out. I should be cured. It really hit me hard.

If you’re treated by a community oncologist, they might have one or two people with metastatic breast cancer in their whole practice. They’re doing everything — lung, colon, blood cancers etc. They’re not going to be up to date on what is happening.

I’m five years out. I should be cured. It really hit me hard.

Dr. Kelly Shanahan,
Metastatic Breast Cancer Patient Advocate

Dr. Paolo Tarantino: For more than 20 years, we thought that HER2 was either positive or negative. Positive was about 20% of the tumors (were very aggressive) [and] needed to be treated with chemotherapy, with many agents against HER2. The other 80% [were] treated very differently.

But what happened is that in that 80%, we knew that even if we called it negative, there was some HER2, just not enough to call it positive.

Nowadays, more than half of all patients with breast cancer are called HER2-low because they have an expression of 1+ or 2+ non-amplified.

What was impressive to see is that in this very large population of patients, delivering chemotherapy with this new class of drugs that we call antibody drug conjugates — and with trastuzumab deruxtecan in particular, T-DXd or Enhertu — was very effective, much more effective than traditional chemotherapy.

Dr. Shanahan: HER2 was originally cancer that is so aggressive and people just don’t do as well. Then Herceptin came along, Perjeta came along, and now these antibody drug conjugates.

They have made a huge difference to the point where those of us that have ER-positive disease are going, “I wish I was HER2 positive,” because there [are] so many more options and things that are working really, really well.

I think what we’re learning in some of the data from these trials is if you have a really high level of HER2 — your HER2 positive, HER2 3+ — for a lot of people, it’s going to work really, really well.

If it’s 2+, it’s still going to work but maybe not quite as well. Then 1+ and 0, there might be some efficacy. It might work even in people who have no HER2 overexpression.

Dr. Tarantino: In metastatic breast cancer, we really need options because so many times, patients run out of treatment options.

We use all the most effective treatments that we have — endocrine treatment, taxane, capecitabine, biologic agents, anthracyclines — and in the end, we really don’t have any more effective options.

Sometimes, we have to recycle chemotherapies. We really would like to use a drug that is proven to be efficacious and even to improve survival in HER2-low patients.

Dr. Shanahan: One of the things important for patients to know is that you can look back on biopsies from your original breast cancer diagnosis or if you were diagnosed with mets from the get-go, de novo metastatic disease, that can be looked at to see, “Do I have a little bit of HER2? Do I have none at all?”

That opens up this whole avenue of these new antibody drug conjugates as a treatment option. I think that’s really exciting because the more options we have, the better.

Dr. Lola Fayanju, Penn Medicine: I’m part of a panel on patient-reported outcomes, which are opportunities for patients to describe how they’re feeling, what symptoms they’re experiencing, [and] what psychosocial challenges they might have that might prevent them from optimizing their breast cancer journey.

There’s diversity across different communities. Many of the Black women who aren’t participating in clinical trials [don’t] necessarily need more socioeconomic help. It’s that they need to have faith in the healthcare system that has let down Black people for generations.

Many of the women who choose not to participate in clinical trials who are African American, [don’t participate] not because they can’t afford to do so. It’s that they have a justified mistrust in the system, a system that has not earned the trustworthiness of people of color.

I think that descriptions of trial results matter. Words matter.

Dr. Shanahan: I had a conversation that some of these trials cost a billion dollars!

If you don’t have advocates involved early to make sure your design is going to be palatable to patients, that the questions you’re asking make sense to provide treatments, to make lives not only longer but better, you’re wasting time, you’re wasting money, [and] you’re wasting lives.

You’re an advocate. You’re an advocate for yourself.

If you were that PTA mom that raised money through bake sales to get a new playground for your kid’s school, you’d be great at fundraising for support groups [and] for research.

If you’re that person that goes to the city council meetings who’s going, “Why are you putting a stop sign here?” then maybe legislative advocacy, trying to get bills passed locally or nationally to help benefit the metastatic community is your place.