Healthcare provider perspective: It’s a marathon
As science advances, treating metastatic, hormone receptor-positive breast cancer evolves. In the decades since tamoxifen was introduced in 1977, the cancer community has seen several new types of hormonal therapy change the course of treatment. Most recently, the FDA approved the first PI3-kinase inhibitor, a new class of medicines for people with this type of breast cancer.
Pallav K. Mehta, MD, started treating people with breast cancer over 15 years ago. He spoke with Living Beyond Breast Cancer content coordinator Madison Hughes about the changes he’s seen, and what people should know about their diagnosis and treatment.
How have treatment options for hormone receptor-positive disease changed since you started treating people with breast cancer?
They have changed a good amount. I treated my first patient with breast cancer over 15 years ago. Back then, really, the aromatase inhibitors were kind of just coming out. So if you look at the trend, the last 15 years have seen a dramatic change.
Initially, we were just working on the estrogen receptor. So that was tamoxifen, and that’s all we had had since the 1970s. And then you get into the early 2000s and the aromatase inhibitors come on. That was a big change because it meant we were now blocking how postmenopausal women make estrogen, which is different than how premenopausal women make estrogen. You can still use tamoxifen in everyone, but aromatase inhibitors are more effective for postmenopausal women, and every major trial showed that in the late 1990s, early 2000s.
Then came fulvestrant (Faslodex), which works on the estrogen receptor, but essentially destroys the receptor, so to speak, instead of blocking it. I remember when that came out it was an exciting, new thing.
What we’ve done over the past 5 to 7 years, if I were to summarize it, is look for the bypass routes for activating the estrogen receptor. It’s like we’ve put the dam in front of the river, and then the river figures out little tributaries that still let that water flow. That’s kind of what the newer treatments have been for this type of disease.
The first of the bunch doing this was probably everolimus (Afintor), and that was looking at the mTOR pathway, which is one of the mechanisms of resistance for estrogen receptor-positive breast cancer. And then came the first CDK 4/6 inhibitor, palbociclib (Ibrance), which was probably a little more than 5 years ago. And then we’ve had two more CDK 4/6 inhibitors since then. Then most recent is the PI3-kinsase inhibitor alpelisib (Piqray).
When I look at the estrogen receptor-positive subset, we have come a long way. For 30 years it was all just one thing: tamoxifen. When I see a patient today with estrogen receptor-positive breast cancer, and this really pertains to metastatic breast cancer, the bevvy of options we have now is really wonderful. And the question now is, how do we sequence them? What do we use first? What do we use next? And this where a lot of the debate and clinical trials are right now.
What questions are you asked most often by people newly diagnosed with HR-positive, HER2-negative metastatic breast cancer?
I think the big questions center around their prognosis. By the time they come in to see me, most people with metastatic breast cancer have done a lot of research already. The internet is so much easier to use, and information is more readily accessible to anyone, at any time. Today, when a patient walks in, if they’re waiting on me in the waiting room, they can look up a lot about metastatic breast cancer.
There’s a lot of fear in that initial visit, which is understandable, and it’s around how bad is this? They hear about metastatic breast cancer and the first thing they think about is their mortality, and dying from breast cancer. And you know, my conversation is very different with someone who is triple-negative metastatic or HER2-positive metastatic or estrogen receptor-positive metastatic. What I try to impart on them is that not only are we successful in controlling cancer, but we can do it without overly toxic therapies. And a lot of these patients can avoid chemotherapy for several years, sometimes longer.
I think the other thing is that people just want to know how they’re going to feel, both how they’re going to feel from the cancer and how they’re going to feel from the treatment. I would say not a lot of patients want a definitive prognosis, which is good because you can’t give a definitive prognosis. Anyone who says to a patient that they have 5 years to live is making it up. There’s no way you can predict that in someone who shows up with estrogen receptor-positive, metastatic breast cancer—you just don’t know. It depends on so many things.
What do you want your patients to understand about their diagnosis and treatment by the time they leave your office?
I’m always really careful about the words I use when I talk to patients, especially at that first visit, because when people hear the words “incurable cancer” they start planning their funeral and saying their goodbyes, and that’s not the case with a lot of these patients.
First, I want them to understand that many patients can live many years with metastatic breast cancer. It doesn’t mean we’re going to get rid of it, but we are successful at controlling it, and at controlling it while keeping them feeling reasonably well. So that’s an important point I try to make, to sort of bust some myths around metastatic breast cancer.
I try not to overwhelm them on that first visit, because they’re already overwhelmed, because they’re coming in and their head’s spinning. So I try to focus on two or three major points. Like, here’s the treatment, here’s what we’re going to do and when we’re going to start, and here’s a reasonable expectation of side effects.
I think there are a lot of commercials about these drugs, particularly the oral drugs, like palbociclib and others. These commercials are horrible. I hate direct-to-consumer advertising for chemo drugs. Legally, the makers have to list every single side effect of the drug in these commercials, which is such a pain. With palbociclib particularly, I’ve never seen a drug with such a difference between what’s in the side effect paperwork and what people actually feel. Most patients tolerate it very well, and if you ask most oncologists they would agree. Very few people feel bad on palbociclib. But all the stuff people hear about it sounds so horrible. So a lot of my visits are trying to sway people to believe it’s not as bad as you think, not as bad as you’ve read.
And the last point is to expect a little bit of a roller coaster. When things are going really well I think that patients get really happy about the situation, and when things aren’t going well they get really upset. And I tell folks to try and be—well it’s easy for me to say—even-keeled about the highs and lows, because it is a marathon. There’s going to be times when things don’t go as planned. And that’s OK because we have plans B, C, D, E, F, and more. We’re ready to make changes.
How much do people typically retain from these early conversations?
I think it depends on the patient. It depends on how scared they are when they come in. Partly it’s the anxiety, so when you’re anxious you’re not focused, you don’t retain much, versus people who are calm when they come in.
It also depends on whether people are alone or with family and friends. Most studies show cancer patients on their own retain about 10 to 20 percent of the information. And I encourage patients to write stuff down at the time of the visit.
At the end of my visits I try to summarize what was said, and in my after-visit, in our electronic records, I type up a very quick, what’s going on and here’s our plan. And then as a patient leaves, I have my nurse go in just to say hello and again, here’s what we’re doing.
Retention is important and patients often don’t get everything the first time. But honestly it becomes better very quickly, after a couple of visits they get it.
What tools do you recommend they use to better understand what you’ve discussed? Is there anything you give them?
Yeah, definitely. MD Anderson has a lot of written information that has been vetted through them and their departments. But also, I recommend LBBC as a website and as an organization. I think the information, the writers, the stuff that I’ve read and had to review and edit, honestly has been really spot on. Some websites write things and it almost sounds too simple. It has to be simple, obviously, for the average person. Certain places write things better than others, and I think LBBC does a really good job with that.
Depending on the drug, the pharmaceutical company itself often has really useful information. Their patient access and patient education for these drugs, particularly if it’s a new drug, is usually pretty good with the big companies.
WebMD partnered with LBBC and SHARE to create a patient education tool that helps explain treatments for hormone receptor-positive breast cancer. How do tools like this one help people make decisions about their care?
A tool is only as good as the user and how they want to get into it. I think they’re helpful. I like to believe the interaction with me is the most helpful, because I want to understand my patient. I want to understand what their life is about, what’s important to them, and why I would or wouldn’t do something. And I think no tool can get to that personalized conversation between me and my patient and their families.
For example, I had a patient yesterday with metastatic, estrogen receptor-positive breast cancer, a new diagnosis, and she’s around 70 years old and she cleans houses for a living. So for someone like that, I am thinking about her joints and the joint pains from aromatase inhibitors and how that might impact her ability to continue to make a living. So maybe for her, instead of an aromatase inhibitor, I am thinking about tamoxifen. I might also consider whether the patient does well with taking a pill every day, and if I think it might be challenging for her to take a pill regularly, or to remember to take it, I might recommend fulvestrant so that I know she will come in to get the medicine as a shot instead.
Sometimes I’m not sure how education tools pick that up, because a tool is a patient inputting information and then it spits stuff out. Sometimes patients and their families may not be as aware of the whole situation. But for the most part, I think they’re helpful in allowing patients to understand the disease process that we don’t necessarily have all the time to explain at the doctor’s office.
Pallav K. Mehta, MD, is a member of Living Beyond Breast Cancer’s Medical Advisory Board. Dr. Mehta is the director of integrative oncology and director of practice development at the MD Anderson Cancer Center at Cooper in Camden, New Jersey.