 There are 3 types of breast cancer. Actually, there are more than that that we know about. There’s 

-positive breast cancer, which is driven by estrogen and the estrogen receptor. There is 

-positive breast cancer, which is driven by the 

 gene. And then there’s triple-negative breast cancer. They all have completely different treatment approaches. One of the problems we have is truly knowing which cancer you have. It’s always a problem in the clinic, and you know that. I always ask for more staining on a tissue block, and things like that, to really tell whether you’re 

 positivity, we consider that if someone has a tissue block, that we send off, that is greater than 1%. We consider that 1% staining, which is 

-positive. As you know, in our clinic, we don’t do that. We consider 10%. When I look at people and I say they’re 5% 

-positive, I say, “No way. We’re not treating them with hormone therapy.” And, so, that’s one thing.

positivity. When we have people who come in with 

-positive disease, how do you define it? In our clinic, what tends to happen is that people come in and they have 

 staining. You do an immunohistochemistry test, which is basically tissue staining of the block. If it comes back 3+, then we consider it positive. If it comes back 2+, it’s equivocal. That, potentially, means they may not respond to Herceptin [trastuzumab] or drugs like it.

We always get into this quandary about what to do with the 2+ patients. They’ll come in and they’ll have a tissue block that, maybe, has a staining of 2+. Then, we do a FISH [fluorescence in situ hybridization] test on it. This looks at copies of the 

 gene. And oftentimes, we’ll have people who come in with 4 copies, which is equivocal. Less than 4 copies is negative. Four copies is equivocal, and 6 copies is positive. And, as you know (knowing me very well), I take a very skeptical view of other pathologists. And so, what’ll happen is that we will go to the patient and we’ll say, “Listen, bring us the block. Let’s redo it for FISH, in our institution. If it comes back greater than 4, I’ll generally treat you.”

Do patients ever ask you about that? Do they ever say, “Why is Dr Brufsky doing this? I thought it was 

-negative?” “Why is he redoing a block?” Do they ever ask you that question?

Actually, they usually don’t question that. They understand that you want to give them the best treatment possible, so they want to make sure that you’re absolutely sure of what you’re treating.

 Does the same thing happen with the estrogen receptor business? Do they ever ask questions about that?

One thing that I, as the nurse, do discuss with them is that each breast cancer is different. The pathology is different. We determine how to treat them based on the characteristics of their breast cancer.

So, they may be in the treatment room and the patient across from them has breast cancer and has a completely different regimen. This happens because their cancer expresses different characteristics.

 Right, but they always go, “Well, my sister had X. My friend down the road had Y. Why am I getting Z?”

Many people consider breast cancer a blanket statement.

And they think that it’s all going to be treated the same.

 I agree. And the other thing that we always run into is people who come in and, for example, have metastatic disease. They go, “It’s in my bone, but it’s still breast cancer?” Remember that one? You’ve probably had that conversation with people before?

 They say, “Oh, my goodness, how do we? It’s bone cancer.” Or, “It’s liver cancer.”

 “Uncle Fred had liver cancer and he died in 2 months. I have liver cancer.” I think one of the big things that we’ve got to do, all the time, is explain to people that it’s breast cancer that has spread to your liver. And, in general, especially if it’s 

-positive disease, it’s something that you can live with for a long, long time. That’s a big thing that we try to tell people.

Right. As the nurse, that’s what we try to do. First, we make the patient feel comfortable and confident in the care that we give them. We let them know that we are in it with them for the long haul.

And if things do change, if the cancer stops responding to a treatment, we always have another treatment.

Characterizing the Types of Breast Cancer

 We’ve talked about all of these various subtypes of cancer, but when patients first come in, what kind of questions do they usually have for you? They’ve seen me, but a lot of times, they don’t want to ask me certain things.

 Patients do open up to nurses (maybe a little bit more).

 We see a spectrum of emotions. We see those who are very stoic, [who say,] “I’m going to fight this.” Then, we also have patients who have tremendous concerns about their future. We just try to comfort them and let them know that once we know what type of breast cancer we’re fighting, we have the means to treat it and we’re going to be with them every step of the way.

 That’s good. Are there any common questions that people tend to have?

 I would say some of the most common questions, of course, are in regard to side effects. Everybody seems to know somebody who’s been treated for cancer. And whether it’s the same type of cancer or other cancers, they want to know, “Am I going to get sick?” “Am I going to lose my hair?” Probably the most common questions the nurses receive are, “What type of side effects am I going to have?” And, “How do we deal with them?”

 And, “Which ones, in particular?” I know people always will worry about nausea. They saw this movie. I forgot the name of the movie. I forgot what it was. Someone had CML [chronic myeloid leukemia]. The patient got really sick and lost all of his hair. He was throwing up all the time. I just remember people always asking, “Am I going to be nauseous? Am I going to throw up?” Is that really a big one anymore or no?

 It’s a very big question because most people have, maybe, people in their family who were treated 20 years ago for cancer. I always tell them, “We’ve come a long way with the anti-nausea therapy.” And, as a matter of fact, our most common complaint from patients is probably fatigue (as opposed to nausea).

 Yes, fatigue is a big one. What do we do about that when people get it?

 We advise patients to rest when they need to. And if they feel energetic, we advise them to take advantage and get out and do things that they enjoy. But for the most part, we tell them to just kind of listen to their body.

 The other one that I get, especially with women, is hair loss. A lot of women will go, “Look, I’m going to lose my hair. OK, it’s better. I want to live.” But some people are really dead set against losing their hair. I see part of it, but again, I’m a guy. I’m a doctor. You’re a nurse. You’re a woman. You probably hear more about it from people, as a nurse?

 We do hear a lot of concerns about that. And again, that sometimes guides your treatment options, as to what they’re going to get.

We try to offer emotional support. We give them resources. The American Cancer Society is a resource. We direct them to places where they can purchase head coverings and wigs. But we listen to their concerns and we try to help them.

 We don’t have many conversations about cold caps, but we try to give them as much information as we have. Unfortunately, we don’t see that a lot.

 Yes. We went through a period where we almost bought the machine. There was a machine out there that circulated (kind of like a refrigerator) over your head. It was for people who don’t want to lose their hair. But it was, at the time, still very expensive. We weren’t sure if it was covered by insurance. We decided not to do it, but a lot of my colleagues around the country, especially at the UCSF [University of California, San Francisco] and other places, really wanted to use it. It is very successful. I’m surprised people haven’t talked as much to you guys about it.

 We do let them know the pros and cons of that, but it is a big commitment on their part.

 It is. It’s a huge commitment. You tell them that it’s about an hour, or 2, in the chair before and after. It’s a big deal.

 We do provide them with the necessary resources to look into cold caps if they do want to follow through on that.

 Good. Why is it important to have a treatment plan for people? Why is it important to have a plan for them up front?

 It’s absolutely important, for everybody involved, to know what the plan is so that we’re all on the same page. Again, it’s based on their specific pathology.

 Right. What we do with people, in our practice, as you know, is that I’ll go in and see patients and I’ll talk about everything, in general—especially if they need chemotherapy as part of their plan. Then, I’ll have you guys come in and do what we call a “teaching session,” to everybody. Can you explain what that is? What do you guys do during that session?

 When you determine what the treatment plan is going to be, we gather the materials and we go in with the patient and review the different drugs that you’ve chosen. We’ll go through the most common side effects, talk about the lesser common side effects, discuss how to treat those side effects at home and when to call us. We also talk about when they absolutely must call us right away. If there’s a fever that they develop and any life-threatening situation, we would want them to, of course, seek emergency assistance. We also provide them with resources, not only for their medical side effects, but perhaps for connecting with social work or dieticians. We talk about all of the resources that are available.

 How many people do you think look for a dietician?

 There are many patients who want to be proactive. Nutrition therapy is something that they can do, on their own. There are actually many patients who are very pleasantly surprised that we have a nutritionist on staff. Many people want to know about nutrition. They’ve heard, “If I don’t eat sugar, is that going to help?” “Should I avoid red meats.”

 Yes. Again, that’s something they can do, on their own, and they’re very interested in knowing more about it.

Establishing a Plan for Treatment

 A lot of patients who come to us have chemotherapy first. For these patients that come to us with a very large, low-grade advanced tumor—a woman will come in, her breasts will be really red or she will have a really big tumor in her breast&mdash;the issue becomes, what do you do? What I usually tell people is, “We could do a mastectomy on you now, but we’d probably have to give you chemotherapy afterwards. So, why don’t we just do it first to see if it shrinks?” That’s kind of how you explain this neoadjuvant therapy to people.

 I’m curious to hear your opinion on this. A lot of people will go, “I don’t want to leave my cancer in my breast. It’s going to spread all over my body.” What do people say to you when that happens? Do they say that to you at all?

 Well, often the surgeon is involved from the very beginning.

 So, they’re not only hearing that from us. I have not really had many patients express that concern. I also think that because we’re treating them while it’s there, it’s very encouraging for them to know that, as we continue to monitor that tumor, it’s shrinking.

 Right, they love that. I think patients really like knowing that and having that choice.

 Yes. I’ve only had, maybe, a handful of patients that express concern on that.

 Good. The other thing that’s really important is that a certain percentage of those patients who need chemotherapy first, as neoadjuvant chemotherapy, are 

-positive. I explain to them, “You’re 1 of the 1 out of 5 people whose cancer has the 

 gene in it. It makes your cancer very sensitive to chemotherapy.”

When we give chemotherapy with Herceptin (trastuzumab), it will shrink the tumor a lot, generally, and it’ll be very quick when that happens. I think people like that. We really have come a long way in the last 15 or 20 years with drugs like Herceptin (trastuzumab) and things like that. Do people ever ask you about that at all? “What is this Herceptin stuff?” “What is this pertuzumab stuff?”

 I think that people are savvy enough now. A lot of people go on the computer and they want to know what targeted therapy is.

 We explain that their cancer expresses certain characteristics that we can target with this chemotherapy or, actually, targeted therapy. I explain the difference between how systemic chemotherapy works as opposed to targeted therapy. I also explain that the traditional systemic chemotherapy doesn’t know the difference between a healthy cell or an abnormal cell, but the targeted therapy goes right to that tumor. So, by using a regimen such as TCHP (docetaxel, carboplatin, trastuzumab, pertuzumab), we’re getting it from all angles. Even though it is a pretty heavy-duty regimen, it gives great results.

 It does. A lot of people do really well. A lot of people have what’s called a complete pathological response, which means there’s no cancer left. In fact, if you come in and your cancer is negative for the estrogen receptor or 

, and we give you neoadjuvant TCHP, the complete response rate—because there’s no cancer left when we do surgery&mdash;is about 70% to 75%. It’s really cool when it happens. But it is a pretty heavy-duty regimen. I agree.

 And part of the nursing staff’s role, again, is managing the side effects that patients do experience with TCHP. We try to help patients through that. There’s a lot of gastrointestinal issues with TCHP.

 Many of our patients develop diarrhea. We try to manage that with over-the-counter Imodium. We have them follow the directions pretty faithfully to help keep that diarrhea as best controlled as we can. We encourage fluids. We tell them to make sure they let us know if they begin feeling like they’re getting behind and if they’re dehydrated. Then, we have them come in for fluids.

 Right. In fact, we do that more than I thought. I think that we expect diarrhea from certain drugs, and I think that Herceptin [trastuzumab] has a little bit of diarrhea associated with it. And when adding pertuzumab to it—you see this as much as I do&mdash;I think we’re really getting more diarrhea. There are people in whom we’ve had to stop pertuzumab, especially somebody who is a little bit older; our patients who are in their 60s, late 60s, or early 70s.

We like to try to give everybody TCHP if we can. Sometimes, we just give THP if they can’t do the carboplatin. Or sometimes, we give antiparticle paclitaxel, or Abraxane, with Herceptin and pertuzumab, even though that’s not the standard of care. We try to do that to save them the steroids. But even with all of that, people come in and say, “I keep going to the bathroom, all the time.” We have to stop the pertuzumab. We have someone in our clinic, right now, who had TCHP and ended up in the hospital. Then, they got it in a reduced dose and ended up in the hospital. We said, “OK, let’s stop the carboplatin.” The patient still ended up in the hospital. Then we stopped the pertuzumab. The patient still had trouble.

 That brings up a point. We have, again, a spectrum of responses. Some patients honestly can get through TCHP with little to no issues.

 Then we also have patients who really have problems with it. So, it’s hard for me, as a nurse, to say, “This is exactly how it’s going to be.” Everybody is different.

 The weird thing is, there’s no way to know. It could be the most healthy, robust 45-year-old woman in the world, and she’ll be miserable. It could be a 75-year-old woman who does great.

 As a matter of fact, in our initial teaching session, I say, “Your first cycle is a learning curve for all of us because we don’t know how you’re going to respond.”

 Right. That’s really a cool way of saying it. I like that. I like that a lot.

Treatment Overview: HER2-positive Breast Cancer

One of the things people are always worried about, is, they say, “My cancer is going to come back.” And they always go, “It’s going to come back in my breast.” What we try to tell people—at least I try to do this, and I’m sure that you reinforce it&mdash;is that there are 2 things we worry about: cancer coming back in your breast and cancer coming back elsewhere in your body. We treat each differently. But what keeps cancer from coming back in your breast is surgery and/or radiation and, to a lesser extent, the chemotherapy and your hormonal therapy. What keeps it from coming back elsewhere in your body is the chemotherapy. The analogy I always use is chemotherapy and a dandelion. You blow on a dandelion. The weed is still there, you pull it out, and little things go all through your body. Chemotherapy, in a way, is like a weed killer. That is the weed killer analogy.

Actually, I’ve had patients who have expressed concern. They’ve asked, “Why am I getting chemotherapy when my cancer’s gone?”

We try to explain that we are doing our best to prevent a recurrence.

Right. We have a lot of tests, right now, that we didn’t have before. With these molecular tests, such as Oncotype DX and MammaPrint and Prosigna, we can actually look at the cancer itself, determine someone’s rate of recurrence and then, from that data, decide whether they should get chemotherapy or not. I think that’s been a major change in the last 10, 12 years.

Women actually come in now and we say, “We’re going to do a MammaPrint on you. If it’s low risk, great. Then, you don’t need chemotherapy.” That’s a real change. Before all of these tests came around, we’d have to kind of guess. “All right, you’ve got a 1-cm, 1.5-cm 

-positive node-negative breast cancer. You’re 45 years old, so you probably need chemotherapy.” But now what we do is use one of these tests. If they’re low risk, they don’t need chemotherapy. I think it’s cool. Do you think people understand those tests? Do they ever talk to you about them at all?

They are overjoyed when you tell them that the results indicate that there’s a very low chance of recurrence. I think that you do a good job of preparing them ahead of time to understand that it can go either way. But many times you’ll say, “I believe this is going to come back.”

Again, the tests are amazing. I think that it’s just amazing that there are tests developed that can predict this with that level of accuracy.

About half of the people that used to get chemotherapy don’t need it any more. So, it’s really good. Most people with 

-positive early stage breast cancer will survive and do really well. It’s really neat to be a part of this. We did some of the first clinical trials with TCH [docetaxel, carboplatin, trastuzumab] in Pittsburgh in the clinic. It’s really cool to kind of see, 15 years later, that this is a part of the standard of care and to see it do so well.

The issue, though, is some people will relapse despite that. There are a lot of new drugs that we’re trying to use to prevent relapse. One of them is a drug called neratinib. The trade name is Nerlynx. Neratinib is a pill that you take, a certain amount of pills a day. Basically, it means that you’ll get the standard therapies. So, you get TCHP [docetaxel, carboplatin, trastuzumab, pertuzumab]. Then, maybe you’ll get Herceptin for a year. And then, if you have a high enough risk of recurrence or you are someone who has a lot of disease left over or you are someone who has a lot of lymph nodes or a big tumor, from when it started, and it really has not gone away, especially if it’s 

-positive, we’ll think about putting you on this extended adjuvant therapy. You take this drug, neratinib, for a year. This is something that’s just come to play. I think that the trials went on for a long time. The drug was owned by several companies. Finally, Puma Biotechnology bought it and finished the development on it. The trial literally was finished about a half-a-year ago, and it was approved by the FDA over this past summer.

My experience with neratinib has been through the research.

Right, through all of the clinical trials. We do a lot of clinical trials in metastatic breast cancer, 

-positive breast cancer. We have had a lot of experience with patients, in our clinic, with neratinib. That’s kind of how we have started to use it. But right now, the way people are going to be using it, at least for the time being, is by the label—which is going to be for a year after Herceptin. In fact, we’re just starting to put some patients on it. We’ve had a patient actually come in to request it from us, and her insurance is giving her a hard time. So, she keeps on requesting it.

Again, the insurers are a little bit behind. It has been somewhat tough, at least for now, to use. But in the future, it shouldn’t be that bad to get approved. Clearly, if you have a high enough risk of recurrence, I think it’s a reasonable drug to consider.

As the nurse, when looking at side effects, I am aware that diarrhea is almost a given.

Right. One issue, that’s important, that I think I’d love to hear your opinion on is, you’re done with your breast cancer journey, right? You had your neoadjuvant therapy and you had a great response. Do you really want to do another year? What do you think patients will think? Is the patient really going to ask, “Do I have to do this for another year?” Do you think they want to do that?

I have to be honest. Probably, what I see most is, people feel more comfortable on something then off something.

Patients don’t want to break up with us.

Especially if they have high-risk disease, I would agree with you. It’s a real balance. Part of me goes, “They don’t want to do the break-up thing.” But part of me goes, “You’re kind of tired. You want to be over it.” You want to say, “My cancer’s done and I want to get back to my life.” Right? There’s always that tension. I’m really curious to hear your opinion on this?

In my experience, most patients feel more comfortable knowing that they’re being managed, every ache and every pain. Every “Could it be my cancer?”

And “If I’m not taking anything, then it must be.”

 My rule on that is, if you want to go see a chiropractor, see me first. Everybody gets aches and pains, especially as we get older. But if it’s the kind of pain where it’s in your bone, it gets worse and worse, it’s nagging, and it gets worse when you lay down, it could be something serious. I’ve picked up a number of metastatic diseases that way, from people who say, “Oh, yes, I just went to the chiropractor and it didn’t get better.” I say, “We should do a bone scan and see if something happens.”

I think that it’s really important to make the point that patients don’t want to break up. I think they do like that safety net, especially if they are 

-negative and don’t have tamoxifen or Arimidex or something else to go on for another 2 or 3 years when they’re done with their Herceptin.

That’s my experience. They don’t want to end the relationship.

Preventing Recurrence: HER2-positive Breast Cancer

 There are a few issues that can occur with extended adjuvant therapy. One of the first ones, and this is true for all therapy, really, is concerns of people going from IV to oral therapy. They come in for their IV every 3 weeks, or every week, or whatever they’re doing. Suddenly, it stops. Do people ever have a problem with the safety net of that? Are they only comfortable going on oral therapy?

 Responses can go either way. Some people welcome the idea of taking an oral pill every day. They feel like they’re doing something every day for their cancer. There is a whole spectrum of side effects. Some of the oral drugs are a little bit more tolerable than some of the IV drugs. Some patients have told me they feel IV medicine is more potent and that they would rather get the IV.

 Right, I’ve heard that. It’s stronger.

 There are a lot of responses to that, and we’ve got answers for all of them.

 Yes, I agree with you. We talk about it all the time with people. Just because your hair doesn’t fall out doesn’t mean that it isn’t good therapy.

 People expect to have to suffer to beat their cancer. I think that’s something that we both try, very hard, to dispel. The therapy is the therapy. It’s going to work, or it’s not. It’s going to have side effects or it’s not. Those 2 definitely don’t relay, a lot of the time, and I think that’s an important issue to tell people about.

 I think they realize that, again, with the treatment plan. That, they know. But if we’re making a change because of the progression, then it’s more difficult for them to understand. And, again, if they’re going on an oral pill, I’ve had patients be more concerned that it’s not…

 It’s not as strong because it’s by mouth, I agree. It’s something that you’ve got to tell people.

Going back to neratinib, you have experience with our clinical trial patients. We did a trial, with neratinib, where we were trying to measure the amount of diarrhea that patients had from it. As you mentioned, that seems to be the biggest problem with this drug. Before we go to diarrhea, is there anything else that patients have had with this drug, in your experience? Rash?

 Again, fatigue is one. It can be overwhelming. It can be a debilitating fatigue. For diarrhea, I understand there’s actually a prophylactic, which you start the day of your first…

 Right, around-the-clock antidiarrheals. Right.

 I don’t have enough experience to draw on, with neratinib.

 It’s a fairly new drug. But we have a lot of experience, for example, with lapatinib [Tykerb] in our practice. It used to be the same thing, but the differences now with Tykerb are that we reduce the dose very quickly. Everybody starts with 5 pills. Then, we’ll reduce to 2 or 3 or 4 pills, or whatever, within a few weeks. But with neratinib, you really have to be very careful. I tell people that, up front, and I’m sure you do. When people come in, we say, “You are probably going to need antidiarrheals for at least the first month. It’s going to have to be around-the-clock.” Again, it’s not an explosive diarrhea. It’s more that you have to go to the bathroom all the time. We have school teachers who are concerned about this.

 The kids are all laughing because the teacher has to go to the bathroom all the time. It’s sad. You’ve got a bunch of fifth graders and they’re laughing because their teacher has diarrhea. You don’t want to be in that scenario. I think that’s a big thing. People have to understand that they have to be on antidiarrheals for a long time. That’s how we prepare patients for that.

 Well, informed consent. We try to let them know everything that may or may not happen. We tell them, “If this isn’t something you think is going to work with your lifestyle, we may need to look around.”

 Exactly. But again, that’s the tension between kind of breaking up with us and deciding to go on and finish their cancer issue or to be on something that may help (but it is going to potentially cramp their lifestyle). That’s always going to be the tension with this. We do have ways around it, though. I do think this is something that will help people out.

As you said before, informed consent is really important. This means that we all try, in our clinic, to tell people up front what’s going to happen as best as we can. As we said before, not everybody is the same. We try to give them a potential worst-case scenario. “You’re going to be on antidiarrheals for a month. You may have to go the bathroom a lot.” We try to think about scenarios: if you’re going on a long car trip or you’re in a big meeting.

 Your occupation. And again, we try to work around what their occupation is. We look at what they do and ask, “Is this right for you?” A lot of people are game to try. And if people are scared, you say, “Listen, try it. You can always stop it. It goes away.”

The key, though, is really being proactive up front. You need to tell people exactly what they’re going to need in terms of antidiarrheals. You need to prepare them with how much we think it is going to happen and what to do if they get diarrhea, such as when to call, when not to call, etc. I think it’s important.

 Right. We’ve had many patients hospitalized because of diarrhea.

 We have. That happens, occasionally, and we have to let people know that. And again, as you said before, we always are open for fluids. People need to come in and get fluids. And during that time, you kind of work on their diarrhea and make sense of it.

 As nurses, we really encourage patients to push fluids. It could be anything that melts. It doesn’t have to be water.

 We encourage that they always have something beside them that they’re drinking. It could be

 Hopefully, as neratinib becomes more popular, perhaps there will be more research or we’ll have even better treatments. We’ll learn more.

 There is a trial, going on right now, that we’re a part of. We put a few people on it. In people who are getting neratinib as extended adjuvant therapy, they’re actually looking at the degree of diarrhea when we give them prophylactic therapy up front. It’s kind of the follow up study to the one that was already done. And so, we’re trying to figure that out, to see what the true incidence of diarrhea is in people who get this prophylaxis.

At the end of the day, this drug seems to be fairly effective. Again, we’re talking about a 3% to 5% absolute improvement in recurrence rates, going up to as high as 95%. That’s pretty good. But on the other hand, there is diarrhea. It’s always a risk-benefit ratio. It sounds like any diarrhea really happens for the first month or two. But for a lot of people, the diarrhea tends to go away or be ameliorated with dose modifications.

 It is. It’s usually just an issue in that first month.

 It’s rare to have someone have it for a really long time. Generally, a lot of it goes away. We also consider tachyphylaxis. It’s something that people need to think about. Again, it’s not for everybody. In my practice, we’re going to recommend this for people who really are at high risk of recurrence. We are going to recommend it for somebody who doesn’t have a complete pathologic response to their TCHP [docetaxel, carboplatin, trastuzumab, and pertuzumab]. We are going to recommend it to somebody who maybe has a lot of lymph nodes, up front, where you really want to do more. These are people that hopefully will be a little more motivated to stay with us and want to continue for that extra year. It sounds like it’s a big deal, but it’s manageable. We’re doing it for people who are at a higher risk of recurrence.

Extended Adjuvant Therapy in HER2-Positive Disease

Now we’re going to talk about early-stage breast cancer. 

-positive breast cancer is probably the most common form of breast cancer that we see in our practice. The typical patient that comes in is someone who is 45-50 years old. She has a mammogram. She has some microcalcification. Someone does an ultrasound, and she’s got a 1- or 2-cm breast cancer tumor. They go ahead and do a lumpectomy. And they do a node dissection. It’s node-negative. 

 is strongly positive. Then, we decide what to do.

The first thing we obviously do with these people is decide whether they need chemotherapy or not. And, we use genomic tests. Let’s assume that the genomic tests, MammaPrint or Oncotype DX, are negative, low risk. Then, we say, “OK, now what?” We put them on antihormonal therapy. Generally, we’ve always thought of this as benign. But again, you see them a lot. You’re the one on the other end of the line, after I’ve given them the therapy. For premenopausal women on tamoxifen, for example, the big concern everybody has is, “Am I going to get uterine cancer from my tamoxifen?” Do you hear that a lot from people?

 In the savvy computer people who look up side effects, I do.

They say, “I don’t want tamoxifen, under any circumstance.” And we say, “Generally, for premenopausal women who are still menstruating, they’re not going to get uterine cancer.” Sure, anything can happen, and it has. In our practice, I’ve seen enough people. We all have. But, on the other hand, the vast majority of people will be fine with tamoxifen. But what people do get is vaginal discharge. They get hot flashes. Occasionally, they’ll get blood clots. The big one is cramps. You’ve probably heard that from people?

 We see many women who want to stop because of arthralgias.

Correct. But, the arthralgias are more from the aromatase inhibitors. They are from tamoxifen, too. The other issue occurs in postmenopausal women who get aromatase inhibitors. When I start people with anastrozole, I usually tell them, “You’re going to be on it for a couple of months. You may get it. About 10% of the people get it. For 15% of the people who get it, it’s really bad. If it doesn’t go away, we’ll stop it and try something else.” That’s one of our most common conversations we have. You’ll email me, or call me, and say, “Mrs. ‘X’ has really bad arthralgia. She wants to stop this. What should we do next?”

 We like to give the patient at least a 2-week break to see if the symptoms resolve on their own. If they resolve, we determine that it was probably most likely the aromatase inhibitor. If the symptoms don’t go away, then we have them follow up with their primary care physician to see what else could be going on.

 But, we find that most women do very well on another drug in the same family.

Right. That’s really important to say. That’s something which patients don’t realize. There are at least 3 options. There’s anastrozole, which is Arimidex. There is letrozole, which is Femara. And, there is exemestane, which is Aromasin. All 3 are generic, now. The cheapest one, right now, is anastrozole.

The thing is, we can treat with those 3. And, if they don’t do well, those 3, in a postmenopausal woman, we can always give them tamoxifen. So, that’s 4. And, there’s even another one after that, toremifene. (Fareston), which is unfortunately more expensive than tamoxifen because it’s still not generic. But, we have 5 things that we can give people. People don’t realize that they can go through any of the 5. We’ve had people go through all 5, as you know.

Generally, most people will be fine with 1 or 2. We generally tell them, “Don’t give up. There are other things we can do.” Now, if we’ve gone through all 5 and they’re still miserable, and we’ve had people like that, we have to make the determination. What is the true risk for recurrence in this patient versus the side effects? I don’t want people to be miserable for 5 years.

 Right, and the side effects can be pretty substantial.

Absolutely. People say, “I feel like an old woman.” Do you get that one from people?

 What I do hear, that I didn’t anticipate, is a lot of people have called in with mood changes.

Yes, there’s some mood changes. Estrogen does have something to do with mood, and you are reducing estrogen from a low level, in postmenopausal, to 0. Even that small drop can cause mood changes, and can lead to depression.

 That can be pretty substantial, as well.

We’ve had to change people around to other drugs because of that. There’s all of these other things that people don’t really talk about.

Treatment Overview: ER-positive Breast Cancer

 One thing that we have talked about a lot, and we’ve done a lot of work in our clinic with this, is osteoporosis from these drugs. Generally, if the patient’s bone density is low enough, their T-score is less than —1.5, or –2, we’ll offer them some sort of resort to therapy, like zoledronic acid, re-classed, or denosumab, Xgeva or Prolia.

 For nurses who are listening to this, and other doctors, the issue is that this has to be coded properly. We run into this a lot. This is for prevention of cancer therapy induced bone loss. It’s not for osteopenia. It’s not for osteoporosis. There are a strict set of criteria to get payment for these drugs. We’ve run into this problem, occasionally, in our practice.

 And, of course for the patients who are on this family of drugs, we have them take a calcium with vitamin D, daily.

 We also suggest weight-bearing exercises.

 Weight-bearing exercises. Also, we tell them to wash their mouth because there’s a small incidence of osteonecrosis of the jaw. However, it’s very uncommon. When we put people on that, because they’ve either read about it or have seen it on television, the first thing they say is, “You put me on this drug. Is my jaw going to fall apart?” Have you had this conversation with people?

 Yes, perhaps. She’s laughing because she actually has had that conversation. So, these are things that people worry about with receptor-positive breast cancer. But, the nice thing is, the vast majority of people with what’s called luminal A, low-risk hormone-receptor positive breast cancer will survive. We’re talking about a 97%, 5-year disease-free survival; or, a 95%, 10-year survival. I think the vast majority of people are going to be absolutely fine, which is great. This is really the cool part of our business.

 How do you determine whether to keep a patient on 5 or 10 years of therapy?

 That’s a great question. It’s a question that you get all the time. I think that the reflex was always for 10 years. Aromatase inhibitors, however, are another story. The data’s still very uncertain. We did a big trial where women got 5 years of aromatase therapy versus 10. Statistically, there was no difference between the 5- and 10-year arm in terms of disease-free survival. But there were numerically fewer recurrences in the 10-year arm. So, we’re kind of trying to figure out who should get what. That’s unknown. Right now, most people get 5 years of therapy, unless they don’t want to stop.

 We talk about the risks and benefits. The risks are arthralgias, osteoporosis, and that sort of thing.

 But the benefit is reduced recurrence. Most of those recurrences turn out to be in the breast. So, if a woman has had a bilateral mastectomy, I probably would tell her not to do it.

Tamoxifen is a different story. With tamoxifen, there seems to be benefit. In fact, there was a trial called ATLAS. This happened before you came into our practice. It must have been about 15 years ago. They came to us and asked us to participate in it. They had women who were on 5-year tamoxifen. It was not even a randomized trial. Then, they offered them another 5 years of therapy, and they recorded what happened to them.

It turns out, in that trial, there were fewer recurrences in the 10-year group. But the problem with that is you get more blood clots and endometrial cancer. So, I dialed back a little bit. I don’t give it to everybody, any more. Now, if someone is high risk for recurrence, someone who has a lot of lymph nodes, up front, and they had cancer when we first started, I may think very strongly of giving that. It’s the same for people who are premenopausal. I don’t give luteinizing hormone-releasing hormone agonists, like Lupron or Zoladex, to everybody. The side effect profile of those drugs tends to be a lot harsher for the benefit you get. And so, it’s really for someone who is at higher risk—someone who has a lot of lymph nodes, or had a big tumor. And those are the same people I tend to give 5, 10 years of therapy to.

 Have you ever had a patient say, “Can I be on Arimidex forever?”

 Absolutely. I have a lot of them. There is a trial which had women on tamoxifen for 5 years. Then, they got letrozole for another 5 years. Then, they randomized them to either nothing or another 5 years of letrozole. The people who got an extra 5 years of letrozole had fewer recurrences, mostly in the breast. But they had a lot more osteoporosis. I’ve had a woman, in my practice, for almost 13 years. She wanted to continue. Yes, they want to continue forever.

 As the nurse, we make sure they get their DEXA scans every 2 years.

 That’s an important thing to do, especially in this era where we’re pushing back DEXA scans to 2 years, 3 years, or 4 years. Insurance won’t pay for it. This is a big problem. This is very, very important. I think my colleagues around the country have differing opinions. But, for me, I tend to really reserve long-term therapy for people who are at a high risk for recurrence.

We have some genomic tests, like the BCI [Breast Cancer Index] and ENDOPredict, that help tell us who’s going to recur, between years 5 and 10. We are starting to use those tests to help us, but they’re not widespread. They’re expensive. Insurance doesn’t like to pay for them. It’s interesting to see how we’re going to do this.

Considerations When Treating With Hormone Therapy

 The next thing we’re going to talk about is triple-negative breast cancer. It’s a tough subject because of the way we have defined it. Doctors define triple-negative breast cancer as all cancers that are not 

-positive. The problem is, the tests may not have worked. So, 5% of the time, I have found patients who were probably 

-positive and we didn’t know it. In my practice, for anyone who comes in with triple-negative breast cancer, if there’s even a hint that they’re 

-positive, I make you re-do testing. It’s a pain because you’ve got to go get the block, and the patient’s waiting to figure out what happens.

So, that’s one thing: defining it. And the problem is, once you define it, there are multiple subtypes of it. There’s patients who are 

-positive, when we see them. That’s 1 subtype of triple-negative breast cancer. There’s triple-negative breast cancer that appears to respond to immunotherapy. There’s a triple-negative breast cancer in which we may give people antiandrogens. It’s like 

-positive breast cancer, but it’s for the AR [androgen receptor]. There’s all of these subtypes, and it’s hard to lump everything together. But, right now, the only thing we do is chemotherapy.

Those people come in. Most of them get neoadjuvant chemotherapy. The bigger thing with triple-negative breast cancer is, it’s got such a bad reputation. People must talk to you, and they must go, “Oh my, I’ve got triple-negative breast cancer. I read this thing on the internet. I’m done. I’m going to die in a year.” How do we handle that?

When we do our teaching and we tell them about the drugs and how they work, we tell them that we’re going to continue along this path with these drugs. We’re going to restage them. We’re going to follow them and make changes, as necessary. I’ve had patients who’ve been very concerned because they have felt like they have no options because they were triple-negative.

 That’s a big one. “I can’t get tamoxifen. I can’t get Herceptin. I’m done.”

Yes. I always try to stop that, right there, because there’s so many things we can do. Just knowing how much research we’re involved in, I believe that there’s so many things on the horizon. If we’re treating you and we’re following you, perhaps something that may not be available today might be available in a couple of weeks, or a couple of months from now.

We’re there to encourage them and let them know that we’re doing the best we can with what we have available. And there’s always more that’s being worked on.

 That’s an important thing. I think that’s really important. No matter whether you have early-stage triple-negative breast cancer, or late-stage triple-negative breast cancer that’s relapsed, there’s always something to do. That’s really important for us to convey. It’s very easy, as a doctor, to talk to providers, and to throw up your hands and say, “All right, go in hospice. There’s nothing else we can do.” There’s always something you can try.

I’ve told patients that I’ve never, ever, ever, ever heard you say that, “I’m done, I’ve got nothing left.” You always have something. There’s always something.

 Sometimes, however, you don’t want to torture people. I tell that to them, my patients. As you know, we get to a point where no matter what we do, unfortunately, it’s just not working. At some point, people usually tell me, and I let them give me the lead, “I’m done. I just want to live whatever time I have left and be comfortable.” We don’t want that to happen but, unfortunately, in triple-negative disease, it happens more than we’d like. But, on the other hand, there’s always something to do. Even when you’re in hospice, there’s something you can do. You can always help someone have less pain, less nausea, less side effects. You can help them to be comfortable. That’s key. For people, when you give up all hope of anything and just feel abandoned, that’s what I don’t like. As you’ve worked with me for a long time, you know that’s what I don’t like more than anything.

I’ve had patients tell me that one of the best things that you’ve said to them is, “If you still want to fight, I’ll fight with you.”

I’ve also had patients come right to me, rather than you.

Part of the job, of the nurse, is to let them know the resources that are available. We need to let them know about palliative care. It’s important to figure out how we can make them as comfortable as possible, so they can enjoy the time that they have.

 Right, and we’re not going to let them down. They just want to know that someone is there. We may not have a ton of things to do, but we’re there. I think that’s key.

Management of Triple-negative Breast Cancer

 The treatment of metastatic disease, and how we handle patients with metastatic disease is much different. I always remember this case, and I always tell this case to people. This was probably about 15 years ago. I had a new patient come in to see me. She was late for her appointment, like an hour and a half late, which, for my practice, is actually not bad because we’re really busy. When she came in late, I asked, “So, why were you late?” And, she goes, “Because I was picking out my tombstone.”

-positive breast cancer with a few bone metastases. That was it. It was not a lot of disease. Part of what we have to do, when people come in the door, is tell people, “You may have something that’s not curable, but you have something that’s controllable for a long time.” The reason people die from breast cancer is that your liver gets filled up with cancer. Or your brain gets filled up with cancer. Or maybe, occasionally, your lungs get filled up with cancer. It keeps growing and you get liver failure. Or you get brain problems.

Having disease in your bone doesn’t kill you. Occasionally, it could, but it usually doesn’t. Having a few scabbed lymph nodes, or 1 or 2 liver metastases that are really small doesn’t kill you. Our job is to keep those stable. We’re not getting rid of all of them, but we can keep them small, for as long as we can, to give you a decent quality of life for as long as we can. That’s what I tell people. They all say, “I’m going to die. That’s it.” What do they tell you about metastatic disease?

 Patients can be very anxious about upcoming scans.

 They are very anxious about what they’re going to find. Most of the time, they want to hear that everything is gone. But, we try to just let them know that, again, stable is good.

 No spread is good. And, one of my favorite things to say is, “We have a medicine for just about everything.” Again, if we determine that it’s spread to their bones, we have Zometa, zoledronic acid, and Xgeva, denosumab. We will treat as best as we can. Again, we may biopsy the site to make sure we’re choosing the right treatment plan. But patients get very anxious about scans and tumor markers.

 Right, they really do. A lot of my colleagues don’t even do tumor markers, for that reason. I tend to be a little bit different. I tend to look at symptoms, tumor markers, and scans. Oftentimes, the scans are kind of the same. Maybe they are a little different, but not that bad, and the markers are going down. It’s very satisfying to tell somebody, “Look, the scans kind of look the same. They may be a touch worse, but your markers are going down. So, it’s likely that the cancer is getting better.” A lot of people don’t like tumor markers. They think they’re just hocus-pocus. But I, personally, in my practice, tend to use the markers.

 Well I think we see the correlation. I think there’s enough correlation.

 Right. People live with metastatic cancer for so long, now. We’re talking, in 

Breast Cancer Treatment: What to Expect | CURE^® Expert Connections

Characterizing the Types of Breast Cancer

Establishing a Plan for Treatment

Treatment Overview: HER2-positive Breast Cancer

Preventing Recurrence: HER2-positive Breast Cancer

Extended Adjuvant Therapy in HER2-Positive Disease

Treatment Overview: ER-positive Breast Cancer

Considerations When Treating With Hormone Therapy

Management of Triple-negative Breast Cancer

Goals of Therapy in Metastatic Breast Cancer

CDK4/6 Inhibitors in Metastatic Disease

Latest News

Breast Cancer Treatment: What to Expect | CURE® Expert Connections

Characterizing the Types of Breast Cancer

Establishing a Plan for Treatment

Treatment Overview: HER2-positive Breast Cancer

Preventing Recurrence: HER2-positive Breast Cancer

Extended Adjuvant Therapy in HER2-Positive Disease

Treatment Overview: ER-positive Breast Cancer

Considerations When Treating With Hormone Therapy

Management of Triple-negative Breast Cancer

Goals of Therapy in Metastatic Breast Cancer

CDK4/6 Inhibitors in Metastatic Disease

Latest News

Breast Cancer Treatment: What to Expect | CURE^® Expert Connections