The Pro-Active Breast Cancer Patient Toolkit Resource Guide

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What Should You Know About the Role of Surgery in Breast Cancer Treatment?

What Should You Know About the Role of Surgery in Breast Cancer Treatment? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente explains how surgery approaches, including mastectomy and lumpectomy, are used in treating breast cancer, and addresses common misconceptions about mastectomy.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

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Transcript:

Dr. Valente:            

So, breast cancer patients have the option to remove their whole breast, which is called a mastectomy. And if they pick that option, they could choose to have reconstruction or to essentially go flat. Yes, we have even done reconstruction in metastatic breast cancer patients. Metastatic breast cancer patients live for a really long time, so giving them reconstruction to make them feel whole and kind of put them back together after a mastectomy is definitely a good option.        

The other option is to just remove the cancer. So, if the patient has a small breast cancer, and it’s metastatic, we can just say – Hey, you don’t have to have the whole breast removed. So, we can do a lumpectomy, as well.

So, a lumpectomy is essentially a surgery that removes the cancer with a normal rim of tissue around it. We also call it a partial mastectomy, meaning you’re removing just part of the breast. Or it’s also called breast-conserving surgery. So, it’s any method that removes that cancer with a normal rim of healthy tissue around it but allows the woman to keep her breasts.

So, when it comes to surgical choices and a cancer coming back, some women think that if they pick the most advanced surgery, such as a mastectomy, it helps prevent cancer from going somewhere else in the body. And that’s actually not true. Removing both breasts, doesn’t make you live one day longer. At that point, a mastectomy or a lumpectomy is a choice.

And prognosis – meaning whether or not the cancer’s gonna show up somewhere in the body – is based really on two things – the stage at which the breast cancer presents itself and what type of breast cancer it is – meaning is the cancer outside of the lymph nodes? How large is it? And if it’s a triple negative or some other type of breast cancer? Those determine the higher likelihood that somebody could develop metastatic breast cancer later in their life, even though small, early-stage breast cancers, unfortunately, can also develop metastasis later on in life.

But women sometimes think that if they pick the most aggressive surgery, it’s helping prevent metastatic spread later on in life. And that’s actually not the choice.  Breast cancer surgery is the option that women choose to surgically remove their breast cancer. But again, choosing a mastectomy or a lumpectomy for an early-stage breast cancer is a choice of how they wanna remove the breast cancer. But it doesn’t improve the chances that they won’t have metastatic spread later on.

So, the role of surgery for metastatic breast cancer is mainly for what we call to remove the cancer or sometimes for local control. So, the number one treatment if somebody is diagnosed with metastatic breast cancer is systemic therapy. That might be chemotherapy or endocrine therapy. But it’s really to get the metastatic disease under control.

So, where does breast cancer usually go? Bones, liver, lungs, brain. So, surgery to remove the breast or the breast cancer in the breast doesn’t really take care of those problems. But a lot of times for metastatic cancer, the one reason would be for local control. So, if the cancer is causing issues in the breast – swelling, coming out of the skin – where it’s a wound issue, then we’ll remove that to get better control of the area in the breast.

The other reason is if somebody has metastatic cancer, and their cancer in the other area of their body is controlled with the therapy, then we say – Hey, chemo’s working, or the systemic therapy’s working. The only thing that seems to be left is the area in your breast. Then for a conversation with medical oncology, we say you don’t have to come off your medications. This is a good time to remove the breast cancer to control that problem.

Metastatic Breast Cancer Treatment and Research News

Metastatic Breast Cancer Treatment and Research News from Patient Empowerment Network on Vimeo.

As metastatic breast cancer testing approaches continue to expand, new and promising treatments have emerged. Dr. Lisa Flaum shares information on recently approved treatment options and the role of genetic markers in accessing targeted therapy. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

There are a lot of new and promising treatments for metastatic breast cancer. So, the treatments in general and the novel treatments and studies really vary based on the subset of metastatic breast cancer. So, when we’re making our treatment decisions, a lot of it is defined by those markers. So, if someone has a tumor that is hormone receptor, estrogen and progesterone receptor positive, and HER2-negative, the mainstay of treatment is typically drugs that target estrogen and often partnering drugs that target estrogen with other more novel or newer treatments.

So, just in the last five plus years, there have been a number of new drugs and even new drug categories that we didn’t have previously. So, for that population of the estrogen receptor positive tumors, the biggest breakthrough over the last number of years has been a class of drugs called CDK4/6 inhibitors. So, that includes drugs like Ibrance, Kisqali, Verzenio. And they’ve emerged as a very important and effective and often a recommendation for our first-line treatment for these patients combined with anti-estrogen therapies that have vastly improved outcomes for patients. So, a much higher percentage of patients respond to these drugs, the duration of the responses has extended quite a bit. And importantly, patients tend to tolerate this drug class really, really well.

 So, for many patients starting out with that diagnosis, this type of drug class is going to be part of the discussion. Even in the last year, another drug category has emerged with approval of a new drug called alpelisib, which is something called at PI3 kinase inhibitor. So, again, back to defining the options based on the molecular profile of the tumor. So, this newer oral drug also partnered with anti-estrogen therapy, has been an important breakthrough for the treatment of patients who harbor this specific molecular abnormality. So, important to define whether that’s an option by some of these molecular testing.

There’s also newer drugs and studies of newer drugs that affect the estrogen receptor in different ways than some of our traditional medications.

And this is an ongoing area of significant research. So, that’s the estrogen receptor positive tumors.

For patients who have HER2-positive tumors, these are tumors that tend to be more aggressive, that tend to require more aggressive upfront treatment, which usually involves drugs that specifically target HER2. So, again, defining what’s driving the tumor and hopefully having drugs available that can target that specific abnormality. So, HER2 targeted drugs have evolved quite a bit over the last couple of decades.

Initially, we just had a drug called Herceptin and then a drug called Perjeta or pertuzumab was developed. Then more recently a drug called Kadcyla. And then even in just the last six to 10 months, two new drugs that target that HER2 protein. One of them is called tucatinib, the other one is called Enhertu. They’re not necessarily appropriate for the first line of treatment, but really sort of expands our toolbox in terms of how we treat these types of tumors. And these are developments that have occurred, for one of the drugs, just in the last six months, and the other within the last year. So, a lot of progress.

And then for the third subset of tumors, which are the triple-negative tumors, those are the ones that do not over-express estrogen, do not have estrogen or progesterone receptors, and don’t overexpressed HER2. This has been historically an area of unmet need. So, tumors where we can’t use anti-estrogen therapies, we can’t use HER2 targeted drugs. And so, the main stay has always been chemotherapy. And even for this subset, we’ve had progress.

So, one of the drug classes that’s been approved in the last couple years for triple-negative breast cancers is immunotherapy. So, immunotherapy has gotten a lot of press. It’s been really breakthrough treatment for a lot of different cancers, has lagged behind to some degree in breast cancer, but has become now one of the early treatment options for people with metastatic disease, specifically those that harbor a molecular marker, an immune marker, something called PD-L1. So, another example of the tumor’s biology dictating potentially one of the treatment options.

There have been other drugs that have been approved for triple-negative breast cancers in women who have BRCA mutation, so who have germline genetic predisposition to breast cancer. And that opens another array of treatment tools that have been approved in the last few years. And then more recently, just over the last six months, another drug that’s been approved for triple-negative breast cancer, which is a drug called sacituzumab, again, not first treatment, but something that defines potentially future lines of treatment. So, big picture, there has been a lot of progress that increasingly alters our treatment tools for patients and allows us to have sequential treatments that can be effective if their given treatment is no longer effective.

Metastatic Breast Cancer Treatment Decisions: Which Path is Best for You?

Metastatic Breast Cancer Treatment Decisions: Which Path is Best for You? from Patient Empowerment Network on Vimeo.

 For each metastatic breast cancer patient, there are several variables to consider to access the best treatment path. Dr. Lisa Flaum explains key factors to consider, and discusses how the risks and benefits are weighed when making treatment decisions for an individual patient.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

So, when we’re determining a treatment approach, there are a number of variables. So, to some degree, based on a patient’s individual characteristics, their age, their other health issues, may guide what treatments are available or indicated or even desirable from a patient’s standpoint. To some degree, the locations and extent of disease are important. So, if someone has cancer and that’s causing a particular symptom, with bony sites being a particular example, there may be a role for something targeted; Something like radiation, and in rare cases, surgery to target a specific symptomatic or worrisome spot of metastatic cancer.

In general, the mainstay of treatment for metastatic breast cancer is what we call systemic treatment or medical treatment, treatment that’s going to go everywhere and treat the cancer wherever it is. In some situations, we may be deciding between more or less aggressive treatment, and the locations and sites of disease may be important in determining that. If someone has extensive disease, for instance in a vital organ like the lung, the liver, the brain, we may start with something more versus less aggressive to try to get it better under control quickly. Whereas people with more limited metastatic disease may be able to start with something less aggressive.

And then beyond that, a lot of the decision-making is based on those molecular markers that I alluded to, which are defined by the hormone receptor status. So, whether the tumor expresses those estrogen and progesterone receptors, and whether the tumor over-expresses HER2. And then to a lesser degree, based on other markers that may be defined by additional tests.

So, every treatment discussion we have is a two-way street. So, our job is to present the data, present options, present recommendations. And often, we have an opinion on where we would fall and if there are a number of different options. But to me, it’s a collaborative discussion. And if there are options, it’s weighing what potential benefit do we get from a single option or from adding something to that particular option versus what are the downsides? And some of it is discussion about logistics. Do we do something IV versus oral? Is there a particular side effect that we’re hoping to avoid, such as hair loss? Which of course, we’re trying to avoid. Some treatments may have a higher likelihood of working, but a higher likelihood of causing hair loss. That may factor into our decision.

So, whether it’s the first decision point when we’re deciding on preliminary therapy or future decision points as we go through this journey, there is always a discussion about this is where we are, these are what our options are. Here’s how we’re going to weigh the pros and cons. And then it comes back to a collaborative decision about how we weigh the risks and rewards and where we’re going with an individual patient.

So, clinical trials are always part of at least the conversation, so they’re always a consideration at each step of our discussion. So, from a preliminary treatment standpoint, we’re always going to go through here are our standard options. Here’s, again, what we think is most appropriate. And if there’s a clinical trial that’s appropriate in that scenario, we’ll lay that out there as an option. So, a clinical trial is always worth discussing. It’s always worth asking that your doctor, “Is a clinical trial appropriate for me at this point?” But it’s not always the right recommendation.

So, there are a lot of scenarios, especially at the beginning of treatment for metastatic disease where we have so many options, and so many new and novel treatment options and drugs that have been approved fairly recently that have defined the standard of care, that the standard is going to be often what we recommend. And a clinical trial may be something that we would use if that treatment fails to work or at some future point down the line. And at other points in time, we have very good, appropriate clinical trials that could be indicated at any step along the way. So, it’s worth the discussion. Whether it’s the recommendation or not depends on the circumstances, it depends on the time. What we have today was very different than what we might’ve had available six months ago and six months from now. But clinical trials are out there, and if the location that a patient is going doesn’t have access to clinical trials, it’s always reasonable to ask too, “Should I be going somewhere else to see if a clinical trial is appropriate?”

What Do Breast Cancer Patients Need to Know About COVID?

What Do Breast Cancer Patients Need to Know About COVID? from Patient Empowerment Network on Vimeo.

Due to COVID-19, many patients with breast cancer have faced new challenges when it comes to receiving care. Dr. Lisa Flaum addresses precautions when receiving care, and the role of telemedicine in virtual care. 

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

Right, so COVID has introduced challenges for all of us, for cancer patients specifically. However, we have not typically altered our recommendations for appropriately treating patients based on COVID. So, any of the treatments that would be appropriate are still appropriate, and for most patients, I’m recommending that they follow the guidelines that they are likely following otherwise. I think that a lot of the precautions that are put in place from a COVID standpoint, which are people are washing their hands, and sanitizing, and wearing masks, and keeping distance, and not socializing and big crowds, all of those things are already helping our patients and certainly prevent COVID, but also prevent all the normal stuff that people are typically exposed to when they’re going through a cancer diagnosis.

What I tell people is that they’re already probably going above and beyond what we would have recommended in a normal setting of metastatic cancer. Although they’re likely at a little higher risk, depending on what they’re receiving, than the general population, for the most part, patients have done well and we have not seen an excess number of COVID cases in our patient population. Again, it’s likely because people are doing the right things anyway, COVID or not COVID, and certainly regardless of their cancer diagnosis.

I guess the one change or the changes that we’ve made is implementing a little more tele-medicine versus in person visits when it’s appropriate. So, there are things that we can accomplish over the phone in terms of managing side effects and asking how patients are doing.

Obviously we can’t do an exam, we can’t do imaging, but a number of things can take place over the phone and we’ve made accommodations in terms of some of that to allow for patients to stay out of the hospital setting as much as possible.

In some situations, it has impacted decision making if there’s a choice between one treatment and another, and one is more aggressive or more suppressing of the immune system, if you’re going to weigh the normal pros and cons and we’re always going to throw COVID into the mix. Well, if you’ve got this particular treatment, your immune system shouldn’t be as suppressed, you don’t have to come in as often, you don’t require an IV. So, the variables definitely come into play, but certainly COVID doesn’t prohibit us from choosing any given option, but it affects some of the discussion in most cases.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips.

Are You Prepared for Your Breast Cancer Appointment? Expert Tips. from Patient Empowerment Network on Vimeo.

Could you be better prepared for your breast cancer appointment? Breast cancer specialist, Dr. Lisa Flaum reviews helpful tools that can help ensure patients get the most out of their doctor visit.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

I think they should think ahead of time about what issues are most important to them, have a list of questions, whatever they might be. And hopefully, our job, if we’re doing it well, is to answer the questions that the patients don’t even necessarily know to ask. So, I think that the important thing is not so much a specific question, but getting your questions answered, sort of walking out of that initial visit at least with a preliminary understanding of what your diagnosis is, what the implications are, what the decision making is regarding treatment. And understanding why your doctor is choosing the treatment that they’re choosing or recommending and what your alternatives are.

And I think knowing what the balance is. So, not just, okay, you’re choosing this because you think it’s most effective, but then how do you balance it with quality of life, with side effects, and with all the other variables that go into that choice. Patients have different perspectives in terms of how much information they want, in terms of the bigger picture. Do people want information about prognosis? Is that even answerable at an initial visit? So, a lot of it differs in terms of what the patient’s desires are and where you are in the workup to know how best to answer those as well.

The other thing I would say about preparation for a visit is, it’s important to have someone with you, either in-person or remotely given the circumstances. So, an initial visit with a medical oncologist can be overwhelming and having a second set of ears and eyes and someone to take notes so you can listen, is really helpful. Because often patients walk out of that visit forgetting everything that was said, or at least not comprehending all of it immediately. So, always having another set of ears or eyes listening is really important.

Should You See a Breast Cancer Specialist?

Should You See a Breast Cancer Specialist? from Patient Empowerment Network on Vimeo.

As breast cancer treatment options continue to expand, it’s important to partner with a physician who is up to date on the latest developments. Dr. Lisa Flaum explains why patients should consider seeking a specialist and obtaining a second opinion.

Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.

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Transcript:

Dr. Flaum:                  

So, in terms of who you should see as a medical oncologist and whether you need a breast cancer-specific specialist. I do think it’s a good idea for the majority of patients do at least have an opinion with someone who specializes in breast cancer. Increasingly, cancer diagnoses of all kinds, and breast cancer specifically is becoming more complex. There’s a lot of variables that guide treatment, and it’s important to have someone on board who’s up to date on the latest knowledge treatments, clinical trials if indicated.

Sometimes it makes sense to see a breast cancer specialist, but potentially get your care with whoever is more easily accessible in terms of an oncologist closer to home, if that makes sense. But to at least start with an opinion by someone, from someone who specializes in breast cancer.

I think the patients should seek a second opinion when they think it’s appropriate. And it’s often appropriate; even if it’s just for peace of mind to know that what you’re hearing from your initial visit is, if there’s agreement amongst specialists. Most doctors, I can speak for myself personally, do not get their feelings hurt when someone asks for a second opinion and often I encourage it. I think it’s helpful from a patient peace of mind standpoint, and it’s even appropriate to ask your doctor if I’m going to seek a second opinion, is there somewhere you would recommend that I go. I think it’s appropriate if you have a doctor in a community practice and they may have a referral system of who they would refer to.

And even then from an academic standpoint, if someone asks me where they could or would go for an opinion, I would recommend colleagues at other institutions who I think would be appropriate. So, I think you have to advocate for yourself. You have to do what’s best for you. And number one, I don’t think feelings will get hurt. And number two, I don’t think that’s the reason to not get the care that is appropriate.

How Can a Breast Cancer Psychologist Help You?

How Can a Breast Cancer Psychologist Help You? from Patient Empowerment Network on Vimeo.

Dr. Kathleen Ashton shares advices for patients facing a breast cancer diagnosis, including tips for emotional coping, talking to friends and family, as well as utilizing support services.

Dr. Kathleen Ashton is a psychologist in the Breast Center, Digestive Disease and Surgery Institute at Cleveland Clinic. Learn more about Dr. Ashton, here

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Transcript:

Dr. Ashton:                

My name is Dr. Kathleen Ashton. I am a breast psychologist at the Cleveland Clinic Breast Center.

So, I work with breast cancer patients in a number of different ways. I work with patients when they’re first diagnosed in terms of adjusting to their diagnosis and managing treatments. I work with long-term survivors of breast cancer who might be dealing with symptom management or the emotional after effects of their cancer. And then, I work with metastatic breast cancer patients as well. 

Some of the common fear is that breast cancer patients experience are progression. They worry about how their disease is going to affect their family. They might worry about managing symptoms like fatigue and pain. And they also worry about their quality of life and maintaining the things that are most important to them.

When I work with patients who are worried about how metastatic breast cancer is going to affect their life, I often use two specific types of therapy.

One is called cognitive behavioral therapy which deals with the different thoughts that a patient might be having about their breast cancer as well as the different behaviors they might engage in that either help them or hurt them with their emotions. And then, the second type of therapy I often use is called acceptance and commitment therapy. And in particular, for metastatic breast cancer patients, this is a really helpful type of therapy that focuses on values, what gives people meaning in life, and whether their actions are in line with their values.

When metastatic breast cancer patients come to me for advice, one of the first things I usually tell them is that metastatic breast cancer is an emotional roller coaster.

There are ups and downs, there’s scans, there’s new types of treatment that they might be encountering and wondering about what the side effects are. So, what can be most helpful to those patients is really learning to stay in the present moment to, kind of, cope with things as they come and not look too far ahead, but also, be able to enjoy the moment that they’re going through.

When sharing their diagnosis with their family and friends, metastatic breast pit – breast cancer patients may experience just misunderstanding in what it means to have metastatic breast cancer. They may need to educate their family and friends that the goal of their treatment is often not a cure, but there are still treatments that can be helpful for them, and they can still maintain a good quality of life.

As a patient, if you’re interested in seeking a second opinion, it’s important to know that getting a second opinion is very normal with metastatic breast cancer. And your providers often are expecting this and would support that. So, just sharing with your provider your plan, the specific questions that you might have can help to facilitate communication between the two of you.

It’s important to know, as a breast cancer patient, that there are many resources to help deal with emotional issues. So, there are psychologists, psychiatrists, social workers who often have specific expertise in working with breast cancer patients. In addition, there are other resources such as cancer support communities, there are patient networks that help patients talk to each other.

There’s one called 4th Angel that we use a lot at the Cleveland Clinic that’s very helpful. And there’s alternative therapies as well, things like yoga, art therapy, music therapy that are all available to metastatic breast cancer patients.

When facing metastatic breast cancer, it’s important that patients know that they can lead meaningful lives, have close relationships, and have good quality of life. I also would add that, it’s important for them to know that mental health can be a part of their treatment team, that it’s common to have anxiety and depression, and just stress management concerns, and psychologists, psychiatrists, social workers all might be possibilities to add to their team to help them to have a good treatment outcome.