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Breast Cancer Awareness Month and Its Many Shades of Pink (and Blue)

We are more than half-way through Breast Cancer Awareness Month (BCAM) – impossible to miss given the pink ribbon avalanche that arrives each Fall. While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

“BCAM is a 2-sided coin in our community,” states Jean Rowe, Director of Support and Provider Engagement at The Young Survival Coalition. On the one hand, she explains, celebrating successful treatment outcomes and raising awareness is important, but “on the other side, expectations that come with the pink ribbon in October can be overwhelming, isolating, infuriating and bewildering.” 

The pink ribbon, so long a symbol of breast cancer awareness and support, has become for many a symbol of what’s missing from the BCAM narrative.  When I first pinned a pink ribbon on myself,  I was newly diagnosed with breast cancer. Back then, I felt that wearing a ribbon was a symbol of solidarity, and I wore it proudly. Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on the other side of cancer I see a broader picture, a richer landscape of many shades beyond pink.

A Whiter Shade of Breast Cancer

For Siobhan Freeney breast cancer is not pink. “When I see pink I’m reminded of all things feminine, “ she says. “My delayed breast cancer diagnosis resulted in a mastectomy. There’s nothing feminine or pink about that. I see breast cancer as the elusive ‘snowball in a snowstorm’ because my breast cancer, all seven centimeters of it, was missed on consecutive mammogram screenings. I know now that I had extremely dense breasts, this caused a masking effect – white on white.”

Breast Cancer Shaded Blue

Much of the criticism of BCAM centers on breast cancer campaigns which over-sexualize the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialization and sexualization of the disease by the pink charities reinforces public awareness that breast cancer is gender specific.  Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis.” 

Ritchie suggests “adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity. Reminding the community that this is a genderless disease will give us a chance to receive an early diagnosis and therefore a better prognosis. We deserve equality.”

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC, also called stage 4, secondary breast cancer (SBC) or advanced breast cancer) from online blogs and social media networks was revelatory for me. As Lisa de Ferrari points out, “although breast cancer has been commercialized and is often presented in a way that seems to minimize the seriousness of the disease, the reality is that deaths from this disease remain extremely high.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. “Every Breast Cancer Awareness Month the huge focus is on awareness of primary disease. There has been little focus on secondary breast cancer and the only day for awareness is 13th October,“ points out Jo Taylor. “Awareness of SBC needs to be across the whole month.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

How To Honor All Sides of the BCAM Coin

This article is not meant in any way as a criticism of those for whom wearing a pink ribbon is  meaningful. I  am grateful that the original pink ribbon movement has brought breast cancer out of the dark ages when it was taboo to even mention the words “breast cancer” aloud.  However, time has moved on, and it is time to challenge the singular narrative of breast cancer as a female only disease wrapped up prettily in a pink ribbon. 

So to quote, Gayle A. Sulik, a medical sociologist, and author of Pink Ribbon Blues,  “this is not a condemnation of anyone who finds meaning in the ribbon or public events. It is a call to broaden the discussion, re-orient the cause toward prevention and life-saving research, and acknowledge the unintended consequences of commercialization, festive awareness activities, and the lack of evidence-based information that makes its way to the public.”

It’s important to honor your feelings and emotions at this time. If you want to celebrate BCAM, celebrate; if you want to sit out this month or use it as an opportunity to educate others in a different way, then do that. In the words of Rowe, “Everyone gets to experience BCAM the way in which they need and want to.”

However, I will add to this that whichever way you choose to honor this month, be more questioning. As MBC patient advocate Abigail Johnston says, “ask if the pink ribbon represents the community you are trying to reach before using it automatically. Be open to understanding that not everyone identifies with the same images and concepts.”

Perhaps consider wearing the more inclusive green and teal ribbon designed by METAvivor. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. “Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.”

Also use this month as an opportunity to broaden your understanding of breast cancer awareness. In the words of Terri Coutee, founder of DiepCFoundation,  “Without the metastatic community, I cannot understand, learn, or appreciate their experience of living with breast cancer. The men in the breast cancer space who are living with or have been treated with this disease have amplified their voices over the years to level the breast cancer awareness campaign to let us all know, breast cancer does not discriminate.”

Above all, don’t let breast cancer awareness in all its many shades be for one month alone. “When I began my advocacy, I hopped on the October bandwagon to bring awareness to a disease that has affected me, my own family, and dear friends too often, “ says Terri. “ Now, I look at it as only one month out of a year we need to bring awareness to latest studies in oncology, clinical trials, surgical best practices, emotional recovery, support, all mixed in with a bit of gratitude for the friends I’ve made along the way and to mourn those I have lost.”

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.

See More From The Pro-Active Breast Cancer Patient Toolkit

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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.

See More From The Pro-Active Breast Cancer Patient Toolkit

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What Do Breast Cancer Patients Need to Know About COVID?


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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Metastatic Breast Cancer: Accessing the Best Treatment for YOU

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.

When Is a Full Mastectomy Appropriate for Metastatic Breast Cancer Patients?

When Is a Full Mastectomy Appropriate for Metastatic Breast Cancer Patients? from Patient Empowerment Network on Vimeo

Dr. Stephanie Valente discusses mastectomy for metastatic breast cancer patients, including common misconceptions around breast cancer surgery.

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

See More From INSIST! Metastatic Breast Cancer


Transcript:

Dr. Valente:                

So, there are a lot of reasons that a woman undergoes a mastectomy. The first one is choice. So, anytime somebody is diagnosed with breast cancer, they actually have the choice of whether or not they want to remove their whole breast. So, even if their cancer is small, they do have the option of removing the whole breast. If the cancer is smaller, they might have the option to save the breast, which is called a lumpectomy.

Sometimes cancer is found, and it’s a little bit more advanced where saving the breast is not an option. So, the cancer is larger than a lumpectomy would allow. And sometimes that’s what’s called the extent of disease. So, the amount of breast tissue that’s involved requires a majority of the portion of the breast to be removed.

So, just because a woman has breast cancer that’s made its way out of the breast, into the lymph nodes, or beyond – so, metastatic cancer – doesn’t necessarily mean that she needs a mastectomy. So, just because you’ve got metastatic cancer doesn’t necessarily mean that the breast needs to be completely removed.

So, I think that one of the biggest misconceptions is that the more aggressive somebody is with their surgery, the better their chances with survival.

And again, taking a step back and saying you can choose a more aggressive surgery, but a more aggressive surgery doesn’t necessarily mean it gets you out of chemotherapy or it gets you out of radiation therapy. Those things are recommended, independent of a woman’s choice for the type of surgery that she may or may not pick.

Insist! Metastatic Breast Cancer Resource Guide

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Metastatic Breast Cancer: Accessing the Best Treatment For YOU

Metastatic Breast Cancer: Accessing the Best Treatment For YOU from Patient Empowerment Network on Vimeo.

How could genetic testing results impact your metastatic breast cancer treatment options? In this INSIST! Breast Cancer webinar, Dr. Julie Gralow discusses essential testing, the latest targeted therapies and emerging breast cancer research.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance.

Download Program Resource Guide


Transcript:

Katherine:

Welcome to Insist Breast Cancer, a program focused on empowering patients to take an active role and insist on better care. Today, we’ll discuss the latest advances in metastatic breast cancer, including the role of genetic testing and how this may affect treatment options. I’m Katherine Banwell, your host for today’s program, and joining me is Dr. Julie Gralow. Welcome, Dr. Gralow. Would you introduce yourself?

Dr. Gralow:   

Hi, thanks, Katherine. I’m Dr. Julie Gralow. I’m the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance.

Katherine:    

Excellent, thank you. Before we begin the discussion, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team. Well, Dr. Gralow, let’s start by helping people understand how breast cancer is staged. Could we go through those stages?

Dr. Gralow:     

The staging of breast cancer has traditionally been by something we call anatomic staging, which has the tumor size, the number of local lymph nodes involved, and whether it has metastasized beyond the lymph nodes. So, that’s TNM – tumor, nodes, metastases. And so, that’s the classic staging, and based on combinations of those things, you can be a Stage 0 through Stage 4. Stage 0 is reserved for ductal carcinoma in situ, which is a noninvasive breast cancer that can’t generally spread beyond the breast, so that’s Stage 0, and then we go up for invasive cancer.

Interestingly, just a couple years ago, the big group that oversees the staging of cancers decided that in breast cancer, that TNM – the size, the lymph nodes, and the location beyond the lymph nodes – is not good enough anymore, so they came up with a proposal for what we call a clinical prognostic stage, which is a companion to the traditional TNM staging.

What they were getting at here was it’s not just how big your cancer is, how many lymph nodes, or whatever, it’s also at the biology of your cancer. So, this new clinical prognostic stage takes into account the estrogen and progesterone receptor of your cancer, the HER2 receptor at the grade, which is a degree of aggressiveness, and then, if your tumor qualifies, one of the newer genomic testing profiles that we use in earlier-stage breast cancer, such as the Oncotype DX 21-gene recurrence score or the MammaPrint 70-gene assay.

So, all of that goes into account now, and the whole point here is that the estrogen receptor, the HER2, the grade, and some of these genomics may actually make more difference than how many lymph nodes you have, where the cancer is, and how big it is, so it’s not just the size, but also the biology of the cancer that we’re trying to include in the new staging systems.

Katherine:    

In this program, Dr. Gralow, we ’re focusing on metastatic breast cancer. Would you explain when breast cancer is considered to have metastasized?

Dr. Gralow:  

That’s a great question because technically, if the lymph nodes in the armpit – the axillary area – are involved, that does represent spread beyond the breast, but if it stays in the local lymph node areas, it’s not technically called a metastatic or Stage 4 breast cancer. So, metastatic breast cancer would have traveled beyond the breast and those local lymph nodes, and some common sites would be to the bone, to the lungs, to the liver, less commonly – at least, up front – to the brain, and it could also travel to other lymph node groups beyond those just in the armpit and the local chest wall area as well.

Katherine:   

What about subtypes? How are they determined?

Dr. Gralow:   

The main way that we subtype breast cancer right now is based on the expression of estrogen and progesterone receptor, the two hormone receptors, and the HER2 receptor, the human epidermal growth factor receptor. So, to date, those are the most important features when we subtype, and so, a tumor can either express estrogen and progesterone receptor or not, and it can overexpress or amplify HER2 or not, and if you think that through, you can come up with four different major subtypes, in a way, based on estrogen receptor positive or negative and HER2 positive or negative.

When all three of those are negative, we call that triple negative breast cancer, and that’s about 18-20% of all breast cancers as diagnosed in the U.S. And then, when all three are positive, we sometimes call it triple positive, and the reason that we subtype is because we know that those different subsets act differently and that we have different drugs to treat them with, and we’ve got great drugs in the categories of hormone receptor positive and HER2 positive, and increasingly, some recently hope in a new drug approval or two in triple negative breast cancer as well.

Katherine:     

For a patient to get diagnosed, what are the essential tests?

Dr. Gralow:  

So, we’re talking about metastatic breast cancer here, and in the U.S., maybe up to 10% or slightly less of breast cancer is technically Stage 4 or metastatic at diagnosis. That means at the time we first found it in the breast, it had already spread beyond. So, an important thing that we’ll do with a newly diagnosed breast cancer is especially if there are a lot of lymph nodes are involved or the patient has symptoms that might say there’s something in the bone, liver, or lung is staging.

So, we’ll use scans – maybe a CAT scan, bone scan, or PET scan – and we will look at whether the disease has gone beyond the breast and the lymph nodes, and if so, where. So, maybe 8-10% of breast cancer diagnosed in the U.S. already has some evidence that it has spread beyond the breast, but the most common way that metastatic breast cancer happens is that a patient was diagnosed possibly years and years ago, treated in the early-stage setting, and now it comes back, and that is the most common presentation for metastatic breast cancer, and sometimes that can be due to symptoms.

As I said, if it comes back in the bone, maybe that’s bone pain. If it’s in the lung, it’s a cough. There are symptoms. Sometimes, it’s because we’ve done a blood test or something and we find some changes there.

And so, when a breast cancer has recurred, it’s really important to document that it’s really breast cancer coming back, first of all, and so, if we can, we generally want a biopsy, and we want to stick a needle in it if it’s safe to do, and look and verify that it looks like breast cancer, and also, it’s really important that we repeat all those receptors that we talked about from the beginning because it can change.

So, a cancer up front 10 years ago could have been positive for estrogen receptor, but the only cells that survived – mutated, changed – were estrogen receptor negative, so what comes back could be different. So, it’s really critical to get that biopsy, repeat the estrogen/progesterone receptor and HER2, and also, in an ideal world, now that it’s 2020 and we’re moving more toward genomics, to do a full genomic profile and look for other changes and mutations that could drive our therapeutic options.

So, staging, knowing where the cancer is, getting a good baseline by understanding where it is and how big it is so that we can follow it and hopefully see that it’s responding to treatment, and then, repeating all of the biology components so that we know what the best options are for treatment are really critical.

Katherine:  

Right. How can patients advocate for a precise breast cancer diagnosis, and why is that important?

Dr. Gralow:    

Well, all those things I just mentioned are key. Knowing exactly where it is so that we can monitor it – for example, if the cancer has come back in the bones, we would add what we call a bone modifying agent, a drug like zoledronic acid or denosumab – Zometa or – which can suppress bone destruction from the cancer, but if it’s not in the bone, we wouldn’t add that.

And, we want to have a good look everywhere so that we can see if it’s responding because sometimes, the tumor can respond differently in one area than another. Also, I think it’s really important to know what your treatment options are by doing that biopsy, getting a full panel, and looking at potentially hundreds of genes that could be mutated, deleted, or amplified so that we know what our treatment options are.

And, we’re not going to use all the treatment options up front, so it’s helpful for knowing that if this treatment doesn’t work or is too toxic, what are the second-line or third-line options? So, we make sure that there’s what we call good staging up front so we know where the cancer is, and then we make sure that we’ve looked at it as best we can in 2020 with all the genomics.

That would give us the best chance of being tailored – individualized – to the tumor. Sometimes, if we can’t biopsy it, like with a needle that would go into a liver spot, then increasingly, we’re looking at what we call liquid biopsies, and that can be drawing the blood and seeing if we can find parts of the tumor, whether it be the DNA or the RNA that’s floating around in the blood, and sometimes we can get that information out of the blood as well.

Katherine: 

All right. Dr. Gralow, when you meet with patients, what are some of the more common misconceptions that you hear related to diagnosis?

Dr. Gralow:  

Well, I think people do confuse – especially at an early diagnosis – that the metastases, the travel to the local lymph nodes, is not the same as a metastatic breast cancer, so we spend some time talking about how it’s still curable and not considered a distant metastasis if the lymph nodes are in the armpit or up above the collarbone, and so, that’s something that we spend some time talking about.

This whole term of “metastatic recurrence” – unfortunately, when you start looking online and get your information from Dr. Google, you read right away that it’s no longer curable, and in 2020, yes, that’s true. That’s probably the most specific statement that we can make. We are not going with curative intent, which means we treat for a defined amount of time, and then all the disease goes away, and we stop treatment, and then you go on with your life, and it never comes back. That would be cure.

But, I think it’s really important to point out that much of metastatic breast cancer can be highly treatable, and what we hope to do – and certainly, at least a subset of metastatic breast cancer – we want to convert it more to what we would call a chronic disease, and so, think of it more like hypertension, high blood pressure, or diabetes. These are diseases that we generally don’t cure with treatment, but that we can control with drug therapy, which sometimes has to be adjusted, and if we don’t control it, we can get some bad complications.

So, that’s not all metastatic breast cancer, unfortunately – we can’t convert all of it do something where we can use a therapy for a long time that keeps it in check and where you have a pretty good quality of life – but we’re hoping that more and more, we’re getting targeted therapies and more specific treatments to patients so that we can convert more patients to a more chronic kind of situation.

Katherine:

So, it’s something that patients live with.

Dr. Gralow:  

Right.

Katherine:  

Many people are confused about genetic testing. They often think that it relates to ancestry or physical traits like hair and eye color. What’s the role of genetic testing in breast cancer?

Dr. Gralow:    

Well, you can do genetic testing of the patient’s inheritance, which is how most people think of genetic testing, and that’s actually really important and increasingly important in metastatic breast cancer to do your own inheritance. Have you inherited a gene that was associated with how your cancer developed? Because now, we actually have a class of drugs called PARP inhibitors that are approved for tumors that have a BRCA1 or BRCA2 mutation with them. Most of those mutations were inherited, but not all. Sometimes they can develop as well.

So, now, when my patient – if she didn’t previously have genetic testing for an inherited risk for breast cancer either coming from mom or dad’s side of the family, a lot of people do have that up front, especially if they’re younger at diagnosis or they have a lot of family members with breast cancer. If she didn’t have that genetic testing done previously, at the time of the metastatic occurrence, I’m going to recommend that that be done because knowing if the cancer is associated with one of these DNA repair genes – BRCA1, BRCA2, some other genes – we have a new treatment option, which is an oral pill that actually is highly effective if the tumor has a mutation in one of these.

But, we can also – so, that’s genetic testing of the patient’s own DNA, but we can also do what we call genetic testing – or genomic testing, if you will – of the genes of the cancer. What were the changes in the DNA at the gene level that caused a normal breast cell over time to develop into a cancer cell that’s now growing without responding to our body’s checks and balances? So, what were those mutations, deletions, or amplifications in the tumor itself?

So, we’ve got the patient’s genetics, we’ve got the tumor’s genetics, and both of those come into play when we’re making our best treatment recommendations and trying to understand what the right approach is.

Katherine:       

How is testing administered?

Dr. Gralow: 

So, for our inherited testing, those gene changes can be found in every cell in the body, so we can do that from a simple blood test where we just look at the blood cells. We can actually do it with our sputum and with a cheek swab, even. You can get enough of the DNA from the inside of the mouth to do that.

For a tumor’s genetics, we need some of the tumor, so that’s either done with a biopsy into the metastatic site or, as I mentioned before, increasingly, we’re exploring the potential for a liquid biopsy – so, drawing some blood and then trying to find pieces of the tumor that are shed into the blood.

Katherine:      

What advances have there been in testing?

Dr. Gralow: 

Well, it used to be – just going back a couple of years ago – that we didn’t do a lot of this genetic testing or genomic profiling of the tumor because we didn’t have many – the term is an “actionable mutation.” So, if we found something, would we do something with it? Did we have a drug we could use to do it? But, more and more and more, even in breast cancer, we’re finding actionable mutations that would drive therapy.

For example, in estrogen receptor positive breast cancer, we have a new class of targeted therapies called PI 3-kinase inhibitors – a drug called alpelisib or Piqray was approved in the last couple of years in that category – and it only is effective in estrogen receptor positive breast cancer that has a mutation in the PI 3-kinase gene. So, that would be something we’re looking for in the tumor’s genes, and actually, we need to know that there’s a mutation to even get the drug approved for treatment because it doesn’t work if you don’t have that mutation.

Increasingly, we’re finding some changes that can happen in the estrogen receptor gene and the HER2 gene, interestingly, so that you can have estrogen receptor expressed on your tumor, but over time, that tumor might develop an estrogen receptor mutation so that it stops responding to certain drugs that target the estrogen receptor.

And so, that’s called an ESR1. That’s the name of the estrogen receptor gene – an ESR1 mutation – and that would tell me probably not going to respond as well to a drug in the class we call aromatase inhibitors, but might respond better to a drug in the class that we call the selective estrogen receptor degraders like fulvestrant or Faslodex, is the name of a drug in that class.

We’re also finding that you can have what we call activating mutations in HER2, and they can be present whether the tumor overexpresses HER2 or not, and we’ve got some ongoing clinical trials looking at if the tumor doesn’t have extra HER2 on its surface – so, it doesn’t have extra HER2 protein, but at the gene level, it’s got an activated HER2 gene – we can use certain types of HER2 therapy to treat it, and we’re testing that right now in clinical trials.

So, could we even use some HER2 drugs even though technically, the tumor would be classified as HER2 negative? So, fascinating increasing information that we’re understanding, and I also mentioned before we can inherit mutations in genes such as BRCA1 and 2, but fascinatingly, the tumor can acquire those mutations. Even if we didn’t inherit a mutation, we can see mutations in the BRCA1 and 2 gene – we call those somatic as opposed to germline mutations. So, “germline” means it’s in every cell in your body, but “somatic” means the tumor somehow acquired this over time.

And so, we’ve done – we just presented some very early results of a trial, and we’re expanding this trial, looking at if you didn’t inherit a BRCA1 or 2 mutation, so technically, you don’t qualify for a PARP inhibitor, but if the tumor acquired a mutation and we can prove that with testing the tumor’s DNA, then we have seen responses from these PARP inhibitors, so that opens up another whole class of treatments, and there are other DNA repair genes that actually may be qualified as well that we can inherit or that can be acquired by the tumor.

So, more and more, we’re doing this genomic profiling, and it is leading to results that would give us possible treatment options.

Katherine:  

Dr. Gralow, the goal of this program is to provide the confidence and tool for patients to advocate for the essential tests to get best care personalized to them. Are there specific tests that patients should make sure they have?

Dr. Gralow:  

Well, there are a lot of assays out there to do this genomic profiling or genetic testing of the tumor, so I don’t promote any one. Various institutions do it and do it well, various companies do it, but I think every metastatic patient should have the tumor looked at in this kind of profiling.

I also think every metastatic patient should advocate for having a biopsy of their cancer, and if a biopsy cannot be done safely in the recurrence, then see if they could get a liquid biopsy – have blood drawn to find it. So, I think that patients should be asking about this. Sometimes, insurance won’t always cover it, and so, my job as a treating physician is to advocate for that, to do an appeal.

More and more, because we have so many actionable mutations in breast cancer now, I’m not having insurance decline, but occasionally, it does, and then it’s our job as the healthcare providers to make the case that yes, this will impact the patient, and yes, it should be covered by insurance.

Katherine:  

You’ve been referring to a number of terms. Patients may have heard the BRCA or “braca” that relate to breast cancer in genetics. Would you give us an overview of common mutations in breast cancer?

Dr. Gralow:    

So, of the mutations that we can inherit, the first two that were discovered were BRCA1 and BRCA2, and for all breast cancer – not just metastatic, but all breast cancer – we think that maybe 5-10% of breast cancer is the direct result of the inheritance of a strong gene that gives you a high – not 100%, but a high likelihood of developing breast cancer.

So, for BRCA1 and 2, these two genes are associated predominantly with breast and ovarian cancer, and if you live out your normal lifespan, you could have up to a 75-80% chance of getting one of those two cancers, and breast cancer being more common. Also, some association with some other cancers including, interestingly, prostate cancer, which we’re learning more about.

So, BRCA1 and 2 are the most common, and they tend to be found – because they have such a high association with the risk of breast and ovarian cancer, they tend to be found in families that have a lot of other breast cancers, and also breast and ovarian cancer presenting at a younger age. So, you’ve inherited a gene that leads to a high predisposition, and the cancer occurs earlier.

So, whereas the average age of diagnosis of breast cancer in the U.S. is 61-62 most commonly, in a patient who’s inherited a BRCA1 or 2 gene mutation, it’s closer to 40-42 – so, a lot younger. And then, there are a variety of other genes that can be inherited that are either much less common or have a weaker link. So, for example, there are genes called CHEK2 or PALB2, ATM, P53 – I just mention that because some of the listeners will potentially have one of those mutations or have heard it. Those are either rarer or they’re associated with a weaker chance of getting cancer.

So, those might be more commonly found in a family that doesn’t have a lot of cancer in it because a carrier – the mother or the father – and their other relatives would have maybe only a 30% chance of getting breast cancer in some cases. So, there would be a lot of carriers who don’t get cancer.

So, as I mentioned earlier, I think it’s really important – especially right now in metastatic breast cancer – that pretty much everybody, even if you didn’t have a strong family history, even if you weren’t diagnosed at a young age, get tested because if we find one of these inherited mutations, we now have some additional treatment options, especially right now, approved for BRCA1 or 2, but clinical trials going on for many of these other genes.

Katherine: 

How do these mutations affect disease progression and prognosis?

Dr. Gralow:          

So, most of the genes I’ve mentioned – in their normal state, they’re critical, actually. They’re called DNA repair genes, and their job in our life is when we accidentally make a mistake when we’re replicating our DNA and two cells are dividing, if there’s a mistake in the DNA, they go in and repair it. And, we’ve got all kinds of mechanisms to try to prevent mutations from happening as cells divide, and BRCA1 and 2 are a key part of that, and so, they’re fixing it.

So, if you inherit a mutation in one of those genes, you still have some ability to repair any routine mistakes that are being made, but over time, you have less ability, and then, if you get a cancer that has a deficiency in BRCA1 or 2, those cancers can be more sensitive to certain kinds of chemotherapy that affects DNA repair.

So, for example a class of chemotherapy agents called the platinum drugs – carboplatin and cisplatin – may be more effective in BRCA1- or 2-mutated cancers, also more generally in triple negative breast cancer because they can be more similar to BRCA1-mutated cancers in a lot of ways.

So, to go back to your original question, once a cancer has developed in a patient who has a BRCA1 or 2 mutation, we treat that cancer for what it is. So, it might have developed estrogen – have estrogen receptor on the surface or HER2, so we treat it as the subtype that developed, and actually, the chance of cure is just the same for BRCA1-associated breast cancer as it would be for one that doesn’t have a BRCA.

But, the chance of getting a second breast cancer – a totally new breast cancer – would be higher unless you chose to remove both of your breasts and the bulk of your breast tissue. So, decisions like surgery – if you had a known BRCA1 mutation, we’d treat the cancer you have now aggressively and for cure, but when you talk about your surgery options, we’d say doing more aggressive surgery, like removing both of your breasts – that’s not gonna improve your chance of surviving the cancer you have now, but it will markedly reduce the chance of getting a second breast cancer.

So, you could consider that as an option for surgery – not to improve your chance of this cancer, but to reduce the chance of another breast cancer. So, your surgery decisions might be impacted by knowing your BRCA1 or 2 mutation. And then, clearly, if you had metastatic breast cancer, knowing if you had the option of a PARP inhibitor, one of the drugs in that class could be – you could have a different treatment option for drug therapy.

Katherine: 

Well, Dr. Gralow, what other factors should be taken into consideration with a treatment route?

Dr. Gralow:   

I always like to think of the treatment decision as relying on three factors, and the first relates to the tumor factor, the cancer factor.

So, we talked a lot about the biology, the estrogen receptor, the HER2, the genomic profiling. So, that’s critical, but there are two other components that we need to really strongly consider when trying to devise the right treatment regimen. One of those is patient factors, and not just the patient’s genetics, but are they pre- or post-menopausal?

What is the age? Where are they in life? Are they young with young kids? Are they working, and is that an important priority for them? Are they older and with grandchildren, and they don’t need to work? What is it that would be critical? What are the patient’s priorities here, and what are their fears, what are the things they would – what would be really important as we plan a regimen? And so, the patient factors which would be patient priorities and where they are in life right now.

And then, there’s factors related to the treatment itself, which would include not just how effective it is, but – and, this is really important when trying to decide regimens – what are the side effects of a regimen? For some patients, hair loss is a big deal, and we can put it off as long as possible – maybe choosing the first couple regimens don’t cause hair loss sometimes.

But, for other people, that doesn’t matter to them. For some, we have oral – some regimens, and that could keep them out of the infusion room, and others actually – I’ve had patients who actually like coming into the infusion room regularly so that they can review the side effects and get the reassurance provided by it. So, we’ve got different route of administration of the drugs, different side effects. If you already had, for example, a neuropathy – a numbness/tingling of fingers and toes – from treatment that you might have gotten for early-stage disease, we’d probably want to avoid drugs where that’s their major side effect in the metastatic setting and that would increase that even further.

We’ve got some drugs that cause a lot of toxicity to our GI system – nausea, vomiting, or diarrhea – and other drugs that don’t. And so, understanding what symptoms the patient already has and actually tailoring the treatment based on some of the side effects of the drug could also be done, as well as how they’re administered. So, again, patient factors, tumor factors, and then, factors related to the treatment itself all come into play when we make decisions.

Katherine:    

There have been so many advances in breast cancer research. What are you excited about in research right now?

Dr. Gralow: 

Well, every single drug that’s been approved, every single new regimen that’s been approved in breast cancer is the direct result of clinical trials, and this is a major part of my career, is to help patients get access to clinical trials and run important clinical trials that could lead to new discoveries – is this regimen better? What’s the toxicity?

Because until we have a cure for breast cancer, we need to do better, and we need to research better treatment options. So, doing trials, having access to clinical trials where you can participate, help move the science forward is key.

I think where we’re moving with breast cancer is the more we’re understanding the patient and the tumor, the more we’re realizing every single breast cancer is different, actually, and whereas when I started my training 20-plus years ago, breast cancer was breast cancer – we weren’t even using HER2 yet, we were just learning how to use estrogen receptor, and we kind of treated everything the same – now, we’re subsetting, and subsetting, and subsetting. Even in triple negative breast cancer now, which is about 18-20% of breast cancer, we’re subsetting.

Does that triple negative breast cancer have PD-L1, which is associated with being able to get immunotherapy drugs? Does it express androgen receptor? Because sometimes, even a breast cancer that doesn’t have estrogen or progesterone receptor can express the androgen receptor, like prostate cancer, and we can use some prostate cancer drugs. So, even triple negative breast cancer we’re subsetting and subsetting, and could that triple negative breast cancer be associated with a BRCA1 or 2 mutation, and then we can use the PARP inhibitors?

So, I’m actually really excited about that we’re learning more and more, and subsetting, and not treating breast cancer as one size fits all, and if we can better tailor the treatments to the patient and the tumor, that we are going to get to the point where I can tell my patients yes, we can get cures in metastatic breast cancer.

Katherine:    

For patients who may be hesitant to speak up – to advocate for themselves in the process – I’m gonna start again. For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:   

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re gonna lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:     

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:    

Thank you, Katherine.

Katherine:       

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

Notable News July 2020

It seems like everyone is talking about the Broadway musical Hamilton this month, so let’s take a cue from A.Ham himself and rise up because sitting is proving, yet again, to not be so good for us. Also, not good yet again? Covid-19. It’s especially not good for people with cancer. What is good? Advances in cancer treatment and a blood test that delivers super early cancer detection.

PanSeer

PanSeer is a non-invasive blood test that can detect five types of cancer up to four years earlier than current methods of diagnosis, reports theguardian.com. The blood test is not a cancer predictor, but instead is finding cancers before they cause symptoms or are detected through other screening methods. The test is not able to indicate the type of cancer a patient has, but, with further research, shows promise for early, non-invasive diagnosis. You can learn more here and here.

Photodynamic Therapies

Also showing promise is research regarding skin cancer treatments that could be used to treat other types of cancer, reports medicalxpress.com. Photodynamic therapies (PDT) which use light to treat skin cancers by destroying cancerous and precancerous cells could possibly be used to treat other types of cancers thanks to the development of silica nanocapsules that can be used to convert near-infrared light to visible light. Right now, PDT only works if the tumors are on or under the skin because it works with visible light to activate medications that are injected into unhealthy tissue. However, since near-infrared light can get deeper into the tissues and then be converted into visible light by the silica nanocapsules, the treatment becomes more versatile. Learn more about the process here.

Good Diet Improves Treatment

Speaking of versatile, changing your diet could really help during breast cancer treatment, says cancernetwork.com. Recently reported study findings show that a fasting mimicking diet is safe and effective during chemotherapy in women with early breast cancer. The diet appears to have a positive effect on how well the cancer treatment works, and also reduces the side effects caused by the treatment. Basically, the research found that when fasting, there were less nutrients and insulin for the healthy cells to address, indicating the body should conserve energy and put healthy cells into maintenance mode. Chemotherapy targets rapidly dividing cells, so instead of attacking the less-active healthy cells, it would easily find the malignant cells which don’t pick up on body signals and continue to divide despite the fast. Fasting mimicking diets are low-calorie, low-protein, low-carbohydrate, high-fat diet plans that trick your body into thinking it is fasting. You can learn more about fasting mimicking diets and breast cancer treatments here and here.

Cancer and COVID-19

The sooner we can get a treatment for Covid-19, the better, but in the meantime, cancer patients need to be especially diligent about avoiding the virus. The longer you have had cancer, the higher your risk of a severe Covid-19 infection, says technologynetworks.com. Research has found that people who were diagnosed with cancer 2 years or more ago are more likely to have a severe Covid-19 infection. While there are not a lot of studies regarding cancer patients and Covid-19, one study of 156 cancer patients with confirmed Covid-19 infection showed that 22 percent of the patients died from the infection, and those who had been diagnosed two years or more prior to infection were at a higher risk of dying. Symptoms of Covid-19 can mimic cancer symptoms or the affects of cancer treatments, so it can be hard to diagnose Covid-19 in cancer patients, which could result in more severe infections or higher death rates. Learn more about the study here.

Activity Decreases Cancer Risk

Avoiding exposure to the coronavirus may keep some of us out of the gym, but we still need to get moving, otherwise we increase our risk of dying from cancer, reports medicalnewstoday.com. In a study where patient activity level was tracked through hip monitors, researchers found that the amount of time people are sedentary puts them at a higher risk for dying from cancer. Researchers also found that being physically active for 30 minutes a day decreased the risk of dying from cancer. Vigorous exercise decreased the risk 31 percent and light exercise decreased the risk 8 percent. The increased activity doesn’t have to be all at once, either. It can be as simple as standing for five minutes every hour while you are at work. Instead of thinking you must get out there and exercise for thirty minutes at a time, think, ‘sit less, move more,’ throughout your day. Find more information here.

Coverage of Breast Cancer Screening and Prevention Services

This was originally published by The Kaiser Family Foundation on September 26, 2019 here.


Among women in the United States, breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer death. In 2016, an estimated 3.5 million women in the U.S. were living with breast cancer. The Affordable Care Act (ACA) and many state laws have provisions that assure that most women with private insurance, Medicaid, and Medicare have coverage for breast cancer screening services. This typically includes screening mammography for the general population of women, but also can include genetic testing and preventive medications for high-risk women over the age of 35. This factsheet discusses breast cancer screening and prevention services, and reviews the scope of private and public insurance coverage, as well as access to those services for women in the US.

Breast Cancer in the United States

Breast cancer is the most commonly diagnosed cancer among women in the U.S. and makes up 15% of all new cancer diagnoses. Approximately 1 in 8 women (12.8%) will be diagnosed with breast cancer during their lifetime.

  • In 2019 there will be an estimated 268,600 new cases of female breast cancer and 41,760 deaths attributable to breast cancer.
  • Breast cancer is most commonly diagnosed among middle-aged and older women, with 70% of new cases diagnosed among women 55 and older (Figure 1).

Figure 1: Seven in Ten Cases of Breast Cancer are Diagnosed Among Women 55 and Older

  • Most breast cancers are diagnosed at an early stage. Sixty-two percent of breast cancers diagnosed are localized, meaning they are found only in the part of the body they started, while 6% of cases diagnosed have metastasized, meaning the cancer has spread to other regions of the body.
  • Risk factors for breast cancer include but are not limited to: a family history of breast cancer, genetic predispositions, personal history with breast cancer, breast density, obesity, drinking alcohol, early menstruation, delayed childbearing and having fewer children.
  • In the U.S., while white women have the highest incidence of breast cancer, black women have higher breast cancer mortality rates (Figure 2). These disparities are likely attributable to a combination of factors, such as differences in stage at diagnoses, tumor biology, and genetics, as well as disparities in access to screening, follow up care and treatment.

Figure 2: White Women Have the Highest Incidence of Breast Cancer, but Mortality Rates are Higher Among Black Women

  • Although very rare, men can develop breast cancer. In 2019, there will be approximately 2,670 cases of male breast cancer diagnosed and 500 deaths.

Coverage for Breast Cancer Screening and Prevention

While several health organizations issue guidelines for breast cancer screening and prevention, private insurance coverage of preventive services under the ACA is governed by recommendations from the United States Preventive Services Task Force (USPSTF) and the Health Resources and Services Administration (HRSA). Under these guidelines, private group and individual insurance plans and state Medicaid expansion programs must cover the following breast cancer screening and prevention services at no cost to the consumer: 1) screening mammography at least every 2 years and as frequently as once a year for women ages 40 to 74 with average-risk for breast cancer; 2) genetic counseling and testing for mutation of the BRCA1 and BRCA2 genes in some women with a personal or family history of breast, ovarian, fallopian tube, or peritoneal cancer; 3) preventive medication for some women with elevated risk of breast cancer and at low risk for adverse medication effects (Table 1). Some medical professionals recommend other services, such as screening MRIs for women at higher risk for breast cancer, but these services are not currently subject to the ACA’s preventive services coverage requirement.

Table 1:  Breast Cancer Preventive Services Covered Without Cost-Sharing
Preventive Service Target Population Recommendation
Breast Cancer Screening
(HRSA & USPSTF)
Women ages 40 to 74 with average-risk for breast cancer (HRSA)Women age 50-74 (USPSTF) Screening mammography at least every 2 years and as frequently as once a yearScreening mammography every 2 years
BRCA- Related Cancer: Risk Assessment, Genetic Counseling and Genetic Testing (USPSTF) Women with a personal history or family history of breast, ovarian, tubal, or peritoneal cancer or ancestry associated with BRCA 1 and/or 2 gene mutation Primary care clinicians should assess women with a personal or family history of breast, ovarian, tubal, or peritoneal cancer or who have an ancestry associated with breast cancer susceptibility 1 and 2 (BRCA1/2) gene mutations with an appropriate brief familial risk assessment tool. Women with a positive result on the risk assessment tool should receive genetic counseling and, if indicated after counseling, genetic testing.
Breast Cancer: Medications for Risk Reduction (USPSTF) Women age 35+ at increased risk for breast cancer Clinicians should offer to prescribe risk reducing medications, such as tamoxifen, raloxifene, or aromatase inhibitors, to women who are at increased risk for breast cancer and at low risk for adverse medication effect

NOTE: Women with family members with breast, ovarian, tubal, or peritoneal cancer should be screened with one of several screening tools designed to identify a family history that may be associated with an increased risk of breast cancer.
SOURCE: Kaiser Family Foundation. Preventive Services Tracker. As of September 2019.

Mammography

  • Mammography is a low-dose x-ray procedure that provide images of the internal structures of the breast and is the most common screening test for breast cancer.
  • Current HRSA guidelines, which define no-cost coverage standards for private insurance, recommend biennial screening mammography to start no earlier than age 40 and no later than age 50 for average-risk women and continue through at least age 74, while the USPSTF breast cancer screening guidelines recommend biennial screening mammography for women aged 50 to 74, and states that starting mammography screening before age 50 should be an individual decision based on preference and patient values. The USPSTF also concludes that there is insufficient evidence to assess the benefits and harms of screening mammography for women 75 years and older.
  • In 2015, 58% of women ages 40-49 and 72% of women ages 50-74 reported having had a mammogram in the past two years (Figure 3). Overall, between 2000 and 2015, mammography rates stayed relatively stable. Black women (70%) and women with some college education and more (71%) have the highest mammography rates (Appendix Table 1).

Figure 3: Mammography Use in the United States by Age Group and Insurance Coverage

  • Mammography rates vary by state. Ohio and Kansas reported the highest mammography rates (81%) in the nation, while Connecticut reported the lowest rates at 61% (Figure 4 & Appendix Table 2).

Figure 4: Mammography Rates Vary Across States

  • Research shows that women with insurance coverage are more likely to report having had a mammogram in the past two years. In 2015, only 30% of uninsured women ages 40 to 64 reported having had a mammogram in the past two years compared to 72% of privately insured women and 58% of women with Medicaid coverage (Figure 3).
  • Most professional guidelines suggest starting mammography after age 40, but 47% of women believe women without a family history of breast cancer should begin mammography screening before age 40 (Figure 5).

Figure 5: Almost Half of Women Think Women Without Family History of Breast Cancer Should Begin Mammography Screening Before Age 40

Genetic Testing and Screening for BRCA1/BRCA2 Mutations

  • Mutations to BRCA1 and BRCA2, tumor suppressor genes, increase the risk of female breast and ovarian cancers, as well as Fallopian tube, peritoneum, pancreatic, and skin cancers. While almost 13% of women in the general population will develop breast cancer at some point in their lives, 72% of women who have inherited the BRCA1 mutation and 69% of women who have inherited the BRCA2 mutation will develop breast cancer by the age of 80.
  • Factors associated with an increased likelihood of having a harmful BRCA1 or BRCA2 mutation include: breast cancer diagnoses before age 50, cancer in both breasts, both breast and ovarian cancers in the same individual, multiple cases of breast cancers, two or more BRCA1 or BRCA2 related cancer deaths in the family, cases of male breast cancer, and being of Ashkenazi Jewish descent.
  • Currently, the USPSTF recommends that primary care providers screen women with a personal or family history of breast, ovarian, tubal, or peritoneal cancers or have an ancestry associated with BRCA 1/ 2 gene mutations with one of several screening tools for an increased risk in BRCA genetic mutations. The USPSTF recommends that women with positive screenings receive genetic counseling and if necessary BRCA genetic testing.

Preventive Medication

  • The use of medications to help reduce the risk of or delay the onset of cancer is called chemoprevention. The drugs tamoxifen, raloxifene, and aromatase inhibitors reduce primary breast cancer risk in postmenopausal women.
  • The USPSTF recommends that clinicians should discuss and offer to prescribe these risk-reducing medications to some women 35 and older who are at an increased risk for breast cancer and at low-risk for adverse medication effects. Women who are not at an increased risk for breast cancer should not take these medications.

Coverage and Utilization of Services

Most women with public and private insurance have coverage for breast cancer screening services, but the scope of coverage can differ based on the type of insurance plan, how they qualify for Medicaid, and in the case of Medicare, where they live. While there are programs to assist uninsured and underserved women, these programs only reach a fraction of eligible women.

  • Private Individual and Group Insurance Plans—The ACA requires most private group and individual insurance plans, including most employer plans, to cover all services rated by the USPSTF with an “A” or “B” without consumer cost-sharing, as well as preventive services for women recommended by HRSA. Plans must cover the full cost of mammograms starting at age 40, genetic screening for high-risk women, and breast cancer preventive medication for high risk women under this policy.
  • Medicaid— Women who qualify for Medicaid based on their state’s decision to expand Medicaid under the ACA are entitled to the same screening and preventive services as women who are covered by private insurance. For women who qualify based on other traditional eligibility pathways, breast cancer screening and preventive services are considered “optional” under traditional Medicaid programs and the scope of coverage is determined by the state. A 2015 state survey of Medicaid programs, however, found that most states cover breast cancer screening and prevention services under expansion and traditional eligibility pathways.
  • Medicare—Medicare Part B covers annual screening mammograms at no-cost for women 40 and over. Coverage for BRCA genetic testing is not required nationally, but may be covered in some regions based on local coverage determinations. Women enrolled in a Medicare Part D drug plan who are at high risk for breast cancer may have coverage for chemoprevention drugs, but there is no requirement for Part D plans to cover these drugs without cost sharing.
  • TRICARE—TRICARE, the public program for military personnel and dependents, covers screening mammography for women 40 and older, BRCA genetic counseling, and chemoprevention, but is not required to offer coverage without cost-sharing. Out-of-pocket costs for consumers vary by an individual’s specific level of TRICARE coverage and active duty status.
  • The National Breast and Cervical Cancer Early Detection Program (NBCCEDP)—The NBCCEDP helps low-income, uninsured, and underinsured women gain access to breast and cervical cancer screening, diagnostic services, and referrals to treatment. Uninsured and underinsured women are eligible for the program if they are at or below 250% Federal Poverty Level (FPL) and are between the ages of 40 to 64 for breast cancer screenings. Although about 10% of U.S. women are eligible for the NBCCEDP breast cancer screenings, the program only serves about 11% of those who are eligible. In 2017 almost 192,000 women received NBCCEDP funded mammograms.
  • The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA)—Passed in 2000, the BCCPTA gives states the option to extend Medicaid coverage to uninsured women under 65 who are diagnosed with breast or cervical cancer through NBCCEDP screening programs. Although all states adopted this option, states have different eligibility requirements. In 20 states and DC, women are only eligible for Medicaid coverage if their screening and diagnosis was paid for by NBCEEDP funds; in 14 states women are eligible for Medicaid if their provider receives NBCEEDP funds or the services provided fell within the scope of the NBCEEDP grant; and in 16 states women are eligible for Medicaid coverage for treatment regardless of where they were screened as long as they meet the other eligibility criteria. In 2013, almost 57,000 uninsured women with a breast cancer diagnosis gained Medicaid coverage through the BCCPTA.
  • While many women now receive no-cost coverage for mammography services, women who get diagnostic mammograms, those who get preventive services out-of-network or who are in grand-fathered plans may be subject to co-payments, cost-sharing or deductibles. In the 2017 Kaiser Women’s Health Survey, 16% of women with private insurance reported paying out-of-pocket costs for a mammogram, compared to 3% of women with Medicaid coverage and 11% of uninsured women.

Appendix Table 1

Appendix Table 2

Appendix Table 2: Mammography Rates by State, 2014-2016


Percent of women ages 40 and older who report having had a mammogram within the past 2 years

State All Women White Black Hispanic Asian & Native
Hawaiian or Pacific Islander
American Indian/
Alaska Native
United States 73% 73% 78% 72% 72% 67%
Alabama 73% 71% 79% n/a n/a 68%
Alaska 79% 79% 83% 70% n/a n/a
Arizona 75% 71% 79% 67% n/a n/a
Arkansas 76% 75% 80% 77% 77% n/a
California 75% 73% 81% 60% 72% n/a
Colorado 78% 76% n/a 79% 79% n/a
Connecticut 61% 62% n/a 47% n/a n/a
Delaware 73% 73% 79% 72% n/a n/a
DC 67% 67% 73% 69% n/a n/a
Florida 74% 74% 80% 73% n/a n/a
Georgia 63% 62% n/a n/a n/a 68%
Hawaii 71% 72% 74% 57% n/a 63%
Idaho 74% 74% 76% n/a n/a n/a
Illinois 74% 72% 78% 73% n/a n/a
Indiana 77% 77% n/a n/a n/a 60%
Iowa 78% 77% 84% 77% 69% 71%
Kansas 81% 81% 81% 83% 82% n/a
Kentucky 75% 75% 79% 72% 78% n/a
Louisiana 76% 77% 75% 72% 59% 69%
Maine 68% 67% 71% n/a n/a n/a
Maryland 69% 68% 77% 79% n/a n/a
Massachusetts 68% 68% n/a 54% n/a 66%
Michigan 69% 70% 70% 55% n/a 56%
Minnesota 68% 67% 69% 70% 70% n/a
Mississippi 78% 78% n/a n/a n/a n/a
Missouri 75% 74% 80% 79% 71% n/a
Montana 65% 65% n/a 66% n/a 64%
Nebraska 74% 74% 77% 79% 67% 63%
Nevada 76% 76% 78% 62% n/a 71%
New Hampshire 72% 73% n/a n/a n/a 67%
New Jersey 73% 72% 78% 70% n/a 88%
New Mexico 70% 70% 76% 67% 61% 63%
New York 68% 67% 70% 62% n/a 72%
North Carolina 69% 70% n/a 62% n/a n/a
North Dakota 72% 72% 76% 69% n/a n/a
Ohio 81% 81% 75% 80% n/a n/a
Oklahoma 72% 71% 77% 58% n/a n/a
Oregon 75% 75% n/a n/a n/a 71%
Pennsylvania 72% 72% 78% n/a n/a n/a
Rhode Island 69% 69% 72% 66% 73% 64%
South Carolina 67% 68% n/a 61% n/a n/a
South Dakota 66% 66% 72% n/a n/a n/a
Tennessee 73% 73% n/a n/a n/a n/a
Texas 75% 75% 84% 70% 61% n/a
Utah 71% 71% 75% 64% 73% 62%
Vermont 72% 72% 75% n/a n/a n/a
Virginia 75% 76% 76% n/a n/a n/a
Washington 63% 64% n/a 60% n/a n/a
West Virginia 76% 77% 83% 74% 76% n/a
Wisconsin 64% 67% n/a 74% 64% n/a
Wyoming 79% n/a n/a 79% n/a n/a

Breast Cancer Treatment and Side Effects

This was originally published by breastcancer.org here.


In recent years, there’s been an explosion of life-saving treatment advances against breast cancer, bringing new hope and excitement. Instead of only one or two options, today there’s an overwhelming menu of treatment choices that fight the complex mix of cells in each individual cancer. The decisions — surgery, then perhaps radiation, hormonal (anti-estrogen) therapy, and/or chemotherapy — can feel overwhelming.

Breastcancer.org can help you understand your cancer stage and appropriate options, so you and your doctors can arrive at the best treatment plan for YOU.

In the following pages of the Treatment and Side Effects section, you can learn about:

  • Planning Your Treatment: What types of treatment are available, the most likely sequence of treatments, treatment options by cancer stage, and fitting treatment into your schedule.
  • Getting a Second Opinion: Reasons for getting a second opinion about your treatment plan, how to go about getting one, and what to do once you’ve got it.
  • Surgery: Breast-conserving surgery (lumpectomy), mastectomy, and lymph node dissection, and what to expect from each. Also included: Prophylactic surgery and breast reconstruction.
  • Chemotherapy: How chemotherapy works, who should get it, different types and combinations, and side effects and how to manage them.
  • Radiation Therapy: How radiation therapy works, who it’s for, advantages, side effects, and what to expect when you get it.
  • Hormonal Therapy: The link between hormones and breast cancer and how different groups of drugs — including ERDs, SERMs, and aromatase inhibitors — can affect that link. Also covered: Side effects of hormonal therapies.
  • Targeted Therapy: How different drugs work, who should get them, how they’re given, side effects, and major studies.
  • Immunotherapy: What is immunotherapy, different types of immunotherapy, and who it’s for.
  • Complementary and Holistic Medicine: How complementary medicine techniques such as acupuncture, meditation, and yoga could be a helpful addition to your regular medical treatment. Includes research on complementary techniques and ways to find qualified practitioners.
  • Drugs for Treatment and Risk Reduction: A reference list of drugs used to treat and reduce the risk of breast cancer, including how they work, to whom they are typically given, and side effects.
  • Treatments for Pain: Ways to treat cancer- and treatment-related pain, including types of medications and tips on talking to your doctors about pain.
  • Treatment Side Effects: A reference list of side effects and ways to manage them.
  • Lymphedema: All about lymphedema, including who is at risk, what to watch out for, how to reduce risk of lymphedema flare-ups, and how to find a lymphedema therapist.
  • Clinical Trials: What clinical trials are and how they work, why they’re important, and how to find trials that may be appropriate for you.

A New Standard of Care for HER2-Positive Metastatic Breast Cancer?

This podcast was originally published by Dr. Rashmi Murthy on December 11, 2019 on breastcancer.org here.


Dr. Rashmi Murthy, assistant professor of breast medical oncology at the University of Texas MD Anderson Cancer Center in Houston, discusses the results of the HER2CLIMB study that she presented at the 2019 San Antonio Breast Cancer Symposium showing that the experimental medicine tucatinib offers benefits to people diagnosed with HER2-positive metastatic breast cancer and may be a new standard of care.

Listen to the episode to hear Dr. Murthy explain:

  • A summary of the study results
  • Why this study included people with brain metastases
  • The side effects of tucatinib
  • Why she thinks the results are practice changing

5 Things Newly Diagnosed Breast Cancer Patients Should Know

This was originally published by Cynthia Demarco on April 19, 2019 on MD Anderson Cancer Center here.


If you’ve just received a breast cancer diagnosis, you probably have a lot of questions: What type of breast cancer do I have? How advanced is it? Do I qualify for any clinical trials? Can my doctor provide the treatment I need?

Before you start making treatment plans and scheduling appointments, here are five things to know.

Get an accurate diagnosis before starting treatment

Not all breast cancers are the same, so it’s important to get an accurate diagnosis right from the start. This is particularly true if you have a rare or very aggressive form of the disease, such as inflammatory or triple-negative breast cancer.

That’s because the type of breast cancer, as well as its stage and location, can determine the types of treatment you’ll be offered, as well as those you’re not eligible for.

“We offer precise treatments based on precise diagnoses,” says Lavinia Middleton, M.D. “That’s why I believe everyone should get a second opinion. A second opinion can be a game-changer. About 25% of our patients will see a change in their diagnosis.”

Where you go first for breast cancer treatment matters

All patients who come to MD Anderson will have their diagnoses confirmed by our doctors. This ensures that your cancer is both correctly identified and accurately staged — two crucial steps in determining which treatment plans you’ll be offered.

“Your first shot is your best shot at beating cancer,” says Makesha Miggins, M.D. “So, when patients come to us after they’ve already been elsewhere, their cancer treatment is often more challenging. That’s why I tell people to come to MD Anderson first.”

“If my cancer had been just a little more advanced, it would have been considered stage IV, and my care would have been palliative instead of curative,” adds Jenée Bobbora, an inflammatory breast cancer survivor. “But my doctor insisted that my cancer was at stage IIIc, not IV, so my treatment included chemotherapy, a double mastectomy and radiation. And I’ve shown no evidence of disease since 2003.”

Seek out the experts for your breast cancer diagnosis and treatment

It’s also critical to choose a cancer center with extensive experience in treating your particular type of breast cancer.

MD Anderson sees thousands of breast cancer patients annually, and has entire teams of specialists focused on specific types of breast cancer, such as triple-negative and hereditary cancers.

“Not only can we identify rare types of cancer with confidence, we can also keep women from having invasive diagnostic procedures for conditions that are not cancer,” says Therese Bevers, M.D.

“Breast cancer can have so many different variables,” adds Kelly Hunt, M.D. “And each one influences our treatment recommendations, because each one can significantly impact a patient’s response to different therapies. It’s critical to know these things before leaping in, because often by doing chemotherapy or targeted therapy first, we’re able to shrink the tumor and eradicate cancer in the lymph nodes involved. That means we can do less surgery and still have excellent long-term results.”

Consider clinical trials for your breast cancer treatment

Clinical trial options exist for virtually every type and stage of breast cancer. But some clinical trials for breast cancer are limited to patients who have not yet begun treatment. That’s why it’s important to discuss your options with your physician as early as possible.

Over the past few years, clinical trials at MD Anderson have allowed our breast cancer patients to avoid double mastectomieshave tumors removed painlessly without general anesthesia, and explore more personalized treatment options.

“My trial was unique because I was able to start with traditional chemotherapy and move on to other treatments only if that didn’t work,” says breast cancer survivor Barbara Lewis, of the immunotherapy clinical trial she participated in. “Only seven months after diagnosis, there were no traces of cancer in my body. That’s about the best result you can get.”

Make multidisciplinary care mandatory

No matter what type of breast cancer you have, it’s crucial to seek treatment at a cancer center that offers multidisciplinary care. This approach, which was pioneered here at MD Anderson, brings together all of the specialists you’ll need for your care — such as oncologists, surgeons, radiation oncologists, etc. —  to formulate your treatment plan.

Coordinating patient care as a team ensures that every aspect of an individual’s situation is taken into account from the start. It also makes it easier for your care team to adapt and make changes to your treatment as it evolves.

“It’s all about preserving options,” Hunt says. “I see patients all the time who were treated elsewhere with surgery first, when that might not have been the best approach. Now, they need more surgery or other treatments. And they’re painted into a corner, because they have fewer options. Our comprehensive approach means patients don’t have to go through multiple procedures to get the best results.”

Multidisciplinary care also gives patients easy access to any additional support services they might need, such as social work counselorsdietitians, physical therapists, lymphedema specialists and support groups.

“My gynecologist gave me the name of three Houston oncologists to choose from, but it was up to me to check them out,” adds Helen Vollmer, on the challenging start to her breast cancer journey. But once she got to MD Anderson’s Breast Multi-Team Clinic, “It was all confined to one, incredibly caring place with a team who talked to each other and, more importantly, to me.”

Examining the Link Between Gestational Diabetes and Breast Cancer

Approximately 12% of all U.S. women will develop invasive breast cancer during the course of their lives. There are a number of common risk factors associated with breast cancer, such as excessive alcohol consumption, obesity, genetic mutations like BRCA1 and BRCA2, and a family history of breast cancer.  In recent years, the link between diabetes, and particularly gestational diabetes, and cancer has been examined more closely to determine whether this group of women are especially at risk. A better understanding of gestational diabetes and its long-term effects make it significantly easier to understand its link to breast cancer.

What exactly is gestational diabetes?

Gestational diabetes develops during pregnancy and can, when untreated, cause health complications for mother and baby. When a woman has gestational diabetes she will display high blood sugar levels that typically return to normal after the pregnancy. Although any complication during pregnancy can be alarming, it is important to note that gestational diabetes can generally easily be controlled through a healthy diet, regular exercise, and in extreme cases, medication. While gestational diabetes does not necessarily result in serious complications, it is important to be aware of the risks for both mom and baby.

The link between gestational diabetes and breast cancer

Although women with gestational diabetes do not present an increased risk of breast cancer according to studies that have been conducted, it does increase their risk of contracting type 2 diabetes later on. In fact, up to 10% of all women who had gestational diabetes will develop type 2 diabetes according to the National Institutes of Health. This can occur anywhere from within a few weeks after delivery to months or even years later.

Type 2 diabetes proven to increase breast cancer risk

The risk for developing breast cancer is significantly higher among women with type 2 diabetes according to findings published in Diabetes Care. Postmenopausal women above the age of 50 are most at risk with a 27% increased risk of breast cancer. Type 2 diabetes triggers a number of changes in the body such as high insulin level, high glucose levels, and increased inflammation that may increase breast cancer risk. The connection between type 2 diabetes and breast cancer may also be a two-way street as breast cancer survivors could be at an increased risk of developing diabetes following chemotherapy.

Despite gestational diabetes not having a direct impact on breast cancer risk it can, in a more indirect way, increase the risk. By following a healthy lifestyle after a gestational diabetes diagnoses it is possible to reduce the risk of type 2 diabetes later in life which has directly been linked to the onset of breast cancer.

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