Tag Archive for: breast cancer awareness
Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know.
Hesitant to Join a Breast Cancer Clinical Trial? What You Should Know. from Patient Empowerment Network on Vimeo.
What do breast cancer patients need to know about clinical trials? Breast cancer expert Dr. Adrienne Waks addresses common concerns and misconceptions about trial participation.
Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.
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Transcript:
Katherine:
What would you say to patients who may be hesitant to participate in a trial?
Dr. Waks:
That’s a great question. I think many patients are at first hesitant to participate in a trial, which is natural. You know, there’s already so many overwhelming and scary decisions to be made when it comes to getting a breast cancer diagnosis or any cancer diagnosis that introduce a whole other set of discussions. Instead of variables, it’s found extremely overwhelming and adds another level of what might feel like uncertainty, so I think that’s a completely natural response is to be hesitant and overwhelmed if somebody brings up the clinical trial.
But what I would try to address in terms of patient concerns is number one, I think that patients worry that if they are approached about a clinical trial that means there aren’t other good options available to them which not always, but almost always is actually far from the truth. Usually it’s just because we have a standard, we think it’s pretty good but we’d like to do better than the standard and participating in a clinical trial is how we do that.
So, first I always, of course, assure patients this clinical trial is not like something we’ve never tested before and we know nothing about it, and it’s not because I don’t have other options for you. It’s just because I want to do better than the existing options and often it’s looking at an agent that’s already FDA-approved, but we’re trying to combine it with a different agent or something like that.
So, obviously, number one try to give patients some reassurance about what we already know about the trial agents and also reassure them about the fact that we don’t anticipate the efficacy of their treatment overall would be compromised. Rather we’re trying to improve upon that. So, I think that’s probably the most common concern that I hear from patients, but, of course, as providers it’s our job to understand from that specific patient who’s in front of you what are your particular concerns about clinical trials in general. And are those misconceptions that I can dispel for you, or are they real things that some women on trials do experience in which case we should talk through them and decide if it’s the right fit for you.
It’s almost always true that participating in a clinical trial does come with what I always call a few other hoops to jump through, because when you’re participating in a clinical trial we want to learn from your experience. So, we do want women to complete questionnaires about their side effects or have a second appointment one week later so that we can do an extra side effect check-in or something like that. You know, do an EKG that they wouldn’t otherwise need. So, there can be and often are some additional logistical or scheduling components that come with participation in the trial.
Again, we would want a patient to voice how that might or might not fit into her life and be very up front about what could be expected in terms of additional asks which can be extremely minimal or sometimes more disruptive depending on the trials. So, obviously, we just need to have a conversation about that.
What Are the Treatment Options for Early Stage Breast Cancer?
What Are the Treatment Options for Early Stage Breast Cancer? from Patient Empowerment Network on Vimeo.
Breast cancer expert Dr. Adrienne Waks reviews available treatment approaches for patients with early stage breast cancer and explains the role of sub types when choosing a treatment plan.
Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.
See More from Thrive Breast Cancer
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Transcript:
Katherine:
Well, let’s get into the specific treatment options that are available for breast cancer patients. Could you tell us about those?
Dr. Waks:
So, fortunately, the answer to that question is enormous, because we have so many effective treatment options in breast cancer and generally our patients do very well in the long term when they are diagnosed with early stage breast cancer, so stage I or II or III breast cancer.
That might involve the breast, it might involve the lymph nodes under the arm, but it hasn’t traveled anywhere else in the body. So I’ll set aside metastatic breast cancer and just talk about stage I, II, and III.
So, as you may know, we think about as medical oncologists we completely separate treatment considerations for three different subtypes of breast cancer. Those are hormone receptor-positive, HER2-positive and then triple-negative. So, again, highlighting just important developments and not really the overall treatment planning for each of those subtypes, in ER-positive disease or estrogen receptor-positive disease hormonally-driven, estrogen-driven breast cancer – those are all sort of terms for the same thing, I think there have been a couple of important developments over the last few years.
Probably the most important recent one is the new understanding and demonstration that the CDK4/6 inhibitor abemaciclib, the brand name of that drug is Verzenio.
That drug when we administer it for two years after a patient has had their surgery and in conjunction with alongside the antiestrogen medicines; the antiestrogen medicines are usually done for a minimum of five years, when we add on to that the CDK4/6 inhibitor abemaciclib, we see that for women with higher risk disease, so maybe some lymph node involvement or a large tumor in the breast or both that the addition of the Verzenio, the abemaciclib seems to decrease their risk of recurrence of breast cancer a couple of years out. So, that’s been an important exciting development.
Again, not for all women within early stage estrogen-driven breast cancer, but for a little bit more advanced early stage disease like lymph node involvement. You know, we’re obviously always looking for ways to reduce that risk of recurrence for women who have a little bit more risk at diagnosis and the addition of abemaciclib was an exciting and welcome addition to our toolkit there.
In HER2-positive disease, which is about 20 percent of breast cancers overall, I think what the recent years have brought us is increasing understanding that in many cases we give women too much chemotherapy and that we need to be – so, here it’s less about adding on. Like the Verzenio example I was just talking about and more about individualizing and figuring out in whom and how we can pull back from sort of the kitchen sink approach that we take often to treating a HER2-positive early stage breast cancer and be more thoughtful and more personalized in the amount of treatment that we give women with HER2-positive breast cancer.
The reason for that is that we’re basically 20 years into understanding that for HER2-positive breast cancers we can treat those cancers very effectively with anti-HER2 antibody drugs like trastuzumab or Herceptin. We didn’t even know that until 20 years ago. And so, Herceptin, trastuzumab and similar drugs have really revolutionized how effectively we can treat women with HER2-positive breast cancers. And so, at this point, it’s becoming more and more clear that we can really lean more on our arsenal of anti-HER2 targeted therapies like Trastuzumab. Pertuzumab (Perjeta) is another one and trastuzumab MTNC and TDM1 is another one.
So, we have all these excellent smart targeted treatments for women with HER2-positive disease, but yet the standard of care is still to give all those good rational targeted treatments with a whole bunch of chemotherapy that comes with a lot of side effects.
I think more and more we’re figuring out that we can lean more on our anti-HER2 treatments and require less of the really side effect heavy chemotherapy, but how do we do that thoughtfully? We obviously don’t want to undertreat anybody, so how do we do that thoughtfully? How do we pick out the women who only need the anti-HER2 treatment and can get away with less chemotherapy. I think that’s really what’s exciting in HER2-positive early stage breast cancer right is how do we individualize and take advantage of targeted agents that we have?
And then finally, in the third subtype of breast cancer which is triple-negative breast cancer which accounts for about 10 percent of breast cancers, the most exciting development there clearly in the last year or so is the realization and the demonstration in randomized clinical trial that we can improve outcomes for those women if we give them not just chemotherapy but also chemotherapy combined with immunotherapy and specifically the immunotherapy agent called pembrolizumab or Keytruda.
So, up until a year or two ago, the standard for a stage I or II or III triple-negative breast cancer was to get a multiagent chemo regimen and chemo was really the only type of option we had to treat those triple-negative breast cancer patients and now we know from a major important clinical trial called Keynote 522, that if we take a standard chemo backbone and add Pembrolizumab immunotherapy onto it, that we can help those women do better in the long term. So, that’s really a pretty new in the last one or two years standard of care for triple-negative breast cancer.
And I guess the last thing I’ll say is not about one of those three subtypes of breast cancer but specifically for women with a BRCA1 or BRCA2 mutation associated with their breast cancer, which is a minority. It’s about 5 percent of breast cancer patients. Obviously, the proportion changes depending on your subtype of breast cancer and your age when you’re diagnosed, but for women who have a breast cancer associated with BRCA1 or 2 mutation and have a higher risk or early stage breast cancer.
So, again, they have a number of lymph nodes involved or a big tumor in the breast or something like that, we now know that we can add on one year of the PARP inhibitor medication called olaparib or Lynparza to the postoperative treatment of those breast cancer patients in addition to whatever other treatment they got; the antiestrogen pills, the chemotherapy, or a combination of those two, and with the addition of olaparib or Lynparza for a year that we can again see better long-term outcomes for those patients and help them avoid recurrences.
So, that’s not a majority of breast cancer patients but is a targeted treatment that we’re very excited about that definitely makes an important contribution to reducing risk for women with a BRCA1- or BRCA2-associated cancer or men for that matter. I’m saying women, but it could absolutely apply to men.
How Is Metastatic Breast Cancer Treated?
How Is Metastatic Breast Cancer Treated? from Patient Empowerment Network on Vimeo.
Breast cancer expert Dr. Adrienne Waks discusses treatment approaches for metastatic breast cancer and explains how research is evolving.
Dr. Adrienne Waks is the Associate Director of Clinical Research at Dana-Farber Cancer Institute. To learn more about Dr. Waks click, here.
See More from Thrive Breast Cancer
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Transcript:
Katherine:
What about people who have metastatic disease? What treatment advances are available for them?
Dr. Waks:
Yeah. You know, I think that’s an incredibly important question and a totally different set of discussions than we have with women with early stage breast cancer and unfortunately and unacceptably at this point for a woman diagnosed with metastatic breast cancer still typically that can become a life-threatening diagnosis.
So, it’s exceptionally important that we rapidly improve the treatment options that we have for women with metastatic breast cancer. Maybe everybody says this every year, but I think that this year, 2022, has been a particularly exciting year in terms of advances that we’re making in the treatment of metastatic breast cancer, really of all subtypes. I would say the most exciting class of drugs or type of drugs that’s coming out in breast cancer and in all malignancies honestly, is called antibody drug conjugates, which is to say an antibody. So, a molecule that’s targeted to some particular approaching on a cancer cell surface and then is attached to or conjugated to a chemotherapy molecule.
So, the antibody is like a smart delivery system directly to the cancer cell for what’s call a payload, basically like a sort of action molecule or the killer molecule, which is the chemotherapy.
Those kinds of antibody drug conjugants have made a huge impact in recent years in improving outcomes for women really with all subtypes of breast cancer, so that drug class I think is a very exciting one to watch in general. In terms of specific recent developments in metastatic breast cancer, so probably the biggest blockbuster development over the past year and really over just the past three months is the understanding that we can break out a subtype of metastatic breast cancer that we really didn’t even talk about before which is called HER2-low breast cancer. So, before if you asked me in May of 2022, there really were only two types of HER2 readouts for a breast cancer tumor.
There was a HER2-negative breast cancer tumor and there was a HER2-positive breast cancer tumor and as I already told you, the HER2-positive accounts for about 20 percent of breast cancers overall. The other 80 percent are HER2-negative. And so, historically, again you asked me three months ago I would have said if you’re HER2-positive and that 20 percent will give you these different HER2-directed treatments and if you’re not, we can’t use those. And what’s changed is that we’ve developed new antibody drug conjugants. So, drugs that are targeted against in this case the protein HER2 that seem to be so effective and work so well, that you don’t truly have to be HER2-positive.
You can be HER2-low and still benefit from these treatments, which is to say your cancer has a little bit of HER2 protein on the surface of the breast cancer cells but not a lot. So, not enough to make it positive but enough to make it low in its designation.
That’s actually a large proportion of breast cancer patients. It’s over 50 percent of breast cancer patients, so it’s significantly more than HER2-positive, so a large proportion of breast cancer patients actually fit into this new category called HER2-low and we now know from data that were presented in June of 2022 and then published in the New England Journal of Medicine, which is our biggest most high profile academic medical journal, we know that for patients who fall into that HER2-low category, again that’s more than 50 percent of breast cancer patients, that they can, if they have a metastatic breast cancer, benefit from this new antibody drug conjugate called trastuzumab deruxtecan (Enhertu).
When it was compared to the existing chemo options we have for those patients which do have some efficacy but nonetheless, when trastuzumab deruxtecan was compared to the existing chemo options, it clearly looked better for patients with HER2-low breast cancer. So, that was not just an exciting advance in terms of new treatment options which we always love to be able to offer to patients but also in terms of breaking out this entirely new designation and subcategory that captures more than half of our metastatic breast cancer patients and helping us to offer them something new and hopefully will be a pathway for other drugs to be developed in this space and for this new subcategory.
So, that was very exciting. I’ve been talking about it with patients all the time in the past just three months since those data came out.
You know, a second antibody drug conjugate that has also been very exciting in recent months and recent years is called sacituzumab govitecan which Trodelvy is the brand name of that one. That’s an antibody drug conjugate that’s targeted against a different protein on the cell surface that’s targeted against the protein Trop-2, so that’s where the Trodelvy comes from. It’s targeting Trop-2. That’s an antibody drug conjugate that we’ve known for probably three or more years now can be very effective in triple-negative metastatic breast cancer. So, we’ve had that option for a number of years in metastatic triple-negative breast cancer.
But again, just in the past few months have gotten good and exciting data that this Trodelvy or sacituzumab drug also works in estrogen-driven breast cancers.
And so, it’s giving another option to patients with not just triple-negative but also estrogen-driven breast cancer. So, that was another very recent development just in the last three months or so.
Katherine:
That’s really exciting.
What Is One Thing (Or More) You’d Like to Say to a Newly Diagnosed Breast Cancer Patient?
As we enter the final days of Breast Cancer Awareness Month, I am remembering a time over a decade ago, when immersed in a sea of pink ribbons I felt part of something. I had been diagnosed with breast cancer as the month of September turned into October and surrounded by Breast Cancer Awareness Month activities I felt supported as a newly diagnosed patient.
But as the last days of October faded and the pink ribbon wearers began to disappear, I was left wearing the everyday reality of a disease that I still felt ill-equipped to bear. I still feel a sense of sadness today at all that I had yet to learn and go through on my journey with breast cancer. I often wonder how much easier that path might have been had I known then what I know now.
One thing I know for sure is that those of us who have traveled this road can ease the way for others who are just starting out. In this spirit, I reached out to the breast cancer community to ask them what advice they would give to a newly diagnosed person with breast cancer. You will find their responses below alongside some of my own.
Find Support
Cancer research advocate and 20+ year breast cancer survivor, Lisa DeFerrari [1] emphasizes the important role of support. “Don’t be afraid to reach out for support early on,” she advises. “I realize that many of us are very independent-minded – I certainly am,” she says, “but breast cancer and learning how to deal with it are complicated and there are lots of great resources out there. Reaching out for information and support can also be a way to recover from the sense of loss of control that often comes with a cancer diagnosis.”
To this cancer blogger, Megan-Claire Chase [2] adds, “let go of your pride. Don’t be afraid to start a GoFundMe. You’d be amazed by people’s generosity to pay your medical bills and regular bills.”
Ask Questions
“Ask questions and push for information,” recommends Julia [3] creator of #BCCWW breast cancer Twitter chat. “For people living with long term conditions and disabilities before breast cancer it is valid to worry about the consequences of cancer and the risks of treatment on your wider health,” she adds. “Don’t let anyone invalidate those concerns with ‘but cancer’ – it’s your body and health, it’s you that has to bear the possible risks and potential consequences of both. So make sure they’re centered to the degree you need them to be.”
Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney [4] who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, urges women to ask about their breast density even after a diagnosis, as this is important information because It will influence their surveillance imaging. Siobhan highlights the fact that “many women diagnosed with breast cancer don’t know anything about dense breasts and associated risk factors.
Be Your Own Advocate
Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available. Siobhan advises taking time to absorb what’s just happened and then take notes at meetings and consultations. “Find out as much as you can about your particular cancer and speak up,” she recommends. “Ask for MRI, PET, CT any baseline scans available to you. Find reliable, evidence-based information.”
Jo Taylor [5] founder of After Breast Cancer Diagnosis stresses the need to be your own advocate. “Be your own advocate – try to understand what type of breast cancer it is and ask questions and research it. Always ask for copies of scans and details. Then find your community who support you and you can support them.”
Employment Advice
Megan-Claire offers this advice for those who are working full time at the time of diagnosis “Talk with your manager or direct supervisor and work out a plan where you can work from home (if not already due to COVID) and work out a schedule for coverage when your chemo treatment starts.” She also offers two practical tips when undergoing chemotherapy: “I suggest getting your chemo on Fridays so you’ll have the weekend to rest,” and “ask your oncologist for a temporary handicap sign. It helped me immensely due to deep fatigue.”
Tackle Fatigue
As Megan-Claire mentions, fatigue is an issue that cancer patients face. We all know what it’s like to feel tired — physically, mentally, and emotionally, but usually, after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. You experience persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease. A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done about it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you [6].
Journal Your Thoughts
It is amazing how quickly you forget what you thought and felt in those early days of diagnosis and treatment. Megan-Claire recommends keeping a journal to note down your thoughts. “It could just be a sentence or two and either save them on your laptop or in a journal,” she recommends. “There was a lot I forgot about and was glad I had my little notes from the start of treatment to look back on.”
Honor Your Grief
One of the things you might like to journal about is the feelings of loss and grief you will experience with a cancer diagnosis. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies. Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness [7].
Respect the diagnosis; question the prognosis
This final piece of advice comes from Betsy Mullen [8]. “Respect the diagnosis; question the prognosis,” she says. “I was diagnosed with a grade III triple-negative breast cancer and given 2-3 years to live at best. That was 29 years ago.”
To Wrap Up
Being diagnosed with cancer is a life-changing event. Know that you will go through many emotions and experiences on the roller-coaster ride of diagnosis, treatment and beyond. Each person will experience the journey in their own way. While there’s no right or way to go through the experience, it’s important as mentioned above that you find support. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.
Notes
[1] Lisa DeFerrari Finding Great Support After a Cancer Diagnosis
[2] Megan-Claire Chase Life On The Cancer Train
[3] BCCWW https://twitter.com/bccww
[4] Siobhan Freeney https://beingdense.com
[5] Jo Taylor abcdiagnosis.co.uk
[6] How To Cope With Cancer-Related Fatigue
[7] Grief, Loss, and the Cancer Experience
[8] Betsy Mullen https://twitter.com/betsymullen
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
What Do You Need to Know About Metastatic Breast Cancer Genetic Testing?
What Do You Need to Know About Metastatic Breast Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.
Why is it important to ask about metastatic breast cancer genetic testing? Find out how test results could reveal more about YOUR breast cancer and could help determine the most effective treatment approach.
See More From INSIST! Metastatic Breast Cancer
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Transcript:
Why should you ask your doctor about metastatic breast cancer genetic testing?
The National Comprehensive Cancer Network – also known as the NCCN – recommends that every metastatic breast cancer patient undergo genetic testing. The test results can help predict how your cancer may behave and could indicate that one type of treatment is more effective than another.
This testing identifies specific gene mutations, proteins, chromosomal abnormalities, and/or other molecular changes that are unique to YOU and YOUR breast cancer.
There are two main types of genetic tests used in breast cancer:
- Germline or hereditary genetic testing, which identifies inherited gene mutations in the body. These mutations are present from birth, can be shared among family members and be passed on to subsequent generations.
- The second is somatic or tumor genetic testing, which identifies markers that are unique to the cancer itself. It is also commonly referred to as genomic testing, biomarker testing, or molecular profiling. Somatic mutations are NOT inherited or passed down from family member to family member.
- Depending on your history, your doctor may order one–or both–of these types of tests.
So why do the test results matter?
- If you have specific gene mutations – such as the BRCA1 or BRCA2 inherited gene mutations – it could indicate that a targeted treatment approach may be the most effective option. For example, there are two oral targeted therapies that are approved specifically for use in metastatic patients with BRCA1-positive or BRCA2-positive breast cancer.
- Results of these tests may also help you to find a clinical trial that may be appropriate for your particular cancer.
- Additionally, results from germline genetic testing may suggest that close family members should also be tested to determine their risk.
How can you insist on the best breast cancer care?
- First, always speak up and ask questions. Remember, you have a voice in YOUR breast cancer care.
- Ask your doctor if you have had–or will receive–genetic testing, including germline and somatic testing.
- If you have already undergone genetic testing, bring a copy of your results to your current doctor, so they can understand your results and determine whether additional testing is needed.
- Have a discussion with your healthcare team about the test results – including which markers were detected and how results may impact your care and treatment plan.
- Ask whether your family members should meet with a genetic counselor or undergo testing to help gauge their risk of developing breast cancer.
- And, finally, bring a friend or a loved one to your appointments to help you process and recall information.
To learn more about breast cancer and to access tools for self-advocacy, visit powerfulpatients.org/breastcancer.
Metastatic BC Research: How Can You Advocate for the Latest Treatment?
Metastatic BC Research: How Can You Advocate for the Latest Treatment? from Patient Empowerment Network on Vimeo.
What do metastatic breast cancer patients need to know about the latest research news? Dr. Megan Kruse shares highlights from the 2020 San Antonio Breast Cancer Symposium (SABCS), along with her advice for advocating for the right testing to help guide treatment options.
Dr. Megan Kruse is a Breast Medical Oncologist at the Cleveland Clinic. More about this expert here.
See More From INSIST! Metastatic Breast Cancer
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Factors That Guide a Metastatic Breast Cancer Treatment Decision |
Transcript:
Dr. Kruse:
At this year’s San Antonio Breast Cancer Symposium, there were a few interesting presentations about the treatment of first-line metastatic triple-negative breast cancer that I think patients should be aware of.
Two of the presentations centered around trials that were presented in the past. Those reporting, patients reported outcomes from the IMpassion 130 study, which looked at chemotherapy for metastatic triple-negative disease plus the immunotherapy atezolizumab. And then, there was also an update on the results from the KEYNOTE-355 study, which was a study again of chemotherapy for metastatic triple-negative patients in combination with pembrolizumab, a different immunotherapy. And both of these studies showed that there was benefit for women in certain sub-groups of triple-negative breast cancer when looking at addition of immunotherapy.
And so, what I’d like to draw patients’ attention to with these presentations is that you have to be aware of if you fall into one of these categories so you know if you’re a candidate for the particular type of immunotherapy that can be added to chemotherapy. There are two different ways to test for if a patient is a candidate for immunotherapy and they are both tests that can be done on biopsies of metastatic or cancer recurrent sites in the body.
They can also be sent off of original breast cancer tumors. And what we now know is that for patients who do not have markers that suggest immune activation or where the immune system would be responsive to immunotherapy the addition of that extra therapy really does not help to improve cancer control over chemotherapy alone. And I think that’s a really important topic because everyone is very interested in immunotherapy, but it does have side effects of its own and it can actually be lasting side effects in terms of inflammation in organs like the liver, the colon, and the lungs.
And then, the third presentation that I’d like to bring up is the IPATunity study, which looked at the addition of a targeted therapy called ipatasertib to, again, chemotherapy for the first treatment of metastatic triple-negative disease.
And so, this is getting into an area of targeted therapy for metastatic triple-negative disease. And again, only looks at patients that have a particular marker that suggests sensitivity to this drug. And those are certain genetic markers, predominately changes in a DNA marker called PIK3CA. In this study, we actually found that there was no benefit for the targeted therapy added to chemotherapy for patients that had that genetic mutation, which was different than what was seen in earlier studies of the same combination. So, I think there’s more work to be done and it’s probably too early to say that this targeted therapy will not be used in treatment of metastatic breast cancer.
But what all of these research studies show together is that metastatic triple-negative cancer is not really just one disease. It’s very clear that within that one name, there are multiple different patient types and tumor types that need to be cared for differently.
And so, again, I think the theme from these abstracts and these research presentations is that we have to look into the right therapy for the right patient at the right time, which largely involved DNA-based testing.
So, when patients are thinking about their treatment options and how to best help with their providers about what treatment options exist for them, I think it’s important to recognize the type of testing that may be advantageous in your cancer type.
And so, for all metastatic breast cancer patients, we really recommend that they’ve had genetic testing to look for DNA changes like BRCA mutations that will lead to treatment options. For metastatic triple-negative disease, it’s important to make sure that you’re providers are testing for PDL1, which would make you a candidate for immunotherapy. And then, the more we learn about clinical trials, the more we have options for patients that have had drug-based DNA or genome-based testing. So, that’s an important term for patients to become familiar with is genomic testing.
And I think when you bring that up with your providers, they’ll know what you’re talking about and they’ll know that what you’re potentially interested in is new targeted therapy for the cancer that may either come in combination with chemotherapy or as a standalone treatment option. If you don’t have those options that are available, and FDA approved basis for regular routine patient care, there is always the option of clinical trials.
And so, if that is something that you’re interested in, genomic testing will often open the way. So, I think as you’re writing notes when you’re talking to your providers, you might wanna jot down whether or not you’ve had genetic testing and whether or not you’ve had genomic testing in the past, as both of those things will help potentially address all of your treatment options.
I’ve very hopeful about the research that is going to lead to new developments for breast cancer treatment in the next few years.
I think what we’ve seen both at this San Antonio Breast Cancer Symposium as well as other conferences in the recent past has been a lot of focus on finding the right treatment for the right patient at the right time. And so, patients seem to be very interested in finding out this information. They often come to clinic armed with the most recent data, which allows their providers to have really informed discussions about what the best treatment might be. And to talk about if the new treatments are not great right now, what treatments might look like in the future.
I think the other thing that’s encouraging about the research that we’ve seen presented at this conference is that some of these trials are very, very large. For example, the RxPONDER trial was a trial of over 9,000 patients. And I really think that’s amazing to get that many patients interested in research that may not directly impact their patient care but will impact the care of others moving forward.
It’s just a sign that our breast cancer patients are empowered, and they want to make a difference in the scientific community as a whole.
How Can You Advocate for the Best Breast Cancer Care?
How Can You Advocate for the Best Breast Cancer Care? from Patient Empowerment Network on Vimeo.
Breast cancer expert Dr. Julie Gralow explains how you can advocate for the best metastatic breast cancer care, through speaking up, utilizing care team members and taking key steps to achieving better care.
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. More about this expert here.
See More From INSIST! Metastatic Breast Cancer
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Transcript:
Katherine:
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 going to 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.
How Can Breast Cancer Genetic Testing Empower Women?
How Can Breast Cancer Genetic Testing Empower Women? from Patient Empowerment Network on Vimeo.
Dr. Stephanie Valente explains how breast cancer genetic testing results can help women learn about their breast cancer risk and guide prognosis and treatment choices.
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
Related Resources:
Transcript:
Dr. Valente:
So, genetic testing in this day and age is really empowering to a lot of women. So, it allows women to take control of their health from the beginning. So, if somebody has a strong family history of breast cancer, and that woman doesn’t have breast cancer but wants to know if she’s at an increased genetic risk for developing breast cancer in her lifetime – Knowing that risk and if a gene is identified, that woman could undergo high-risk screening.
So, saying if she develops breast cancer, it would be caught early, and she can go into a high-risk program. Or she can elect to prophylactically – meaning before cancer – remove her breasts. That would be both of the breasts with a mastectomy – Again, with or without reconstruction. And so, that decreases the risk.
Nothing in life is 100%. But it essentially decreases the risk of getting breast cancer. Some of the genes, like the BRCA gene – that’s a very common gene – is a 60% to 80% lifetime risk of developing breast cancer. And so, that would take that lifetime risk down to about 5% risk of developing breast cancer. And so, that’s empowering for a lot of women. And so, some women do elect to have that procedure.
The other thing for genetic testing is that for women who are diagnosed with breast cancer, sometimes the triple-negative breast cancer – finding out whether or not they carry a BRCA gene. We know that certain genes in triple-negative breast cancer allow patients to have better treatment outcomes with certain chemotherapy. So, the medical oncologist may opt to add a specific chemotherapy based on whether or not that patient actually carries a genetic mutation.
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.
See More From The Pro-Active Breast Cancer Patient Toolkit
Related Resources:
Metastatic Breast Cancer: Accessing the Best Treatment for YOU |
When Is a Full Mastectomy Appropriate for Breast Cancer Patients? |
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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.
See More From The Pro-Active Breast Cancer Patient Toolkit
Related Resources:
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Essential Testing Following a Metastatic Breast Cancer Diagnosis |
Metastatic Breast Cancer Treatment Decisions: Which Path is Best for You? |
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.
See More From The Pro-Active Breast Cancer Patient Toolkit
Related Resources:
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?”
Essential Testing Following A Metastatic Breast Cancer Diagnosis
Essential Testing Following a Metastatic Breast Cancer Diagnosis from Patient Empowerment Network on Vimeo.
Following a metastatic breast cancer diagnosis, what tests are essential? Dr. Lisa Flaum reviews the role of key tests, and the impact of molecular (genetic) test results on treatment decisions.
Dr. Lisa Flaum is a Medical Oncologist at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more here.
See More From INSIST! Metastatic Breast Cancer
Related Resources:
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Transcript:
Dr. Flaum:
When someone has either a diagnosis or a suspected diagnosis of metastatic cancer, meaning a diagnosis of cancer that has spread somewhere outside of the breast. And the most important initial step is establishing a tissue diagnosis. So, we could have our suspicions based on imaging, based on symptoms, but the most important thing is to confirm it. And usually that confirmation involves some type of tissue biopsy. So, collecting cells, examining them under the microscope, making sure that the diagnosis in fact, is cancer. Making sure that the cancer has spread from the breast, which is something that is definable under the microscope for the most part. And then evaluating various molecular markers within the tumor itself that are critical to guiding treatment.
So, in addition to the tissue diagnosis, the other important first step is what we call cancer staging. So, establishing the extent of the tumor within the body, which typically involves some type of scans, which may be variable depending on the situation or depending on the physician often could be a CT scan and a bone scan, maybe a PET scan. There may be an MRI.
So, a number of different tests that help us establish where the tumor is at baseline, so we can better understand the anatomy, but also to follow down the road to establish whether any given treatment is working. There are also maybe discussions of other types of molecular testing beyond what we determined in terms of the traditional biologic markers. You might hear the terms next generation sequencing tests like Foundation, Guardant, Tempus, which better define the cancer’s biology, which increasingly is becoming useful in terms of targeting treatment to someone’s specific cancer.
So, the molecular tests are looking at a few different things. So, first and foremost from a breast cancer standpoint, the most important basic molecular markers are what we consider to be the four main receptors, which is the estrogen and progesterone receptor, which dictates whether a given tumor is driven by estrogen and importantly dictates whether anti-estrogen therapy is going to be an appropriate component of the treatment. The other basic marker is called HER2, which is a protein that’s over-expressed.
In about 20% of breast cancer patient cells, and it’s also very critical in terms of guiding treatment. For specific types of breast cancer, once we know those preliminary molecular markers, then there’s an array of other types of anomalies within the tumor itself that could help to guide specific treatment. So, a couple of examples, and I can talk about that when you talk about treatment. If someone has a genetic predisposition to breast cancer with a BRCA mutation, there’s a specific treatment that might be appropriate. More recently, there’s another abnormality that can be detected by these tests called a PI3-Kinase mutation that identifies a population of patients who could be appropriate for another type of targeted therapy. So, for an individual, knowing what their particular profile is, whether or not those treatments are going to be indicated right at the beginning of treatment or maybe something that we use down the road. Inevitably, they’re going to help us understand what our tools are when we’re helping to make those decisions.
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.”
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
