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In partnership with CURE®, Susan G. Komen

 Greater New York City hosts its 4th Annual Patient Navigation Town Hall "Empowering and Mobilizing Our Patient Navigation Workforce". Leading health researchers, public policy experts, oncologists, community health workers and patient navigators will convene virtually on June 23rd, to discuss the impact of the COVID-19 pandemic on the cancer landscape; how healthcare professionals and patients are navigating the path forward; dealing with compassion fatigue and important workforce development "next steps" tailored to strengthen this important workforce.

For an overview of the entire program, go 

Susan G. Komen Greater New York City Annual Patient Navigation Town Hall


In partnership with CURE®, Susan G. Komen Greater New York City hosts its 4th Annual Patient Navigation Town Hall "Empowering and Mobilizing Our Patient Navigation Workforce". Oncologists, community health workers and patient navigators will get together on June 23rd, via webinar, to discuss the impact of the COVID-19 pandemic on the cancer landscape and how professionals and patients can navigate the fallout moving forward. 

Susan G. Komen Greater New York City 4th Annual Patient Navigation Town Hall Livestream

While a diagnosis of cancer can be overwhelming and fear-inducing, stage four metastatic breast cancer thriver Nalie Agustin has some advice for patients who want to maintain an active role in their treatment: be your own advocate.

 recently spoke with Agustin, who is also an author, speaker and wellness advocate, at the 37th Annual Miami Breast Cancer Conference® in March, where she shared some questions that newly diagnosed patients should ask of their care teams in order to empower themselves through what can be a scary time.

I think it’s important to ask, for one [thing], if certain oncologists have patients who are doing well, and if so, what treatments are they on. And outside of medications, [ask] what else can you do as a patient to participate in your wellness, rather than just support the illness?

Maybe it’s not even the oncologists who will be able to give you the answers, but often the hospitals have certain nurses or even support groups or workshops that patients can get far more information when it comes to their health. Whether it’s psychological or even physical or exercise, there’s just so much you can do.

Often you think we’re the victim, but there’s a lot that you can do to be your own advocate and participate in your healing.

Miami Breast Cancer Conference and Educated Patient Breast Cancer Summit

“Often you think we’re the victim, but there’s a lot that you can do to be your own advocate and participate in your healing,” says stage four metastatic breast cancer thriver Nalie Agustin.
 

Advice for the Newly Diagnosed: How to Play an Active Role in Your Treatment

In addition to identifying mutations related to their diagnosis, genetic testing may also offer patients with cancer the benefit of identifying potentially helpful clinical trials, according to Dr. Elisa Krill-Jackson, hematologist and oncologist at the Sylvester Comprehensive Cancer Center.

® Educated Patient Breast Cancer Summit in Miami, Florida, 

® spoke with Krill-Jackson about the importance of genetic testing and how it can complement clinical trial participation.

I think it’s really important to ask your physician, “Would I qualify for a clinical trial?” When we actually do a genomic test, (with) the particular mutations they find, they list what therapies would be good for this, what therapies wouldn’t be good and whether there are any clinical trials available.

A clinical trial may not be the best option at all points in treatment, but I think at many points in treatment it is a really good option for our patients. It helps advance the field, and our patients get early access to drugs that really may be lifesaving.

Genetic testing offers a care team a wealth of knowledge to help them craft treatments, but it also can help match patients to clinical trials for potentially better outcomes.

Genetic Testing May Offer More Through Clinical Trial Matching

Cancer and its treatments can take a physical and mental toll on a family. But when the financial burden may be too difficult to bear, patients can find assistance through programs like the Komen Treatment Assistance Fund.

 recently spoke with Josh Hirsch, director of mission and communications, Susan G. Komen Florida, at the 37th 

® Educated Patient Breast Cancer Summit about the financial strain that some patients face, and how the his organization helps ease the financial burdens of cancer by providing support for out-of-pocket expenses.

Financial resources are always a strain. Many times, women and men have to dip into their savings just to provide basic things, like keeping the lights on.

So, we’re proud of the Komen Treatment Assistance Fund, which, no matter where you are in the state or the country, you can call 1-877-GO-KOMEN. If you qualify, meaning if you’re at a certain percent below the federal poverty level, you can get a financial stipend.

What’s unique about this financial stipend — and it’s minimal, probably about $300 or so – is that it can go to things like oral chemotherapy, childcare, transportation, lymphedema care; things that aren’t covered through other programs, so we’re pretty proud of that.

It really allows that woman or man to feel that there is hope out there. They’re also able to get some psychosocial counseling, some financial counseling, and just know that there are other people out there to help them.

Patients faced with cancer are also faced with tough uphill financial battles, but there are assistance programs that can help.

Financial Assistance Programs Offer Out-of-Pocket Cost Relief to Patients with Cancer

Patients who are unsure about undergoing genetic testing but may have a genetic predisposition to cancer should consider the positive impact their results may have on their health, whether they have been diagnosed or not, according to Dr. Lauren Carcas.

Carcas, a medical oncologist from the Miami Cancer Institute, recently sat down with CURE® at the 37th Annual Miami Breast Cancer Conference® and 

® Educated Patient Breast Cancer Summit to talk about the importance of genetic testing, and how it can inform treatment decisions in individuals with cancer.

I always argue that knowing family history is arguably one of the most important things to know about what your risk is for breast cancer. I think that genetic testing is a situation of “knowledge is power”.

If you know your risk, you can potentially take action to reduce that risk, potentially nearly eliminate that risk. But if you already have a diagnosis of breast cancer, it’s really important because that actually might impact your treatment decision.

Really, you have to be your own advocate, and part of advocating for yourself is knowing the total history and knowing the total diagnosis. Knowing that you have a gene mutation that is the underlying cause of your diagnosis is really important.

Having the right understanding and information of a patient’s genetics can not only help treat cancer but also help prevent it.
 

'Knowledge is Power' in Genetic Testing for Hereditary Cancer

Receiving a misdiagnosis and being treated for the wrong type of breast cancer for five years led Stephanie Seban to discover the importance of knowing her own diagnosis. That’s why Seban, now a wellness advocate and cancer thriver, shares her story with others — in the hope of inspiring them to learn all they can about their own diagnosis and be their own best advocates.

® Educated Patient Breast Cancer Summit, Seban explained why, despite the fear one might feel, learning all you can about your diagnosis is key to feeling more empowered on your cancer journey.

Definitely get a second opinion and know your diagnosis. (I’ve met) so many women, over my almost nine years of advocating, and I’ll ask them, “What kind of breast cancer do you have?” and they don’t know.

No judgment, sometimes less is more and you’re fearful and I understand that, but knowing your diagnosis, knowing the drugs that you’re on, knowing their specific functions, knowing what’s in the pipeline for new treatments to come is so important and allows you to feel empowered and a little bit in control of something that’s so out of control. So definitely get to know your diagnosis.

Understanding a diagnosis is not just something for a patient's care team, the patient needs to understand their diagnosis as well.   

A Metastatic Breast Cancer Thriver Shares the Importance of Understanding Your Diagnosis

Understanding biomarkers specific to breast cancer can guide treatment plans and help families with a history of the disease take preventive measures.

Barbara Bigelow knows this well as she has been living with metastatic breast cancer since 2002. Originally told she had estrogen receptor (ER)-positive disease, she later learned she actually had triple-negative breast cancer. At the 

 Educated Patient Breast Cancer Summit in Miami, Bigelow, who is a Metavivor board member, spoke with us about the role of biomarker testing and the concern she has for her daughters.

There’s no one breast cancer. There are many types and within that there’s several subtypes. I told you I was ER positive at one point, and I am a special person, so I mutated to triple negative. And the thing about being triple negative is it usually occurs in younger women or more in African American women, neither of which I am. And so, the biomarker testing is really important to focus in on what exactly is going on in your genetic profile and what mutations you might have that might lead us to treatment that is specifically designed for you.

You know, I happen to have a high PD-L1 marker and I also have a high tumor mutational load, and because of those two factors, they think that’s why I responded so well to the immunotherapy. Whereas, someone sitting next to me with triple-negative breast cancer might not have those factors and it won’t work for them at all.

The testing is critical. Just a month ago, I asked (my doctors) to update my testing because of my daughters. I mean, my daughters are 28 and 30 now, and I wanted them to update the testing for the sake of them because they’re at high risk having a mother and two maternal aunts with breast cancer, and also my nieces.

So, I mean, I wanted to update it for them so that in the future, they may discover things they don't yet know about the genetic component. And also, I've banked my blood so that if they make future discoveries, they can compare it to my blood and that might help my kids

Understanding biomarkers specific to breast cancer can guide treatment plans and help families with a history of the disease take preventive measures.
 

The Importance of Biomarker Testing for Patients and Their Families

CDK 4/6 inhibitors have changed the way treatment is thought about and given for patients with breast cancer, but the cost and side effects associated with the therapies need to be understood as much as the benefits.

 Educated Patient Breast Cancer Summit, held March 7, 2020, in Miami, Florida, 

 had the chance to discuss with Patricia Jakel, a clinical nurse specialist in the Solid Tumor Program at UCLA Medical Center, Santa Monica, had the chance to discuss what this therapy means for patients. In particular, she highlighted how patients with breast cancer can get advice about the inhibitors and the essential information they need to know about them. 

Could you provide a brief overview of CDK 4/6 inhibitors for patients? 

: The drugs actually are targeted, and they work on part of the cells. Chemotherapy is like an atom bomb going off in your body. It goes after the cancer cells, but unfortunately, it goes after a lot of other cells that are not cancerous like your GI tract, your bone marrow and your hair follicles. Targeted therapies, which tend to be oral therapies, go after parts of the cell that are mutating and sometimes not turning off or turning on too much and not undergoing cell death or apoptosis.

So, this is a way to actually target instead of seeking and destroying, we're actually targeting those cancer cells. Unfortunately, these cells get smart and they end up with a resistance against certain types of drugs. So, it's really fascinating. And I think in the next five years, it's going to be amazing actually what comes out not just for breast cancer, but a lot of other tumors also.

What would you say is the most important information for patients to consider when taking these drugs? 

Ask questions, educate yourself. No questions are too dumb. No questions are too small. And the other thing is, [when] people that attend a conference like this, [they] tend to be people that are in the know. I really worry about our underserved population.

I'm in Southern California [and] we have a huge homeless population, who's doing screening mammograms on those women? Who are taking care of those women when they're diagnosed, if they ever get diagnosed with breast cancer? So, I really worry about the underserved population. Someone that's embarrassed to say, ‘Hey, I don't have the money for my copayment.’

Now, someone talked about these drugs are $10,000 a month and I know that from a personal experience, so you think about 10% of that, that's $1,000. Now it's $12,000 in a year, and people are embarrassed to admit that. Other patients are the frontline and they want it, but I think as nurses, oftentimes we have to sit down and have that conversation. You know, this is a lot of money. Can you afford it? It always makes people uncomfortable to talk about money, but I think it's a big reality and it's becoming more and more of a reality depending on health care choices.

What advice would you give patients on CDK 4/6 inhibitors that may want to seek alternative treatment due to side effects? 

I think support, support, support, [and] meeting other people with breast cancer. And then talking to your physician, when you get diagnosed with breast cancer you have a whole team to work with. We have a multidisciplinary breast clinic so other patients see the surgeon, the radiation oncologist, the pathologist and the oncologist. And actually, we have the nurse practitioner who does breast cancer survivorship all in our multidisciplinary.

So, you have that opportunity to ask a lot of questions. It's really hard in the beginning because you don't know what to ask. And so, it's a difficult thing. But then questions start to formulate, and you start to be able to reach out and talk to people.

Articles

As CDK 4/6 inhibitors become a bigger part of the treatment of breast cancer, CURE® sat down with clinical nurse specialist Patricia Jakel to discuss the essentials about the drug.
 

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