Our MBC Life

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The first days, weeks, and months after being diagnosed with MBC can feel like you’ve been dropped into a dangerous and alien landscape, one whose inhabitants speak a new and confusing language. Numb and bewildered, you face a mountain of medical decisions—each of them seemingly high stakes.

If that sounds all too familiar, take a deep breath. Our goal for this third episode in our 3-part series for newly diagnosed patients is to help our listeners: 

1. Understand the Basics of their diagnosis

2. Make Informed Decisions about the tests their doctors order—and understand what the results mean

3. Feel Confident and Empowered to ask their doctors and other medical providers questions and to advocate for their best treatment

OMBCL senior producer Martha Carlson began by asking newly diagnosed MBC patients about what was most difficult with their medical care. The responses shaped this episode because what she heard back touched on everything from hearing the news to treatments to tests. Martha turned to leading medical oncologist Rebecca Shatsky, MD from UC San Diego Health for her take on these real-life, patient-focused topics. Dr. Shatsky not only demystified doctor-speak, she gets into the details of first steps and first tests for MBC subtypes, the differences between CTs and PET scans, what blood biopsies and tissue biopsies tell our oncologists and so much more. Because few things connect us better than sharing our stories, Martha also asked experienced MBC patients a single question: What do you wish you knew when you were first diagnosed? Throughout the episode, we hear from experienced patient advocates Dr. Kelly Shanahan, Joan Mancuso, Sheila Johnson, Marissa Holzer, and Ashley Fernandez. 

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Candid and emotional, this interview with Michelle Anderson-Benjamin, who was diagnosed first with early-stage breast cancer during the pandemic and then, soon after completing treatment, with metastatic breast cancer, brings our 3-episode series for those newly diagnosed with MBC into the realm of advocacy.

Michelle shares her experiences as a health care professional who looked around and found that not only were resources lacking, her own doctors couldn't show her how her path might look. This is a candid conversation about seeing shortcomings and taking action to make things better for yourself and for those who come after. For Michelle, that meant incorporating the training from advocacy organizations like For the Breast of Us and Living Beyond Breast Cancer into her own organization, The Fearless Warrior Project.

OMBCL co-hosts Nancy Roylance, Ashley Fernandez, and Martha Carlson sat down with Michelle to learn about her challenges processing and growing through this diagnosis. Her story of resilience and action will resonate and inspire.

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Hearing the words “you have metastatic breast cancer” is devastating. Whether your diagnosis comes de novo or months, years, or even decades after treatment for early-stage breast cancer, there is no way to prepare for the terror, anger, despair, and sense of freefall that follows. It’s no wonder that the phrase “emotional rollercoaster” comes up so often when MBC patients describe the experience.

OMBCL co-hosts Nancy Roylance and Ashley Fernandez sat down with oncology social worker Lisa Nelson to to get her take on the emotional and mental health challenges of processing the diagnosis—and how working with an oncology social worker can help. Lisa also shared some of the other resources and strategies that patients can use to keep their balance.

Next, we joined a group of newly diagnosed patients for a free-ranging and frank discussion on what it’s like to be diagnosed with MBC. These courageous and generous women share both  the struggles and challenges of their new reality, and how they are finding support, balance, and even hope.

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Welcome to the Meditation Mondays series, created with MBC patients in mind and designed for people who want to assist their body's natural tendency to repair and heal. It's not a substitute for medical treatment, but a compliment to it. More and more people find that using their minds in this way helps them relax, feel stronger. And it seems that when you take a more active role in your health, you generally feel better and do better.

Inspired by a very enthusiastic response to monthly meditation sessions from one of SHARE’s MBC support groups, this episode kicks off our plan to release sessions recorded over the last year. These sessions are on average  20-25 minutes long and will be released monthly,  on every third Monday.  Our meditation sessions are led by Barbara Chutroo,  an MBC patient herself and a member of the group. 

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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A diagnosis of Stage IV Metastatic Breast Cancer is typically the (or one of the) most significant traumas a person and their loved ones will experience.  Rather than an immediate death sentence, strides in cancer medication and research means that many will live for years after receiving this terminal diagnosis. Thus, patients and their families may begin to wonder, "what do I/we do with the time afforded to me?" and “How can I/we help others living with MBC now and in the future?”  One answer to these vitally important questions is to dedicate time and energy to advocacy.  This episode includes patient advocates, Dr. Amy Beumer, Janice Cowden, RN, Stephanie Walker, RN, Rod Ritchie, Dr. Rosemary Carrera, and Miranda Gonzales, sharing how they have found purpose in the midst of adversity as well as representatives from Living Beyond Breast Cancer (LBBC), Cathy Ormerod, and Metavivor, Dan Cramer and Tami Bowling, sharing about ongoing advocacy opportunities.  What will YOU do with the time you have on this earth?  Listen for ideas and a very specific call to action at the end of the episode from the guest producers, Abigail Johnston, Esquire, Director of Mentorship with Project Life, and Lesley Glenn, Founder and CEO of Project Life, a virtual wellness house for those living with MBC, their loved ones and allies.

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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In this episode of our Road To A Cure series, we talk with oncologist and researcher Dr. Erika Hamilton about the practice-changing developments of the past 15 months. This is a timely discussion as research continues to catch up to need in our lives with metastatic breast cancer. 

2022 brought the big news that an anti-body drug conjugate, Enhertu, was delivering results in people with what was then known as HER2-negative breast cancer. Suddenly the term HER2-Low was everywhere. Of course, the news in 2022 didn’t stop with Enhertu and here we talk about how the big developments of last year are continuing into 2023. We find out what is coming in each subtype, where there are challenges, and what research is making news right now.

Dr. Hamilton is the Director of Breast Cancer and Gynecologic Cancer Research at Sarah Cannon Research Institute, as well as a partner with Tennessee Oncology PLCC. She currently serves on ASCO’s Cancer Research Committee as well as the 2023-2025 Scientific Committee Co-Chair of the ESMO Breast Cancer Meeting.

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Our guest today is Jean Sachs, Chief Executive Officer of Living Beyond Breast Cancer, who’s overseen and grown the impact of LBBC for nearly three decades. She joined LBBC in 1996 as its first Executive Director and was named CEO in 2008. During that time, LBBC has become a national force in breast cancer patient support and action. Jean’s focus on inclusivity, whether by race, age, geographic location, gender, has meant that LBBC is among the most welcoming patient-focused nonprofit organizations in the United States.

And for people living with metastatic breast cancer, LBBC has become synonymous with that most-important quality: Community. That’s because LBBC’s annual Conference on Metastatic Breast Cancer is one of the largest, if not the largest, gatherings for women and men living with MBC. This year’s attendance expectations are for 500 in-person and 1500 virtual! The conference began in 2006 and this year LBBC breaks the rules again by making the conference fully hybrid, with one full day of only virtual workshops and gatherings, followed by a weekend of simultaneous fully virtual and in-person conversations, lectures, exhibitor booths, and opportunities to connect both online and in-person.

Happening from April 26 to the 30th, LBBC’s annual conference on metastatic breast cancer brings in experts like Nancy Lin, Don Dizon, Kelly Grosklags, Kimberly Curseen, and more. But, as Jean herself shares, the connections formed in virtual chat rooms and in-person are also part of its history. The LBBC MBC Conference is the birthplace of MetUp, the site of Hear My Voice advocacy training (alums include Julia Maues, Janice Cowden, and Terlisa Sheppard), and where lasting connections that shape how we talk about MBC are formed.

We are so delighted to have Jean with us to talk about Living Beyond Breast Cancer and this year’s conference.

Sprinkled throughout the episode are the voices of our patient advocate friends Stephanie Walker, Terlisa Sheppard, and Kate Pfitzer.

Look for more information about  LBBC here
To register for the 2023 LBBC MBC Conference click here

More info about the show and past episodes is available on our website: www.ourmbclife.org

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We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Inspired by a very enthusiastic response to monthly meditation sessions from one of Share’s MBC support groups, this episode kicks off our plan to post these recorded mediation sessions on the OMBCL website. 

April Pichon, Oncology social worker at Houston Methodists Cancer Center, and Barbara Chutroo, long-time meditator and social worker, join OMBCL co-hosts Nancy Roylance, Victoria Goldberg and Miranda Gonzales in an exploration of how meditation and mindfulness can help MBC patients find calm amid the stress of living with the disease. You’ll also hear participants from Share’s Monday night MBC support group reflect on the group’s meditation sessions, which are led by Ms. Chutroo--an MBC patient herself and a member of the group. And we conclude with a 20-minute guided meditation created with MBC patients in mind.

While meditation and mindfulness have increasingly become part of popular culture, the actual practices can be intimidating and even mysterious to the uninitiated--or, worse yet, one more thing to add to the already long to-do list. So, think of this podcast as a chance to hear different perspectives and approaches, some practical suggestions for getting started, and a candid discussion of the benefits and challenges of these practices. Most of all, it is an invitation to “join” our guided meditation, and maybe embrace some calm along the way. 

Below are some meditation and mindfulness resources recommended by this episode’s guests. They include apps, meditation organizations that offer online and offline sessions, classes and retreats, and other resources Needless to say, this is a tiny sample of all that’s available. So, keep looking until you find what resonates with you and unlocks your own experience of inner peace and joy.

Meditation and Mindfulness Apps

Insight Meditation Timer  (free)  https://insighttimer.com/

Calm www.calm.com

Headspace www.headspace.com


Organizations, teachers, or websites with comprehensive resources

Insight Meditation Society www.dharma.org  Online classes, resources and events; virtual and in-person retreats in Barre, Massachusetts.

Spirit Rock Insight Meditation Center www.spiritrock.org  Online classes, resources and events; virtual and in-person retreats in Woodacre, California.

Tara Brach Meditation www.tarabrach.com  Recorded meditations and talks; live meditations on youtube and facebook; strong emphasis on self-compassion

Dharmaseed www.dharmaseed.org  Extraordinary collection of recorded meditations and talks by many teachers along with other meditation resources.

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

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Breast cancer is no laughing matter, but that does not keep our guests in this episode from using and sharing humor to cope with their diagnosis. 

For our first guest, NYC actress and comedian Jenny Saldaña, a life-changing diagnosis spurred her to write the play “Pink,” a dramedy that includes some of the more humorous moments of life with breast cancer.

 Khevin Barnes, who lost his first wife to ovarian cancer and then was diagnosed with breast cancer himself, was inspired to write a song and then an entire musical exploring the dark comedy side of male breast cancer. Our podcast includes an excerpt from his musical—as well as Khevin’s introduction to “laughter yoga.”

Stand-up comedian and MBC patient Elaine Price has found that while her cancer-related jokes can make some “cancer civilians” in her audience uncomfortable, her fellow cancer survivors/thrivers are definitely in on the joke. And she believes that humor is an important way of bringing the reality of MBC out into the open.

OMBCL hosts Konner Kienzle and Victoria Goldberg put this question to each of our guests: “Do you think that laugher can be good medicine?”  The consensus is an emphatic “Yes.” Or, As Elaine puts it:  “It’s right after chemo! You bet!…I think one of the reasons I’m still standing is my ability to flip things on their head and find meaning.”

OMBCL is grateful to each of our guests for the gift of laughter. And we hope our listeners find many more reasons for smiles, chuckles, or belly laughs throughout the holiday season and 2023.



Ticket Link to Jenny Saldaña's new one-woman show "Desperate Digital Dating Diary" (January 15th @The Triad Theater in NYC):

https://www.instantseats.com/index.cfm?fuseaction=buy.event&eventID=3BD1A14E-E1FA-6764-B6BDE6940FE8FD30


Music Credit:

Saxophone Jazz Theme by:

Bensound https://www.bensound.com/

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

Remember you are not alone.

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When it comes to metastatic breast cancer, clinical trials are the way we find new drugs, better therapeutic targets, and, hopefully, more time. There are many issues with how clinical trials are designed, who they recruit and who is excluded, but one of the most difficult to confront at least here in the US has been the failure of the entire system to address how Black women and men with MBC are so much less likely than non-Black patients to be on a clinical trial. 

Systemic racism has many tentacles and today’s Black advocates and their allies are forcing transparency and change when it comes to clinical trials. This episode of Our MBC Life puts the focus on what we know is happening, why it happens, and actions to break down barriers to the best possible care.

Co-hosts Sheila Pettiford, Martha Carlson, and Natalia Green, who also serves as OMBCL Executive Producer, took the Metastatic Breast Cancer Alliance BECOME project as the jumping off point. Led by advocate Stephanie Walker, BECOME found that only 36% of Black survey respondents received as much information about clinical trials as they wanted even though over 80% were likely to consider joining a trial. This failure to communicate is one of the first barriers that needs to be overcome, but Black women and men with MBC were also found to have significant concerns around access and trust that differed from non-Black survey respondents. Stephanie is also the lead of the Black Wo(Men) Speak Symposium, held the day prior to SABCS on December 5, which brings together Black-led advocacy organizations, with the MBCA, oncologists, industry, and nonprofits to address these issues head on. In this episode, Stephanie Walker talks about the BECOME findings and OMBCL uses her words to guide our interviews.

We also talk to Rev. Dr. Tawana Davis for the Black patient perspective on clinical trials and MBC. Rev. Dr. Davis was on an immunotherapy clinical trial for about 1 year, ending in 2018, following her initial treatment. Our last guest is Valarie Worthy, MSN, RN, a Patient Navigator at Duke Cancer Institute, co-founder of TOUCH, The Black Breast Cancer Alliance, and 23-year cancer survivor.

There is a lot of thought-provoking conversation in this episode. Make sure to follow the links below to learn more about our guests and their work.

BECOME Project and Stephanie Walker

https://www.mbcalliance.org/projects/become/

https://www.cancer.net/blog/2022-10/working-make-cancer-clinical-trials-more-inclusive-qa-with-researcher-stephanie-walker

https://www.mbcalliance.org/black-women-speak/

Rev. Dr. Tawana Davis

www.thedrtad.com

www.soul2soulsisters.org

www.carriestouch.org

Valarie Worthy, MSN, RN

https://touchbbca.org

http://www.dukecancerinstitute.org

We’re so happy you joined us! If this conversation resonated with you please share it with someone who might need it. Don't forget to like and subscribe here to follow us on your favorite podcast platform so you never miss an episode. You can find more episodes, resources and ways to get involved on our website Our MBC Life. Have a topic you’d like us to cover? Email us at [email protected]. And don’t forget to follow us on our socials @ourmbclife. 

Remember you are not alone.