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Metastatic Breast Cancer

“Why did I become an Advocate?” – Sheila McGlown, Tigerlily MBC ANGEL Advocate

Often times I’m asked, “Why did I become an advocate?”  And often times I ask myself the same question “WHY did I become an advocate?” Proverbs 31:8-9 says “Open your mouth for the mute, for the rights of all the unfortunate.  Open your mouth, judge righteously, and defend the rights of the afflicted and needy. 

            Initially, when I was diagnosed with metastatic breast cancer (MBC) in December of 2009, I had no clue about anything breast cancer.  Even though my mom died of metastatic breast cancer in 2004, I guess I just blocked it out of my mind.  Five years after my mom’s death I was diagnosed with MBC, and I was alone trying to navigate through an unknown world and I had no clue how I would make it.  For nine months I knew of no support groups, any other women, or black women for that matter that was living with MBC.  Those nine months got me thinking, as long as I’m alive NO woman/man should fight breast cancer alone. 

            I learned about racial disparities in the African American community from reading up on breast cancer and the effects it has on my community.  I didn’t know racial disparities existed at first, because I had never experienced it.  I’ve gotten the best quality of care and I have the most amazing medical team.  But the fact is that black women are dying at a faster rate than any other race, and when I found that out, I decided then to use this as my platform.  We have to work together to change this and the only way we can do this is by continuing to lift our voices not just in October but all year round. 

            Change is needed and we can’t enact change until we get to the root of the problem.  We need more African American women to speak up when they feel they haven’t been treated as equal.  Be your own advocate.  If something is wrong don’t stop until someone listens.  Often times African American women are dismissed by doctors and are not taken seriously about their symptoms.  Make doctors listen.  Make doctors hear you.  We are not faking. African American women are worth fighting for too.  We are worth the research and the clinical trials that go into having more efficient and effective medicines so that we can live longer.  Twenty-five percent of African American patients are even offered Herceptin.  Standards of care should be the same for every patient regardless of a person’s race.  This was mind boggling to me because it’s like are we still living in the dark ages where everyone’s lives don’t matter. 

Advocacy for me means lifting my voice and shouting from the mountain tops.  Being an integral part of the Tigerlily Foundation, and the Fireside Chat being held at the San Antonio Breast Cancer Symposium in December 2019 is very important to me because we are raising our voices against racial disparities.  There will be black women representing 22 cities in which there are the largest number of women of color being diagnosed with breast cancer.  Talk about representation!  A disparity is defined as a great difference.  It’s time we continue to recognize racial disparities exist and as a community we need to work together to end this great difference.  Tigerlily is doing just that – working together with organizations to bring awareness so that black women aren’t forgotten.  I want breast cancer organizations to establish a dialog with MBC patients to find out the needs of an underserved community.   I want African American women to know there are women who look like them out there advocating for them and lifting our voices.  I want African American women to know they are not alone.  We see the statistics and we hear your silent cries and we are working diligently to change those statistics.  By participating in the Fireside Chat, I am able to lift my voice and I able to make them hear me.  I want them to see my cries, to feel my soul and to feel my pain.  We can continue to talk about it, but are we really taking a stance against racial disparities.  Do we have both feet on the ground ready to run the race and see it through?  My legacy is to change the thoughts and minds of the breast cancer community.  I often said “Let me have a seat at the table”.  After years of having seats at tables where people are listening but aren’t hearing me, I decided I’ll build my own table and I’ll invite you to my table, and I do have extra folding chairs. 

Written By: Sheila McGlown, Tigerlily Foundation MBC ANGEL Advocate

Sheila McGlown is one of 11 MBC Angel Advocate attending Tigerlily Foundation’s Young Women’s Metastatic Breast Cancer Disparities Fireside Chat at the 2019 San Antonio Breast Cancer Symposium (SABCS) on the morning of December 10. The event is designed to foster transformational dialogue engaging young women in the African-American community from 22 cities identified as locations having a high rate of breast cancer diagnosis among women of color.

Caregiver Perspective: Caring for my daughter with metastatic breast cancer

I’m often asked, “How do you do it”?  What they are asking is, how do I deal with the fact that my daughter Erica has terminal breast cancer.

When Erica was diagnosed with Stage IV Metastatic Breast Cancer, she was breastfeeding our beautiful granddaughter, Isobel. We had no family history of breast cancer. Her lump appeared to be a very non-worrisome clogged milk duct. But after we found out Erica indeed had breast cancer, a few days later (on my husband’s and my 25th wedding anniversary), we learned that the cancer had spread to her liver and bones. The reality of what all this meant was overwhelming.

Since Erica lives in Delaware and my husband and I live in Tampa, my first thought was just to get to her. I canceled all summer travel plans and I flew up in time for her first round of chemo. I’ll never forget sitting with her at the infusion center and realizing the profound paradox of watching poison drip into her newly installed port and being almost giddy at the thought that her cancer cells were dying, at the exact same moment realizing with every motherly protective instinct that I had, I should be ripping out that tube as it was poison!

The highs and lows of having a loved one with breast cancer continued when Erica’s very first scans showed that the chemo had worked, and the cancer was sleeping. This was the same month that everyone was celebrating pink ribbons and awareness for breast cancer. I bought into it and gave money to Komen, bought pink socks for everyone, and wore my pink ribbon.

Erica went 2 ½ years with scans showing No Evidence of Disease (NED), which I suppose created a false sense of security in us. She continued to work a full-time job, took care of her then 3-year-old Isobel and partner, along with her home and dog. Then one day she found another lump. This one turned out to be a completely different sub-type than the first. It was triple negative breast cancer and even more deadly.

As I stressed about her getting in to see a new specialist, my own health took a toll. My blood pressure was constantly elevated, even on medication. I was diagnosed with reflux issues and stress-induced asthma. I started to feel the frustration of not being there for my baby as often as I wanted even though I was traveling to be with her every couple of months. Erica had her own additional stress as her demanding job became even more demanding and she had another round of chemo on the horizon.

After Erica’s second round of chemo and clean scans from the neck down, she and her family flew to Florida to visit Disney and have a much-needed vacation. They were here for less than 24 hours when Erica had a grand-mal seizure, which proved to be brain metastasis. That meant a quiet couple of days until she could fly home and prepare for brain radiation. And then she found another lump. Another lumpectomy. Another completely different diagnosis of triple negative metaplastic breast cancer. Less than 1% of breast cancers are metaplastic. Because she couldn’t drive after having the seizure, I was traveling to be with her. She was graced with friends and neighbors who volunteered to drive her to work and back, and moms at Isobel’s pre-school took Isobel back and forth to school.

Through it all, if anything, our already close family became even closer. My other daughter Heather who lives in Virginia and has two little ones of her own would drive up and help Erica once chemo started. Our other daughters, Jackie and Emily who were in grad school would visit when they could. Our other daughther Melissa fundraised for Metavivor, and my husband Jack, would either travel with me to be with Erica, or stay home to manage the house and the pets. Our lives became like a fine oiled machine of educating people about Metavivor, raising money whenever we could, supporting Erica and Izzy, and trying to hang onto our faith that everything would be okay. 

Erica has become an incredible advocate for others with metastatic breast cancer. She has a Facebook page with close to 2,000 followers. She uses that page to educate and update others about living with metastatic breast cancer. She encourages friends in support groups and runs her own local group. I am so incredibly proud of her. I am also grateful she feels comfortable sharing late-night calls with me as she tells me about another friend who has just died or who has entered hospice. Grief is never easy, but for her it has become a daily way of life. My heart breaks for her with every new loss, while my heart freezes in fear knowing that she could be next.

I’ve learned to be grateful for every day with Erica. I am grateful for every person who sincerely offers up prayers and good thoughts. I’ve learned that I am not as strong as I thought I was, but I will always be strong for her.

Written by: Robin Bethune, Erica Griffiths (MBC Angel Advocate) Mother

Tigerlily Foundation’s Young Women’s MBC Disparities Initiative

On March 20, Tigerlily Foundation hosted a Metastatic Breast Cancer Disparities Listening Summit, a historic initiative that is the first of its kind. The MBC Listening Summit elevated the conversation surrounding the disparities faced by African American women, a population that has a high breast cancer death rate, and an increased risk of developing breast cancer at a young age. Thus, the disparities are two-fold among African American women living with metastatic breast cancer – disparities as young women and disparities as women of color. The approximately 100 attendees were a mix of young women, patients, caregivers, community leaders, creators, healthcare providers, advocates, researchers and policy makers. Special thanks to our partners, including Pfizer, Lily, Celgene, the Metastatic Breast Cancer Project at Harvard University, Project HUMBLE, Howard University, and the IRIS Collaborative. See the program here.

The Summit was an all-day event that served as a day of strategic planning among patients and stakeholders in the metastatic breast cancer community. It was a unique event because it provided a platform for women of color living with metastatic breast cancer to share their experience about living with this disease, and to voice their unique needs, as well as their concerns about misperceptions related to living with metastatic breast cancer. Moreover, metastatic breast cancer patients were speaking directly to medical researchers, healthcare professionals, policymakers and the media – an opportunity that does not readily exist as part of the current norm.

The insights gained from this Summit included strategies to increase awareness about metastatic breast cancer and about the unique needs of this subgroup of breast cancer patients. Also, this Summit led to recommendations for developing culturally-appropriate tools for educating and empowering women of color on metastatic breast cancer so that they can be advocates in the community.

Shonte Drakeford, a metastatic breast cancer patient and advocate, has shared the following:

“The MBC Disparities Listening Summit was absolutely amazing. It was captivating, invigorating and motivating. As someone who is African American living with MBC, this was my first time ever meeting so many of color with this disease. I truly thought I was all alone. This was a space that is needed and I hope to see more targeted programs like this because this helped me truly realize how many disparities we do face versus other races who has MBC, we have more poverty that impacts our daily lives, lack of access, lack of quality of care, etc. I do like the call to action portion of the Summit, it focused on the “HOW” rather than us talking. Thank You Tigerlily for hosting this event.” 

Sheila McGlown, a metastatic breast cancer patient and advocate, has shared the following:

“One major misperception and barrier to educating young women of color on metastatic breast cancer is the belief that “young women don’t get breast cancer.” We need to continue to dispel the myths of breast cancer throughout the African American community and it starts with useful, though-provoking listening summits like this.

I participated in the “Collaborate to Accelerate Impact: Metastatic Breast Cancer Project” panel along with three fellow metastatic breast cancer patients and advocates. We are all Ambassadors for The Metastatic Breast Cancer Project, which is part of Count Me In, a nonprofit organization that brings together patients and researchers as partners to accelerate discoveries in cancer research. We shared our personal journeys with metastatic breast cancer and how it has affected our lives permanently. We highlighted that the life expectancy for metastatic patients is 3-5 years, and that metastatic breast cancer patients will always be on treatment, as there is currently no cure for this disease. I shared that I have responded well to treatment and that I have been living with metastatic breast cancer for 9 years. As I listened to the other panelists, I realized that all of our experiences with metastatic breast cancer were different but so similar. We all agreed that we were not going to let metastatic breast cancer keep us from living our lives, and that we needed to help others. So, we took steps to become advocates for our community despite our diagnosis.

From the other panels at the Summit, I learned that organizations understood the urgency surrounding the African American population and metastatic breast cancer. In Jackii Wang’s remarks on behalf of Congresswoman Debbie Wasserman Shultz, she urged everyone to engage in their own communities. She had us write down what we saw in our neighborhoods when we growing up. One common thread is that there weren’t doctor offices located near or close to our neighborhoods. This important revelation demonstrates a potential underlying factor that contributes to disparities.

Markette Sheppard’s keynote conversation with David Lacks, grandson of Henrietta Lacks was particularly touching because he talked about how his grandmother’s cells are still being immortalized today for cancer research. The key takeaway from his message for me was that research is important and that we should participate in clinical trials so we are no longer underrepresented. Also, he mentioned that they are having a conference to commemorate Henrietta Lacks 100th birthday this year. Henrietta’s legacy will continue on forever and she is one of the reasons I am participating in a metastatic breast cancer clinical trial today.

We need more listening summits like this and I’m thankful to Tigerlily Foundation for organizing such an amazing event. This was a great way to place a spotlight on the dire attention needed to address the disparities that African American women face as young women, and as women of color living with metastatic breast cancer, and to cross share information about the different strategies to reach this vulnerable population. It was such an honor to be amongst such an engaged audience of young adults, from all different races, who were eager to learn how they can better help the African American community. We received many comments from participants that they really didn’t know about how metastatic breast cancer affects our lives. We even received an invitation from HUMBLE (Howard University Metastatic Breast Cancer Learning Experience), to speak to students at Howard University.

The questions that were raised during the Summit made us think about how are we going to enact change in our various communities. What do we really want to change and improve on? We know that racial disparities exist but we also know that within the African American community obesity is a problem, and that obesity is a risk factor for breast cancer. So how should we address this? Further, not getting annual mammograms and not seeking follow-up care are also problems that we prevalent in the community. How do we enact change from within? I just truly believe these important topics are not talked about enough and that there isn’t sufficient emphasis on understanding why African American women die at a much higher rate of breast cancer. I think it’s up to advocates like us to make sure we are not forgotten. Our voices matter so let’s keep using them to reach audiences that have never been reached before and that audience is the African American community. Let’s have the chat!”

Our next step, based on the recommendations from our March MBC Disparities Listening Summit, is to engage young women of color who are usually not “at the table” in advocacy and/or at scientific conferences.  With this in mind, we will hold an MBC Listening Fireside Chat at the San Antonio Breast Cancer Symposium (SABCS) in December.

MBC Disparities Listening Fireside Chat at SABCS:

At this event, we will give young women of color a “seat at the table”, by giving them a platform at an international scientific meeting – SABCS. This  MBC Disparities Listening Fireside Chat at SABCS will convene a diverse representation of people from communities of color, impacted by MBC.  This event will be the first of its kind historically, bringing together such a diverse range of people from at an event like SABCS, to discuss the challenges and gaps affecting this community and how to bridge them.  Before the SABCS event, we will 1) train individuals who are new to advocacy.  After the MBC Disparities Listening Fireside Chat, advocates who are new to SABCS will 2) attend various SABCS meetings, providing them with additional “seats at the table”, and 3) they will share their perspectives via social media, blogs, and video while at the event and beyond.

Join us at Tigerlily Foundation’sYoung Women’s Metastatic Breast Cancer Disparities Fireside Chat at the San Antonio Breast Cancer SymposiumDecember 10, 2019 7:30 A.M. – 11:00 A.M.

Join us for a dialogue engaging the African-American community, centered on understanding the gaps, misperceptions and barriers to educate young women of color on metastatic breast cancer (MBC). We invite young women, patients, caregivers, community leaders, creators, healthcare providers, advocates, researchers and policymakers to join us in partnership for a day of bringing together African American young women from communities facing disparities, scientists, researchers, advocates and industry at the largest global gathering focused on breast cancer.


Why I started my Grassroot Non-profit Organization Angel in Disguise inc. after my Metastatic Diagnosis

In 2011, I became a metastatic breast cancer patient after an initial diagnosis in 2003. I had no clue what it meant to be “metastatic” and everything that was attached to this word. My doctor told me I would begin monthly shots, and in my mind that was it. I continued my daily schedule of working long hours and what I thought was a normal life. One day, I decided to attend a support group. No one in the support group looked like me in skin color, and they were quite older and seasoned. I immediately thought this group wasn’t for me. But I heard one lady say “honey why are you still working?” I thought to myself – Is that possible, not to work, as a single parent with a mortgage, bills, and other responsibilities. I was clueless of what that looked like, but I was eager to find out.

Now let’s fast forward to 2014. I had figured out how to no longer work at my 9-5 job, but I wasn’t sure how to spend my days. I mostly helped family and friends get things done while they worked, but it wasn’t enough. When one of my friends suggested I start an errands business, I envisioned what that would look like, set rates, and created Angel in Disguise Events – a concierge service, which included transportation services. Once I created this new “job” for myself I started handing out business cards, and included transportation services.

One day, I received a phone call to drive a breast cancer patient to 3 appointments, as her children were working. The lady advised she did not have the means to pay me. I told her it was ok, and I would be there to serve her. On this day, we spent 5 hours together – I drove 90 miles and went to 3 appointments with her. Before she got in my car she didn’t know me and I didn’t know her. By the time I dropped her off and returned home, the light bulb came on – I thought “If she doesn’t have money to pay me, there must be other patients like her.” I told the universe I would start a nonprofit organization to provide complimentary transportation to cancer patients, and in September 2015, Angel in Disguise Inc. became an official 501(c)3 in Charlotte, NC. We refer to our patients as our #VIDAS, and we bridge several gaps that they face. Transportation is one of the biggest needs among breast cancer patients – transportation to all cancer-related doctor appointments, treatment, surgery, medicine pickup, and light errands. This need is especially critical when you do not have a ride or when you are unable to drive yourself. I personally drive our VIDAS, and wait with the patient. This way, the patient has companionship, and given that we are both breast cancer survivors, there is a common understanding. Additional gaps that we bridge for breast cancer patients are aftercare meals, care bags and peer support.

Today, Angel in Disguise Inc. is a grassroots nonprofit. It is bigger than I had imagined and I will continue to help fellow breast cancer survivors have a positive and supportive experience though their breast cancer journey.

Written by: Angela ‘Jersi’ Baker, Tigerlily MBC ANGEL Advocate

Roll with the Punches

Christine Hodgdon was diagnosed with de novo metastatic breast cancer (MBC) in April 2015 and became heavily involved in the MBC community after attending a Metavivor advocacy event on Capitol Hill to push for more MBC research funding. She went on to become a leadership volunteer for the Hear My Voice program with Living Beyond Breast Cancer (LBBC) and plans to become an ANGEL advocacy volunteer with the Tigerlily Foundation. Christine has also contributed several articles to various organizations to raise awareness about MBC and serves as a peer mentor for the Young Survival Coalition and LBBC. Before cancer, Christine loved to travel and was a Peace Corps volunteer in Guatemala from 2011-2013; she had a career as a conservation biologist working to save habitat for endangered species. She is planning to use her science background to create an open-access online forum that provides the most recent and scientifically accurate information about breast cancer and its treatments- including MBC clinical trials and drugs and therapies in the pipeline.
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In the summer of 2015, I was having what can only be described as an identity crisis. With just three words “you have cancer,” I knew I was facing months of chemo, a surgery that could result in the removal of one or both of my breasts, and weeks of radiation. It happened so quickly and it was so surreal, that I often felt like I was playing a sick joke on my friends and family when I told them the news. This new identity of breast cancer patient was thrust upon me.

Over the next month, chaos ensued as is typical with a cancer diagnosis. A PET scan revealed that I not only had breast cancer, but I also had thyroid cancer. The good news was that thyroid cancer was very slow growing and easy to treat, so I dutifully assumed my new role as a double cancer patient.

The PET scan also revealed a suspicious lesion on my lung, which was the last and most challenging hurdle of my diagnosis. If the biopsy was positive for cancer, this would mean that my breast cancer had metastasized and my life expectancy would be significantly reduced. I knew that only 6-10% of patients were diagnosed de novo metastatic, meaning from the beginning, but I also knew it was definitely a possibility.

As much as I wanted to be in that 90% of patients, the results showed HER2+ cancer cells in my lung, which meant I was indeed a stage IV metastatic breast cancer (MBC) patient. I was 34 years old, in the prime of my career, and training for a triathlon; in just 3 short weeks, I was forced to put that life aside and assume several new roles: breast cancer patient, thyroid cancer patient, and a person with a terminal illness.

I would like to think I masterfully and gracefully accepted these new identities, but it was a messy process. My lung eventually healed and I underwent 4 grueling months of weekly chemotherapy, then endured a thyroidectomy and lumpectomy with several complications, and lastly 5 weeks of radiation.

At the end of all the treatments, another scan revealed that not only had the original tumors found in my breast disappeared, but the spot on my lung was also gone. I had had a complete response to my treatments and I now showed “no evidence of active disease” (NEAD). NEAD is what all stage IV patients strive for; it is the best-case scenario after being diagnosed metastatic. I resisted all the other identities forced upon me, but cancer survivor was an identity I embraced completely.

Cancer gave me a glimpse beyond the smoke screen of security that nothing bad would ever happen to me or to my loved ones. It taught me that feeling “safe” is merely an illusion. None of us are immune to the pain one can experience in a lifetime, whether it be cancer, divorce, or loss of a job. Any number of bad things can happen, and the only thing we can control, is how we choose to respond to the adversity.

I choose to live my life and not succumb to the fear. I’m planning a massive 40th birthday party (still 3 years to go!), which would make me a 5-year survivor. I feel lucky to have lived such a full life filled with lots of travel, an amazing career, and an abundance of love and support from friends and family. But there is still so much I want to do. My story is not yet finished, and I’m excited to see where it takes me.