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Living with MBC

My Cancer is HANGRY. Is MBC Really that Complicated?

In the Metastatic Breast Cancer (MBC) community we introduce ourselves to each other with an “elevator speech”. It’s pretty similar to any breast cancer person’s bio: name, age diagnosed, sub-type, surgeries/treatments, and years since diagnosis. But in the MBC world our portfolios get fuzzy, long, and complicated. Most people in the MBC world are Stage 0, 1, 2, or 3 breast cancer patients who then have an MBC recurrence (usually bone/organ) – sometimes months, a few years, or even decades later. They have already been through the emotional and physical hells of diagnosis, surgeries, and treatments just to be told it was all for naught. They are not cured. They now have a terminal illness. Then you have this group of people who find out they have Stage 4 MBC from the beginning, or de novo – a true “Go Directly to Jail – Do Not Pass Go, Do Not Collect $200” experience.

That’s me, I’m Erica Griffiths. I was 38 years old and breastfeeding my then-16-month-old daughter, Izzy. I was diagnosed with ER+, PR+, and HER2+ (triple positive) breast cancer tumors that covered about 8 cm in my right breast, a 1.5 cm lesion on my liver, ate a hole through my L3 vertebrae, and eventually was found on the neck of my right femur. I had a quick and complete response to 4 rounds of TCHP (Taxotere, Carboplatin, Herceptin, and Perjeta). No surgery. No radiation. My treatments were not curative, but palliative, and we would keep the cancer at bay as long as possible until newer and better treatments were available, or until I had no options left. But at that moment I was considered NED (no evidence of disease) because no cancer was big enough to show up on scans. NED meant that for well over 2 years the drugs were working and my cancer was taking a giant nap. I still lived scan to scan, uncertain when my cancer would awaken, what damage it would do, and how it might shorten my life.

During this period of “calm”, I did everything I could to learn about my disease and people like me. I went to conferences to hear about the newest treatments and began using my voice to educate others about MBC. I wanted to be a patient advocate not only for myself but tried to help my friends find resources, second opinions, and troubleshoot side effects. I learned quickly the complexities of this disease and would keep mental records of friend’s profiles for future reference. I’ve always had a great memory, a passion for connecting with people, and a knack for matching needs with possible solutions. Leave it to cancer to help me find life direction (insert 50 sarcastic emojis).

A few months after my second cancerversary, I found a lump in my right breast. Could this be my first progression? My oncologist and I agreed that we wanted this sucker out. I had a lumpectomy and we sent a sample off for genomic testing. My oncologist and I played a mental ping pong game of various next steps. All this became a moot point when the pathology came back. The tumor was triple negative. This switch means the hormones and HER2 receptors that had driven my MBC disease was not feeding this new cancer in my breast. Was this a new primary cancer or a mutated recurrence? We would likely never know. My oncologist suggested adding chemo. We had to assume I still had triple positive MBC in my body. We would have to treat everything at once, hoping we nipped this local recurrence, keeping the difficult to treat sub-type from metastasizing. I sought out a second opinion of a well-known triple negative breast oncologist and researcher and we decided on an older chemo – CMF (cyclophosphamide, methotrexate, and 5 fluorouracil) for 6 rounds, while continuing my regular MBC infusions and injection. Let’s just say it was a LONG day in the chemo chair.

I lost about 30% of my hair in the end, had NED scans after chemo, and celebrated with a 10-mile walk/run. My genomics testing on the tumor pointed to a daily pill called Afinitor that targeted 2

mutations. We would add this drug to my maintenance regimen after my trip to Tampa. On the second day of vacation I had a seizure. A SEIZURE. A brain MRI showed 2 small lesions on my brain. Breast cancer lesions. My medical team back home grew to include a neuroradiologist and a neurosurgeon. I underwent stereotactic radiosurgery (SRS – or as I like to call it “Zap-a-dee-doo-dah”) to the 2 small spots. That very same week I found another breast lump, right next to where the triple negative tumor had been. It seemed impossible – I just finished chemo. I had a NED scan. Although I never knew the sub-type of my brain lesions – I just knew in my heart that this new breast tumor was going to be triple negative again. We decided on another lumpectomy and more genomic testing. I was right – it was triple negative. But this one was different. This one was metaplastic. I know, I didn’t know exactly what the hell it was either except metaplastic was found in <1% of ALL breast cancer cases. Of course. My cancer was officially HANGRY. It’s been creative in finding new pathways to survive. The genomic testing pointed to Afinitor again. We decided on whole right breast radiation but we followed a new protocol being tested in Europe. High dose, once a week treatment for 5 weeks, with a booster 6th session for the aggressive metaplastic. Two months after my brain zaps I finally got good news – both spots drastically shrank. I just finished breast radiation. I have CT scans next week to find out if everything below the neck is also behaving. Not everybody’s cancer is as snobby as mine but it goes to show how complex this disease can be, the need for precision medicine, how much further we have to go, and the importance of MBC research.

Written by Erica Griffiths, Tigerlily MBC ANGEL Advocate

Does having stage 4 breast cancer not make me worthy of Love?

As hard as it is to admit, I have not been successful in finding love in a mate in my adult years. Until my adult years, I had no issue in finding myself being involved in committed relationships. As an adult in my 30’s all that changed for whatever reason, be it the on again/off again relationships, dating “forever” without a true commitment, failed relationships and the list goes on. I find myself being single more days than ever. Lately, I have started to question about my breast cancer diagnosis keeping me from being in a committed relationship or being worthy? Does sharing my story scare men off? Do men look at my boob status and fray away? Is my zest for life too much for one to deal with it? When I think back, it has been since 2012 that I have been in a committed relationship. I think I am a loving person; I think I can attract love and reciprocate it back. In my mind, I often worry, if I am worthy enough to have a supporting mate, my equal, my guy, my dude, my protector, my spiritual partner, someone to walk through the storms of life, a vacation bae. I ponder, if I will leave this earth being in a committed relationship. I know God did not put us on earth to do life alone. I know more single women like myself than I know those in a committed relationship. Is it that men are not interested in committing anymore? Are women to strong, independent, set in their own ways? I am far from being lonely because I am ok with eating alone, but I do long for companionship, someone to vent to, someone who will let me be me, without judgement and with all the joys of a mate.

Is desiring a mate taboo? I honestly do not have any answers to my own questions or even know, if I know all the dynamics of dating. Should I try a dating site, frequent more clubs, wear a sign that I am single, ask friends to introduce me or do as I have been doing and wait for God to send me my Boaz. While I wait, I will continue to Live.

As I remind myself daily that I am worthy, I ask God to send me someone who is most worthy, deserving love that I must give. Please God, let my worthiness of love speak even when I am silent, let my worth shine in my steps and glow my skin. Please God, allow the words that slip of my tongue sound like music to someone’s ears that shout worthiness. I hope the love and passion that I have for serving others bounces a bright light to guide my King to his worthy Queen.

Written By: Angela Jersi Baker, Founder of Angel in Disguise, Inc and Tigerlily MBC ANGEL Advocate

Worth reading about the findings published in SABCS 2019 for the treatment of HER2-positive metastatic breast cancer

Health is like a gift from God and those who have this blessing must try hard to preserve and keep it because nowadays one of the most serious problems for humans is dealing with various diseases especially different types of cancers. A group of diseases which involve abnormal cell growth with the potential to invade or spread to other parts of the body is called cancer. Breast cancer can be occurred by a variety of causes and is one of the most common types of cancer among women. Unfortunately, the number of people facing breast cancer is increasing significantly in the twentieth century; in other words, according to statistics published in 2019 about 12% or 1 in 8 women suffer from breast cancer in US.

But this does not mean the end for patients and people who suffer from these types of diseases must not lose their hope because many research, trials, and meetings are done to find an effective solution to cure or even prevent the progression of cancer.

 The San Antonio Breast Cancer Symposium (SABCS) is a five-day scientific conference. A large number of international audience such as basic scientists, physician-scientists, clinical investigators, and breast care providers, also patients who seek an exchange of new information in experimental biology, etiology, prevention, diagnosis, and therapy of premalignant breast disease and breast cancer attended in SABCS. The mentioned conference started with the presentation of two clinical trials that showed the treatment options for people with HER2-positive metastatic breast cancer and innovative discovery for them.

Dr. Sherene Loi is the head of the Translational Breast Cancer Genomics and Therapeutics Laboratory at Peter MacCallum Cancer Center in Melbourne, Australia. She moderated the presentations and she thought that the new discoveries showed a great result for HER2-positive metastatic breast cancer patients, with and without brain metastasis.

Many clinical trials are not open to patients with brain metastasis. But what distinguishes The HER2CLIMB trial from other experiments or trails is that it was open to patients with brain metastasis, or the presence of breast cancer in the brain, in addition to those without brain metastasis. The use of tucatinib to placebo in combination with trastuzumab and capecitabine in patients with metastatic HER2-positive breast cancer has been compared in this trail. “The results in patients with brain metastases are encouraging and show that we are gaining ground on this difficult-to-treat subset.” Said by Susan G. Komen Scientific Advisory Board Member.

Dr. Lisa Carey was involved the HER2CLIMB trial. In addition she said that tucatinib (added to capecitabine + trastuzumab) appears poised to become the preferred next-line therapy after [trastuzumab emtansine] T-DM1.

 Dr Loi said that there is much-needed treatment for patients with brain metastasis also there are convincing data are so she concluded that treatment for patients with brain metastasis would be practice changing.

When the findings were released in SABCS, the results of HER2CLIMB study were published In the New England Journal of Medicine simultaneously.

In mentioned conference lecture was presented about the DESTINY-Breast01 clinical trial. The safety and efficacy of [fam] -trastuzumab deruxtecan which is an antibody drug conjugate for HER2-positive metastatic breast cancer patients who have received two or more prior therapies was tested in this trail. Therefore during this trail patients received an average of six prior therapies. The results show [fam]-trastuzumab deruxtecan as a potential new option for those patients who will likely have exhausted most, if not all, standard therapies for HER2-positive metastatic breast cancer.

Finally one of the scientists who involved in mentioned trail and had a presentation in SABCS was Dr. Ian Krop. His opinion about the findings was that only two clinical trials introduced at SABCS and both had remarkable implications for patients with breast cancer for especially for those who have not notable cure or treatment yet.

Written by Negar Pourzadi, Tigerlily Foundation Volunteer

“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.

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.


It all started with a lump…

It all started with a lump…

At the age of 31, I was diagnosed with stage 1b intraductal carcinoma.  It was life shattering.  I underwent six months of chemotherapy, a bilateral mastectomy with reconstruction, and healthy dose of PTSD.  For the five years following, I diligently went to check ups, followed my doctor’s advice to the letter, only to be told at my five year checkup that the breast cancer had returned, this time in my bones.  I was now stage IV and terminal. 

At the time of metastatic cancer diagnosis, I had never heard of it.  Even as a cancer survivor, it had never been explained to me that it could return in different areas of my body.  My oncologist at the time foolishly used the word “cured” on more than one occasion.  You can imagine how devastating this diagnosis is to someone who felt relatively confident in her education on breast cancer. 

It has been five years since that horrible day. At 41,  I can honestly say I am fully living my life with metastatic breast cancer.  It has now metastasized to my lungs in addition to most of the bones in my body.  It is painful and exhausting, yet I am here.  I celebrate that daily.  I am a single mother to my 8 year old son and thankfully, I am still able to work full time.  This is not the life I thought I would be living, but it is my life now and I’ve made peace with that.  In between being a mother and working, I dedicate a lot of time to writing about my cancer experience for my blog, The C Life, and various publications I’ve been lucky enough to be included in.  I’ve recently become an advocate for AdvancedBreastCancer.net, hoping that others finding themselves in my shoes won’t feel as alone as I felt, especially in the beginning. 

My greatest lesson in all of this is that there is still a very real, fulfilling, life to be lived with this diagnosis.  I’ve always been a realist, but I do have hope for a long life.  By adding my voice to some of the very powerful ones speaking out, we are already seeing some change in the way MBC is treated and discussed.  We have more to do…and I’m here for it. 

Written by: April Doyle, MBC ANGEL Advocate

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

Clinical Trials and the African American Community: Why we need to participate?

Taking part in a clinical trial involves trust.  Unable to take comfort in substantiated data and results, the need to trust the medical team administrating the trial is critical.

That trust is what helped keep, Thomas Goode an African American, alive when he was diagnosed with multiple myeloma at age 34. Goode participated in clinical trials where he received access to experimental drug cocktails.  He said of the trials, which he feels were key to his recovery, “I never knew anything about clinical trials, but a lot of my trust and faith was in the doctor,” he said. “I trust you, doctor, whatever you say.’”

For many African Americans a lingering distrust of medical experimentation is based on a history of unscrupulous clinical trials. Angela Marshall, an internal medicine doctor and board member of Black Women’s Health Imperative, said she sees a “lack of excitement among minority communities for clinical trials, coming from a mistrust of the medical community.”

Many black patients often cite the infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, in which researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the progression of the disease.  Other high-profile examples include Henrietta Lacks, a poor black tobacco farmer whose cells were taken without her knowledge in 1951. Henrietta’s cells became one of the most important tools in medicine and immortalized today are called the “HELA” cells.

Nearly every advance in cancer today was first evaluated in a clinic trial.  To understand how a smaller minority group responds to a drug, researchers might have to enrol more patients than what would be a nationally representative sample, but African Americans are massively under-represented in trials.  Statistically only 1%-3% of African American women participate in clinical trials even though their risk of getting cancer is the same or higher than other groups.  Clinical trials should reflect the population it will serve. 

My own journey as part of a clinical trial started after experiencing a burning sensation in my chest when I sneezed. I had no lump and no feeling that anything was wrong but after a mammogram and several other scans I was diagnosed with Stage IV Breast Cancer – which had already spread to my liver and ribs – at the age of 43.

Since my diagnosis I have received six different treatment plans and my doctor has offered me many different treatment options.  I have been lucky to benefit form a strong physician/patient relationship and as a result I learned about an ER+/HER2+ clinical trial that other patients were doing well with.

My life expectancy was 3-5 years when I was diagnosed with MBC.  Because I was given the opportunity to be included in the tireless research to find a cure, I am still here nine years after my initial diagnosis.  I want a cure.  I want to see increased financial resource being channelled into research and I don’t want my daughter to ever have to worry about this disease in her lifetime.

It is clear that some serious trust building initiatives need to happen so that there is a marked increase in the numbers of African Americans overcoming long-seated trust issues and making the decision to take part in clinic trials.  Even though there is a recognized research need for a more diverse ethnic sample in trials, opportunities to take part in life saving experimentation are withheld from desperately ill black patients.  African American patients are more likely than white people to have other conditions which could complicate research results and trials often preclude patients with other conditions, seeking participants with the least amount of complications.

I decided to join a clinical trial because I think it’s important for the African American community to see how vital clinical trials are to medical advancement. Without investment into improving trust issues, exclusion and other barriers to the inclusion of African Americans such as finances, cultural differences and transport there will continue to be a lack of diversity in clinic trials and a real risk of drugs coming onto the market before they have been properly tested with minority groups.

Living with Metastatic Breast Cancer

My name is Angela aka Jersi Baker. I am 48-years-young. I am battling this disease for the third time and am now living with Stage IV/metastatic breast cancer. In 2003, at the age of 32, I was diagnosed with DCIS breast cancer, which is the non-invasive form of breast cancer. My cancer was identified by my primary care physician who I was seeing that day to get birth control. After a mammogram and biopsy, it was confirmed that I had breast cancer. As a result, I had a mastectomy, reconstruction and took Tamoxifen for 5 years. I then went back to my “normal life” as a single mom, working and looking for a career change after having completed my master’s degree.

In 2010, I noticed a small bump on my skin, on my left breast. It didn’t hurt so I ignored it. A few months later during a routine checkup I mentioned it to my surgeon. My surgeon immediately started taking pictures and said that she would like to remove it. Once it was removed the pathology report later deemed it was in fact cancerous. Following the procedure, I had several rounds of radiation, and again I returned to what I thought was my normal life.

In 2012, my “normal life” took on an entire new meaning. I had a bad cold, and a weird noise, I could hear faintly coming from my chest, (although I thought everyone could hear it) so I went to urgent care. The technicians took x-rays and sent me home with a prescription. The next day when I returned home from work, there was a message on my answering machine from the hospital, asking me to give them a call. I failed to return the call because I was feeling better. The following day there was a follow up message stating “Ms. Baker, please give us a call we want to discuss your x-ray.” That got my attention, and I returned the call. I was told that they see some concerns on my x-ray and would like me to follow up with my oncologist. I made an appointment with my oncologist, I went alone, and he told me what he thought, but arranged for further test to confirm his suspicions. His suspicions were confirmed to be stage 4 metastatic breast cancer. On the day that he delivered the news that I have metastatic breast cancer, which was in my chest walls, spine, my mom was there to support me. I had no idea what any of this meant but asked I “what now,” and he said he would like to start me immediately on monthly shots of Faslodex and Xgeva.

I honestly didn’t know what to think or feel. I just knew I wanted to “fix it” and get back to life. My son was then away at college and telling him was my only concern. I also was set up to again go through about 24 rounds of radiation. I was truly on this journey alone up until this point, because I didn’t know all the questions to ask, any resources available to me, or anyone who looked like me and had the same walk. In 2016, because of nerve damage, uncomfortable feelings, internal itching and more, I decided to explant. I proudly call myself the #unoboobgirl. Last year, after being NED (no evidence of disease) for 7 years, my scans showed a reoccurrence and I have now added Ibrance, an oral pill taken for 21 days and 7 days off. After hearing about my reoccurrence, I worried briefly, and then remembered the Bible verse I live by Hebrews11:1- “Faith- The hope for things which are not seen but true.” My faith in God is strong, and I know without a doubt He’s GOT me! Although I am often tired, and have daily aches and pains, my mission and grassroots non-profit keep me busy and remind me of the people I need to help, inspire and support.

Written By: Angela Jersi Baker, MBC Tigerlily ANGEL Advocate