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Takeaways from SABCS Session: Diversity in Clinical Trials with ANGEL Advocate Erin Perkins

Read more to learn about some insights, reflections, and opinions of patient advocates who attended SABCS. We’re sharing a little about each Tigerlily ANGEL Advocate, their story, and why they decided to participate in SABCS 2021. 

Erin Perkins was diagnosed January 28th, 2021, at age 34 with invasive ductal carcinoma Stage 2B while nursing her son. She was also triple-negative.  Triple Negative Breast Cancer (TNBC) is one of the most aggressive types of breast cancer, and is diagnosed often in younger Black women.  In spite of the diagnosis and the treatment she faced, while undergoing sixteen chemotherapy infusions and a bilateral mastectomy, Erin knew that she wanted to learn more about breast cancer and be a voice for other patients.

Advocacy is in Erin’s heart—through and through. And it has been, even prior to her breast cancer diagnosis. Erin’s advocacy is woven deep into the fiber of her being and she leverages her power and her privilege through her voice. Erin attended multiple sessions on the first day of SABCS, one of which was Trust in Science and Healthcare: Diversity In Clinical Trials. Here are some thoughts and notes that Erin shared with us from her first day at SABCS.

Tigerlily Foundation: What were your main takeaways from this session? 

Erin: Minority populations are sometimes not informed of clinical trials. Patients are not necessarily unwilling, but unable to participate. However, this time impacts our ability to engage in trials to contribute to treatments that work better for our bodies, and time is a disparity! We need to hold researchers accountable to change, and accountability is needed so that money is not prioritized over patient’s needs.

Tigerlily Foundation: What new information did you learn that you want to learn more about? 

Erin: I am very interested in learning more about the Diverse Clinical Trial Act by the American Cancer Society.

  

Tigerlily Foundation: What part of the continuum of care was addressed?

Erin: Practitioners must invest in cancer care programs that adequately receive the patient. The keyword is “receiving”. Patient perspective was important with a cross-sector partnership. Addressing research laziness, language gaps, and literacy issues i are important. One of the speakers brought up a common issue for patients of color contributing to worse outcomes. That is the belief, “I don’t want to be screened because I don’t have the resources to treat it if I have it [breast cancer].” There is a need here for comprehensive resources. 

Tigerlily Foundation: Were disparities discussed or addressed? How so?  

Erin: YES! This session was 100% about the disparities in healthcare and ideas for how to work towards filling in these gaps.  

  

Tigerlily Foundation: Was your perspective influenced in any way after the session?  If so, how?  

Erin: I just think of how the panelist brought up a reason some people in underserved populations (largely due to systemic racism) almost have no choice at better outcomes; thinking of how the panelist spoke about a person who would not get screened because they could not afford (because of a myriad of factors) to get it treated anyway, so they might as well not even know. What a motivator for us all to listen and learn and work together to create pathways for all to receive equal access to the care we all deserve.  

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This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.

The session was moderated by Tigerlily Foundation’s President, Maimah Karmo; and Dr. Charles Perou, May Goldman Shaw Distinguished Professor of Molecular Oncology Research, Professor of Genetics & Pathology at the Lineberger Comprehensive Cancer Center, University of North Carolina.

Speakers for this SABCS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.

A Closer Look at SABCS with Maricia Cole, Tigerlily ANGEL Advocate

Maricia Cole was an otherwise healthy young mother when she was diagnosed with Stage 2 HER2+ breast cancer at the age of 36. She is now in remission following chemo, surgery, and radiation and she wants anyone listening to know they are not alone in the fight against breast cancer.

Along with several other Tigerlily ANGEL Advocates, Maricia attended the SABCS Special Session: Trust in Science and Healthcare Co-Hosted by Maimah Karmo and Dr. Charles Perou. This session featured speakers: Dr. Erica Stringer-Reasor, Dr. Eric Winer, Dr. Amelie Ramirez, Dr. Melissa Davis, Sophia George, Dr. Lori Wilson, and Patient Advocates: Thelma Perry Brown, Ysabel Duron, Ashley Dedmon, Darcy Babage. We asked Maricia to share her thoughts and notes from the session from her point of view as a Patient Advocate.

Tigerlily Foundation: Maricia, tell us why were you interested in participating in SABCS?

Maricia Cole: I’ve heard so many good things about SABCS and wanted to see for myself. I want to be a voice for young Black Women with early stage breast cancer so they know they are not alone and that there are resources for them.

Tigerlily Foundation: That’s amazing! What are you looking forward to learning at SABCS?

Maricia Cole: I like statistics. Numbers don’t lie. In general, I’m looking to learn more statistical information about breast cancer patients

Tigerlily Foundation: If you could summarize this session briefly, what would you describe as your main takeaways?

Maricia Cole: This session really highlighted how trust in science can be built. The discussion was very powerful from our very own Maimah Karmo as a Moderator, as well as from Physician and Breast Cancer Survivor herself, Dr. Lori Wilson, and patient advocates like Na’Diah Smith and Ashley Dedmon. The session was great. One of my main takeaways was how important it is for everyone to have equitable care. Equal care = equal outcomes, thus reducing the huge gap in mortality rates of minority communities.

Tigerlily Foundation: So what did you get out of that session?

Maricia Cole: The background was about how we can come to a solution to improve trust in science. What do we do next?

Tigerlily Foundation: What parts of the continuum of care were addressed in this session?

Maricia Cole: Education, diagnosis, and survivorship were addressed

Tigerlily Foundation: Did you find that disparities were discussed or addressed? How so?

Maricia Cole: Yes, it was a large part of the conversation. Especially financial disparities.

Tigerlily Foundation: Was the presentation inclusive or represent voices and issues from patients of color? Young patients? Patients living with MBC (Metastatic Breast Cancer)?

Maricia Cole: Yes, the physician who began the session, Dr. Lori Wilson was diagnosed with MBC, so she is a patient as well as a physician. The patient advocates were young and of color. Inclusivity was prevalent in this session.

Tigerlily Foundation: Was your perspective influenced in any way after the session?  If so, how?

Maricia Cole: Yes, my perspective was influenced in a positive way to continue the fight. Because we truly have so many people who are on the same page and ready to do the work in order to improve the overall trust in science. Especially in clinical trials, thus reducing death rates among minority communities for patients with breast cancers.

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This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.

Speakers for this SBACS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.

A Closer Look at SABCS with Erin Perkins, Tigerlily ANGEL Advocate

Erin Perkins was diagnosed January 28th, 2021, at age 34 with Triple-Negative Breast Cancer (TNBC) with invasive ductal carcinoma Stage 2B while nursing her son. While undergoing 16 chemotherapy infusions and a bilateral mastectomy, Erin knew that she wanted to learn more about breast cancer and be a voice for other patients.

Advocacy is in Erin’s heart—through and through. And it has been, even prior to her breast cancer diagnosis. Erin’s advocacy is woven deep into the fiber of her being and she leverages her power and her privilege through her voice. Erin attended multiple sessions on the first day of SABCS, one of which was Trust in Science and Healthcare: Advancing Health Equity Built on Trust. Here are some thoughts and notes that Erin shared with us from her first day at SABCS.

Tigerlily Foundation: What was the background information you received that was helpful in attending this Special Session?

Erin Perkins: I loved Dr. Deborah Stroman’s allegory about perspective. We need to ask “What is wrong with the lake? How can we fix the water?” Because people continue to be harmed and die unnecessarily.  

Tigerlily Foundation: There is a lot of information included in these sessions. What new information did you receive that inspires you to research more after SABCS?

Erin Perkins: STEM programs to provide diversity in health systems. Also, in her first point on how to decrease, reduce, and eliminate the disparities, Dr. Stroman said to “pay attention to NIH’s Unite Initiative”, and I do not know what that is. I found the mention of understanding bias at a younger age to close the gap earlier coupled with the mention of STEM programs at earlier ages in diverse communities helping give access and interest for BIPOC to want to become Oncologists as a profession, as representation is needed. (Less than 3% of Oncologists are Black).

Tigerlily Foundation: What was the impact on breast cancer patients, or the importance for breast cancer patients in this series?

Erin Perkins: Cadence of mobile clinics to visit underserved communities, as well as finding a way to close the gap for access to treatment for these patients to be able to finish courses of treatment and have better overall outcomes. Aliya suggested asking for patient feedback after receiving services to help care practitioners do better in the future.

Tigerlily Foundation: Were disparities discussed or addressed? How?

Erin Perkins: YES! This session was 100% about the disparities in healthcare and ideas for how to work towards filling in these gaps. To bridge the gaps we need patient-centric care. Practitioners need to understand and acknowledge the distrust, and frame research in ways that benefit the patient.

Tigerlily Foundation: Was the presentation inclusive or represent voices/issues from patients of color? Young patients? Patients living with MBC? Additionally, how was your perspective influenced by this series?

Erin Perkins: Yes! I was excited to tell my math educator friend in Seattle about how important getting Black students involved in STEM can be, and it just made me hopeful for upcoming change. I also felt this way because the panel was there addressing so many Doctors and researchers, letting them know that these healthcare gaps stem from systemic racism, and as a result, must be intentionally noticed, listened to, and dismantled.

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Thank you to Seagen, Pfizer, and Puma Biotechnology for sponsoring this content.

Speakers for this SBACS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.

A Closer Look at SABCS with Kawana Rucker, Tigerlily ANGEL Advocate

Throughout SABCS week, we’ll be sharing some ideas, reflections, and opinions of patient advocates who attended. Each evening, we’ll share a little about each Tigerlily ANGEL Advocate, their story, and why they decided to participate in SABCS 2021.

Kawana Rucker is a two-time Breast Cancer Conqueror, diagnosed in 2018 and again in 2019. Her diagnosis was Stage 1 Triple Positive Breast Cancer both times. She is a patient advocate and Board-Certified Wellness Coach. In addition to being a Tigerlily ANGEL Advocate, she is also on the Community Council Board at Glimmer of Hope Foundation. Kawana advocates for others and helps others advocate for themselves throughout their breast cancer journey.

One of the sessions Kawana attended was the SABCS Special Session: Trust in Science and Health Care. Co-Hosted by Maimah Karmo and Dr. Charles M. Perou, Speakers included Dr. Lori Wilson, Dr. Deborah Stroman, Dr. Eric Winer, Dr. Amelia Ramirez, Patient Advocate Ysabel Duron, and Dr. Olufunmilayo Olopade. We asked Kawana some questions about the special session she attended, her thoughts, and how her perspective was influenced.

Tigerlily Foundation:  Kawana, why were you interested in participating in SABCS?

Kawana Rucker: I’m interested in learning about the new research, new studies and sharing my experience as a breast cancer patient and advocate. I’m looking forward to learning more about the CAM therapies that support breast cancer patients.

Tigerlily Foundation: What was the main subject matter and what were your takeaways?

Kawana Rucker: Health Equity. Breast cancer Care is not equitable across all health care. Structural racism must be addressed from the top in order to impact the patient. Fewer than 3 percent of oncologist are black. If all patients get the same treatments in clinical trials the outcomes are the same among races.

Trust in health care is built by the data collection, conversation and when patients are allowed to tell their story. Presenting Cancer teams to patients build trust. The greater the respect in the patient physician relationship, the greater the trust. It is important to Educate, Advocate and conduct research in a culturally relatable way.

Tigerlily Foundation: What was the background information on this topic?

Kawana Rucker: Despite the advances in cancer treatment, patients in the BIPOC community are still dying a greater number’s, more likely to have advanced cancers, less likely to be treated fairly, treated at later stages and adversely impacted racism in care. Less research and trials including women of color.

Tigerlily Foundation: What was new information or new things you learned about that you might want to research later?

Kawana Rucker:

  • CDC Cancer training for breast cancer patients.
  • Ways to educate and engage the BIPOC community about breast cancer within the community and make it culturally relatable.
  • Triple negative breast cancer research genetic disposure Amount of money allocated to clinical trials for BIPOC.

Tigerlily Foundation: What are some questions that you feel like should be considered further pertaining to this subject?

Kawana Rucker:

  • How often is breast cancer talked about in schools, homes, churches in the BIPOC communities?
  • How can funding be allocated to BIPOC breast cancer patients to participate in clinical trials. This includes the drugs, housing, food etc. if they must travel to participate?
  • How do we make breast cancer education, research, and advocacy relatable to the communities in which we serve?

Tigerlily Foundation: What part(s) of the continuum of care was/were addressed?

Kawana Rucker: Treatment, disease progression, treatment resistance, investments, funding, clinical trials, clinical trial availability.

Tigerlily Foundation: Were disparities discussed or addressed?

Kawana Rucker: Yes, Discussion on inequity in cancer care, research, participation in clinical trials.

Tigerlily Foundation: Was the presentation inclusive or represent voices/issues from patients of color? Young patients? Patients living with Metastatic Breast Cancer (MBC)?

Kawana Rucker: Yes, the panel consisted of Women of Color, non-white men, indigenous women, and a Black Physician living with MBC.

Tigerlily Foundation: Was your perspective influenced in any way after the session? If so, how?

Kawana Rucker: This session was phenomenal. It highlighted many of the disparities many of us face as BIPOC in the health care system and particularly the breast cancer community. This session has empowered me to think of more creative ways to insist breast cancer literacy is taught in schools. The more people know about cancer earlier in life the more knowledge they will have if someone they know is diagnosed with cancer. Also highlighted some areas that I can assist my breast cancer patients as a health coach.

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This content is sponsored by our Partners at Seagen, Pfizer, and Puma Biotechnology.

Speakers for this SBACS Special Series Included: Lori L. Wilson, MD, Associate Dean of Diversity and Faculty Development, Howard University College of Medicine, Deborah Stroman PhD, UNC Health Equity and Social Justice, Lisa C. Richardson, MD, Director, Division of Cancer Prevention and Control, CDC, Olufunmilayo I. Olopade, MD, FACP, Director, University of Chicago, Daniel Calac, MD, Chief Medical Officer, Indian Health Council, Inc, George Sledge, Jr., MD, Professor of Medicine (Oncology), Stanford Cancer Center, Melissa B. Davis, PhD, Associated Professor in Surgery, Weill Cornell Medicine, Darcy Burbage, DNP, RN, AOCN, Na’Diah Smith, Patient Advocate, Aliya Whipple, Patient Advocate, Lauren Candies Tarpley, AYA Breast Cancer advocate, Published Author, Erica Stringer-Reasor, MD, Associate Professor of Medicine, Director Breast Cancer Program, University of Alabama – Birmingham, Eric P. Winer, MD, Chief, Division of Breast Oncology Center, Dana-Farber Cancer Institute, Amelie G. Ramirez, Dr.P.H., M.P.H., Chair, Department of Population Health Sciences, UT Health San Antonio, Elena Martinez, PhD, Professor UC San Diego Moores Cancer Center, Sophia George, PhD, Research Associate Professor, University of Miami Cancer Center, Thelma Brown, Patient Advocate, Ysabel Duron, Patient Advocate, and Ashley Dedmon, Patient Advocate.

Chemo to Double Mastectomy in 6 Weeks

By Ashleigh Armstrong 

With chemotherapy done, I now had to face my next hurdle, a double mastectomy. I was given 6 weeks in between chemo and my surgery to heal and regain some strength. It was such a strange feeling to have nowhere to be. No doctors to poke and prod me. No labs to be drawn.  

A week after chemo was done, I was given an ultrasound and told that I still had half of the tumor left. It went from 2.4 cm to 1.2cm, exactly half gone. This meant that my body was responding to chemo. There was a possibility, however, that the cancer was still alive and well in my body. This idea was running rampant through my mind. 

I was told by my oncologist early on that if chemo didn’t do the job the first time that we’d do it again. I was devastated when I learned that half of the tumor was still there because I knew that meant more chemo, once surgery was done and I wouldn’t achieve PCR.  

PCR stands for Pathological Complete Response meaning your body had a complete response to chemo and there is no cancer left. It is the main goal when going through chemo. In every cancer group I’m in I watched many, many women celebrate this milestone after surgery. I decided to keep this information mainly to myself. I didn’t need anyone else worrying or adding to my already consumed mind. 

Everyone was worried though, just about other things. They kept asking me how I felt. “You’re going to lose your boobs. That must be so hard.” 

I don’t know why but for some reason it just didn’t seem like the end of the world. My boobs or getting rid of the chance of it coming back and having to do this all over again? It didn’t really seem like there was a decision to be made. The latter was the only option. I knew it would have some effect on me eventually but during the waiting process it just didn’t seem to hold any space in my head.  

My wonderful aunt, Laurie, flew in from Washington to help take care of me for the following weeks. She even quarantined at her niece’s house for 2 weeks before coming to mine because of Covid.  

On August 12th, 2020 I went in for my double mastectomy bright and early in the morning. I was allowed to have Lissa come with me but only for one hour during pre op because of Covid. That one hour turned into 3. They were behind on getting started and couldn’t find a vein for my IVs. It turned out that chemo had destroyed my veins. Something I didn’t even know was possible. It took about an hour and a half and an ultrasound machine to get a good vein then the rest of the process was able to continue. Lissa was asked to leave and I was swiftly put under.  

I woke up and felt groggy but fine. I was fed a graham cracker, monitored for an hour and sent home. This part is still crazy to me but I digress.  

The next few days were a blur. My aunt, Laurie, kept me on top of the pain meds and I just slept the days away. By day 4, I felt well enough to not need the pain meds anymore and only took them to sleep going forward. I was up and walking around, hanging out with the twins on the couch and moving around slowly but like normal. Things were looking up.  

We had to rewrap my dressing and I saw myself for the first time. I had expanders underneath the skin so I wasn’t completely flat. I was actually excited by how much skin they were able to save instead of being sad by how I looked. I texted friends saying “I think I’ll be able to be a D again one day.” I look back now and laugh at that.  

The weeks passed by and life went back to normal. I was able to lift my arms again. I wasn’t sore anymore and it was time for my aunt to go home.  

2 days later I got the call from the surgeon with the tumor results. I was a ball of nerves. I thought for sure I was going to receive the news that there was residual cancer at the time of surgery and I was going to have continue with chemo for 12 more weeks. I had Lissa next to me, it was a video call so I didn’t have to be alone for this one.  

Almost in slow motion the surgeon said “You had a pathological complete response. There was no sign of cancer left. I’m not recommending anymore chemo.”  

Lissa fell to the floor in tears. Then she stood up and cheered and clapped. I calmly said “I can’t believe this, thank you!” I stayed calm. I just didn’t believe it. If Lissa wasn’t there, I wouldn’t have believed it.  

It’s been nearly 3 months since my double mastectomy. I’m in the early stages of reconstruction. Currently they have just expanded my skin. All reconstruction stages are behind due to Covid. My hair is growing back just as thick as it was before. I’m receiving Immunotherapy infusions every 3 weeks to lower my chances of a reoccurrence and overall, I am feeling great.  

There is an end to the nightmare that is breast cancer. I’m approaching my 32nd birthday and I plan to cherish it like I never have before. If nothing else, I hope that my story can raise awareness especially for young women everywhere. Breast cancer can happen and it does happen but it’s not the end of the world.  

 

Blessings,  

Ashleigh Noelle 

it rolls off the tongue…

By Erin McDermott Perkins

Advocacy: “public support for or recommendation of a particular cause or policy”.

From the beginning of my memory I have been a recommender, a friend who comes alongside all who need a friend. The thing I was born to do is advocate. I knew it first as a college student when my heart longed to be an Invisible Children Roadie. At age 20 I could feel the pull there; to stand with, to speak out, to make change. By 22 I was face to face with sixteen then strangers in the heat of the Southern California summer about to hop on a brand new, donated, entry level, pink seated Fuji road bike, and ride across fourteen states and one province to advocate for Blood:Water. The task of the Ride:Well Bike tour was simple (on paper anyway), to ride our bikes to each established church connection on our route each day, to stop and share the mission of Blood:Water, “to empower communities to come together against the HIV/AIDS and water crises in Africa”. It still rolls off the tongue. By graduation I had my 1998 Nissan Sentra packed to the brim with duffle bags that held all my belongings, and I was driving to Nashville so I could intern for Blood:Water. Then, came interning for Mocha Club, then leading another Ride:Well Bike tour from sunny San Diego (the wrong way) up the west coast to Seattle, again to advocate for Blood:Water.

It was on that second bike tour where I met my now husband. I still say now that I tricked him into believing I was athletic by being the leader of that bike tour, when really I was just being myself, an advocate (and someone who is a very slow cyclist who loves taking breaks and sometimes gets in the support van, because we can still advocate from the van, let’s be real). By 24 I had moved to Seattle and started interning at Rwanda Partners when one of my fellow interns told me about an organization I had heard of briefly but hadn’t looked into: World Relief. By 25, I was married to my biking buddy, and interning at World Relief Seattle. I became more of my advocate self there at World Relief, working to “empower the local church to serve the most vulnerable”, and I connected into the sweet world of beautiful people who come to the United States seeking refugee from reasonable fear of persecution and danger. The obviously Biblical work of welcoming the “stranger” into a foreign land expanded my heart and my hope to advocate for refugee policies and communal/Church support. It rolled off the tongue.

By 31 I had become a mother, and moved to North Carolina from Seattle, and found that International Justice Mission now had opportunities to be on local volunteer teams. There was one right near me, in Raleigh, so I immediately applied because I wanted to join in their mission of protecting people in poverty from violence as they partner with local authorities in 24 program offices in 14 countries to combat trafficking and slavery, violence against women and children, and police abuse of power. By 34, I had served on the volunteer team for 2 years and had a second child, I started living through a global pandemic with all of you, and had applied for and been offered the task of being the volunteer team leader for IJM Raleigh. I was so excited at the opportunity as it rolled right off the tongue.

Two weeks after being offered the team lead volunteer position, I was diagnosed with Stage 2, Grade 3, Triple Negative Invasive Ductile Carcinoma Breast Cancer in my right breast. It was 3.6cm at it’s largest, and I was completely at an end of myself. I lived in a daze, convinced that this was a death sentence (without yet knowing I was Triple Negative). I didn’t sleep or eat, breathing got harder. Satisfaction was sparse at best. A sobbing prayer of begging to the God I believe hears me, holding my sons hand, a snuggle. Nothing that used to be able to distract me from pain had any effect on this. I was drowning. I went to the surreal appointments, unable to understand the foreign language of medical jargon, and my husband took notes, neither one of us knew much about what to ask. I got connected to one group on facebook of local ladies with breast cancer, and only after I started chemotherapy, saw them posting about before scans they got to make sure the cancer hadn’t spread, scans I had no idea to ask for. I saw people talking about their ki67 and notingham scale score; I didn’t know what it was or how to find mine. I couldn’t read research at that time either. I couldn’t listen to others talk about Triple Negative. It didn’t fit into my sinking pit of despair. There was no room for it. I believe God protected me from my inability to advocate for myself, and I think one reason is so I can live to advocate for others. I want to come alongside newly diagnosed women, and be their ears and eyes. I want to help them learn this new language that is Breast Cancer, and know their options before they are too deep into things if I can. I want to bear the brunt of the blows of fear, and stand in the gap. I want to learn more about the devastating truths around healthcare disparities, and stand up, stand with, and create change.

By 35 and a half, I became an ANGEL advocate for the Tigerlily Foundation because I believe in their mission to educate, advocate for, empower, and support young women, before, during and after breast cancer, and their vision we seeking to educate and empower women of all backgrounds, including those at heightened risk, those facing health disparities, and those with less access to care. (tigerlilyfoundation.org) It rolls off the tongue.

Martin Luther King Jr. said, “Our lives begin and end the moment we become silent on the things that matter”.

I have walked, following the words of Jesus in the Bible, in love (Ephesians 5:2), and in wisdom (Colossians 4:5) towards whatever things that I see matter to God. I see that He stands with, and advocates for all who need a friend, anyone who is oppressed, forgotten, or estranged, overlooked, underrepresented. God moves in me in this way. He created me to be an advocate, and in humility and Biblical wisdom I go where He sends me…towards the things that matter. It rolls off the tongue.

That Voice In My Head May Have Saved My Life

By Ashleigh Armstrong 

Part 1 

Basketball, dance, work, it never stopped. I am a 31-year old single mother to 11-year old twins. It was business as usual until February 2020, when I felt a hard lump in my left breast. I called to make a doctor’s appointment, but they couldn’t get me in for a month. I thought ‘’if they don’t think it’s a big deal then I shouldn’t either.’’ March came along, the pandemic hit, and the entire world shut down. Suddenly, I wasn’t busy anymore. No more dance, no more basketball, and no more work and I was now at home. I live in Minneapolis, Minnesota and the Governor shut our state down quickly. 

I had a little bit more time to think and to “Google”. Just when I had determined by “Doctor” Google that I absolutely had cancer.  I received a voicemail from the clinic telling me they were canceling all appointments due to Covid. I frantically called back pleading with them to get me in. I knew something wasn’t right. I could feel it. Literally and figuratively. They told me they’d keep the appointment and put a note in that this was for a breast lump. Maybe, they didn’t make the note big enough, I received a cancellation notice 3 more times. I called the clinic 3 more times telling them something isn’t right, I need to get in! Every time I had to wait for a nurse to call back, then I’d explain what I was feeling and they decided it was enough for an appointment. The 4th time must have been the charm. I didn’t receive any more cancelation notices. 

March 30th, 2020, I saw my regular doctor. She examined me and I’ll never forget her reaction, “Wow, that feels pretty large. I’m sending you for a mammogram.”  

April 2nd, 2020, I received my first ever mammogram. There was something there. They sent me across the hallway to the ultrasound room to get a better look. The ultrasound showed a 2.5 cm mass. They decided to biopsy it on the spot. The team was amazing. I knew this even though I couldn’t see their faces or the expressions on their faces that they were all supporting me. Everyone was wearing masks and extra protocols were in place due to COVID19. They did everything they could to keep my mind off of what was happening. We talked about becoming homeschool teachers in the pandemic. I barely felt a thing.  

Once the biopsy was done the doctor reassured me that no matter what they’ll take it from here. That I didn’t need to worry about the next steps. They would handle every part of this process for me. My gut knew right then and there, they saw something.  

April 7th, 2020, I got the call. “You have Triple Negative Breast Cancer. It’s very aggressive. You should prepare to start treatment next week.” I didn’t even know that there were different types of breast cancer. I had so much to learn. 

I was working from home as a result of the pandemic, when I got the call. I emailed my boss and told him I needed the rest of the day off for personal reasons. He asked if everything was alright and I just blurted it out “I HAVE BREAST CANCER. THAT’S ALL I KNOW. I JUST GOT THE CALL. I NEED TO FIGURE OUT HOW TO TELL THE TWINS. TELL MY FAMILY. I NEED TIME.” Like I think any sound boss would, he told me to take all the time I needed. I needed so much more than time. I wasn’t sure what I needed but time just didn’t feel like enough.  

I didn’t even take the time to think, I just started making calls. My adoptive mom first. You see, I lost my biological mom, Char, 10 months before to colon cancer. This just couldn’t be happening to me. I knew it would hit my family even harder after watching my mother deteriorate in 6 months’ time. It had to be done though, it never crossed my mind to go through it alone. One by one, I called those closest to me. After my adoptive mom, Lissa, I called 2 of my friends. They flew to my house. They even showed up with an extra-large chocolate banana malt from Dairy Queen, my favorite. I couldn’t eat though. With them by my side I continued the calls. I was most afraid of calling my grandmother and brother. They both live across the country and they just lost their mom and daughter to cancer. Everyone took it hard.

Probably one of the hardest parts of this journey was the tears everyone else shed on my behalf.  

I met with my oncologist for the first time on April 9th, 2020, just two days after my diagnosis. In those 2 days, I had Googled and Googled and Googled until I couldn’t Google anymore. I knew that Triple Negative meant that the tumor lacked progesterone, estrogen and the HER2 protein so this meant there weren’t any targeted treatments like hormone therapy. What this also meant according to “Dr. Google” was my only option was chemo and surgery. I knew this going into the appointment but part of me hoped for something else.  

My oncologist was a very kind woman. She gave off warm energy. She kept saying I was so young but not to worry, we would fight this. The plan was chemotherapy, two of the strongest drugs, every week for 12 weeks and a new option called immunotherapy starting April 17th, 2020. The oncologist explained to me that as of that moment, she was staging me at 2 but, it doesn’t matter for Triple Negative Breast Cancer because my tumor was a grade 3 and very aggressive so we would treat it aggressively. She asked me to hop on the table for an exam and moved my hair to the side. She told me it was beautiful. I saw her eyes squint. I couldn’t see the rest of her face because of the mask. I asked if I would lose it. She said yes but not for a couple of weeks and for only about a year.  

She explained to me that I would need a port and asked if I knew what that was. I just started crying. I can only guess what she thought my reasoning was but after a minute or so I told her that my mom had to have a port. I was having a hard time separating our experiences. Everything was reminding me of my mother and of her battle.  

I went home, I cried a little more, and then I decided to share my story with the world. Or at least my Facebook friends. I wanted women to know that it can happen even at 31-years old. Even in the middle of a pandemic. Even when you are a single mom, and you don’t have time for cancer. The support was overwhelming in the best way. But again, my heart broke from the pain on my behalf. I felt naked. I felt raw. I felt loved. 

The importance of being in tune with your body, my body was sending signals and it was my Apple watch that helped me make the connection.

By Aliya Whipple

“Hello, Aliya? We found a little cancer.” On January 21, 2020, those were the words I heard over the phone from my breast specialist after having an abnormal mammogram and biopsy. In January 2019, I learned I carried a BRCA2 gene mutation and then on January 28, 2020, I found out I had breast cancer. I was preparing myself to have a preventative bi-lateral mastectomy hoping to never have to hear those words. Let’s rewind.  

Four months before my diagnosis, I had the weirdest experience. In September 2019, my husband bought me an Apple watch for my birthday. After about a month of wearing the watch, I began to feel pain running up my arm to my left breast. I know, it sounds crazy but it’s true. The first time I felt this pain, I was at work sitting at my desk. I felt an electrical shock-like pain go from the tips of my fingers, up my left arm, and then to the left side of my breast. I remember being puzzled and thinking to myself, “Wow! What in the hell was that?” As the weeks went by it happened more frequently and only when I had the watch on. I eventually took the watch off but noticed the area on my left breast where I felt the pain was itchy and hard. Although I knew the signs of breast cancer, I questioned everything about the Apple watch. I asked every person I knew who had one if they had ever experienced this type of pain. I even googled for answers. The response was always no or not found. In the back of my mind, I thought of my BRCA status and the possibility of the pain being breast cancer. I also knew I needed to get back to my breast surgeon’s office to finish planning the preventative mastectomy. My mind was racing. Is it the watch or something else?  

Back to the call. For a moment I hesitated in confusion and said to her, “Wait, whhaaaat…cancer?” And what is ‘little cancer?’ Big or small, I didn’t want it. Never in a million years did I expect to hear those words, but to be honest, deep down inside I wasn’t surprised. I was silent as she explained what the next steps were. “Yes, I’m sorry. We (since all of us were preparing for the preventative mastectomy) definitely weren’t expecting this. It’s Stage 1, Triple Negative. We need to see you in the office as soon as possible. Triple Negative is aggressive, can you come in tomorrow?” The appointment was set, and I was advised not to Google anything. But of course, I did.  

When I hung up the phone, I immediately called my mom and told her of the news. My mom’s response was so energetic and positive you’d thought I told her I was pregnant! Sadly, I wish that was the case although I had my tubes tied years ago. Her optimistic response and positive energy didn’t give me time to be sad. I finished the call with her and then called my daughter in the room to break the news to her. She responded with a smile, “Oh wow, Stage 1 is good mom! It’s early. Listen, you’re not going to die.” How could I be sad with that response? Finally, my husband came through the door on his lunch break. Earlier after speaking with the doctor, I sent him a text asking if he’d come home for lunch. I didn’t want to break the news to him over the phone. I needed to see and feel his response. I wanted to be there to hold him in case he broke down. I wanted him to feel my strength and see that I was ok. I needed him and his strength to hold me in case I broke down. I needed the energy of our love to hold us together when I shared the news. “Hey babe. The doctor called and said I have breast cancer.” I said it matter-of-factly without any emotion. I was trying to be strong as if I had it together. He looked at me for a moment and said, “Ok.” Our daughter is standing there, with a smile on her face, just watching us. (She’s always smiling. I am so blessed.) He continued, “Ok, we just got to do what we got to do.” I felt so relieved. The assurance I got from my family set the tone for the journey I was about to take. Optimism, positivity, fortitude and faith. By that Saturday, I cried so much my face swelled up. The shock was over, it was real. I had breast cancer at age 43.  

Aliya Whipple, Fort Lauderdale, FL 

Early Detection Is Key

By: Tonya Hicks ANGEL Advocate

I remember the day I received the news I had been waiting 3 days for, from the time i had my first biopsy.

I noticed a lump under my armpit that had started to get larger. I had a mammogram in January of 2019 but it was not detected at that time. Although the lump was under my armpit, when I met with my breast specialist after my mammogram she advised me that my lymph nodes may just be swollen but was told to keep an eye out for it in case it got larger. I had taken my son to Barnes & Nobles to pick out some books for being promoted to the 2nd grade. When I saw the number come across the phone I sat down to hear the news on the other end of the line. On June 7, 2019 I was diagnosed with breast cancer at 37 years old. It was Stage 1B, Grade 3, and the tumor was 1.3cm.  I was Triple Negative with Invasive Ductal Carcinoma. In addition I carry the BRCA1 gene mutation which increased my risk for breast cancer and ovarian cancer.

I wasn’t surprised when my breast specialist delivered the news as I already had a feeling it would be cancer. I gathered the information and we scheduled an appointment to go over the next steps. I don’t think it hit me until I called my twin sister next to deliver the news. It was then that I broke down and started crying. I was unsure of what to expect but I knew that I would have to have surgery and possibly chemotherapy. I couldn’t let my son see me like this so I quickly dried my tears and we finished up our visit at the bookstore and went home. No matter what, I knew that I would get through this journey by maintaining my faith and keeping a positive mindset through it all.

I respect the fact that a lot of people like to keep things private and don’t care to share when going through things such as this. By sharing my story I feel that I can be an inspiration or motivation to someone else battling this disease, but may be afraid to get it checked out.

It is extremely important to get mammograms and to do monthly self breast exams. If something doesn’t feel right, please go to the doctor or reach out to someone to seek advice. Early detection is so important. If you have a family history of breast cancer, schedule an appointment for a mammogram before the age of 40 and get the genetic BRCA testing done as well.

 

Through it all I have maintained a positive mindset, prayed a lot, and kept my faith in God. Never in a million years did I think I would have to battle breast cancer at the age of 37. This is not the end of the world for me and I will continue to live my life to the fullest, as I know that God is in control!

My Body: Broken yet Beautiful

By Tina Conrad

If you find yourself on the internet googling scars, there are tons of products and creams and potions to make your scars magically disappear.  Scars act as a constant reminder of pain and loss.  Scars evoke emotions, make you alter what you are wearing and stare back at you all-knowingly.  My body after breast cancer looks worthy of the battle that it fought.  With a double mastectomy, I have two large scars across both breasts.  With a shirt, tank or sweater, the average stranger would have no awareness that I am a breast cancer survivor with a double mastectomy.  However, every morning as I enter the shower, I am visibly reminded of what I have overcome. 

I can clearly remember the first time I saw my body after surgery.  I had a revolving door of help after surgery.  Side note: It is extremely humbling to have your mother and best friend bathe you when you are 37 years old.  Due to the mastectomy, I couldn’t easily lift my arms above my head at this time and I could not get my drains wet.  All I wanted was a slice of normalcy, for the drains to be removed and the clearance from the doctor to return to the shower.  I wanted to be independent.  I wanted to be normal.  I wanted to be me. The green light came to shower right as all my company was leaving town.  Maybe it was seeing myself for the first time after my surgery, maybe it was being alone, truly alone for the first time, maybe it was not recognizing the body I saw in the mirror, but I completely broke down.  The shower became my place of emotion.  The tears mixed with the falling water, and I couldn’t tell where the droplets were coming from. 

This new body took some time to adjust.  This body was full of scars where my breasts had been. This body didn’t resemble the body I had watched grow and change from a young girl to a woman.  This body was foreign.  With bruising and scars, it looked how I felt.  But it did not look how I mentally pictured it. It took some time to mourn the body that was lost. It was my body, it was the essence of me and it was ok to grieve it, to be sad. I have often heard of cancer survivors writing letters to their bodies, to their breasts that were gone.  I had written a poem after exiting the shower.  That poem served as my tribute to my body.  It was full of loss on a grand scale, of sadness and anger and emotions of the whole spectrum.  It was the start of my vulnerability with social media and sharing it was my way of letting others experience what I was going through. 

Shortly after my chemo, I started to run again.  I marveled at my body and the way it ran its first mile after months and months of poison running through my veins.  I have gone on to run many miles, many races and even half marathons.  I am now truly grateful for this body of mine.  I am in awe of its resilience.  It is a relationship that we are in together.  I don’t look for potions and creams and tonics to make the scars go away.  I embrace my scars.  They are a reminder of what I have overcome and what my body is truly capable of. 

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