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Digital health: An opportunity to advance health equity
Equal access to affordable, high-quality healthcare has the potential to improve patient outcomes and make life better. It can be crucial at an early stage, taking care of simple problems before they become emergencies. It also reduces early deaths. Digital health has the power to play a huge role in bringing peace-of-mind to those who are struggling with their health. However, there are also some negative aspects of new technology. It may exacerbate exclusion, introduce unexpected biases, widen the digital divide and leave some populations behind.
Read the original McKinsey article here:
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.
Lisa Lakey Interview (Part 2)
For many, there comes a de?ning moment in our lives that shapes who we are and who we will become. These moments, often arising unexpectedly, force us to discover deeper parts of ourselves that we had no idea laid dormant underneath the identities that we’d spent decades creating and curating.
This leads to two pivotal questions – what do these life-altering experiences reveal to us about life moving forward, and how do we navigate the newfound parts of ourselves after traumatic events? These are questions that Lisa Lakey, a self-proclaimed “Cancer Thriver,” who’s beaten cancer twice after her diagnosis at 35 and 40-years-old is asking.
She is a true warrior. Now that she is cancer-free, she’s passionate about doing the things that she was unable to before like volunteering heavily with the American Cancer Society, playing a lead role with Relay for Life, and other grassroots organizations in her city all while working full-time as a service manager.
I couldn’t help but wonder how she manages to do it all, especially while undergoing continued preventative treatment and carving out time with her family?
“It’s di?cult to balance. I’m actually still going through preventative treatments. So right now, I’m exhausted, to be completely honest with you. I’m having a hard time with this after-cancer life and how to navigate it. And with all my things that I had going on before and having to navigate this new Lisa, I’m wondering what her life will look like?”
Navigating life after cancer has changed her in more ways than she could ever have imagined. Going into detail about her life today, she describes this interesting phenomenon where her identity has been segmented into pre-cancer and post-cancer. Though I’d never considered this, it makes total sense. A life-changing event rarely, if ever, leaves us the same, and maybe it’s not supposed to. For Lisa and others, surviving cancer is not something that a person can simply “move on” from. In many ways, life after cancer proves to be more challenging to navigate because the massive support group during treatment moves on from the traumatic experience before the survivor does.
“When you get diagnosed with cancer, you have this team of your doctors and professionals, and then you have this big team behind you of your loved ones who are cheering for you every second of the way. They’re reaching out to you, calling and checking on you. You have a plan. You know exactly what’s going to happen, your treatments, and when you’re expecting all of this to end. And then it ends. And every single person literally thinks, ‘You’re cancer-free,’ and move on. It’s not that easy.”
Though she has moved forward in a way that celebrates and honors the beauty that is her life, she also acknowledged her grief. Cancer has changed her body, her relationships, and the life that she had imagined she would have. She’s found that explaining these changes to loved ones is di?cult.
What Lisa has found most helpful, and recommends the most to anyone, is to being willing to search for di?erent kinds of support at di?erent phases of your life and knowing that it’s okay to do so. Recently, she’s shifted her support system to her therapist and a support group. The group comprises other Cancer Thrivers where they discuss their unique struggles – the kind of struggles that are di?cult to put into words and could only be understood by those who have walked a similar journey.
“After I started group, it clicked immediately because they’re really the only ones who are going to understand, or maybe not understand, but will validate your thoughts.”
What I ?nd the most remarkable about Lisa is the way that, despite the challenges that she’s met, she views life with such incredible gratitude and love. When I asked her how this journey has shaped the way that she views life moving forward, she answered in a way that will stay with me forever.
“In the most deepest, just the deepest way ever. I don’t know if I can explain it, right, but like, I know, obviously, we all know life is precious, but I know that life is literally so precious. Every single day of every minute of every day I strive to live my life di?erently. I want to only be kind and positive. I don’t want negative toxins and everything that’s out in the world. I used to let things bother me and let things in. So, if anything, the positive, there’s a positive change, because I want to glow from the inside out and, and only be good Lisa.”
Sam McKinnon Interview (Part 2)
Though now cancer-free, Sam McKinnon, 32, still struggles with infections and other health-related issues. This is common among many cancer survivors, despite it often not being widely known among those who have not personally battled or known someone else who has battled cancer.
Earlier this spring, Sam spent about two months in the hospital. With that much time away from home, we talked about her four-year-old son, how this journey has impacted him, and how she explains her medical condition in ways he can understand.
“He’s been to doctor’s appointments with me because my husband’s working and I can’t ?nd someone else to watch him. So, he comes and watches his iPad. He’s very good. And he’s obviously seen me in the hospital. I would get day passes from the hospital sometimes. So, I’d be able to come home and be with him for the day, and even as much as put him to bed and be like, ‘Yeah, mommy has to go back to the hospital for the night.’ I think he’s dealt with it pretty well. We had some trouble this summer where he was acting out but also unusually needy towards me. So that’s where I feel like he was trying to process what had happened in the spring.”
Despite the seriousness of cancer, Sam and I were able to share a moment of humor. When her son asks questions, she answers, which is challenging yet strangely refreshing in that children acknowledge what adults often prefer to pretend away. When he asks about her nephrostomy tubes which connect to urine bags that she carries by her legs, she made it a point to explain it to him matter-of-factly, to which he replied with a simple, “Okay.” Yup – just like that.
Through my conversation with Sam, I’ve learned that often the most helpful action for cancer patients is not receiving rehearsed cookie-cutter positivity quotes that belong on Get Well cards from loved ones and strangers. They just need others to sit with them in their pain while acknowledging the reality of their circumstance. In many ways, it goes against our instinct because, as human beings and loved ones, in particular, we really would love nothing more than to solve their problem and take away the su?ering. Sitting with it, whether our own or another person’s, is di?cult and uncomfortable, but Sam said that it’s needed.
“I just feel like, when I’m telling someone about either my diagnosis or something traumatic in my last couple years that’s happened, either because they asked or, like, I’m just having a bad day of need to vent. Like, I’m not telling you, because I want you to ?x my problem, or make me feel better about it. I just need to say it out loud to get it out there. And I think that’s what people don’t realize. I think they take that on, and they feel like they need to give you advice or give you – you know – a silver lining or ?x your problem. But that’s not anyone’s intention unless you’re actually talking to a professional. But when it’s just like, you know, a friend or a stranger or acquaintance, you just want to be heard. And just acknowledge like, yeah, it sucks. You know, just the acknowledgment and validating that your situation is what is. It doesn’t need to be ?xed.”
I asked her if there’s anyone in her life who’s matched the kind of support that she described. Immediately, she mentioned her friend and co-worker Kim, followed by a wave of emotions that caused her to tear up for a moment. She recalled stories of true support – like the time when Kim went with her to a chemo session when Sam’s husband was unable to get o? work. Or when she drove round trip with Sam to a provincial conference two hours away so that she wouldn’t be alone with her thoughts. When Kim’s husband asked her why she did it, Kim responded, “Honestly, Sam is probably one of the only friends that would do it for me too.”
When Sam was initially diagnosed, she wondered if it was karma, but she now views her experience in a new light.
“After all the love and support that I got, I felt very much like maybe that’s what I needed. I needed a reminder of how well I’ve done in life and how loved I was by people. I just needed this reminder that I am doing something right in life. People care. They see me as a caring person. That was my positive spin on it.”
Caregiving and Compassion: Kim Bernakevitch
“I think it’s a two-way street. Because I think Sam would be there for us just like we are for her family in a heartbeat.”
When you find a true friend, it’s wise to hold on to them forever. As adults with hectic schedules, it’s hard enough carving out time for ourselves, let alone for others. So, when I spent an hour talking with Sam McKinnon about her cervical cancer journey and she began to tell me stories about how incredibly supportive her dear friend Kim has been throughout her entire cancer journey, I knew that I had to meet her for myself. Who is this incredible woman and what compels her to provide caregiving and compassion to others in a world that seems to lack it so deeply now?
Kim Bernakevitch, is exactly as Sam described — kind, generous, and likely to shed a few tears at the drop of a hat because of her deep compassion for others. She and Sam met at work as nuclear medicine technicians and with many friendships, their friendship grew so organically that she had trouble pinpointing an exact moment that solidified it for them. As she pieced their timeline together, she was surprised to even realize that their friendship had now spanned close to a decade.
“I don’t know how friendships and stuff happen, but you just end up spending more time with each other and the next thing you know, you’re really good friends. I know people show their friendship. Sam is very, very thoughtful.”
What I admire the most about Sam and Kim’s friendship is the unwavering and unquestioning support that they show to each other. There was a quality of openness between them when they described how their friendship has impacted their lives as individuals. It’s inspiring and truly a gift because relationships like that, whether platonic or romantic don’t come by often.
When asked what she cherishes the most about their friendship, Kim said that she loves Sam’s honesty and that you can share your unfiltered feelings with her and, she will listen. And once you’re finished sharing, she’s able to provide honest feedback that is free of as much sugarcoating as possible. The honesty is reciprocal — a key step in being an effective and supportive caregiver.
I told Kim about the conversation that Sam and I had about the ways that adults offer generic words of encouragement or immediately go into solutions mode when sometimes what is needed most is the quality time together to sit in the messy reality of our circumstances.
“I don’t know that I’ve ever told her like, ‘Oh you’re strong! You’ve got this like blah blah blah.’ I’m like, ‘No this sucks what you’re going through and it’s not fair.’ I’m trying to take that approach more in life now, too. Just to be honest with people. Like that’s the elephant in the room so let’s just address it. Like, feel free to have some food and get some drinks, move on but just acknowledge that yeah, it really sucks.”
In addition to unbridled honesty, Kim also offers Sam support by offering small doses of normalcy. When Sam’s doctor’s appointments are in the same hospital where they used to work together, many of their co-workers will sit with Sam for lunch to talk and catch up. While Sam spent two months in the hospital during the spring, Kim was quick to deliver snacks and quality time – no questions asked. And when Kim was out on maternity leave, they took it as an opportunity to go on a joint family vacation.
As our conversation came to an end, I asked her what she believes are qualities of a good caregiver or supporter for someone dealing with health issues. In summary, her advice was:
- Treat others how you would want to be treated. You get what you give.
- Surround yourself with people who share the same values, and then you’ll know that they’ve got your back and you’ve got their backs.
- Be there for them. Drop food off if they need food, or just go over and have a cup of tea and let them talk. And just let them cry and let it out if they need to.
- Instead of offering words, sometimes just a body being there is truly all that they need.
Cervical Cancer Story: Lisa Lakey
Lisa Lakey’s ?rst diagnosis was received in a Planned Parenthood at 18 years old. It was HPV, and with research discoveries of the virus still being relatively new, there were unfortunately no treatment plans o?ered or vaccines available.
It wouldn’t be until 2006 that the HPV vaccine would be o?cially approved for the public, and according to the World Health Organization1, it takes 15 to 20 years for cervical cancer to develop in women with normal immune systems. It can take only 5 to 10 years in women with weakened immune systems, such as those with untreated HIV infection.
With no treatment plan and the stigma stemming from her Catholic upbringing, Lisa told no one and continued on in her life – getting married at 20, raising her son (who is now 19 years old) and even ?nding new love in her current husband, Brian, after divorcing at 28. They had plans for their life together. They wanted to have a child and were making active plans to do that as they were beginning their fertility journey.
“I have a 19-year old with my ex-husband, but he doesn’t have his own biological children – my new husband. I do grieve what could have been and what should have been. And I think he does, too.”
Lisa was 35 is when she spoke up about her HPV diagnosis from nearly 20 years earlier. Her doctors immediately went into diagnostic and treatment mode. She underwent surgery where they discovered new cancer cells, and her gynecologist suggested a hysterectomy, and she also decided to schedule an appointment with an oncologist who could be able to o?cially stage her cancer. Her doctor diagnosed her with Stage 1A1 cervical cancer. Lisa made the di?cult decision to have a hysterectomy. Though she still had pains in her ovaries, her scans remained clear for the next three years.
Doctors told her that there was only a 5% chance that her cancer would return. Unfortunately, in 2019, at 40-years old, an ultrasound revealed an 18 centimeter cyst. Her cancer had metastasized to her ovaries, and after further tests, she was again diagnosed with Stage 1A1 cervical cancer. Given the nature of her diagnosis, her treatment plan was aggressive starting with the removal of her ovaries, fallopian tubes, and the cyst.
Lisa is now cancer free and when asked about the experience looking back, she describes her treatment plans and the support her of doctors and loved ones with immense gratitude. During the process, you’re given a plan that tells of the exact treatments you’ll receive as well as a timeframe for when you can expect to be ?nished with the treatment. But when all of that ends, the question is – what’s next? Moving forward after battling cancer is the new challenge, one that Lisa says has sparked her journey of self-discovery. She’s hopeful as she describes how her view on the preciousness of life is completely di?erent from before.
“I’m going to be a better Lisa. Like after all of this, I know I am. It’s there. This beautiful life, this world in front of us. And I don’t think I would have known any of that if I had just gone on living my life day to day like miserable sometimes and happy sometimes and materialistic, and like all of these things. For example, when I had cancer, I remember thinking money did not matter. Like nothing mattered to me. I didn’t want anything materialistic. I was just like, ‘None of this matters. Who cares if I have a credit card?’ You know, I actually saved money because I stopped spending money. Other people I’ve heard, go on spending sprees, or whatever but I was just like, I don’t need anything but like, love and happiness and health and that’s what I wanted to focus on.
August 2021 #PullUpASeat – Addressing Trauma and Changing Patient Outcomes
The Tigerlily Foundation and Guiding Researchers and Advocates for Scientific Partnerships (GRASP) launched a monthly conversation series, #KnowMoreDisparities and #PullUpASeat. Our August conversation focused on “Addressing Trauma and Changing Patient Outcomes”. Our August panel included our keynote speaker, Maimah Karmo, with patient experts, Lisa Lee, Antoinette Hall, Nediva Monroe and Aisha Patterson.
Maimah Karmo, Founder and President of Tigerlily Foundation, a fifteen-year breast cancer survivor, discussed the impact of cultural differences on trauma. Speaking from her African background, she shared the tendency for loved ones to push away trauma which was the case during her breast cancer journey. After her treatment, Maimah realized, through medical professional support, that trauma was the root cause of her sleepless nights, loss of appetite and mental breakdowns. She was taught to be a warrior and pillar for her family member but had nowhere to turn to discuss stress and trauma.
Maimah had no clue that she was dealing with Posttraumatic Stress Disorder (PTSD) after her cancer treatment. She was not provided a plan on how to deal with ripples of cancer once treatment ended. Maimah turned to a naturopathic doctor to help deal with her anxiety attacks. She searched for a life coach online who helped her identify and name her trauma. Maimah stated “We need to change how we deal with people, not just treat cancer, but the whole person.”
Nediva Monroe is a wife and mother of three boys, she is surviving a stage 1 IDC, ER/PR+/HER2-, breast cancer diagnosis since 2014. Nediva is thriving with a stage 4 IDC ER+, MBC diagnosis since 2019. Nediva opened up about her trauma that she developed before her breast cancer diagnosis, she was six months pregnant with twins when her twins transitioned. In the midst of her grief, she was diagnosed with breast cancer only three months later. In the safe space of the conversation, Nediva has decided to take the next steps to speak to someone about her trauma as she continues her journey.
Aisha Patterson is a breast health and mental health advocate. Aisha was diagnosed with HER2-, ER-, and PR-positive in November 2020, she underwent six rounds of chemo, double mastectomy and is currently going through 33 rounds of radiation. Prior to being diagnosed, Aisha had no proper knowledge about breast cancer, as she felt like it was mostly targeted to older white women and that young Black women were left out of that conversation. Aisha now spends her time dedicated to spreading knowledge about breast cancer and advocating for change.
Aisha shared about the positive effects of therapy on her family. While she was never directly advised by her health care team to seek therapy or any support, she took the initiative to find support for herself, spouse and children. Keen on finding therapy but unable to afford the high costs, Aisha was able to find a non-profit organization to support her mental health needs. She believes getting into therapy early into one’s diagnosis can help tremendously through one’s cancer journey and champions for health care teams to share this information with patients at the beginning of a diagnosis.
Antoinette Hall is a 28 year old, almost mother of two. After testing positive for the BRCA2+ in 2017, Antoinette chose a preventative double mastectomy surgery to lower her risk of developing breast cancer. During her process, Antoinette had to look to social media for help and guidance as she did not see any women that looked like her while she was undergoing her mastectomy journey. Antoinette now tries to spread the word about getting genetic testing done to young women of color, even if they do not have any family history of breast cancer. She expressed how it is common for Black women to not want to show weakness and how therapy still remains uncommon in many households. She declared that this needs to change as women should not feel weak for asking for help.
Lisa Lee, mom of five, was diagnosed with stage 2 lobular carcinoma of the right breast HER2-, PR +, ER+, with positive lymph node involvement in February 2020 on her birthday, at age 42. Lisa had a double mastectomy July 2020. Lisa had no family history of breast cancer and no genetic mutations. Lisa also touched on how important it is to take care of ourselves first, that self-love should always be prioritized. She shared about the impact her diagnosis had on her children and the importance of speaking with them frequently throughout the different stages of treatment.
Conversation Takeaways:
- Going to therapy early in your breast cancer diagnosis can help you in your cancer journey.
- We need to break the stigma around women being “weak” if they ask for help.
- Therapy needs to be normalized.
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