June 13, 2023
My Life Changed Forever: A Breast Cancer Journey of Hope and Advocacy
By LaToya Bolds-Johnson

In July 2021, LaToya was diagnosed with breast cancer. Her story, characterized by courage and resilience, begins with the unexpected phone alert that set her journey in motion and culminates in her inspiring advocacy work. Despite the arduous treatments and surgeries, LaToya maintains her hope and dedication to raising awareness of breast cancer, particularly among Black women.

LaToya’s Story

On July 26, 2021, my life changed forever….

This is the day I was diagnosed with breast cancer. It was an ordinary day like no other. I was actually working in the emergency department on a 12-hour shift taking care of patients. You see, I am a board-certified emergency medicine physician assistant in clinical practice since 2012. I received the devastating news of a cancer diagnosis by an email alert. I had been expecting to receive a phone call of my biopsy results from a physician as told by the radiologist a couple days beforehand.

I had felt a lump in my left breast about a month prior. I really didn’t think any significance after discovering the lump. I had not long ago stopped breastfeeding my one-year-old baby girl at the time, and I just figured it was a residual breastfeeding milk cyst. A couple more weeks passed by, and I still felt a lump, so I set up a virtual appointment and was able to have a mammogram and sonogram scheduled.

Leading up to the mammogram appointment, I was somewhat nervous. I was 36 years old and didn’t expect to have a mammogram for another four years at a minimum. Before the mammogram even started, the technician verified my age a couple times and went to the radiologist to discuss if I still needed the mammogram. She returned back to the room and said “The radiologist doesn’t feel you need to have the mammogram yet because of your age and I see here that you recently stopped breastfeeding. We should just do the sonogram.” I replied “NO” and that I wanted to still proceed with the mammogram as ordered.

About two days later, I received the mammogram report findings stating “Benign appearing galactocele consistent with patient’s reported history of recent breastfeeding. Repeat sonogram in three months.” I was reassured after reading this report, and I went on with my normal life activities. In another two days, another radiologist calls me to say, “After reviewing the images on a double look, the margins on this mass looks suspicious and you should have a biopsy.” My heart sank! I immediately knew there was a chance of me now having breast cancer, and I was frantic and impatient. I was upset, mad and crying! I couldn’t wait to be contacted by the breast care specialist as instructed by the overreading radiologist. I dialed into the breast center right away to schedule a biopsy.

As the radiologist started the sonogram before the biopsy, I was also looking at the screen and remember saying to him “those margins do look irregular and suspicious.” I was still hopeful at that point and thinking “Ok, he will try to aspirate this cyst first and if milk is drained then we know it’s not cancerous and can stop the procedure.” Unfortunately, the physician was not able to aspirate any fluid from the breast lesion and he proceeded to do the full biopsy. I immediately began to cry because I felt at this point that it was not a benign finding. The radiologist tried his best to reassure me and stated “Let’s just still wait for pathology because this can be another type of cyst benign in nature. You will get a phone call to discuss the results in about three days.” The biopsy was done on a Friday, and I just remembered having a very long and dreary weekend.

Three days later exactly on July 26, 2021, about four hours into my 12hr shift about 3:40 in the afternoon, I received the dreaded news in a very insensitive manner. I RECEIVED MY BREAST CANCER DIAGNOSIS FROM A PHONE ALERT PATIENT PORTAL EMAIL NOTIFICATION! I had no idea I would be checking results on my phone that would forever change my life. I looked at the report and read the pathology findings showing triple negative breast cancer, grade 3. I dropped everything and went to the physician’s lounge to pull up the report on a desktop because I was thinking, “This has to be a mistake, or I am not reading this clearly.” I printed out the report and read it multiple times and just could not believe it! I grabbed my phone again and tried to dial Kaiser Permanente Breast Center and was not able to reach a physician directly. I could not even think clearly at that point and was erratic! I left work and went home. I am not even sure how I made it home because it was all a blur. Thankfully, I only lived 15 min away from the hospital.

When I pulled into the driveway, I sat in the car for a while. I paged the physician and was speaking to an on-call nurse. She was confirming the results, but I was demanding to speak to a physician to confirm such devastating news. My husband came out to the driveway, and he immediately dropped to the ground in tears. He knew something was wrong because I was home 8 hours early from work and that has never happened. I never spoke to a physician that day. I told the nurse that I was informed by the radiologist that someone would call me with the results. I wasn’t supposed to receive an email notification. She then proceeded to tell me that sometimes patients receive results electronically before the physician sometimes reviews it because of a recent law passage. The CURES Act passed in 2021, requires all hospitals and physicians to make test results available to patients via online portals as soon as they are published. As an ER provider, I knew that my clinical notes were made available to patients online as soon I signed the chart, but I had no idea that this was the impact. I was receiving a cancer diagnosis from a portal notification without the proper confirmation from a physician and with counseling regrading such a sensitive and scary diagnosis. At that moment, I realized I was no longer just a Physician Assistant, I was now a patient too.

I received a phone call the next morning at 8am from a radiologist confirming the diagnosis. He was very cut and dry. He had no emotion tied into the short conversation and just told me I would be contacted by the breast cancer nurse navigator. I was emotionally torn over the next few days and was in a deep somber. About a week later, I had a multi-disciplinary appointment with the medical team about the next steps. I don’t remember recalling much information during that visit. My husband was more of my eyes and ears because I didn’t retain much information at all and was still in a state of shock. As some time progressed as I went through more testing and most importantly, the staging PET scan, I grew weaker mentally, spiritually and emotionally. My PET scan results showed that I was stage 3c. My tumor was 5.5cm and had spread into multiple lymph nodes into my axilla and neck region. The only saving grace was, no metastasis into my organs. I went back to work as I waited for my chemo start date and even resumed work just two days after my port placement. I wanted to keep myself mentally distracted by doing what I love, taking care of patients. I worked until two days prior to chemotherapy initiation treatments.

It took me a long time to process that I was actually a cancer patient. How could this be? I am a licensed health care professional. I am the person who takes care of patients, how did the roles flip? That was the biggest part of it all for me to digest, and I felt vulnerable and weak. After about 8 weeks of chemo, an epiphany came to me. I felt helpless but wanted to do something to still help patients during my cancer treatment journey. The healthcare provider was still alive within me, and I needed to do something to make me feel fulfilled in some way. I decided to start posting videos about my diagnosis in hopes that it would reach another woman who looks like me and the same age. I felt like people needed to know to not wait until your 40th birthday to have a mammogram. Get a mammogram now! Early detection saves lives. No one pushed this health recommendation to me and even through my PA college education, I was always taught mammograms don’t start until age 40. Well, the recommendations and those schoolbooks were wrong. Here I am at the age of 36 without any known family history of breast cancer with a new diagnosis of the most aggressive form of breast cancer.

It wasn’t until after I was diagnosed and started posting videos on social media that I found out that I did have a paternal family history of breast cancer. I always knew my paternal grandmother died of some form of gynecological cancer, but it wasn’t breast cancer. She never really discussed her health history as many African American families do not reveal health conditions. I discovered there’s a strong paternal linkage of various cancers including pancreas, breast and cervical. It was still unclear after speaking with some family members about which family member had what condition because it was assumed to be “quiet about people’s business.” I decided this narrative had to change beginning with me. After growing a stronger social media presence, I started receiving feedback from random women asking me for more advice, sharing their stories, and providing positive feedback. I figured since I couldn’t serve patients directly in the ED at that time while I was on leave from work receiving chemo, then I could reach more via social media.

I have become stronger with advocacy work and breast cancer awareness efforts. I was introduced to Tigerlily Foundation by a friend and quickly found myself in the angel advocate program. I started my own organization as well to help foster my personal breast cancer awareness efforts as well with online speaking panels, community events, TV campaigns, etc. I felt like God was using me for a reason and I became more positive about my journey and diagnosis. I have completed 16 weeks of chemo and 25 sessions of radiation like a champ. I went through a bilateral mastectomy 3 months ago and have another 6-8 months left of oral chemotherapy. My mastectomy went well, and it showed that all 26 of my lymph nodes removed were cancer-free! They were able to remove the tumor surgically with the breast tissue and now I just have to complete oral chemo for any circulating and/or microscopic residual cancer cells in my bloodstream. I am not happy about the upcoming remainder of treatments, but I am hopeful that it will continue to work as my other treatments have.

I am hopeful, grateful, blessed, humble and positive that I will be declared cancer-free forever to be here for my three daughters flourish in life. I still have a lot to live for and travel the world with my loving husband who is my best friend and biggest supporter. I would not be able to get through this at all without him! Cancer is not just a physical diagnosis. It affects your mental, emotional, spiritual and financial state of life as well. It also affects your loved ones and as a cancer thriver, you definitely need a support system and mental health treatment too. I have good and bad days, but I am thriving, and I will not stop until the wheels fall off! I have dedicated myself to helping to eradicate breast cancer and particularly decrease the higher mortality associated with Black Breast Cancer. I owe this to my three daughters whom I pray will never ever have to experience what I am going through in this journey of life.

To all my breasties around the world — don’t forget to fight and count your blessings, because you are blessed my lovelies. Lose yourself in helping others feel better and always remember to be kind to yourselves.

LaToya Bolds-Johnson
Latoya Bolds-Johnson is a native of New Orleans, Louisiana, and currently lives in the nation's capital with her loving husband and three young daughters. A proud graduate of two HBCUs, Prairie View A&M University and Howard University, she is a licensed and board-certified emergency medicine physician assistant with a decade of clinical experience.

Latoya was diagnosed with stage III triple-negative breast cancer in July 2021 when she was 36 years old. She has since worked hard to promote self-advocacy and breast cancer awareness specifically in the young African-American female population via social media platforms. She enjoys cooking, baking goodies with her children, gardening, traveling and swimming.

Jumo Health develops age-appropriate, culturally relevant, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 80+ countries in 120+ languages. Our various digital, video, and print offerings use highly visual elements and research-backed health literacy strategies to ensure that everyone can understand and act upon complex medical information. We do this through familiar mediums – from comic books and animation, to virtual reality experiences and authentic documentary-style patient stories – all customized based on audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to promote access and to ensure unique patient experiences are accurately represented.

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