Meet Paris Smith | TNBC Survivor & Multiple Sclerosis Thriver
We spoke with Paris, a Stage III triple-negative breast cancer survivor who is also a relapsing-remitting Multiple Sclerosis thriver. She raises awareness about triple-negative breast cancer and multiple sclerosis both online and in her local community.
Does your Multiple Sclerosis journey start before or after cancer?
Paris: In 2015, I had just returned from vacation when I started feeling sick. My whole body felt like I was hit by a truck. I tried to push through until the central vision in my left eye started to get blurry. A migraine formed and wouldn’t go away for almost a week. Actually, I called it an “eye-graine” because my eye hurt so badly. I thought “Maybe I’m forming glaucoma?” I searched the Mayo Clinic’s website to see what illnesses had vision loss as a symptom, and Multiple Sclerosis popped up. I decided not to pay attention to what I saw and tried to get a doctor’s opinion first.
At the time, I worked at a neurosurgery center. I visited the medical facility right next to my workplace to have a visual field exam. For this exam, they told me to press a button every time I saw the dots on my screen. They fully dilated my eyes to the point where I could barely see anything on the screen at all. After this exam, they sent me directly to the hospital. The middle part of my left eye was completely black on the report; I barely had any central vision left in that eye.
At the hospital, I had an MRI. The MRI tech was actually the husband of one of my coworkers at the neurosurgery center. He told me “This is off the record, but it looks like you have Multiple Sclerosis. See these white spots on your brain? These are lesions, usually caused by Multiple Sclerosis.” He gave me a CD of my scans, and I brought that disk to the neurosurgeon I worked with. That neurosurgeon sent my scans to the neurologist who worked a few halls down.
When the neurologist who specialized in Multiple Sclerosis looked at my scans, he said “Whoever’s MRI this is needs to go get on steroids ASAP before these lesions get worse.” At this point, I still couldn’t see in my left eye. My central vision in that eye was completely gone, and I was still experiencing this constant migraine. The doctors sent me for another vision test and a spinal tap, and I was finally diagnosed with relapsing-remitting Multiple Sclerosis (MS) in 2015.
This diagnosis caught me completely off-guard. I was 29 years old and had no family history of Multiple Sclerosis. My only symptom before this sudden illness was occasional gait issues.
Fast-forward to 2016. I was going through a lot, and my body started to feel the wrath of my mental stress. I experienced this terrible relapse and lost my ability to walk. For 3 months I had bad full-body spasms, feet-curling spasms, all day every day. I felt like I had cerebral palsy. They had to insert a pump to deliver Baclofen directly into my spinal canal to get my muscles to finally relax. My insurance required me to switch to a different facility after spending three months at the rehab center near my home. So, my mother and brother picked me up, and I moved from Tennessee to Georgia to try a new rehab center.
This was one of the most difficult periods of my life. If I hadn’t been so stressed, I likely wouldn’t have experienced such a painful, severe MS relapse. I motivated myself constantly always thinking “I’m going to walk again. I’m going to get back on my feet.” Eventually, my body aligned with my self-affirmations, and I was able to start learning to walk again. It took nearly six months, and I was very depressed and lonely during that period, but I picked myself back up again.
By 2017, my life finally started getting back on track. I was walking again, I found a new job, and I started my new life in Georgia. If I hadn’t already gone through the worst period of my life with MS, I wouldn’t have been able to get through breast cancer mentally.
What is your personal cancer journey?
Paris: On March 9th, 2021, I was diagnosed with Stage III Triple-Negative Breast Cancer.
7 years prior to my diagnosis, I had a cyst (papilloma) with bloody discharge on my nipple removed. I thought I had cancer when that cyst had popped up, but it came back benign. Then in 2021, I felt another lump in my left breast. It was on the right side of my areola, felt like one big golf ball-sized lump, and was smooth to the touch. No ripples, no rash, no redness. Every sign I knew of for breast cancer wasn’t there. I thought that I had another papilloma. When I felt the lump area again, later on, I felt another little lump. This one wasn’t smooth to the touch, it had a texture to it. This set off alarm bells as I had always been taught to immediately get a mammogram if I felt a breast lump that wasn’t smooth.
The cancer center ordered me a traditional mammogram as well as a 3D mammogram due to my dense breast tissue. Then, they ordered an ultrasound of my breast. The ultrasound tech kept going over and over the lumps on my breast. She sent for the doctor, who confirmed something was wrong. I was just trying so hard not to stress myself out. “Miss Smith, you might have another papilloma. You should contact a breast surgeon.” When I asked what type of breast surgeon, she didn’t give me many details. “We’ll call you and set everything up.” I think she knew I had cancer, but couldn’t tell me until I had surgery to confirm.
I was so relieved to tell my mom that I just had another papilloma. 2 days later, I received a phone call from the cancer center. “Miss Smith, we want to order biopsies on both of your tumors, just to see exactly what’s going on and investigate further.” This confused me because I thought it was just another papilloma, but I went for the biopsy. Later that month on a Friday, I missed a phone call from the cancer center at work.
Thinking my results had come back, I slipped into one of the surgery center bays to take the call. All I can remember my doctor saying was “Miss Smith. Unfortunately, both tumors were positive for cancer.” Those words felt like a gut punch. Someone just ripped my heart out. Every emotion that I could possibly feel, I was feeling. I couldn’t understand it. What type of cancer did I have? People had told me I’d been losing weight for months, was it because of cancer?
I was torn apart. I texted my family “I have cancer.” I couldn’t stop crying and left work for the rest of the day.
The following Wednesday, I traveled to the cancer center to receive my complete diagnosis. “You have Invasive Ductal Carcinoma, Stage II Grade 3.” This was just an initial diagnosis, as it might change slightly once my HER2 receptor results returned from the lab. My doctor explained that I would have to go through chemo and likely would lose my hair. I also needed to have both tumors fully removed. I requested a lumpectomy, but my doctor replied that an aggressive cancer like mine would likely not be a candidate for that surgery. Would I require a bilateral mastectomy? Also no, the risk of my cancer traveling to my left breast was very low. He referred me to an oncologist and confirmed that we would move forward with a right breast mastectomy.
A few days later, I received a call from my nurse navigator. “Miss Smith, I know you must already be overwhelmed. Unfortunately, your HER2 test results came back, and all your receptors are negative. This means that your diagnosis has changed to Triple-Negative Breast Cancer.” My heart started pounding in my chest and all I could ask was if this was good news or bad news. I had no idea what triple-negative breast cancer meant. The nurse navigator explained that I had the most aggressive form of breast cancer, but I also had excellent doctors and treatment options to nip it in the bud.
Before I started chemo, I had to get my port placed and get a few more rounds of testing. After some complications with my port, I was finally able to start chemo in April 2021. My treatment consisted of four rounds of AC and four rounds of Taxol over three months. By September, I had lost my hair and was experiencing constant neurology and sickness. Through it all, I took the approach of maintaining a positive mindset. If I stressed on top of everything going on, my health would get worse and I could even suffer an MS relapse. I shifted my focal point to trying to be positive. “You’re going through it, it’s horrible, but it’s not the end of the world.” I kept motivating myself like that.
I started sharing my story on social media. When I lost my hair, my friend encouraged me to remove my wig and do a bald photoshoot. He told me I would feel liberated afterward, and he was 100% right. I didn’t want to accept this cancer journey, but I could own this journey for myself. Posting using the hashtag #BeautifulWithMSandCancer, I reached both communities and shared my story. Even when sick, I felt beautiful as I kicked cancer’s ass.
One of my surgeons gave me the best advice. “If you want to work, keep working. If you don’t want to work, don’t work. But please, don’t just sit at home. If you do, you’re going to go downhill quickly.” Once he said that, I went into overdrive. I refused to let cancer drag me downhill. I worked daily throughout chemo, only taking time off for my mastectomy.
My right breast mastectomy surgery occurred on October 19th, 2021. My surgeon removed 19 lymph nodes, and 3-4 of them came back positive for cancer. Radiation was still on my treatment plan, but they did not want to increase the sessions and put me at more risk from radiation exposure when so few nodes returned positive. I had another PET scan, and afterward, my radiation oncologist sat me down for more news. Pointing at my scans, she said “Do you see that yellow spot there? And there? And there? All those spots are residual cancer in your pectoral wall, and unfortunately, we can’t do surgery on that.” Another gut punch. I wanted so badly for my mastectomy to rid me of any further cancer.
The radiation oncologist ordered 35 rounds of radiation, instead of my originally prescribed 20 rounds. Radiation took such a toll on my body. I started my rounds in December 2021. Due to the offices being closed for Christmas & New Years, I sometimes had to go for radiation twice in one day. I have vivid memories of lying on that table and wanting to stop caring. Wanting to just say “It is what it is.” My body had gone from Stage II to Stage III in such a short time. What if this was all for nothing? Yet another part of me told myself “If this is what I have to do to keep living, this is what I’m GOING to do.”
January 2022 marked the end of my course of radiation and the beginning of my post-cancer treatment plan. I took Keytruda for six months as I healed from radiation, and then took Xeloda until August 2023.
During that time, I started having my right breast expander filled so I could have reconstructive surgery. Instead of the surgery I wanted, I had another bump in the road. My breast muscles experienced a lot of tissue scarring and tightness after radiation. The surgeons eventually removed my expander because it was literally coming out of my body. I believe my complications were related to my Multiple Sclerosis. I had issues with my port at the beginning of my treatment, which had to be swapped to the other side of my chest at one point and glued down with skin glue to keep it from coming out of my body. Seeing my tissue expander go from one small scab to essentially a hole in the side of my chest wall was extremely painful physically and emotionally. Now, I get regular Botox injections and nerve blockers on that side of my chest for the pain after treatment.
People don’t talk about the aftermath of cancer. When you say you beat cancer, they want it to be done. But it’s never really done. You’re still on this path. I had to take chemo pills. I had to go through immunotherapy. Cancer wasn’t over when I rang that bell.
These experiences are why I choose to share my story out loud. I want others to know that it is OK to share vulnerable moments in your journey. If there’s someone out there dealing with the same thing, it is helpful for them to hear my experience. It’s helpful to my healing to share my experience. I constantly think about others who didn’t get to reach survivorship and whose voices aren’t heard in the cancer community, and it makes me want to share my story even louder.
How did cancer shift your relationships with family & friends?
Paris: My friends, family, and support team kept me from giving up. If I hadn’t had that support throughout my entire journey, I would have struggled so much more.
My brothers and guy friends tapped into a fear they didn’t know how to deal with. I had to have hard conversations with them. They would treat me as if I was delicate, not wanting to visit or ask me how I was doing. The men in my life stepped back until they saw me on social media looking healthier with my hair growing again. This experience was challenging for me. I used to turn to my brothers and guy friends to talk about everything, not hearing from them was a hard pill to swallow. But I also realized that men aren’t taught how to process difficult emotions. I gave them grave, but still made it clear that I wanted them to be present for me.
Eventually, I was able to convince some of them to go to chemo with me. My dad went with me once but was squeamish when it came time for the needle to go in my port. I told him that I was fine, but he couldn’t get past it. His nervousness caused him to keep asking me questions. I just needed him to sit there and be quietly supportive or talk about something other than cancer/chemo, but he was too nervous to do that. Sometimes, you have to know who to ask to be present for you in different parts of your journey. I had to remind him to trust the nurses and trust me.
I use my personal cancer experience to remind my family to stay on top of their doctor’s appointments. My diagnosis made them shy away from going to the doctor, trying to avoid any potential diagnoses. “Avoiding the doctor doesn’t make the diagnosis go away. If you’re going to be diagnosed with anything, you’ll want to know as early as possible. Go to the doctor!” Telling my story will hopefully push others to get their bodies checked. Make sure you are aware of what’s going on in your own body and don’t ignore signs of something being wrong.
On the outside, I looked strong. I share my story. I rang the cancer bell. I celebrate life every day. On the inside, I experience the same loneliness that every person on a chronic illness journey experiences. Moments I spend by myself thinking about life really affect me.
What misconceptions did you have about cancer before your diagnosis?
Paris: Years ago, I think I made a Facebook post about always hearing about breast cancer awareness but never hearing about multiple sclerosis awareness. MS is a progressive disease with medications, but no cure. Now, having breast cancer made me eat my words. There’s no cure for a lot of these illnesses that people experience. It’s very frustrating. We can’t compete with one another in the chronic illness community, we have to work together.
Before my diagnosis, I had never heard of triple-negative breast cancer. I never knew how aggressive it could be, or that it mostly affected African Americans. The black community is so much more affected by this subtype of cancer than other communities, and yet so few of us know it exists. Growing up, I just heard about breast cancer as a general disease. Most people don’t know anything about the disease until they receive a diagnosis.
I received my breast cancer diagnosis in 2021, and my work manager was diagnosed with it in 2022. She’s Caucasian and was diagnosed with a completely different type of breast cancer, and we were both young. A huge misconception of cancer is that it is only something that happens to someone in their 50s or older. When you hear someone like me getting diagnosed at 35, it rings a bell in others’ minds. They start to take their health more seriously. Cancer is shifting younger and younger. My oncologist had a patient who was 21, pregnant, and was also diagnosed with triple-negative breast cancer. The most important thing is to share the knowledge we have. I didn’t know, but I have the education now and am working to share it with as many people as possible.
How has your perspective on life changed?
Paris: My perspective changed a lot. I entered the patient advocacy world after my friend from the Tiger Lily Foundation contacted me. She explained what they advocate for and told me their founder, Maimah Karmo, also had triple-negative breast cancer. I didn’t need much more convincing, I immediately signed up.
Ever since then, I’ve been advocating for women’s health. Do your self-breast exams. Get your mammograms. Do everything you can to promote early detection! I remember growing up with the self-breast exam pamphlets my mom kept in the shower, but I never thought breast cancer would affect my life so directly.
I attend panel discussions and community meetings, discussing health equity with those trying to fix disparities of cancer care within the African-American and other minority communities.
Before my diagnosis, I didn’t have a family history of cancer. Now, I continue to remind the women in my family to take care of their health. My cousin reached out to me once for advice when she found a lump in her breast, and I encouraged her to set up a doctor’s appointment. In the black community, we’ve had negative experiences with the healthcare system that sowed seeds of distrust and fear. I’m trying to rebuild some of that trust where I can by sharing my own, positive experiences.
In October, I went to Capitol Hill with other Angel Advocates from across the country. We spoke with our representatives to discuss our experiences as cancer patients, trying to bridge that healthcare gap even more. I went to the Georgia State Capitol in early March to advocate further. We spoke to our state legislators about HR 235 to advocate for more funding for triple-negative breast cancer. Women are dying. More funding for both research and education could help stop that. We need the Research and Education Act to be passed for patients to access more medications. We need to push for more clinical trials. It’s hard to ensure that people in the black community feel safe in clinical trials, but that is the only way we get these new medications.
I use my platform to advocate as much as I can. I share my story on social media and talk to as many representatives as I can, I want to do as much as possible. The more patient and ally voices that are raised, the more things get done.
What message would you give newly diagnosed cancer patients?
Paris: Give yourself grace. Everyone has a different journey.
Try to surround yourself with as much support as possible. Whether it be support from family, friends, social media peers, or the wider cancer community. There are so many communities on Facebook and other platforms that allow you to connect with others who have had cancer. There are also many cancer foundations, including ones specific to the black community. There’s nothing like having a community of peers who understand what you’re going through. You can ask questions, seek support, and feel less alone. You’re not walking this journey by yourself. Find those you can call up on a bad day and cry, because you will have bad days during cancer.
If you’re not being heard by your doctor, you can go to somebody else. There are plenty of oncologists and different hospitals. You don’t sign a lifelong contract with one doctor; you can get a second and even a third opinion.
Use your nurse navigator and your social worker to help you navigate through this journey. They can help you with funding and so many other things. In Atlanta, they sent me paperwork to get free MARTA public transport or by taxi to get to my appointments. They sent me foundations to apply for financial assistance. Sometimes, I would just call my social worker to check-in. She could connect me with counseling or peer support services if I needed them. Don’t be afraid to ask for help.
Journaling helped me so much. I spent time daily writing about everything I was dealing with, which helped me relieve so much stress. People don’t address the mental aspects of cancer treatment, but that was something I had to address early on. I would look into the mirror and not see my hair anymore, that alone was extremely hard. That’s why I started using the hashtag #BeautifulWithMSandCancer. I had to remind myself that I’m beautiful.
Go out and do things you love. I love going to the zoo and the aquarium, and my supporters knew that. My coworkers would surprise me with tickets to the aquarium right before I had my next chemo treatment. I felt like a kid in a candy store, I was so happy. Those visits were healing for me, bringing me joy and giving me the peace I desperately needed during treatment.
When your supporters aren't immediately available, you need to be able to lift yourself. Learning how to uplift yourself is a powerful process. You’re using your own voice to tell yourself that you’ve got this. Not everyone has a large community to help them through cancer treatment. You need to know that you still have yourself to rely on when you need to.
Many people don’t want to talk about their cancer/chronic illness journey. That’s completely fine! Don’t feel pressured to share if you aren’t comfortable. Your journey is your personal story and you don’t ever have to share it. But if you do choose to share your story, feel empowered in knowing that your story is going to help someone else going through this journey. I’ve met many types of people during my journey, everyone from long-term cancer survivors to metastatic thrivers. Every time someone lets me know that they felt seen in my story, I know that I didn’t go through this in vain. I’m not sharing my story in vain.
Connect with Paris on Instagram @beautifulwithms.
Photos courtesy of author.