In “Managing My Breast Cancer My Way,” you follow Cynthia Toussaint's courageous journey as she navigates the complexities of fighting breast cancer while living with complex regional pain syndrome (CRPS). From her initial diagnosis to finding her unique path through unconventional treatments like immunotherapy and cryoablation, Cynthia shares the emotional and physical challenges she faced. She advocates for holistic self-care and emphasizes the importance of personalized medical attention. Her story is a powerful testament to resilience, highlighting the necessity of self-advocacy in healthcare and the empowerment that comes from making informed, personal decisions about your own treatment. Have you ever found yourself caught in a whirlwind of emotions after receiving a life-changing diagnosis? In “Managing My Breast Cancer My Way,” you'll hear about a remarkable journey of resilience, self-advocacy, and personal empowerment in the face of breast cancer.
My Journey with Chronic Pain
For the past 42 years, I've been navigating life with Complex Regional Pain Syndrome (CRPS), a condition that brings persistent, intense pain. During this time, I've had doctors doubt my sanity, label me as delusional or dishonest, and even one suggesting a tragic solution. It's no surprise that CRPS is sometimes called the “suicide syndrome.” The excruciating pain, which left me bedridden for a decade, was often a lesser concern compared to the struggle of finding medical professionals who would believe and treat me.
Transition to Holistic Self-Care
After years of enduring mistreatment from doctors, I adapted a holistic approach to manage my condition. I vowed never to enter another medical office unless absolutely necessary. This resolution was put to the test when I received my breast cancer diagnosis.
Discovering a Lump: The First Step
In 2018, I discovered a lump in my breast but waited a year before seeking medical advice due to my deep distrust of doctors. When the lump didn't disappear and grew larger, I reluctantly sought medical attention. The shock of the diagnosis—breast cancer—was quickly followed by a deep-seated fear of re-entering the Western healthcare system.
The First Cancer Diagnosis
Twenty years before this diagnosis, I was diagnosed with Ductal Carcinoma In Situ (DCIS) in the other breast. My medical team warned me that without aggressive treatment, I had mere months to live. However, I suspected they were not considering my CRPS and that my body wouldn't withstand their proposed regimen. After thorough research, I learned that most DCIS cases didn't become invasive and that unnecessary treatments were common. I chose to reject their treatment options, guided by this knowledge.
Facing Triple Negative Breast Cancer
When I was diagnosed with Stage 2B Triple Negative Breast Cancer, it took me six months to decide on the best treatment course. The standard plan of chemotherapy, surgery, and radiation was not feasible for me. The healthcare system didn't take my CRPS seriously, but I knew that surgery and radiation would cause nerve damage, exacerbating my pain to an unbearable level.
Choosing Chemotherapy
Despite my apprehensions, I opted for chemotherapy. I feared losing the ability to move the upper right part of my body if I didn't act. As expected, my non-traditional views were met with verbal abuse from some doctors. One even told me, “my other patients WANT to live,” implying that my choices indicated otherwise. However, I wanted to live just as much as anyone else; I also wanted a good quality of life. Having lived with a diminished quality of life for decades, I was determined not to return to that state.
Remarkable Response to Treatment
Miraculously, my tumor responded exceptionally well to chemotherapy, disappearing completely according to imaging standards. I continued with follow-ups and maintained my self-care practices, which included exercise, good sleep habits, and a careful diet.
Cancer Recurrence and New Challenges
Eighteen months later, my oncologist found a rapidly growing cancerous mass in my right lymph node. After hearing his new treatment plan, which included eight rounds of chemotherapy followed by a new immunotherapy, I felt overwhelmed and devastated.
Limited Treatment Acceptance
After thorough research and consideration, I agreed only to immunotherapy and low-dose oral chemotherapy. Although the chemotherapy shrank the tumor slightly, it eventually stopped working. I was disheartened to learn my insurance wouldn't cover immunotherapy since I declined surgery. I felt punished for making my own treatment choices.
Exploring Cryoablation
I quickly learned about cryoablation, a technique that freezes the tumor instead of surgically removing it. I also discovered a compassionate care program from the immunotherapy provider that allowed me to access the treatment.
A “Miraculous” Outcome
After just one treatment of immunotherapy, my tumor completely disappeared. My doctors were amazed, calling it a “miracle.” There was no need for cryoablation because there was no tumor left to remove. This remarkable result made me reflect—was it truly a miracle, or was it the result of well-thought-out decisions tailored precisely to my needs?
The Reality of Immunotherapy
While successful, immunotherapy was not without its challenges. I experienced colitis, reactive arthritis, and a significant increase in my CRPS symptoms, albeit to a tolerable level. Despite these side effects, the treatment cured my cancer without destroying my quality of life.
The Importance of Self-Advocacy
I feel fortunate that my years of advocating for my rights gave me the strength to stand by my decisions in front of doctors who treated me condescendingly. I'm equally grateful to have eventually found a team of doctors who listened, acknowledged my CRPS, and understood that surgery and radiation would have devastated my life.
Building a Supportive Medical Team
The best part of this journey was being part of a medical team that collaborated and made shared decisions. They communicated openly, shared information, and valued personalized care, which helped me regain some faith in the medical system. To me, a doctor who isn't threatened by differing opinions is a true healer.
Taking Control of My Care
When diagnosed with cancer, it's easy to panic and blindly place our trust in doctors. However, regardless of their good intentions, it's essential to remember that we live (or die) with the consequences of treatment decisions. For the best possible outcomes, we must take charge of our care, including maintaining our health through self-care practices. I strongly believe I'm still here today because I trusted my instincts.
Maintaining a Healthy Lifestyle
Now, I continue to follow a cancer-preventative diet rich in fish, berries, nuts, and leafy greens. I love swimming and spending time with my kittens. Daily meditation and prayer help me work through past traumas that have contributed to my illnesses. I'm also working on forgiving those who have hurt and abandoned me.
Engaging in Meaningful Work
I remain committed to the nonprofit organization I founded 22 years ago, which helps other women experiencing pain. Additionally, I'm rekindling my childhood passion for the entertainment industry. Despite living with CRPS and spending time in a wheelchair, I'm not letting it stop me anymore. I've reached out to a top agent, and I'm already landing significant auditions and roles in acting and singing. Yes, I'm doing it my way.
Looking Ahead
I look forward to celebrating my third year of being cancer-free, which my team says is the benchmark for a potential cure. Until then, I'll continue to have faith in my decisions regarding my health and happiness.
This educational resource was prepared with support from Merck.
Are you a woman with real stories you'd like to share? Let us know here.
Our stories are authentic experiences from real women. HealthyWomen does not endorse the views, opinions, and experiences expressed in these stories and does not necessarily reflect the official policy or position of HealthyWomen.
Source: https://www.healthywomen.org/real-women-real-stories/mi-lucha-contra-el-cancer-de-mama-a-mi-manera
