When It Came to My Breast Cancer, I Did It My Way

When It Came To My Breast Cancer, I Did It My Way

In “When It Came to My Breast Cancer, I Did It My Way,” you learn about Cynthia Toussaint's inspiring journey through a harrowing health battle. For 42 years, Cynthia contended with complex regional pain syndrome (CRPS), a condition that brought her debilitating pain and compounded her challenges when she was later diagnosed with breast cancer. Navigating a medical system that often dismissed her, Cynthia chose to take control of her treatment path, refusing conventional options that could exacerbate her pain and instead opting for a customized approach with chemotherapy and immunotherapy. Through her steadfast self-advocacy, thoughtful decision-making, and unwavering commitment to her own well-being, Cynthia not only fought off the cancer but also managed to maintain her quality of life. Her story is a testament to the power of trusting yourself and being an active participant in your health journey. Have you ever felt like you were left alone to navigate a daunting healthcare system or make critical life decisions with only your gut and a sprinkle of hope to guide you?

When It Came to My Breast Cancer, I Did It My Way

As told to Erica Rimlinger

Living with complex regional pain syndrome (CRPS) for 42 years has taught me to be my own advocate and trust my instincts. It's also taught me that sometimes, making decisions based on my values and needs is the best way to retain a semblance of quality in my life. So, when I was diagnosed with breast cancer, I made a heartfelt decision to do things my way.

My Battle with Complex Regional Pain Syndrome (CRPS)

For 42 years, I've been living with complex regional pain syndrome (CRPS), a disorder causing non-stop intense pain. In that time, I've had doctors call me crazy, delusional, and a liar. One doctor even went as far as to abusively suggest I should “just shoot myself in the head.” It's no wonder CRPS is sometimes also known as the “suicide disease.”

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Often, the intense, unpredictable pain that left me bedridden for a decade felt like the least of my problems; the real battle was getting the medical profession to believe and treat me. Eventually, I learned to manage my condition using holistic self-care techniques. I didn't want to enter a doctor's office ever again unless western medical care was absolutely essential.

The Reluctant

That inevitable day arrived when I felt a lump in my breast in 2018. My distrust of doctors led me to delay getting it checked for a year, hoping it would disappear on its own. But eventually, the lump grew larger, and I conceded to medical evaluation. The ? Stage 2B triple-negative breast cancer. I was shocked, scared, and reluctant to re-enter the medical system.

I remembered my previous 20 years earlier of ductal carcinoma in situ (DCIS) in my other breast and the aggressive treatment suggested back then. I rejected their advice, and over the years, I educated myself on the subject, learning that overtreatment was common. I wasn't going to undergo unnecessary treatments that didn't take my CRPS into account.

When It Came To My Breast Cancer, I Did It My Way

Deciding on a Treatment Plan

I took six months to carefully consider my treatment options for my new diagnosis. The standard plan of chemotherapy, surgery, and radiation didn't consider my CRPS. Surgery and radiation were especially problematic as they would cause nerve damage, spiking my pain to intolerable levels.

I opted for chemotherapy only to preserve the use of the upper right side of my body. As expected, I faced criticism for this unconventional decision. One doctor remarked scornfully, “My other patients WANT to live.” But I wanted quality of life. Having lived without it for so long, going back there was not an option.

A “Super-Responder” to Chemotherapy

Despite the skepticism, chemotherapy ended up working exceptionally well for me. My tumor became a “super-responder,” disappearing completely by imaging standards. By only opting for chemotherapy while continuing my self-care practices—which included exercise, good sleep habits, and a nutritious diet—I preserved my health and quality of life.

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Eighteen months later, however, a new cancerous lump appeared in my right lymph node. Faced with aggressive treatment recommendations once again, I decided to trust my instincts and only opted for what resonated with me. The treatments initially recommended by my oncologist felt extreme, so I consented only to low-dose oral chemo and recently available immunotherapy.

Although chemotherapy shrank the tumor initially, it eventually stopped working. Learning that my insurance wouldn't cover the immunotherapy since I hadn't agreed to surgery felt like a punishment for making my treatment decisions. But then, a miracle—or perhaps just luck—came my way.

When It Came To My Breast Cancer, I Did It My Way

The Power of Compassionate Care

Thanks to the drug manufacturer's compassionate care program, I accessed immunotherapy treatment. Following just one session, my tumor disappeared. My doctors were amazed and hailed it as a miracle. Whether it was a miracle or simply a result of defiant self-advocacy, the outcome was clear—I made the right decisions for myself.

Collaborative Care: Restoring Trust in Medicine

After many years of struggling within the healthcare system, I found a team of four doctors who truly listened, believed in my CRPS, and supported a more individualized treatment plan. This balanced care, which also involved my life partner, John, was a powerful, healing experience. It helped restore some of my trust in the medical system.

Here's how collaborative care helped me:

Medical Team Collaboration What It Meant for Me
Doctors who understood CRPS Treatment plans tailored to my condition
Shared decision-making Felt respected, heard, and supported
Individualized care Minimally invasive and more tolerable
Trust in other opinions Quality over quantity in healthcare

When It Came To My Breast Cancer, I Did It My Way

Emphasizing the Importance of Self-Advocacy

A cancer diagnosis often leads to panic and placing total trust in doctors' hands. However well-intentioned they may be, your health outcomes depend on the treatment choices you make. I believe taking responsibility for your own care is crucial to achieving the best possible outcomes. This includes nurturing your body with proper self-care practices, foods, and life choices.

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Here's my self-advocacy checklist:

  1. Do Your Research: Understand your diagnosis and treatment options.
  2. Trust Your Instincts: Listen to your body and mind.
  3. Seek Second Opinions: Get input from other medical .
  4. Ask Questions: Don't be afraid to ask for more information.
  5. Stay Informed: Keep up with the latest treatment developments.

My Life After Cancer: Doing It My Way

Today, I maintain a healthy, cancer-fighting diet full of fish, berries, nuts, and leafy greens. I'm an avid lap swimmer, and I make time for meditation, prayer, and spending with my cats. I've learned to forgive those who wronged me, release past traumas, and engage in activities that bring me joy.

Running a nonprofit that helps other women in pain fuels me with purpose, and I am rekindling my passion for performing. Despite past barriers, I recently signed with a top agent and am already receiving great opportunities for acting and singing roles. I'm wholeheartedly doing life my way.

Looking ahead, my ultimate goal is to reach my third cancer-free year. Until then, I'll continue trusting myself with my health and happiness.

When It Came To My Breast Cancer, I Did It My Way

Conclusion

Whether you are battling a chronic condition, a serious illness like cancer, or simply navigating the healthcare system, your journey is uniquely yours. Being informed, trusting your instincts, and advocating for yourself are vital steps in ensuring your health and well-being. Remember, it's your body, your life, and your decisions. Do it your way.


This educational resource was created with support from Merck.

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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions, and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.


Source: https://www.healthywomen.org/real-women-real-stories/fighting-breast-cancer-my-way

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