Tag: breast cancer

The Facts About Cold Capping



I was diagnosed with breast cancer in 2015, right around the same time the first FDA-approved cold cap came out. I’d heard about the potential hair-saving helmet on the news, and I crossed all my follicles that it could work for me as I prepared to start chemotherapy.

Unfortunately, I wasn’t a candidate for scalp cooling therapy. Back then, the cooling devices were only approved for early-stage breast cancer and less potent types of chemo. I was stage 3 and taking doxorubicin, also known as the “red devil.” So, yeah, pretty potent stuff.

Although I was disappointed that I couldn’t try cold capping to reduce hair loss during chemo, just knowing it was out there made me hopeful for advancements in cancer treatments. Hair loss may seem like a small thing when talking about disease, but it can be really devastating. One recent report cited up to 14% of women won’t consider chemotherapy because of hair loss.

Cold caps don’t work for everyone, and results vary from person to person depending on a lot of different factors. But new research shows using cold caps can help some people keep a good amount of hair during chemo — even people getting the red devil: In one study, 71.4% of people on doxorubicin saw successful hair retention. That’s a hair flip in the right direction.

If you or someone you know is interested in cold caps for chemo-induced hair loss, here’s what you need to know.

What is cold capping?

Cold capping involves wearing a helmet-like device to lower the temperature of the scalp during chemotherapy. The cold temperature decreases blood flow, which can reduce the amount of chemo that reaches the hair follicles and may reduce hair loss for some people.

What are the types of cold caps?

Scalp cooling therapy includes two types of devices:

  • Automated: The insulated cold cap is hooked up to a machine that circulates cooling liquid or gel inside the cap. Once the device is hooked up, the cooling system will keep the temperature where it needs to be. Automated cold caps are regulated by the FDA.
  • Manual: The frozen gel caps are stored in a freezer or with dry ice. Because the gel will start to warm once it’s on the scalp, a new frozen cap will have to be replaced about every 30 minutes. Manual cold caps are not regulated by the FDA.

How do cold caps work?

Both types of cold caps work by reducing the temperature of the scalp before, during and after chemo.

Typically, the person administering the chemo will help set up the automated cold cap machine and make sure the temperature is correct and that the cap is secured tightly around your head.

People using manual caps also need an outside pair of hands to help with the caps, although it doesn’t have to be a nurse — family or friends can help during treatment.

Who can use cold caps?

People with solid tumors (breast, colon, lung, gynecological) can use cold caps to help reduce hair loss during chemo.

Who shouldn’t use cold caps?

Cooling caps are relatively safe overall, but some people with certain health conditions shouldn’t use cold caps.

For example, people with blood cancers like leukemia or lymphoma shouldn’t use cold caps because the restricted blood flow may stop the chemo from getting to where it needs to go.

You also shouldn’t use cold caps if you:

  • Have central nervous system cancer
  • Are getting chemo for a bone marrow transplant
  • Had radiation to the head or will have radiation to the scalp

Cold capping is not recommended for people who have cold-agglutinin disease, cryoglobulinemia and post-traumatic cold dystrophy.

What are the side effects of cold caps?

Cold caps live up to the name, so if you’re sensitive to cold temperatures, you may feel uncomfortable during the sessions. Other side effects of cold capping can include:

  • Dry skin
  • Feelings of claustrophobia when wearing the cap
  • Headache attacks
  • Nausea
  • Cold thermal injury (burn) from manual caps

Do I need a prescription for scalp cooling therapy?

Whether you need a prescription depends on which type of cold cap you want to try. The automated systems require a prescription, and the manual systems do not. Always be sure to ask your healthcare provider before using any type of scalp cooling device.

Is cold capping covered by insurance?

Manual frozen caps are not covered by insurance, but automated cold caps are covered by Medicare and may be covered by other insurance plans.

If you need help paying for the cooling therapy, nonprofit organizations such as HairToStay and The Rapunzel Project may be able to help cover the cost of cold capping.

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My “Small” Cancer Turned Out to Be Stage 4 Breast Cancer


As told to Jacquelyne Froeber

October is Breast Cancer Awareness Month.

December is my birthday month. It was also the month I scheduled all my yearly health exams, including my mammogram.

But December 2014 was busy, I guess. (I burned all my journals from that time — but that’s another story.) I don’t remember why I didn’t go for my mammogram, but I didn’t get one until June 2015.

The day after the exam I got a phone call. There was something abnormal in the imaging, and I needed to have a biopsy. I was a nurse, so I knew that wasn’t great news, but I had the biopsy that week and went about my normal routine.

As an on-call hospice nurse, my schedule was pretty consistent. I worked seven days on, seven days off and — most important — I took a nap between 2 p.m. and 4 p.m.

My husband and kids knew not to call me during that time, so when my phone started buzzing during my nap, I was pretty annoyed. It was the provider’s office. “This isn’t a good time to talk,” I said.

“You have breast cancer,” the woman on the phone said.

“OK, can you call me back tomorrow? I’m on call at 5.”

She was startled. But she said OK. I hung up, rolled over and went back to sleep.

I know it sounds strange to just fall back asleep, but my patients depended on me. And I needed that nap. The next day my provider called and I made the time to listen. He said the cancer was small enough for a lumpectomy. So we scheduled the surgery for the following week.

By that Thursday, though, I’d noticed new imaging requests in my patient portal but no one could tell me why they were ordered.

When I finally got the nurse on the phone, I started asking her questions, and she cut me off. “Don’t worry about the tests — I do this all the time,” she said. “All you have to do is show up on Monday.”

I paused and felt the sting of being dismissed. “You may do this every day, but I’m not diagnosed with breast cancer every day,” I said. “And I will call the doctor and let him know why I’m not having the surgery with you. Have a good day.”

I hung up the phone. My mind and heart were racing. I’d just fired my provider! But I couldn’t stay with an office that wouldn’t answer my questions … right? Tears sprang to my eyes.

My husband helped calm me down and we found a different provider. I’d have to wait another month for the lumpectomy — but that was fine with me. During that time, I had the other tests that were ordered, including a PET scan. That scan showed the cancer had spread to the bone.

I had stage 4 breast cancer.

When I heard the news I was shocked. Within a week, I went from “small” cancer and a lumpectomy to plans for a bilateral mastectomy and chemotherapy. I learned that stage 4 — also called metastatic — cancer meant I would need ongoing treatment probably for the rest of my life.

Amid all the confusion and depressing news — there was a bright spot. My daughter had just found out that she was pregnant despite being told she couldn’t have children. The thought of holding my grandchild gave me extra hope that I could get through the surgeries and treatments and also keep my quality of life so I could enjoy time with my family.

The months went on, and after the baby was born, I’d put him on my chest despite the double mastectomy, and we would sleep like babies on my days off of work.

I continued working as much as I could through chemo but it was tough. I felt weak. I couldn’t even drive to work — my husband had to drive me. But I put on my bandana and pushed forward. In 2016, I got the best news: My scans showed no evidence of disease.

In 2017, I felt good enough to move, and my husband, John, and I relocated to a small town in eastern North Carolina. I got a new job as a hospice nurse.

We were only there for about six months when I had a blood clot in my left lung. Then, because of the blood thinners I was on, I had a ministroke. And then one more devastating blow: My provider said I couldn’t work anymore.

I was crushed. I’d been working for almost 40 years. I was the primary breadwinner in our family. Now, I wasn’t going to have income or insurance.

I spent the next seven days looking for financial resources that could help me pay for my medical treatments. I applied for disability — and got it — but it wouldn’t kick in for five months.

Then I came across an organization called Living Beyond Breast Cancer that offered funding and resources for people with metastatic breast cancer. They were hosting an annual conference in Philadelphia, and I decided to go.

At the time, I really didn’t know much about metastatic breast cancer outside of my personal experience. I’d also never met another Black woman with metastatic breast cancer. When I walked into the conference hall, I was blown away by the sheer number of people there. I probably looked like a deer in headlights going from booth to booth, but everyone was so kind and helpful. I got the financial guidance I needed. I heard stories from women who were eight and nine years into their diagnosis and thriving. I bonded with other Black women with metastatic breast cancer. All of it changed my life.

After the conference, I signed up for everything I could do as far as advocacy work for the organization. I traveled all over the U.S. and learned about the disease and new treatments and brought information back to my rural community in North Carolina. I’d learned that breast cancer rates are higher in women who live in rural areas and death rates are higher too compared to the national average. And these numbers are worse for women of color.

Early on, it became clear to me that information regarding Black people and metastatic breast cancer was lacking. But it wasn’t clear why. In 2019, I started working with an epidemiologist, Marina Pomare Kaplan, on a research project and survey that focused on the reasons why Black people weren’t being included in these clinical trials.

Unfortunately, Marina passed away in 2020. I thought that meant our research efforts were done, but a few months later, the Metastatic Breast Cancer Alliance contacted me and wanted to move forward.

We started the BECOME research project based on the research Marina and I had been doing. BECOME stands for Black Experience of Clinical Trials and Opportunities for Meaningful Engagement. And what we found with our survey was a big shocker. The overall reason why Black people weren’t being involved in clinical trials? It was because no one was asking us to participate. No one was having a conversation with us.

From there, I thought, Let’s find a way to get this information to providers. We planned an event the day before the San Antonio Breast Cancer Symposium in 2022, which is basically the biggest breast cancer conference in the world. It was my goal to have 100 people there — or fill half the seats in the room.

But that didn’t happen. The event was so packed I had to grab spare folding chairs. People lined up against the wall to listen to our research.

As I looked out at all the different faces in the room, I was overcome with emotion. I felt so proud to get all these people — providers, pharmaceutical reps, women of color — together in the same room to learn about the importance of including Black people in clinical trials for metastatic breast cancer.

I thought about how far I’d come in my own journey — although I hate to call it a journey. It just doesn’t sound right when you’re talking about being bald and going to chemo. But being a patient advocate helped me help other people when I couldn’t through nursing anymore.

None of us signed up to be in this club. But all of us deserve representation and research to help us live our best lives with metastatic breast cancer.

Resources

BECOME – Black Experience of Clinical Trials and Opportunities for Meaningful Engagement

Living Beyond Breast Cancer

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El diagnóstico de cáncer de mama de Olivia Munn es una señal de alerta para todas las mujeres



Cuando la actriz Olivia Munn, de 43 años, publicó en Instagram que recibió un diagnóstico de una forma agresiva de cáncer de mama, no solo recibió mucho apoyo, sino que usó su estatus de celebridad para concientizar acerca de una prueba poco conocida que salvó su vida.

El año anterior, Munn estaba realizando pruebas que tenía planificadas antes de ir a Alemania para la filmación de su nueva película de ciencia-ficción. Se sometió a su mamografía anual e incluso a pruebas genéticas para detectar la mutación BRCA. Ambas pruebas mostraron resultados normales. Pero cuando su doctor tomó el paso adicional de usar la herramienta de evaluación de riesgo de cáncer de mama (BCRAT, por sus siglas en inglés) que tiene varias preguntas acerca de antecedentes familiares y salud reproductiva, el riesgo de Munn fue del 37%. Fue lo suficientemente alto para que su doctor recomendara la RM que detectó su cáncer.

La vida de Munn se convirtió repentinamente en una pesadilla y, en vez de ir a Alemania, se sometió a cirugías importantes en un período de 10 meses, incluyendo una mastectomía doble, una disección de ganglios linfáticos, una cirugía reconstructiva y una mastectomía con conservación del pezón. En febrero de 2024, hizo que se remuevan sus ovarios y útero para evitar que el cáncer reaparezca.

Cuando Munn divulgó al público en general lo que su diagnóstico de cáncer implicó para ella, atribuyó la detección temprana a que su doctor usó la BCRAT. “Soy afortunada. Lo detectamos suficientemente temprano para tener opciones. Deseo lo mismo para cualquier mujer que tenga que enfrentar esto algún día”, publicó en Instagram.

Según Mary Jane Minkin, M.D., una ginecóloga de Yale New Haven Hospital y miembro del consejo de asesoría de HealthyWomen, las mujeres deberían someterse a mamografías todos los años desde que cumplen 40 años. Sin embargo, tal como ocurrió con Munn, someterse a una mamografía no siempre es suficiente.

“Las mamografías no detectan del 10 al 15% de los cánceres. No son infalibles en lo que se refiere a la salud mamaria. En esos casos es cuando la herramienta de evaluación de riesgo es útil”, dijo Minkin, quien explicó que si detectas un cáncer de mama en forma temprana, tal como lo hizo Munn, la tasa de supervivencia es muy alta.

Cómo funciona la herramienta de evaluación de riesgo de cáncer de mama

La BCRAT usa la información personal de una mujer para estimar el riesgo de desarrollar cáncer de mama invasivo en los siguientes 5 años y hasta la edad de 90 años. “Básicamente se asegura de que las personas que tienen un mayor riesgo se sometan a pruebas en forma regular”, dijo Minkin.

Según el Instituto nacional de cáncer, la herramienta evalúa:

  • La edad
  • La edad en la que tuviste tu primer período menstrual
  • La edad en que tuviste tu primer parto de un niño nacido con vida
  • El número de parientes de primer grado con cáncer de mama
  • El número de biopsias previas de mama
  • La presencia de células precancerosas en la mama

“Ser mujer es el mayor factor de riesgo. Entre más envejecemos, mayor es el riesgo”, dijo Minkin. Pero hay muchos otros factores que deben considerarse. “Si tenías 9 o 10 años cuando empezaste a tener períodos menstruales, tienes un mayor riesgo que alguien que empezó a tener períodos menstruales a los 15 años”, explicó.

El número de hijos que tienes y la edad a la que los tuviste también puede ser un factor de riesgo. Tener varios hijos antes de cumplir 35 años, reduce tu riesgo.

La genética también juega un papel importante. Entre más parientes en primer grado, es decir, tu madre, hijas o hermanas, hayan recibido diagnósticos de cáncer de mama, mayor será tu riesgo.

Lee: A mi hermana, a mi mamá y a mí nos diagnosticaron cáncer de mama en un plazo de 18 meses >>

Entre más biopsias de mama hayas tenido, más elevado será tu riesgo también. Incluso si las biopsias tienen resultados negativos, el hecho que se requirieron sugiere que algo sospechoso está ocurriendo en tu mama.

La BCRAT, que está disponible en línea y en la oficina de tu proveedor de atención médica, analiza toda tu información y proporciona una puntuación de la evaluación del riesgo. Personas con una puntuación de más del 20% deberían someterse a mamografías anualmente y a RM de seno desde que cumplen 30 años.

Limitaciones de la BCRAT

Aunque la BCRAT puede salvar vidas, tiene limitaciones. La herramienta no reemplaza pruebas genéticas y no puede detectar en forma precisa el riesgo de mujeres que portan las mutaciones BRCA1 y BRCA2. Tampoco puede evaluar el riesgo de mujeres que tienen antecedentes de cáncer de mama.

Según la Susan G. Komen Foundation, la herramienta evalúa el riesgo a nivel grupal y no a nivel individual. Esto significa que proporciona el riesgo promedio de cáncer de mama para un grupo de mujeres con factores de riesgo similares, así que no puede predecir si una mujer tendrá cáncer de mama en forma individual.

Además, la BCRAT no usa todos los riesgos conocidos establecidos para cáncer de mama, tales como el cigarrillo, la dieta y la obesidad, lo cual puede limitar sus predicciones.

El modelo original solo usaba datos recolectados de mujeres de raza blanca, pero ahora puede estimar el riesgo para mujeres de raza negra, asiática, mujeres de las islas del pacífico e hispanas. Sin embargo, es posible que no pueda evaluar en forma precisa a otros grupos raciales y étnicos.

Conoce tus opciones

Si usas la herramienta en línea, habla de los resultados con tu proveedor de atención médica para asegurarte de que los estás leyendo correctamente. Si tienes un riesgo alto, encuentra a un experto de confianza que defienda tus intereses para que te sometas a pruebas apropiadas y para que obtengas la atención que necesitas.

Si tienes una puntuación alta en la BCRAT, eso no significa que necesites una mastectomía. “Hay medicamentos que pueden usarse para reducir el riesgo y hay cosas que las personas pueden hacer por sí solas”, dijo Minkin. Reducir el consumo de alcohol, hacer ejercicio en forma regular, mantener un peso saludable y no fumar puede ayudar. “Independientemente de cuál sea tu riesgo, mantente al tanto de lo que ocurre en tus mamas”. Si ves algún cambio, no lo ignores.

Este recurso educativo se preparó con el apoyo de Daiichi Sankyo y Merck.

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Mi mamá, mi hermana y yo tenemos una mutación genética BRCA2


Tal como se relató a Erica Rimlinger

Cuando mi hermana recibió el diagnóstico de cáncer de mama de etapa 2, ella y todos nuestros familiares nos conmocionamos. Ella era saludable. Era joven, tenía un poco más de 40 años. No había antecedentes familiares de cáncer de mama. Pero nuestra conmoción inicial estaría seguida de una serie de sustos posteriores que afectarían a toda la familia.

Debido a la edad de mi hermana cuando le diagnosticaron, su equipo médico recomendó que se someta a pruebas para detectar mutaciones genéticas, incluyendo las mutaciones genéticas BRCA, las cuales se asocian a ciertos cánceres, incluyendo los de mama, de ovario y de próstata. Tuvo resultados positivos en una prueba de mutaciones genéticas BRCA2, lo cual significaba que otros familiares podían tenerla. ¿Teníamos los demás esta mutación genética también? ¿Deseábamos saberlo?

Mi mamá y yo decidimos someternos a pruebas, y ambas tenemos una mutación genética BRCA2. Otra vez hubieron olas de conmoción en toda la familia. A lo largo de varios años, 13 familiares decidieron someterse a pruebas genéticas. 11 de nosotros tuvimos resultados positivos de la mutación, incluyendo algunos parientes hombres.

Kelly Miyahara and family

En ese entonces, tenía 37 años y amamantaba a mi bebé. Era una época particularmente difícil para mí en la que aprendí que necesitaba mamografías más tempranas y frecuentes porque tendría que dejar de amamantar a mi hijo para obtener un resultado preciso. Mi esposo y yo también deseábamos tener un segundo hijo y saber que portaba una mutación genética BRCA2 nos obligó a pensar en asuntos tales como la transmisión del gen o una posible cirugía en el futuro. Además de incrementar el riesgo de cáncer de mama, esta mutación se asocia a un mayor riesgo de cáncer ovárico, un cáncer que es difícil de detectar porque frecuentemente no causa ningún síntoma antes de propagarse.

A pesar de eso, aunque los resultados complicaban mis planes, sentí que someterme a pruebas me proporcionaría el conocimiento para tomar decisiones importantes acerca de mi salud y que podría controlar mi riesgo antes de que ocurra alguna emergencia médica. Mi hermana no tuvo ese lujo. No sabía que portaba el gen hasta que le diagnosticaron cáncer de mama de etapa 2.

Mi mamá siempre se sometía a mamografías anuales. Pero con su mutación genética BRCA2, sus proveedores de atención médica recomendaron que alterne entre una mamografía y una RM cada seis meses. Solo unos meses después del diagnóstico de mi hermana, el equipo médico de mi madre descubrió que ella tenía CDIS de etapa 0, un cáncer de mama no o pre – invasivo.

Parecía increíble. Había vivido tanto tiempo sin saber que tenía un mayor riesgo de cáncer. Y justo cuando lo descubrió, el cáncer ya había empezado en sus primeras etapas. Su diagnóstico fue útil para que ella y su equipo de atención preparen el mejor plan de acción. Su tratamiento contra el cáncer fue seguido por una salpingooforectomía, la cual removió sus ovarios y trompas de Falopio para evitar que haya cáncer en esas áreas.

Mientras ayudaba a mi hermana y a mi mamá a lidiar con sus tratamientos, pensaba en mis propias decisiones médicas. La duda de cuándo mi esposo y yo podríamos tener un segundo bebé o si eso era posible torturaba mi mente. No se realizan mamografías en forma rutinaria durante el embarazo y son menos precisas durante la lactancia. Sabía que no podían pasar años sin que me someta a pruebas. El cáncer de etapa 2 de mi hermana apareció seis meses después de una mamografía sin resultados anormales. Decidí usar la información que recibí de mis pruebas genéticas para implementar pasos para proteger mi salud.

Programé una mastectomía doble para la primera semana de enero de 2019. Tres días después de la cirugía, mi cirujano me llamó para decirme que había tomado la decisión correcta. Un equipo médico descubrió cáncer. Al igual que el cáncer de mi madre, el mío era de etapa 0.

El conocimiento de mi mutación genética BRCA2 me proporcionó la mejor oportunidad en una situación mala. Removieron mi cáncer antes de saber que lo tenía. Saber mi condición BRCA me permitió tomar decisiones importantes acerca de mi tratamiento.

Sin embargo, debía considerar otras cosas. Me preocupaba posponer la cirugía ovárica que recomendaron hasta después de otro posible embarazo. ¿Qué pasaría si me demoraba mucho en embarazarme? ¿Qué pasaría si trasmitía mi mutación genética? Mi doctor recomendó que tome el tiempo y el espacio que necesite para sanar, para sentir lo que debía sentir y para tomar las decisiones que sentía que eran las correctas para mí.

Kelly Miyahara and family

Tuvimos suerte, me embaracé rápidamente con nuestro segundo hijo, justo después de que comenzó la pandemia. Algunos meses después de su nacimiento, programe la cirugía final que eliminaría el riesgo más urgente de tener una mutación genética BRCA2: una salpingooforectomía. La parte más estresante de esta consideración era saber que no podría cargar a mi bebé mientras me recuperaba de la cirugía. Tuve recuerdos de cuando no pude cargar a mi primer hijo después de mi doble mastectomía y cirugías reconstructivas.

Incluso cuando me estresaba la planificación familiar, sabía que el conocimiento de mi mutación genética BRCA2 era un regalo inmensurable. El regalo del conocimiento nos permitió a mi mamá y a mí detectar los cánceres en forma temprana y obtener planes personalizados de tratamiento diseñados por nuestro proveedor de atención médica. Tuvimos el tiempo y las opciones de nuestro lado. El conocimiento nos empoderó para implementar medidas para obtener mejores resultados, antes y después de que nos diagnostiquen cáncer.

No podemos escoger nuestros genes, pero tenemos la opción de saber lo que nos indican. No conozco mucha gente que considere a una familia con tantas mutaciones genéticas BRCA2 bienaventurada, pero creo que somos increíblemente afortunadas. Tenemos suerte de vivir en una época en la cual podemos entender lo que los genes nos indican. Tenemos suerte de tener opciones en lo que se refiere a nuestra salud y a nuestros cuidados preventivos. Por encima de todo, tenemos suerte de apoyarnos mutuamente mientras enfrentamos esta dificultad juntas. Las mutaciones genéticas BRCA2 y los cánceres de mama causaron olas de conmoción en nuestras vidas, pero enfrentarlas reforzó y mejoró nuestras relaciones.

Visita beBRCAware.com para obtener información sobre en qué forma las pruebas genéticas pueden proporcionar datos importantes acerca del riesgo de cáncer y cómo pueden ser útiles para tomar decisiones terapéuticas después de un diagnóstico.

Este recurso educativo se preparó con el apoyo de AstraZeneca ybeBRCAware.com.

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Fighting Breast Cancer My Way


As told to Erica Rimlinger

For 42 years, I’ve been living with
complex regional pain syndrome (CRPS), a disorder that causes non-stop intense pain. In that time, I’ve had doctors call me crazy, delusional and a liar. One doctor was so abusive, he told me I should “just shoot myself in the head.” It’s no wonder some people call CRPS the “suicide disease.” Often, the intense, unpredictable pain that left me bedridden for a decade felt like the least of my problems: the major battle was getting the medical profession to believe and treat me.

After enduring years of mistreatment from doctors, I learned to manage my condition using holistic self-care. I didn’t want to enter a doctor’s office ever again unless the need for western medical care was undeniable. That day arrived when I was diagnosed with breast cancer.

When I felt the breast lump in 2018, I waited a year to get it checked. I didn’t trust doctors, who had left me hopeless, abandoned and depressed. But when it didn’t go away and grew larger, I gave in. My first reaction to the diagnosis was shock that I had cancer. My second reaction was dread that I had to re-enter the western healthcare system. Twenty years before, I had been diagnosed with
ductal carcinoma in situ (DCIS) in my other breast, and my medical team told me I only had months to live unless I underwent aggressive treatment. I correctly suspected my doctors would not consider my CRPS and that my body could not handle their regimen. I did my own research and learned that most DCIS doesn’t become invasive, and overtreatment was common. I refused their treatment options.

Now that I was diagnosed with stage 2B
triple negative breast cancer, I took six months to decide what treatment would be best. The standard plan of chemotherapy, surgery and radiation gave me an impossible needle to thread. The healthcare system didn’t take my CRPS seriously, but I knew surgery and radiation would cause nerve damage, spiking my pain to an intolerable level. And I feared it would never simmer down.

Cynthia receiving an immunotherapy infusion. 2022.Cynthia receiving an immunotherapy infusion. 2022.

I decided to go with chemotherapy only because I didn’t want to lose the use of the upper right side of my body. As expected, I was verbally abused for thinking outside the box. One doctor told me, “My other patients WANT to live.” I wanted to live just as much as they did. But I wanted quality of life. I’d lived without it and couldn’t go back there. I’d been battling for my quality of life for decades.

As it turned out, my tumor was a “
super-responder” to chemotherapy, disappearing completely by imaging standards. I continued to get monitored and use my self-care techniques, which included exercise, good sleep habits and careful nutrition.

Eighteen months later, my oncologist found a cancerous lump in my right
lymph node that quickly grew to the size of a golf ball. After hearing his treatment plan for my recurrence, I hung up the phone and started screaming in fear and frustration.

He’d recommended eight rounds of chemo, followed by a new
immunotherapy treatment that had recently become available. After that, he recommended I undergo surgery, radiation and more immunotherapy. After careful consideration and much research, I consented only to low-dose oral chemo and immunotherapy.

The chemo shrank the tumor a little bit, but then stopped working. I was horrified to learn my insurance company wouldn’t cover the immunotherapy because I hadn’t agreed to surgery. I felt I was being punished for making my own treatment choices.

I quickly learned about and was going to try a procedure called
cryoablation, a technique that freezes the tumor instead of removing it surgically, which I prayed would avoid triggering my CRPS. Then a blessed event happened — the company that made the immunotherapy treatment had a compassionate care program that allowed me to get the immunotherapy.

After one immunotherapy treatment, my tumor disappeared. My doctors were stunned. There was no need for cryoablation as there was nothing left to cryoablate. I was called a “miracle.”

Looking back from a distance of two years, I wonder if “miracle” is the right term for what happened to me. Am I a miracle, or did I simply make a series of thoughtful decisions that were right for me?

This is not to say immunotherapy was easy. I was hospitalized for
colitis and later developed reactive arthritis. It also spiked my CRPS, but to a tolerable level. Bottom line, immunotherapy cured me without destroying my quality of life.

I’m grateful that years of self-advocacy made me strong enough to stand my ground with the doctors who talked to me as though I was a child. I’m also grateful I eventually found a team of four doctors that listened to me, believed in CRPS, and embraced the reality that surgery and radiation would destroy my life.

cynthia cheering in the pool2020

Best of all, this team worked together, consulting about my care with one another, my life partner, John, and me. Being part of a shared decision-making team that valued individualized care was such a powerful experience, I regained some trust in the medical system. I’m a strong believer that a doctor who isn’t threatened by other opinions is the sign of a true healer.

Sadly, when we are diagnosed with cancer, we tend to panic and blindly put our care into our doctors’ hands. However well-intentioned they may be, we’re the ones who must live (or die) with the consequences of their treatment choices. For the best wellness outcome, I believe we must take responsibility for our own care, and that includes self-care practices to make our bodies healthy enough to make the best of the treatments we choose. I’m certain I’m still here today because I followed my gut.

These days, I eat a healthy, cancer-fighting diet full of fish, berries, nuts and leafy greens. I’m an avid lap swimmer, and I make plenty of time for cuddles with my kitties. I meditate and pray every day, while working on releasing
past traumas that have driven my illnesses. I’ve become better at forgiving the people who have harmed and abandoned me.

Also, I engage in meaningful, creative work. I continue to run the nonprofit I founded 22 years ago to help other women in pain. And I’m rekindling past passions. I spent my childhood training for a career as a performer, but as a part-time wheelchair user with CRPS, Hollywood’s doors have been closed to me. After fighting for my life twice, that’s no longer stopping me. I recently got a top-end agent and am already getting great auditions and call-backs for acting and singing roles. Yes, I’m doing it my way.

I look forward to hitting my third cancer-free year, which my team tells me is the goal line for a cure. Until then, I’ll continue to trust myself with my health and happiness.

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.

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