Jeannine Walston is an accomplished leader, respected expert and vibrant brain tumor survivor since 1998 as a cancer coach, consultant and speaker. Her extensive work includes for the U.S. Congress, cancer nonprofits, government agencies with NCI, FDA, and NCCAM, hospitals, clinics, doctors, providers, other businesses, cancer patients, caregivers and the public. She has knowledge and insights about research, treatments, integrative cancer care for the whole person and other topics. Learn more at 

Jeannine Walston

Jeannine Walston is an accomplished leader, respected expert and vibrant brain tumor survivor since 1998 as a cancer coach, consultant and speaker.

I never knew cancer would enter my life. Nobody in my family had cancer, and I did not think about the disease. I was in my early 20s and excited for my future.

Diagnosed with a brain tumor on March 18, 1998, parts of me went into a dark frozen place. I quickly had to find some ways to perform research to find the best course of action. Since then, I have had three awake brain surgeries in 1998, 2011 and 2013, radiation and chemotherapy in 2014, and an immunotherapy clinical trial with a dendritic cell-based vaccine the same year. I continued to have MRIs and other tests regularly that I still do.

Early in my cancer journey, I learned about complementary and alternative therapies. I wanted to prevent the brain tumor and support my wellness. Over several years, I focused on integrative cancer care for the whole person to improve quality of life and survival.

Research says that many cancers link to lifestyle factors and the environment. As a result, I studied and used new strategies that I felt would be optimal to live better and feel longer: a healthy organic diet, exercise, stress reduction, meditation, massage, acupuncture, a cleaner environment, the mind-body connection and other approaches have shown benefits to cancer patients. I’ve done much more than that, yet an unexpected problem emerged.

In 2018, I felt tremendously grateful to become a 20-year brain tumor survivor. But my body wasn’t perfect, including some funks in my gut. I saw two gastrointestinal doctors who ultimately said to get a colonoscopy and endoscopy. At that point, the U.S. government recommended a colonoscopy starting at 50 years, but being 45 years old, I did it anyway. The results showed almost 30 large polyps and 100 smaller polyps.

Moreover, I had to meet with a genetic counselor. The simple blood test showed I had mutations in the MUTYH gene from family history. This hereditary condition is characterized by developing multiple colorectal adenomatous and increased colorectal cancer risk. Due to my mutation, it is vital to get colonoscopies and endoscopies regularly. The report also noted different cancer types as possibilities.

The National Cancer Institute says that 5 to 10% of cancer diagnoses are related to genetics. Some research has shown that it is slightly higher. Regardless, each individual needs to address and track their unique situation.

Practitioners may not talk about genetics unless two family members have had cancer. In 1998 when diagnosed, nobody in my family had cancer. It only surfaced when my grandma was diagnosed with pancreatic cancer and died two weeks later in 2010, and my brother was diagnosed with an acoustic neuroma in 2018. They were diagnosed 12 and 20 years, respectively, after my brain tumor diagnosis.

I know genetic cancers are rare, but both patients and practitioners must explore and track the situation.

Through an ultrasound ordered by my OBGYN a few years ago, I learned that I needed to get endometrial surgery to remove polyps. That happened in 2020 and 2022. The pathology report from the endometrial surgery this year showed I had a precancerous lesion. Details said I needed to get a hysterectomy, which occurred in June of 2022. I am feeling vibrantly well while still taking care of my body post-surgery.

I know challenges can become opportunities, and adversity can be turned into actions. In my path, I’ve learned that understanding the past, addressing the present and engaging wellness for the future is essential for thriving. Indeed, even though the unexpected can emerge, it’s helpful to have a plan, team and self-care strategies blended with gratitude and resilience. I wish you optimal health and healing.

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Articles

A personal journey through cancer diagnosis and treatment highlights the importance of integrative care, genetic testing, and proactive health management. Despite a lack of family history, a brain tumor diagnosis led to multiple surgeries, radiation, chemotherapy, and participation in an immunotherapy trial. Emphasizing lifestyle changes and complementary therapies, the narrative underscores the role of genetics in cancer risk, as evidenced by a MUTYH gene mutation. Regular screenings and genetic counseling are crucial, even in the absence of immediate family history, to address potential hereditary cancer risks.

After being a 20-year brain tumor survivor, I met with a genetic counselor and learned that I have a MUYTH gene mutation.

My Insights to Cancer Genetics After More Than 20 Years of Brain Tumor Survival

As a 21-year brain tumor survivor, I've witnessed different types of "awareness" during Brain Tumor Awareness Month in May. Education is essential to spread the word about brain tumors, and more strategies are paramount to address this devastating disease.

Most people do not know the reality of brain tumors. The National Cancer Institute's (NCI) 2018 Annual Report to the Nation explained that many types of cancer death rates have decreased, but brain cancer has increased. In 2018, more than 78,000 people received a primary brain tumor diagnosis, and for those with a malignant tumor, the survival rate is less than 34%. In 2019, an estimated 86,970 people will receive a primary brain tumor diagnosis, according to statistics reported by the National Brain Tumor Society (NBTS). Brain tumors are the leading cause of cancer-related deaths in children and young adults age 19 and under in the United States.

Many brain tumor patients seek better treatments to improve the quality of life and survival. Unfortunately, in the last 30 years, only four brain tumor drugs, and one device, was approved by the Food and Drug Administration (FDA), according to NBTS. Scientific research — in laboratories and clinical trials – show some promise with new treatments and approaches. However, more research is expensive.

On May 5, I walked the 5K at Race For Hope in Washington, DC to fundraise for brain tumor research. Currently, donations total over $1,800,000 million for brain tumor research through the NBTS and Accelerate Brain Cancer Cure (ABC2). Anyone can still donate. Every dollar counts.

I also attended Head to the Hill orchestrated by the NBTS. The experience with training and lobbying Congress was extraordinary. I worked in Congress when I received a diagnosis of a brain tumor in March of 1998 and I know the importance of advocacy to create positive change.

At Head to the Hill, over 300 people lobbied Congress on policy agenda topics. Some include increased funding for medical research at the National Institutes of Health and National Cancer Institute, advancing programs created by the Childhood Cancer STAR Act, more funding for the Peer Reviewed Cancer Research Program within the Department of Defense (DOD) related to pediatric brain tumors and brain cancer, and supporting the Palliative Care and Hospice Education and Training Act. Advocacy through the NBTF continues throughout the year. Explore more information 

I learned in my journey that challenges can become opportunities and adversity to actions. Embrace the movement with awareness and actions in the brain tumor arena. Support the cause. Know your brain can provide meaningful differences in transformative ways.

Raising awareness about brain tumors is crucial, especially given the increasing incidence and mortality rates. Despite limited FDA-approved treatments, ongoing research offers hope, though it remains costly. Advocacy and fundraising efforts, such as the Race For Hope and Head to the Hill, play vital roles in supporting research and influencing policy changes. These initiatives focus on increasing funding for medical research, advancing pediatric cancer programs, and supporting palliative care education. Embracing awareness and advocacy can transform challenges into opportunities for meaningful change in the brain tumor community.

Learn about awareness and actions strategies during Brain Tumor Awareness Month and beyond.

Actions with Brain Tumor Awareness Month in May and Beyond

During January in Los Angeles this year, I was in a car accident in the rain. Shaking inside and crying, my physical and psychological crisis shattered me. As I processed the chaos, aspects emerged about trauma around my brain tumor journey.

I was only 24 years old when diagnosed with a brain tumor. I remember the disconnect as I tried to process my new reality while enduring the possibilities about dying. I had no idea how to deal with this lack of control. Before, during and after my first awake brain surgery in 1998, as well as over the last 20-plus years with more treatments and other factors, I’ve experienced more trauma.

Trauma can be defined in many ways, and I witnessed myself enduring post-traumatic stress disorders (PTSD). In the process, I’ve felt various types of physical, mental and emotional challenges with trauma, including many questions about my identity and safety.

I remember attending a cancer event years ago. I sat next to a woman whom I did not know named Tzipi Weiss, DSW, LCSW. She began a conversation with me and mentioned Post-Traumatic Growth (PTG), which is a term for the positive life changes that may come from trauma.

I’m grateful for the conversation that inspired me. Throughout my quest to transform and thrive, I’ve learned how PTG is a way to incorporate a bigger picture. Educated shifts with my mind, body and spirit have been a process over time. With progress, learning that challenges can become opportunities and adversity to actions, I was able to liberate myself and find more confidence with resilience.

As PTG continued in my mindset of curiosity, I conducted research. Some PTG studies of cancer patients and even caregivers showed an appreciation of life, personal strength, spiritual change and improved sense of relating to others. Those changes and experiences vary as many components occur with the pain and gain of cancer.

The levels of trauma transformed into PTG can impact not just individuals. Sandra L. Bloom, M.D., in 

Posttraumatic Growth: Positive Changes in the Aftermath of Crisis

, discusses changes in society. She wrote, “Throughout history humans striving to transform adversity into strength consistently possess a sense of moral commitment, a sense that personal and group trauma must be converted into a community asset, not just a personal asset or catastrophe. From such traumatic origins springs the co-construction or reconstruction of civilization.”

I know of people who find meaning and impact society from the cancer experience. Some patients, survivors and their loved ones have created non-profits focused on education, advocacy, research and more. Other have cultivated fundraising events, especially for research. I’m aware of various people changing their jobs and taking new directions to find their calling in life. And some individuals were working so hard and decided to take a break or quit. Other people wanted to travel, spend more times with family or share their cancer story.

Inspiration and motivation are helpful sources to impact individuals and societies. May we all evolve from some aspects of suffering and melt to a force larger than oneself. Now is the time.

Experiencing trauma from a brain tumor diagnosis and treatment can lead to profound psychological challenges, including PTSD. However, the concept of Post-Traumatic Growth (PTG) offers a framework for transforming adversity into positive life changes. PTG encompasses personal growth, spiritual change, and improved relationships, and can extend beyond individuals to impact society. This transformation can inspire individuals to engage in advocacy, education, and community-building efforts. Embracing PTG can help individuals find meaning and purpose, turning personal suffering into a catalyst for broader societal change.

Learn how the pain through the trauma of cancer can transform in positive ways.

Transforming the Chaos of Cancer to Post-Traumatic Growth

When I was diagnosed with a brain tumor in 1998 at 24 years old, I had no idea how long I would live. The experience was shocking as I entered a new world of uncertainty. Since then, I've learned a tremendous amount in my journey. As I further reflect on being a 20-year brain tumor survivor, I now know discoveries that are enabling me to thrive. Here are some pieces in the puzzle that I utilized in my quest for optimal health and healing.

Innovative Cancer Hospitals and Treatments

I've had three awake brain surgeries, radiation, oral chemotherapy and participated in clinical trials, including immunotherapy. In the process, I had treatments at the National Institutes of Health, University of California, San Francisco and University of California, Los Angeles with top-notch providers. For cancer patients, the process requires quality research, multiple opinions and informed decision-making to find the best possible answers for their situation.

Over many years, too often I was seen as a patient instead of as an individual. Now, conversations can occur with aspects of patient-centered care, personalized medicine and precision medicine. This momentum continues, including more genomic testing, genetic testing, other tests and treatments. I've personally had types of testing to find new information and approaches, as well as knowing research findings, professionals and patients who have experienced benefits.

Integrative Cancer Care for the Whole Person

In my quest, after brain surgery in 1998, I had to do more for my healing and cancer prevention. I started with complementary and alternative therapies, yet certain components were not making sense. Ultimately, I embraced 

integrative cancer care for the whole person

. That addresses the physical body, mind-body connection, spiritual vitality, social support and a cleaner environment to improve quality of life, cancer survival and cancer prevention. Integrative cancer care is important in my ongoing quest to feel better and live longer.

Positive transformation occurs through meaning and purpose. Core integration is essential for embodiment, which supports various aspects of the whole person for vibrancy. Since the beginning with volunteer and professional work in the cancer arena, the experience connects me with a source larger than myself. Now, I'm grateful to provide services as a cancer coach, consultant and speaker with motivation full of inspiration.

Along with the “highs” of feeling hopeful in my journey, I also endured “lows”: heartaches where hope was shattered with the unexpected, undesired, and unwanted. As I continued to cultivate more of myself, I've explored aspects of the mind-body connection to integrate better ways in life. The improved mindset of hope has positive levels of energy that I've incorporated through integrative cancer care for the whole person and other sources. My improved relationship with hope and actions has invigorated me to live life more fully.

and instincts. I have had powerful experiences that guided me to new relationships, work, homes and much more. As I've needed help trying to figure out cancer treatments, and other cancer-related approaches, some choices have been successful with intuition and instinct, and others not with fear and confusion. Over time, I've learned to be more aware and awake, and those levels of presence helped me to choose wisely. That involves a mosaic of strategies, such as listening, engaging in proactivity, meditation, and being in the present moment with silence and stillness. Guidance is available, and I continue to embrace levels of mystery with support in the process.

For all of us, we never know what will happen and when. Life is precious. The heart is potent and powerful to support health and transcendence with love and gratitude. That continues for me, with grace, faith, and whole person vibrancy. The strength with appreciation about one's self and life helps support the energy levels that attract better experiences. I cherish those connections of love and gratitude.

Other discoveries enabling me to thrive include more approaches and strategies. In the process, I am grateful to help cancer patients and caregivers as a cancer coach for their individualized situation. Indeed, challenges can become opportunities and adversities to actions. Many possibilities are available. Now is the time.

A 20-year brain tumor survivor shares insights from their journey, emphasizing the importance of innovative cancer treatments, personalized care, and integrative approaches. They highlight the significance of patient-centered care, genomic testing, and the mind-body connection in improving quality of life and cancer survival. The survivor underscores the role of meaning, purpose, hope, intuition, love, and gratitude in their healing process. By embracing these elements, they have transformed challenges into opportunities, providing support as a cancer coach and consultant, and inspiring others to live life more fully.

Since being diagnosed, I've learned a tremendous amount in my journey.

Jeannine Walston

My Insights to Cancer Genetics After More Than 20 Years of Brain Tumor Survival

Actions with Brain Tumor Awareness Month in May and Beyond

Transforming the Chaos of Cancer to Post-Traumatic Growth

Pieces in the Puzzle as a 20-Year Brain Tumor Survivor

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