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

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

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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