Unlocking Insights: A Comprehensive Guide to Understanding PNET

Facing Dual Cancer Battles: Burt Rosen’s Journey of Resilience and Hope

Burt Rosen’s journey with cancer is a testament to resilience and the power of knowledge. Diagnosed with both pancreatic neuroendocrine tumors (PNET) and renal clear cell carcinoma (ccRCC), Burt’s story highlights the importance of self-advocacy and integrative health approaches. Living in Portland, Oregon, but originally from New York, Burt’s experience with chronic health issues and the stress of modern life led him to confront his health challenges head-on.

The Unconventional Diagnosis

Unlike scenes from movies where doctors deliver bad news in a somber office, Burt’s diagnosis came as a surprise during a hospital visit in July 2022. After experiencing severe brain fog, his wife insisted on seeking medical help. The emergency room revealed a significant ammonia build-up in his brain due to liver dysfunction, uncovering internal bleeding from an ulcer. This series of events ultimately led to the shocking cancer diagnosis.

• Diagnosis Date: July 9, 2022
• Cancers Diagnosed: PNET and ccRCC

Understanding His Tumors

Once stabilized, Burt turned his attention to his cancer treatment. His non-functioning PNET is a stage IV tumor that has metastasized to his liver and lymph nodes. Meanwhile, the ccRCC has not shown signs of spreading.

Burt has undergone various imaging tests, including CT scans and a specialized DOTATATE PET scan, to monitor the progression of his tumors. He keeps track of his health metrics through an online portal, which allows him to stay informed about his condition.

Treatment Journey at OHSU

Burt is currently receiving treatment at Oregon Health & Science University (OHSU), following the CAPTEM chemotherapy protocol (capecitabine and temozolomide). This regimen will continue until it ceases to be effective or his health warrants a change.

• Upcoming Surgery: Potential removal of the primary pancreatic tumor, a portion of the liver, spleen, and gallbladder.
• Focus on Liver Health: Burt’s surgical team considers liver intervention a priority due to the metastasis.

Empowering Himself Through Education

Driven by a thirst for knowledge, Burt has immersed himself in understanding PNET and ccRCC. His self-directed learning journey has included:

• Researching support groups
• Watching educational videos
• Networking with other cancer patients
• Engaging with his oncologist for resources

Burt’s interest in genomic testing stems from witnessing a friend’s success in advocating for advanced treatments. Although his initial genomic sequencing did not yield actionable results, he remains focused on exploring clinical trials and innovative therapies.

Holistic Approaches to Health

In addition to conventional treatments, Burt emphasizes the significance of integrative medicine. He collaborates with his healthcare team to ensure his body and mind remain strong throughout his treatment. His holistic health strategies include:

• Regular Yoga: Practicing twice weekly for physical and mental wellness.
• Daily Walking: Aiming for three to six miles to maintain fitness.
• Healthy Diet: Focusing on fruits, vegetables, and limited meat consumption.
• Hydration and Supplements: Prioritizing water intake and taking iron supplements for anemia.
• Therapy and Meditation: Engaging in weekly therapy sessions and mindfulness practices.

Burt’s commitment to holistic health extends to his volunteer work with organizations like the Society for Integrative Oncology and the Healing NET Foundation, where he helps connect patients to vital resources.

Positive Progress and Gratitude

Burt’s most recent CT scan showed either stabilization or a reduction in tumor size, and he continues to manage his light symptoms effectively. He maintains a busy lifestyle, balancing personal and professional commitments while staying active in his community.

Despite the challenges he faces, Burt expresses profound gratitude for his progress. His journey serves as an inspiring reminder that with knowledge, support, and an integrative approach to health, one can navigate the complexities of cancer and thrive.

For those interested in learning more about PNET and integrative oncology, resources like PanCAN and Tempus Labs offer valuable information and support.

Burt’s story is a beacon of hope for anyone dealing with cancer, illustrating that a proactive and informed approach can lead to positive outcomes.