Transformative Journey: My Life with PNET Diagnosis
After experiencing persistent stomach problems, including severe cramps and nausea, Lalenya Robertson sought medical assistance in March 2023. Living in Fernandina Beach, Florida, a community with limited access to specialized healthcare, she found herself frustrated when her gastroenterologist suggested trying the FODMAP diet, which didn’t seem suited to her symptoms. Determined to uncover the root of her issues, Lalenya embarked on her own research, eventually leading to a critical diagnosis: a pancreatic neuroendocrine tumor (PNET).
Uncovering the Diagnosis: From Diet to Detection
Lalenya’s journey began with a feeling of uncertainty. The FODMAP diet was recommended, but she felt it was merely a way for her doctor to express a lack of understanding about her condition. With a family history of pancreatic issues, including a cousin who had succumbed to pancreatic cancer, she insisted on further testing. A CT scan performed in Jacksonville confirmed the presence of a small PNET in her pancreas, prompting doctors to recommend an endoscopic examination for further verification.
Confirming the PNET Diagnosis
The endoscopy validated the initial diagnosis, and Lalenya was advised to move forward with surgery. After thorough research on surgical options, she chose Dr. David Neimeyer from Baptist Health Hospital in Jacksonville for a minimally invasive laparoscopic procedure using the da Vinci® robotic system. Dr. Neimeyer acknowledged the uncertainties surrounding the tumor but assured Lalenya that he would assess the situation during the surgery. Fortunately, the tumor was small and not entwined with vital blood vessels, allowing for its successful removal.
A Successful Surgery and Recovery Journey
Although the surgery took longer than anticipated, Lalenya’s outcome was encouraging. She spent three days recovering in a private room, surrounded by compassionate healthcare professionals. Following her surgery, her recovery spanned about three months, during which she experienced discomfort and fatigue. To combat these issues, her doctor prescribed CREON, a medication to replace the pancreatic enzymes her body was lacking. As many pancreatic cancer survivors can attest, fatigue can be a significant challenge.
Afterward, Lalenya underwent a PET scan at Baptist MD Anderson Cancer Center in Jacksonville to ensure no cancer cells had spread. Her follow-up with oncologist Dr. Robert Zaiden in late November 2023 indicated that she remained on track, with no need for extensive treatment so far.
Support Through the Livestrong Program
To aid her recovery, Lalenya participated in the Livestrong program, a free initiative available at many YMCAs nationwide. This 12-week program focuses on muscle-strengthening exercises and provides a supportive environment for cancer survivors and patients to share their experiences and goals.
Importance of Self-Advocacy in Healthcare
Lalenya emphasizes the significance of self-advocacy when dealing with health issues. She encourages others experiencing similar gastrointestinal symptoms to research treatment options thoroughly and seek multiple opinions. At 77 years old, she has learned the value of questioning medical advice and ensuring she receives comprehensive care. Her proactive approach ultimately led to a successful diagnosis and treatment, for which she is profoundly grateful.
In summary, Lalenya’s experience highlights the importance of being an informed patient, especially when faced with health uncertainties. Through diligent research and advocacy, she navigated her diagnosis and treatment journey, setting an example for others in similar situations.
