Lonnie V., 54, from Indianapolis, IN, was diagnosed with stage 4 prostate cancer in September 2017. Initially, Lonnie experienced symptoms like urination issues and general body pain, which were first attributed to a urinary tract infection, then prostatitis. Despite antibiotics, the symptoms persisted. In a critical moment of severe lower body pain, Lonnie visited his doctor, who discovered an irregular prostate during a physical exam and recommended a biopsy. The results, with a PSA level of 685 (normal is below 4), confirmed stage 4 metastatic prostate cancer.

The diagnosis brought overwhelming sadness and fear. Lonnie described the period following the diagnosis as disorienting, with a mental state fluctuating between despair and an urgent need to plan for end-of-life arrangements. His oncologist proposed immediate chemotherapy, but Lonnie opted to delay and explore other options. Instead, he began treatment with Lupron, a testosterone blocker, and made significant lifestyle changes, including altering his diet and abstaining from alcohol, to support his treatment.

Initially, Lupron effectively lowered Lonnie’s PSA levels, but after 8 months, the cancer became castrate-resistant, meaning the medication was no longer effective. Faced with new treatment options, including clinical trials, Lonnie chose to participate in a trial combining Lynparza, Zytiga, and prednisone, while continuing Lupron. Although the trial’s side effects were challenging, the treatment proved successful for almost 3 and a half years, stabilizing his cancer and PSA levels.

As the clinical trial’s effectiveness waned, Lonnie faced rising anxiety. He sought therapy to manage the psychological toll, which helped him cope with the constant fear of the cancer progressing. In January 2023, Lonnie was removed from the trial due to declining efficacy. He then discussed alternative treatments with his oncologist, including chemotherapy, and eventually continued the trial medications outside the trial after they were FDA approved. Despite small increments in PSA levels, the treatment was somewhat effective until October 2023.

Lonnie then decided to take a treatment break in October 2023 after 6 years of continuous treatment, as he felt mentally and physically exhausted. Surprisingly, his PSA levels continued to drop during this break, but a recent PET scan revealed significant new cancer activity, prompting a return to the trial medications.

Throughout his journey, Lonnie has remained motivated by a love for life and a drive to advocate for cancer awareness. He uses his experience and social media presence to support and educate others, particularly on proactive cancer screening and patient advocacy. Despite the hardships, his focus remains on helping others through their own battles with cancer.

In closing, Lonnie advises newly diagnosed cancer patients to take their time and not rush into decisions. His experience highlights the importance of patient education, mental health support, and the resilience required to navigate the complexities of a cancer diagnosis and treatment.