My name is Amanda Whitworth, and I live in Seattle, Washington. My cancer journey has felt extremely long, with repeated moments when life seemed to be moving forward positively before another health issue appeared through screening or new symptoms that changed everything again. In August 2022, I began noticing a feeling of fullness and dull pressure in my pelvis. At the time, I was very busy working as an artist and furniture flipper while also managing a move and coping with personal grief. Because of everything happening, I initially monitored the discomfort rather than seeking immediate care.
Around early September, near my birthday, the pressure became significantly stronger. The sensation felt as though my pelvis was being pushed outward from the inside. I contacted my oncologist because something clearly felt abnormal. During the physical examination, the physician detected a mass and ordered a CT scan. In mid-October, imaging revealed a pelvic mass approximately the size of a grapefruit. The rapid growth explained symptoms such as abdominal swelling and difficulty breathing, making me appear several months pregnant.
Surgery was scheduled quickly to remove the mass. At that stage, relief from pain and pressure was the primary concern. After surgery, pathology results showed that most of the tumor was cystic, but a small portion at the base contained cancer cells. Initial findings suggested endometrial carcinoma, but further specialist review confirmed the official diagnosis as extra-ovarian primary peritoneal carcinoma, a rare and often confusing condition. The cancer shared characteristics with a previously diagnosed squamous cell type.
During treatment planning discussions, one of my major concerns was hair loss. I had long curly hair and strongly hoped to avoid losing it. Radiation therapy was initially considered, but prior radiation exposure made additional treatment unsafe due to overlapping areas. This eliminated radiation as an option, leaving chemotherapy as the recommended treatment approach.
Several chemotherapy combinations were presented. One option involved carboplatin with another agent that carried a lower risk of hair loss. Another option combined carboplatin and paclitaxel with pembrolizumab immunotherapy, supported by emerging clinical studies showing significant reductions in recurrence rates. Because I have Lynch syndrome, which increases the lifetime risk of multiple cancers and recurrence, the immunotherapy combination offered stronger long-term protection. Although choosing this treatment meant losing my hair, the potential clinical benefit made the decision clear.
Hair loss began soon after treatment started, leading to the emotional step of cutting my hair. Chemotherapy was planned alongside six cycles of immunotherapy, but insurance approvals limited access, allowing only two combined cycles initially. Treatment continued with long-term immunotherapy, planned for two additional years. I am currently in full remission and tolerating immunotherapy relatively well.
Immunotherapy experiences vary widely between patients. Online support groups can provide comfort but may also create unnecessary fear because individual reactions differ. Side effects for me have included recurring skin rashes affecting the face and chest, sometimes resembling acne. On one occasion, a severe rash covered my entire body after treatment but did not recur. Treatments occur every three weeks and involve laboratory testing, physician consultation, and infusion through a port. The medication infusion itself lasts approximately 30 minutes, although total appointment time is longer due to preparation steps.
Compared with chemotherapy, immunotherapy sessions are shorter and generally allow normal daily activities afterward. Some sessions cause mild stomach discomfort, while others allow me to return to work in my workshop the same day. Fatigue remains one of the most significant ongoing effects. Lung involvement has also caused reduced breathing capacity, leading to quicker shortness of breath and the need for deeper breathing. Thyroid function changes are another known side effect requiring monitoring. Neurological symptoms are currently being evaluated to determine whether they relate to prior chemotherapy or ongoing treatment.
Because of Lynch syndrome, immunotherapy also provides potential protective benefits against additional cancers. Regular screenings continue, including colonoscopy surveillance. Access to treatment required assistance beyond standard insurance coverage. Hospital social workers played a critical role by connecting directly with the pharmaceutical manufacturer, allowing financial support through income-based programs. Many patients are unaware that these support systems exist, even though hospitals frequently offer resources to help manage treatment costs.
An important lesson throughout treatment has been the need to listen carefully to personal symptoms and advocate for individual preferences. Cancer care involves a long-term relationship with the medical team that continues beyond active treatment. Feeling heard and respected within that team is essential. My care approach includes both conventional medical treatment and supportive holistic practices, and open communication with my oncology team has allowed these approaches to work together effectively.
Living with cancer remains one of the most frightening experiences a person can face. However, continuing daily life, finding meaning in small moments, and maintaining trust in both medical care and personal instincts have been central parts of navigating this journey.
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