Key Clinical Summary: Cancer Cachexia – The Patient Perspective
This is a micro-learning module summary of the Cancer Cachexia Education session which you can find here.
Before participating please read our CME and disclosure information which can be found here. This program is supported by an independent education grant from Pfizer Global Medical Grants. This online education program has been designed for healthcare professionals globally.
Introduction
This interview explores Pamela’s personal journey with pancreatic cancer and the subsequent onset of cancer cachexia. She reflects on the early signs of illness, the profound physical and emotional impact of rapid weight and muscle loss, and the challenges of navigating nutritional interventions and supportive care. Pamela shares how cachexia affected her independence, quality of life, and dignity, and highlights gaps in healthcare professional communication and follow‑up care. Her story offers valuable insight for clinicians seeking to recognize cachexia earlier, provide holistic support, and address the patient experience beyond oncologic treatment.
Can you start by sharing your story, from your first symptoms to your cancer diagnosis?
“My journey began in the summer of 2018. I wasn’t feeling great and was attending my GP with a query over kidney stones. My only major symptom was tiredness, but blood tests were clear. By September and October, fatigue was worsening, and I asked to be referred for further tests. In November, I was told I didn’t have cancer, but by December I was physically exhausted. I noticed I was jaundiced and was referred for another scan. On December 7th, 2018, I was diagnosed with pancreatic cancer.”
When did you first learn about cachexia, and how did it manifest in your journey?
“I had never heard the term cachexia during my hospital care. I only discovered it myself when researching muscle wastage. Sarcopenia was mentioned in hospital, but it didn’t register with me. It wasn’t until after my Whipple surgery that cachexia became obvious. In 7 or 8 weeks, I lost seven and a half stone. I could wrap my hands around my thigh with room to spare. I had always been overweight, but this was severe muscle wastage that affected every part of my life.”
What were the biggest day‑to‑day challenges associated with cachexia?
“My mind was 100% willing, but my body was only 30%. Plans I made each evening never came to fruition the next day. I lost my independence and needed support to move around the house. I couldn’t walk from my bed to the bathroom without a stick or someone beside me. I lived in constant fear of falling. I had no appetite, felt full all the time, and struggled with food. Nutritional drinks made me gag and vomit. It was a constant battle.”
What kind of support did you receive from healthcare professionals?
“I was referred to a community dietitian, but there was little follow‑up. I was given lists of things to do, but physically I couldn’t manage them. In hospital, dietitians offered nutritional drinks, but I couldn’t tolerate them. There was a big gap between structured hospital care and what happened afterwards.
My nurse was fantastic. She met me at the door, encouraged me to introduce calorie‑dense foods, and supported me to walk more each day. Even though it hurt, walking helped me rebuild muscle in my legs. That was my turning point.”
How valuable is psychological care in managing cachexia?
“It’s very important. Oncology teams focus only on keeping you alive, but they don’t look at the holistic well‑being of patients. I missed out on family meals for nearly 2 years, which was isolating. Quality of life after treatment is really important. Care should treat the individual as a whole person, not just as a set of symptoms.”
What message would you want healthcare professionals worldwide to take away about the patient experience of cancer cachexia?
“Cachexia is more than weight loss. It is about strength, dignity, and independence. Look at the person, not just the symptoms. Every small act of support helps us hold on to our dignity and independence.”
Conclusion
Pamela’s experiences highlight the profound impact of cancer cachexia on physical function, independence, and quality of life. Her reflections underscore the importance of early recognition, consistent follow‑up, and empathetic communication. Nutritional interventions must be individualized and monitored, while psychological and social support should be integrated into care. For clinicians, her story is a reminder that cachexia management extends beyond symptom control; it requires attention to the patient’s dignity, independence, and holistic well‑being. By listening to patients and addressing these broader needs, healthcare teams can provide care that is both compassionate and effective.