Understanding Cancer Cachexia: Cancer-Related Weight and Muscle Loss

April 18, 2024
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Cachexia was never referenced during my time in active treatment. And it is helpful in survivorship to know this is a common side effect and not unique to my circumstances.

CSC's Cancer Cachexia: Voice of the Patient Report

John
cancer survivor

It is common for people with cancer to lose weight. This may be due to treatment side effects like trouble swallowing, nausea, mouth sores, diarrhea, and/or decreased appetite. However, weight loss may also be due to a syndrome that is caused by the underlying cancer. Doctors refer to this weight loss syndrome as “cachexia.” Cachexia is also called cancer cachexia, wasting, or cancer anorexia.

According to the National Cancer Institute, cancer cachexia is most common in patients with advanced pancreatic and lung cancer, but it's also common in certain other cancers, including ovarian, liver, colorectal, and head and neck cancers (NCI, 2022).

 

"Cancer cachexia, as it is medically known, has made life as I knew it unrecognizable."

— Rochelle, diagnosed with cancer, CSC's Cancer Cachexia: Voice of the Patient Report

 

What Are the Signs & Symptoms of Cachexia?

While many people have never heard of the term cancer cachexia, it is estimated that the syndrome occurs in up to 80% of all patients with cancer (Lim et al., 2020). Cancer cachexia occurs primarily in advanced, metastatic, and/or incurable cancers and does not usually happen in early-stage cancer (OncoLink, 2022).

The major symptoms of cancer cachexia are significant weight loss, weakness and fatigue, and loss of appetite:

 

Significant Weight Loss

The most common sign of cancer cachexia is drastic and unintended weight loss. This includes muscle loss as well. This chart helps illustrate the amount of weight and muscle loss that may indicate cancer cachexia:

A chart features different degrees of significant weight loss within specific time frames
This chart is for general information only and should not be relied upon to diagnose cachexia. It is important to always let your or your loved one’s medical team know about any weight or muscle loss, even if you do not consider it drastic.  

Weakness and/or Fatigue

People with cancer cachexia may find it hard to do everyday tasks they previously did routinely, such as walking, chores, social engagement, and other daily activities.  

 

"Every day is valiant effort towards eating, exercising, putting the right foot forward. It’s exhausting."

— John, caregiver of patient, CSC's Cancer Cachexia: Voice of the Patient Report

 

Loss of Appetite

People with cancer cachexia may have no desire to eat. 

 

"I’m taking a number of supplements under the guidance of my naturopath and with my oncologist’s understanding. I also try to eat a low sugar diet, which means no candy, no sugar, and minimal fruits. Eating with extreme care helps with my energy level and SIBO (small intestinal bacterial overgrowth) symptoms."

— Carol, diagnosed with multiple myeloma, CSC's Cancer Cachexia: Voice of the Patient Report

 

What Treatments Are Available for Cancer Cachexia?

Cancer cachexia is not currently preventable, nor is the weight loss it causes completely reversible. But people with cancer cachexia may benefit from treatments that stimulate appetite, build muscle mass, and help manage other side effects. These treatments or management tools may include:

  • Nutritional supplements like high-protein, high-calorie, nutrient-rich foods and drinks
  • Synthetic hormone therapy or hypermetabolism medication
  • Anti-inflammatory medication
  • Exercise or physical therapy
  • Nutraceuticals

 

"My morning pain is treated with stretching, yoga routines, and sauna. My cachexia has benefited more from physical than drug-related treatments."

— Carol, diagnosed with multiple myeloma, CSC's Cancer Cachexia: Voice of the Patient Report

 

Cancer cachexia can have a significant impact on a patient’s psychosocial (social and emotional) well-being. Visible changes in body image due to significant weight and muscle loss can cause distress and anxiety. 

Many cancer cachexia treatments focus on managing the psychosocial effects caused by the syndrome, including providing support for cancer cachexia-related distress to help improve quality of life. 

Tools to help manage cancer cachexia include:

 

Watching a loved one lose weight and have no appetite to eat can also cause anxiety and stress for caregivers. Cancer.Net (2020) shares some helpful tips to consider when caring for a loved one with cancer cachexia, including recognizing that a loss of appetite may not be within the control of the person with cancer cachexia.  

 

"I guess I wish that we had realized, and that our providers had told us, how serious the cachexia could be. We were all focused on the lymphoma, but it was the cachexia that actually carried him away."

— Martha, caregiver & family member of cancer patient, CSC's Cancer Cachexia: Voice of the Patient Report

 

How to Get Help From Your Healthcare Team

It is important to notify your doctor if you begin to lose weight unintentionally. This is the most common sign of cancer cachexia and may be the first visible sign of the disease. If you are living with or suspect that you may have cancer cachexia, it may be helpful to talk to an oncology registered dietitian (RD) for nutritional counseling. 

RDs are experts on diet and nutrition. They can provide education and advice about which types of food to give a person with cancer cachexia when they choose to eat. An RD who has the letters CSO after their name is a board-certified specialist in oncology nutrition. They have demonstrated experience and skills in developing healthy eating plans for cancer patients. 

Search online to find an oncology registered dietitian. Or, ask your healthcare team to recommend an RD.

 

"I was diagnosed with severe protein calorie malnutrition. The solution for this diagnosis was a surgical insertion of a feeding tube into my stomach. In hindsight, I asked the doctors, mainly the nutritionist, to be more forthcoming and transparent about the likelihood of weight loss; to approach the possibility of a feeding tube from a positive point of view."

— Melvin, diagnosed with head and neck cancer, CSC's Cancer Cachexia: Voice of the Patient Report

 
Raising Awareness of Cancer Cachexia

Although up to 80% of individuals with advanced cancer have cancer cachexia (Cancer.Net, 2020), many never receive a formal diagnosis. It is critical to raise awareness of cancer cachexia and develop new treatments that both manage the symptoms and improve the quality of life for people impacted by cancer cachexia.

 

“There are urgent needs in cachexia. This includes expanding education among patients, caregivers, and providers about the importance of cachexia; [and] increasing evidence, resources, and insurance coverage for supportive medical nutrition and physical therapy.”

— Dr. Jose Garcia, M.D., Ph.D., CSC's Cancer Cachexia: Voice of the Patient Report

 

Editor's Note: In 2021, the Cancer Support Community held a virtual meeting to raise awareness about the impact of cancer cachexia. This meeting was focused on listening to and learning from patients and caregivers. The quotes in this blog are a sampling of the perspectives they shared about their experiences with cancer cachexia. Watch a recording of the meeting, or read a summary of patient and caregiver perspectives shared during and after the meeting, in our Cancer Cachexia: Voice of the Patient Report.

 

 

This blog was originally published in September 2021 and has been updated.

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References

Cancer.Net. (2020). Appetite Loss

Cancer.Net. (2020). Weight Loss

Cancer Support Community. (n.d.). Eating Well with Head & Neck Cancer

Lim, S., Brown, J.L., Washington, T.A., Greene, N.P. (2020). Development and progression of cancer cachexia: Perspectives from bench to bedside. Sports Medicine and Health Science

National Cancer Institute. (Updated: Aug. 23, 2022). Cancer Cachexia: After Years of No Advances, Progress Looks Possible.

OncoLink. (2022). Cachexia in the Cancer Patient.