When you think about cancer treatments, it’s hard to think past the image of chemotherapy, of IVs, and complicated medical procedures, but in reality, there is a lot more to it than just the disease and the treatment. It’s a way of life and a battle against the disease and a series of side effects, such as mouth sores, that can wreak havoc on a patient’s lives, worsening the already painful experience. To shed light on this often overlooked condition, Enlivity has partnered with cancer fighters and advocates, providing a platform to share their stories and experiences.
Words and phrases patients associate with cancer mouth sores
We formed a focus group of these brave individuals and asked them to share their experience with cancer mouth sores (medically known as oral mucositis).* Many patients shared that they were often left to handle the treatment themselves, with many care teams focusing on cancer and its treatment, not the side effects.
“[My medical team] worried about other symptoms and keeping me alive” and never “made it [mouth sores] a big thing.”
Left untreated, mouth sores can worsen to the point where the patient’s ability to eat, drink, speak, and even swallow is compromised. When asked how this made them feel, patients and survivors told us that despite many providers giving little importance to cancer mouth sores, for them the sores were a very big deal. One advocate shared how she couldn’t take part in Taco Tuesday, a beloved tradition with her family, because her mouth sores were too painful. She was robbed of a treasured moment that could’ve sparked joy when she needed it most.
Quality of Life Impact From Mouth Sores
As part of this initiative and with the help of Savvy Cooperative, we also surveyed several patients to find out how cancer mouth sores affected their quality of life during cancer treatment. We found that 90% of patients reported difficulty eating regular foods, 70% reported difficulty drinking water, and 68% reported difficulty interacting and socializing with family and friends. These results were consistent with existing research related to cancer mouth sores and how these affect treatment and quality of life in cancer patients.
Mouth sores are so much more than just a sore and a side effect for cancer patients.
One patient told us:
“You hope for the night so you can sleep through the pain.”
Another shared this:
“It [mouth sores] was one of those things that made me feel sorry for myself and made me pity myself.”
To understand how a viable treatment would impact their lives and their experiences, many reported that they would experience relief. Relief, joy, elation, and hope were shared feelings among patients, along with:
“Cancer takes and takes, there are some things you can control and some things you can’t control. This would be one thing you can add to your control arsenal.”
To show that mouth sores aren’t just a minor side effect and should be proactively managed, the Enlivity team is thrilled and honored to launch our new campaign: #MoreThanASore. Our goal is to raise awareness for the physical and emotional impact of mouth sores on the lives of patients and share a solution that can improve the experience of fighting cancer. When medical professionals lack awareness and empathy for patients going through mouth sores, Enlivity is here for you.
#MoreThanASore
*Focus group facilitated by Patient Authentic.