Shannon Lee-Sin and Virginia Sun - Improving Quality of Life for Patients Living with Colorectal Cancer (Text Version)

Title: Improving Quality of Life for Patients Living with Colorectal Cancer and Ostomy: Researcher and Patient Perspectives

I'm Shannon Lee-sin, I'm about to be 43 this month. Which is huge. I'm a 13-year colon cancer survivor. I was diagnosed with stage 3C colon cancer at the age of 29, I had symptoms from when I was 17. It might not have been colon cancer, but it was definitely something digestive. I was misdiagnosed with endometriosis, polycystic ovarian syndrome, ovarian cysts. Finally, I ended up in the emergency room, and I was in sepsis. After four months of the infection coming back they decided to do surgery. And that's when my cancer was found.

I woke up to hear that I had stage 3C adenocarcinoma of the colon, and that I had an ostomy. It was not planned, that I would end up with an ostomy. And so in my mind, I did not prepare myself for that. I did not have the support. I did not know other ostimates. I did not have a wound care/ostomy nurse. I didn't have anyone to help me to learn how to deal with it. And so it was literally trial and error, emphasis on the trials and the errors.

After a year of having my ostomy and not being able to cope, I decided to go to my surgeon and say, I want this to be reversed. And he said, you have a 90% chance of complication up to and including death And I said, well, I can't live with this and this is not quality of life.

I said, what is the point of me fighting for my life if I can't enjoy the life that I fought for? And I really feel that if I had the support and I had the resources, my journey would have been different.

I got bitten by the research bug. And here I am, you know, conducting research and designing interventions to really help our patients and family caregivers through their, you know, treatment journey and beyond. We are very grateful for the funding provided, to help us run a pilot randomized trial of a, ostomy self-management intervention, for survivors with bladder and colorectal cancer.

We made it a telehealth session because, number one, it was challenging many times for patients and families to travel to one location, not all communities have ostomy nurses, not our hospitals have ostomy nurses. You know, not all hospitals or cancer centers even have ostomy outpatient clinics. And so how do we address sort of this larger scale lack of access to sort of the ostomy support? We have curriculum that we designed. And we tackle sort of one quality of life domain at each of the session. But one of the key thing is we assign them to a peer ostimate.

So we connect them very early on with someone who's living with an ostomy matched with the type of ostomy, that they have. Those of us who are, nurses or surgeons and other clinicians understand the planning of having an ostomy surgery and some of the challenges after, we don't live with one. And so we were very clear that that peer ostomy support, was very important for the day to day lived experiences for our participants on our trial.

I'd love to hear your thoughts, Shannon, what else do you think is important for us to be thinking about, utilizing the, perhaps the before surgery and immediately after surgery time better.

I think what would be helpful is to focus on mentally preparing them as much as possible. Because I know that although I was told that an ostomy might be possible, I wasn't mentally prepared. I'm really grateful that you, you understand that having an ostomy is not a physical journey. It's also a mental and emotional one. And that's the biggest impact.

I do have a question for you. In order to do successful research, you have to put yourself in the position of those that you're researching. Right. So how do you how do you do that?

Yeah. Thank you so much for the question. I think, you know, we need to do a better job as researchers to incorporate the patient and the family's feedback right at the beginning. And so every time I have a study, I have patients or family members on as a key member of our research team, give us feedback.

I do agree that all of that is, like, super important because you can't design something for a patient without keeping the patient in mind. And, And I think we're finally starting to understand that now that there needs to be a bridge in between the researcher and the patient and that we have to work as a team.

Yeah. Absolutely. Agree. Yeah. This is it's so nice to have conversation with you. And we always learn so much from our patients and families.

I'm just really grateful for the work that you're doing, because I know it's going to improve the lives of so many, and that hopefully there will be less patients like me who risk their lives to have their ostomy reversed because they find the support that they need.

Thank you so much. Same. This work continues and we're going to continue it together.