At the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Danet Peterson sat down with Oncology Data Advisor to talk about her work with A Cure in Sight, a nonprofit organization which seeks to support patients with ocular melanoma throughout the diagnosis, treatment, and survivorship journey.
This podcast episode was recorded live at the 2022 ASCO Annual Meeting in Chicago by Oncology Data Advisor and ConveyMed.
Oncology Data Advisor: Welcome to Oncology Data Advisor, I'm Keira Smith. Today, I'm here at the ASCO Annual Meeting in Chicago, speaking with Danet Peterson. Danet, thank you for joining us. Would you like to tell us a little bit about yourself?
Danet Peterson: Sure. I am here from Phoenix, Arizona, and I'm here with the organization A Cure in Sight. We are a nonprofit for patients, created by patients, with ocular melanoma. I was actually diagnosed with ocular melanoma myself in July of 2020. I mean, I've just had kind of a whirlwind of a diagnosis story, as well as the journey since. I kind of joke that the pandemic at the beginning of 2020 was when Frozen 2 came out, and I have two little girls, and they love Frozen 2. One of the songs is "Into the Unknown," and it was like the theme of my life, and it just hasn't stopped—just learning how to lean into that uncertainty, and cancer definitely forces you to do that.
Oncology Data Advisor: Would you like to tell us a little bit about A Cure in Sight? What do you do?
Ms. Peterson: With A Cure in Sight, I actually host their podcast, the Eye Believe podcast. You can find us on Spotify, Apple, Google Podcasts, and PodBean. I also am their Social Media Manager, so I run their social media. I'm usually the person making the funny reels and TikTok videos, trying to help patients just feel understood and feel heard. But we also educate the public about ocular melanoma and about what it means to have ocular melanoma and the burdens that come with that, and also the importance of annual eye exams and comprehensive eye checks so that you can monitor for ocular melanoma or the risk factors, because it is so rare. Six in a million patients are diagnosed each year.
Because it's so rare, it's heavily underrepresented in the cancer community. It's very under-researched, and unfortunately, as a patient group, we're on the front lines of seeing the patients who develop metastatic disease and don't have a cure. Our job as a nonprofit is to connect with the patient early on in their diagnosis and to help them feel that they have a community and that they have a place they can turn to for resources, both with the medical community and the oncology community. But also just with each other—to take care of each other, to support each other, and just to navigate this diagnosis from the beginning until as long as they're here, which we hope is a very long time.
Oncology Data Advisor: Great, thank you. What do you think is the most important thing for clinicians who are attending here to know about ocular melanoma from a patient perspective?
Danet Peterson: I think the first thing is that it exists and that it actually is a cancer. You can get cancer in your eyeball, and it is terrible. The treatments tend to be successful in treating the primary tumor. The challenge that we're finding is that once the primary tumor has been treated, if it does spread, there is no cure currently for the metastatic disease that spreads to the liver or the lungs. I mean, for people here, clinicians, to understand that we need, in order for patients with uveal melanoma to survive longer than a few years with the types of treatments that we have right now, we need more research. We need people willing to go out on a limb and find something that will solve the problem of uveal melanoma and the liver.
Basically, because of where it starts in the eye, it will spread through the blood, and it will just kind of hide out. Like most cancers, the immune system doesn't know how to fight it without help. Currently, we don't have a whole lot of research on what makes it so unique, that it makes it able to be invisible for so long. Any research that can be done in that sphere to really be able to identify it before it goes to the liver, that would be amazing. Those are some of our big things that, if we had a vision board, we would love for this to be identified in someone who's a high-risk patient before it even metastasizes—if we could know, "Oh, you're at risk. We're going to treat your blood ahead of time before it goes to the liver."
But really, it's just letting them know, "Hey, this exists. This is something you should be concerned about." It's highly aggressive. Compared with some of the other well-known cancers, it doesn't have as much happening in it, and because it's so far set back, it can be really discouraging for patients who develop this diagnosis. They're told far too often, from their oncologist's perspective, that there's nothing there, so they shouldn't even bother looking. I mean, just the psyche and the emotional health that impacts the patient, the way that it impacts them is just really detrimental.
If clinicians stop looking, then they're not aware of any advances, even small, that come in research. I think it's really just about educating them and making sure that they know it exists—specifically in the cutaneous melanoma field—so that if they come across a patient who has ocular melanoma, because they're a melanoma doctor, to just make sure that they educate themselves more about uveal melanoma itself, look into the existing research, and not just throw up their hands and go, "I can't do anything for you." Or on the flip side, don't try to treat them like skin cancer, because they're not. That's one of the biggest things that we want to make sure that they know.
Oncology Data Advisor: Anything else you'd like to share?
Danet Peterson: Honestly, just being here, this is my first time being in this kind of a sphere, but I just want to say thanks for listening and thanks for taking an interest in what we have to say. I hope that someone will listen to this and decide that they want to go after finding a cure for uveal and ocular melanoma.
Oncology Data Advisor: Yes, absolutely. Thanks much sharing your story. This was wonderful.
Danet Peterson: Thank you.
Thank you for listening to this podcast recorded live at the 2022 ASCO annual meeting by Oncology Data Advisor and Convey Med. For more expert perspectives on the latest in cancer research and treatment, be sure to subscribe to the podcast at conveymed.io and oncdata.com. Don't forget to follow us on social media for news, exclusive interviews, and more.
About Danet Peterson
Danet Peterson is the Social Media Manager and Content Curator for A Cure in Sight, a nonprofit organization which supports patients who have ocular melanoma, educates the public about this disease, and focuses on research to find a cure. She also serves as host of A Cure in Sight's podcast, Eye Believe.
For More Information
A Cure in SightTM (2022). Available at: https://acureinsight.org/?v=7516fd43adaa
The Eye Believe Podcast (2022). Available at: https://ocularmelanoma.podbean.com/
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.