Casey Seideman: My name is Casey Seideman. I’m a pediatric urologist in Portland, Oregon, at the Oregon Health & Science University. I’m also an assistant content editor for The Journal of Urology^®, and I’m really excited today to welcome my guest, Katie Coleman. Katie is a kidney cancer patient and patient advocate. She was diagnosed with a rare kidney cancer, a metastatic oncocytoma, in December of 2020.

Since her diagnosis, she has become an avid advocate for kidney cancer, sharing her experiences online, founding a nonprofit, starting a podcast, and writing a book to share her experiences with others to fund research. Welcome, Katie.

Katie Coleman: Thank you. I appreciate you having me.

Casey: So, Katie, would you mind telling everyone a little bit about yourself?

Katie: I was diagnosed in December of 2020 with a really rare type of kidney cancer.

We didn’t know quite what it was at that point, but I had a 12-cm tumor in my right kidney at the time and about 15 or more tumors in my liver. So I kind of was inoperable at the beginning. I tried to get a bunch of second opinions to remove it, but since I was already stage 4, goals were just to prolong my life as long as possible with systemic treatment.

Eventually I ended up, through advocating for myself, being able to get several second opinions due to the rarity of what I ended up having. I got to the NIH, where they did a very large surgery for me in June of 2021, and then we also did some ablations to some spots in my liver.

All of that got me to no active cancer where I am today. And so now these days I try to spend my time advocating as much as possible, hoping that other patients will be able to have outcomes like I’ve had so far.

Casey: What advice do you have for physicians or trainees when they’re communicating with a patient? Maybe for the first couple of times that you’re talking to them about a particularly complex or difficult diagnosis?

Katie: The number one thing is be honest, and I think that means both be honest about what their disease is, but also what you know about the disease.

I’ve seen lots of different doctors. And I’ve been able to interact with some who I can tell are purposely not telling me how little they know about my situation because I feel like they don’t want me to lose trust in them as my physician, which for me does the opposite.

I’d say that’s probably one of the biggest things, as well as openness, especially for any rare patients. An openness for a patient to seek second opinions from somebody who might have the expertise if you don’t yourself.

Casey: Are there any things that you remember specifically that doctors have said to you that were particularly helpful for you as you were starting to consider the next steps in your treatment?

Katie: There’ve been a couple of experiences on both sides of the spectrum. My first oncologist didn’t have a lot of experience treating rare kidney cancers. And as I was going through my appointment with him, he made it clear as I was asking, “Hey, is it OK if we might seek a second opinion, just since this is rare,” which, as a patient, is an awkward thing to ask. Him encouraging me to go for a second opinion was something that I really much appreciated. If I had been met with hesitancy or felt like I was offending him by asking that, I might not have gone through second opinions, and I would probably have a very different outcome right now.

Casey: One thing you said that really resonated with me is that since what you had was rare, there wasn’t a well-defined algorithm.

Are there any things that maybe you wish your doctor had told you or said to you earlier in your medical journey that would have helped prepare you for this? Obviously, hindsight is 20/20, but just looking backwards, ways that they could have communicated this experience differently.

Katie: I ended up learning a lot on my own. I looked at my own pathology report. I tried to learn how to read my own pathology report. I referenced resources online to figure out what the markers were, to figure out, OK, this kind of really does sound like a metastatic oncocytoma, and that’s what helped me have more confidence in pursuing additional opinions, as well.

I will say in that process of asking for second opinions and figuring out if there are trials, I was told that there was no clinical trial for my type of cancer, and maybe some language would have been more beneficial. There are no trials at the center for your cancer, even though there’s not something that would have been exactly for my type of cancer. I did fit into some of the other nonclear cell clinical trials that I could have sought out at other institutions, as well as even pointing me to resources to help learn about my disease, not my specific subtype, but about kidney cancer in general.

Like the NCCN [National Comprehensive Cancer Network] guidelines, there’s a patient version which is super helpful, and I had so much information I spent a really long time trying to track down. Even pointing me to something like that would have saved me a bunch of time.

Casey: It sounds like you’ve done a lot of research on your own. Which means that you have learned pathology, oncology, urology. How has social media influenced your perspective as a patient, as well as how you been involved in this active learning process?

Katie: It has been crucial at every single step of the way. I largely credit social media, honestly, for a lot of the reason why I feel like I’m even still here, because a lot of the connections I made came through social media. I found the NIH through a post on another kidney cancer patient that I met through a support group. They had made a post for Kidney Cancer Awareness Month, and I saw this organization listed in the comments of that post and that’s how I ended up reaching out to Driven To Cure who helped put me in touch with the NIH.

Also, I learned about my disease through support groups. And I was getting that information from other patients. It’s not always 100% perfect in support groups because it’s being passed along from other patients, but it gave me the foundation to go learn on my own. So it gave me the terminology that I needed to go find things other places. I even turned to Twitter, for example, when I was trying to learn the differences between oncocytoma and chromophobe.

I started following Threads from pathologists on Twitter. So it’s really kind of touched every part of my journey. I will admit that I’m probably not the average patient, but I do think a lot of patients are pursuing a lot of these same avenues.

Casey: I think it’s really important for us as physicians to hear that because I think often times when we’re using social media, sometimes we use it for spreading awareness or for patient education, and sometimes we use it for our own education or for discussions with colleagues about topics that are relevant. But it’s important that we see ourselves as part of a greater community, that we don’t live in a silo, and I think it’s really remarkable how you harnessed the power of social media for advocacy for yourself and to help you learn, but also for other patients.

So I imagine that you get to meet a lot of other patients through the work that you do, and they probably ask you for advice since you’ve sort of paved the way. What would you tell a patient who is just about to embark on a difficult medical diagnosis with regards to advocating for themselves?

Katie: I think the number one thing I would say is to learn as much about their disease as possible. I will say that sometimes it can be hard to learn those things. For example, at the beginning when I was trying to learn about kidney cancer and trying to learn how to advocate for myself, sometimes reading studies was really hard for me.

Seeing overall survival stats and seeing those numbers in perspective of, “is this reflective of my future,” some of those were really hard to learn and be able to get through that. But eventually, once I learned to get around that, those studies really helped inform some of my decisions and helped me learn more about the disease, and it allowed me to have more educated conversations with my physicians. And then the second thing is connecting with others.

A big part of why I’m here is connecting with others in a mental health perspective, with connecting with other patients, but also from learning about the disease and connections I’ve made, who connected me with other physicians or experts for my care. It’s really a network in a community that exists around patient care, sometimes outside of the clinic. And so I think learning to advocate for yourself also means learning to connect yourself in those networks.

Casey: You also communicate with a lot of physicians. What advice would you give to a brand-new urologist or urology trainee about how to incorporate the patient perspective into their practice?

Katie: I think my biggest piece of advice there would be to listen to the conversations happening in these networks and communities. I have a love-hate relationship with Twitter sometimes, but that is probably the number one place for patients and physicians to interact and have dialog. And a lot of these conversations are happening on both sides.

Interacting with your patients, asking them things as well as just even boiling down to very tactful things in just the clinic, instead of focusing on just the physical aspect of how your patient is feeling, focusing on the emotional aspect, as well.

There’s a lot of emotion tied up when you’re diagnosed with cancer in general. Any time you hear that word, it’s terrifying. And so I think a lot of patients can feel like they might be dismissed or that their fears are invalidated, especially if they’re diagnosed with an earlier stage cancer, when their physician might think that, OK, we’re going to remove it and you’ll be cured, you’ll be in a really good spot. That is built on so much knowledge that you have acquired to be able to provide that guidance and advice.

But patients are starting from square one where they have none of that knowledge.

Casey: That’s really wonderful advice. It touches me personally because I have a family member who was diagnosed with a small renal mass—and as a urologist, I have a lot of knowledge about it. There was a lot that I learned from their experience. Learning about their own disease process through the eyes of a patient compared to the eyes of a physician.

Because you’re right, there is a degree of all of that knowledge compounded. “Not terrible news” and “cancer” don’t belong in the same sentence.

Something that I thought was really remarkable that I learned about you, Katie, is that you actually paid for your own subscription for publication access to The Journal of Urology^® so that you could access data.

I can imagine that it’s actually really frustrating to lack the direct access to information.

Katie: I will say, especially younger patients, I notice we do gravitate towards a lot of the primary sources, and I think a lot of that has come especially over the last couple of years.

There’s been a lot of information, some misinformation, that you can find on social media. And so I think people are becoming more savvy about the fact if you see something listed in an article or a publication or not a journal publication, but just like a blog post, for example, summarizing data that it’s really important to get to the source of that information.

For a lot of patients that can feel overwhelming. There’s a lot of terminology in there. It took me a really long time to learn some of that terminology, and there’s still stuff that I constantly have to look up and figure out what exactly it means.

I subscribed to The Journal of Urology^® because I was trying to see if there were any papers on metastatic oncocytomas or any papers on oncocytomas that I could find.

And there were a couple that I found that I didn’t have access to, and so I just paid for it so that I could get access to those papers.

Casey: How can the American Urological Association or other urologic/oncology organizations work to incorporate the voices of patients and physicians together as a community?

Katie: I think things like this article, inviting patients to share their experiences, is a really great way to start. And I also think just engaging in patients wherever they are, especially if they’re in your spaces. Like inviting patients to conferences, approaching patients at conferences.

I’ve gone to several conferences at this point, and I’ll say being a patient in a space that feels like you don’t belong, especially as I’m typically pretty introverted, and having physicians interact with me, talking with me, has really not only helped me learn, for example, about their research, we’re at a poster session, but it’s also helped me feel more comfortable in those spaces.

Casey: That’s amazing. I hope that I get to meet you at an upcoming conference.

I’m excited to have you on this interview because I really admire the way that you use your voice and to create community and the way that you just graciously donate all of your funds to research, which is really admirable. For any of our readers/listeners who are interested in connecting with Katie, or learning more about Katie, you can follow her on social media @KatieKicksCancer. And we are all patiently awaiting the release of her first book. So thank you so much for joining us today and I look forward to meeting you in real life in the future.