For this episode of Karger’s The Waiting Room Podcast, we spoke with Jessica Settle about her experience of being diagnosed with colorectal cancer at the age of 28.

Jessica is the dedicated mother of a 12-year-old daughter. She is advocating for colon cancer awareness and spreading hope wherever she goes.

Please note that Colorectal Cancer Awareness Month is held in March each year.

Published in February 2024, Karger’s latest patients’ resource on colorectal cancer is freely available here.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Episode

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome to The Waiting Room podcast, Jessica.

Hi, it’s great to be here today.

Hi, it’s so good to have you. So, Jessica, can you please tell us what made you aware that something is wrong and led you to seeing a doctor? How did you get your diagnosis?

Yeah, so I actually saw a doctor originally around the age of 24, and I saw my primary care provider because I was having a lot of blood in my stool, and it was bright red blood. So, it was kind of alarming. You know, that’s never a good sign. She referred me to a specialist, and he kind of brushed it off as being hemorrhoids. And at the age of 24, I’m like, okay, well, hemorrhoids. Got it. I had had a daughter, so I had suffered from the constipation of being pregnant and, you know, my hemorrhoids were definitely there. But it just didn’t feel right. And I continued to suffer with the blood in my stool and then some bloating and constipation. And I eventually transferred to a new primary care provider in October of 2019, when I was 28. And she was younger and more progressive and took me a little bit more seriously and was like, well, this doesn’t seem right.

So, she referred me to a gastroenterologist here locally in Tri-Cities, Washington, and the gastroenterologist was also a younger female who was a little bit more progressive. And she’s like, I will test you for gluten allergies and all of the things. But I also think it’s important that we do a colonoscopy. So, we scheduled my colonoscopy for December of 2019, right after Thanksgiving. And I had my procedure, and she came into the room when I was waking up in recovery and let me know that she was pretty positive that I had colorectal cancer, that I had a very large mass – and showed me pictures – in my sigmoid colon, and said that the reason that I was consistently having the bleeding in my stool was because that when I would go to the bathroom, that my bowel movements would pass through and pass and irritate the tumor, and then it would cause the bleeding and so we got to the source of that, and it was a pretty quick move from there.

But you didn’t expect this outcome, did you?

Absolutely not. No. It was very shocking, you know. Colon cancer is commonly associated with older people, right? It’s an older person type of cancer. That’s what you get. That’s what you learn. That’s what society tells you. So getting that diagnosis was very, very shocking.

Were you alone when you got the diagnosis?

I was not. I was married at the time and my husband was with me in recovery. So, we were together during that diagnosis.

And that was good, wasn’t it? Because, I’m really shocked to hear about how you learned about your diagnosis. You’re just waking up and waiting for the good news that everything is okay. And then you get this life-changing news.

Yeah, it definitely turned our world upside down.

And you said it. Colorectal cancer is associated with older patients, with older people. And so, while age doesn’t have a major influence on therapy, the living conditions of younger and older patients differ greatly. Can you tell us at which point in your life were you when you received your diagnosis? You already mentioned that you have a kid.

Yep. I have a 12-year-old daughter now. So she was, what, nine or ten at the time. No, younger than that, probably like eight. And we had just sold our house, we were living in a rental property, and we had downsized a lot because we were building our dream house. At age 28, I’m married, and I had my daughter and we’re building our dream house and we’re living our best lives and, you know, having all the adventures. And we had a motor home and we had gone camping a lot. We were just doing the things that normal young adult parents do, and it was very life-altering.

I can’t imagine this, because you don’t reckon with such a life-changing diagnosis. So, I’m sure you were facing tough decisions with regard to treatment. What was helpful in this process? Did you get the help and support you needed? Or if not, what was missing?

Yeah, so that is kind of a complicated answer. Things moved very quickly from the time I was diagnosed. I moved from being diagnosed on December 1st to having my colon resection surgery on December 16th. So, it’s a very quick process. I had lots of appointments between that time period, and it was a bit overwhelming, and it moved so quickly. They’re trying to get you in and get you taken care of and get everything ready for you to start treatment. But there’s not a lot of time for you to think about much else. Not a lot of time for you to think about “well, maybe I should get a second opinion” or “where do I even go to get a second opinion?”. “What resources are available to me?”

So that was a little overwhelming. I’ll be honest, I didn’t get a second opinion. I went, I moved. It was just so quick that I moved right with whatever treatment they told me. And I looked stuff up and I joined a couple of Facebook groups and looked at different things and kind of prepared myself for what it was going to be like. But it was very difficult. I did get assigned what they call a nurse navigator, and she was available via text or call at any point in time during treatment and could check in and she would go from, she met with my surgeon and I, and also met with my oncologist and I. So, she would attend different appointments at various different stages in my treatment. And that was helpful.

The one thing I would say that was missing after everything was done, is the mental health side of it. Nobody prepares you for what it does to you mentally and what it does to your relationships and the strain that it causes. And that was something that I dealt with after I was done with treatment. Probably a year or so after I was done with treatment is when I first started going to therapy. And I was very lucky, I have a local therapist, but it was in the height of COVID, so we were doing all of our stuff virtually. And she actually suffered from colorectal cancer as well. So, she was very relatable to me. And I could talk to her about all the things and she could help me advocate and she knew what resources were there, more than what I could find. Because being a young person and being in the height of COVID, you know, the support groups that would normally be in person weren’t a thing. And again, with me being a young person – and it’s normally an older persons’ cancer diagnosis – I didn’t relate to any of those people. So, for me, the Facebook groups that I found were helpful, I could find the younger people that were associated with colon cancer as well. That was helpful.

But it took a year to find therapy and to start therapy. And during this year, you just struggled along and tried to come to terms with it.

Yeah. I didn’t realize the impact that it had on me. Because, during treatment, during chemo, I kept a very positive mindset and a very, very positive attitude and outlook on everything. I chose that, because I thought it would make everything easier for me, and it did. It is going into those dark places that makes treatment that much harder. So being able to keep it positive and everything was great, but keeping it positive doesn’t mean that you’re dealing with the ramifications mentally or physically of going through treatment and feeling those things. So being able to go to therapy was really helpful for me and it helped me just come to terms with my diagnosis and the anxiety that comes along with it afterwards. Nobody prepares you for that anxiety. You know, you get your first couple of scans after you’ve completed treatment and everything and nobody prepares you for that, that anxiety that can happen while you’re getting your scan or prior to or after the scan. So, it was helpful to learn some coping mechanisms.

You’re expected to be positive. Now the treatment is behind you, so, look ahead. But I imagine that you do not only have to be positive for yourself, but you had a young family. So, parents probably, or the whole, the extended family. You had to be positive for them as well. And cheerful, I think.

Yeah, yeah. You know, having a young child while you’re there doing that kind of treatment is hard. You don’t want them to see you in that negative mindset. And so you try and stay positive. And then again for extended family, my own parents, my siblings, I’m just trying to stay positive for them as well. It was a lot.

Yes, I think so. So, what was the best advice you received and what would you like to tell other younger patients who are diagnosed with colorectal cancer?

Honestly, I don’t think that I received any really great, fantastic advice along the way because nobody really knows what to say to somebody that’s going through that, you know? So, I don’t have a whole lot on the advice part that I received it. But I would just tell other younger patients, stay positive, use your resources. There’s so many resources out there for us as young adults, through the Colorectal Cancer Alliance, through other companies that help with that stuff.

Go to therapy. Do it right away. Don’t wait until it’s later, and you have to deal with the ramifications of it later. An hour at a time, once a week or once a month or whatever you need. Do it and rely on those resources. You know, that’s what they’re there for. I’ve joined different programs to help be available for other people that are in my age group, that are going through similar situations, and that it’s been helpful for them, but it’s also been helpful for me to be able to give back to those people.

The other advice that I would give younger patients or people that think they might have something going on is not to give up. You know, when I initially went in at 24, they kind of brushed it off, I kind of brushed it off. I didn’t really know. I was young. I didn’t know how to advocate for myself at that age, no. But now, looking back, I wish I would have advocated a little bit harder, gotten a new doctor, persisted on saying “something is wrong”. So just don’t be afraid to say “this is not right, I don’t think this is right”. And keep going back. Go find another doctor. Go to the emergency room. Do what you need to do to make somebody listen. And the sooner you can catch this, the sooner that you can start treatment and the sooner you start treatment, you know, the easier it will be. When you can catch it super young or super early, and you don’t have to do as harsh a treatment.

So, listen to your gut feeling and insist to take it further until you really know, yes, this is it, now I know what it is. Even if you don’t, even if you might prefer not to know what it is exactly. But in this case, you just have to look at it.

Yes, listen to your gut and push for it, because … Push for it – not push for it in the bathroom sense, but push hard hitting your screening.

Insist! Then what would you say what needs to be done to improve prevention of colon cancer in adolescents and young adults, as nobody obviously seems to reckon with colon cancer at this age?

Yeah, honestly, we need to lower the screening age. And I know it comes from just it being a cancer that normally older people get. But even without the genetics – I had genetic testing and it’s not genetically prone to me. So, there never would have been anything that I could have pushed for genetic-wise, saying “hey, I need to be screened”. It just needs to be a lower age. 40 is where it should be, maybe even lower than that, in my opinion, because more younger people are getting diagnosed with that at earlier ages, under the age of 40.

So, it’s just pushing for that lower age range and making it easier to get those screenings done. Here in my city, we are short on gastroenterologists, so it can be a little bit more difficult to get into and get that screening done. So, making those resources available, whether it be getting a colonoscopy or being able to do one of those at-home tests and making sure that it’s affordable and available for anybody at any age range would be my advice.

It doesn’t have to be a gastro- what do you call it – a gastroscopy right away, but there are other kinds of tests you could do before, just to move it a bit further and not being brushed off, like “yeah it’s nothing”. So yeah, I agree with you, but it’s rather a political question, not a medical one.

Unfortunately, it is, and I wish it wasn’t. You know, our health shouldn’t be mixed into the politics of all of that.

But it is, as you said. So, information is key in a way. And my last question refers to your contribution to a focus group that reviewed the newly published Fast Facts for Patients booklet. I will put the link into the show notes. What are your recommendations for anyone who develops patient material?

My recommendations are to do those focus groups to involve people that are affected by those things, because then you’re getting the facts and you’re getting the feelings and you’re getting to know the patients and what they’re actually going through instead of just what you read in a textbook or what you might find in studies. So getting that information directly from patients is really helpful. And it can help other patients that are reading that material be able to relate to it.

So, it comes back to the “nothing about us without us”. It’s the old truth.

Yep.

Okay, Jessica, thank you very much for being so open and sharing your experience. I’m sure this will help others who find themselves in the same situation. So, thank you very much for us for this talk, for this interview.

Yes. Thank you so much for having me. I really appreciate it. I love being able to advocate for other people and provide information. I’m always open to people asking questions, even though it might feel like it might be too much information for them to know. You know, the more information somebody knows, the more that they can help themselves. So, it was nice to be able to share that information.

Thank you very much, Jessica. Bye-bye.

Bye.