Justine’s Stage 3B/4 Rectal Cancer Story

---

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

---

Video: Justine’s Story

How I Got Diagnosed

Going Through Extensive Treatment & Managing Ileostomy Bag

Navigating Life After Diagnosis: Finding Silver Linings

---

Getting Diagnosed

Describe yourself outside of cancer

I am a kindergarten teacher, and I have been teaching for 9 years. That’s my true passion. That’s the biggest thing about me. I’m a teacher, and I love working with kids.

A sudden cancer diagnosis after the colonoscopy

I went in for my colonoscopy on February 11th, and when I went in for it, I was actually really worried that they were just going to say, “We didn’t find anything. We don’t know what’s going on.” 

Cancer never crossed my mind.

Other things like Crohn’s had crossed my mind, ulcerative colitis, but not cancer. I woke up from my colonoscopy, and my boyfriend at the time was there with me. 

The doctor came out and told me he had found a tumor, and my world basically came crashing down. That was not the news I expected to receive at all. 

They hadn’t even done the biopsy, but he said, “I’ve seen this many times before, and there’s not a doubt in my mind that it is cancer.” 

From there, everything was fast-tracked. I went straight in for some blood work, and everything just went really fast from there.

How did you process the cancer diagnosis?

I don’t think that I ever really did. I went from, “You have a tumor,” to calling my parents and letting them know what they had just found. I don’t know if I ever really did get to process it.

»MORE: Patients share how they processed a cancer diagnosis

Researching fertility preservation options

I did not think of it. It was my mom who brought it up that there was probably going to be a possibility of that treatment causing issues for me. 

I started looking into it after she brought it up and talked to my radiation doctor. Radiation is what was going to initially ruin having kids. I wasn’t going to hold or carry a pregnancy. Then I was going to become infertile, which was also caused by chemo. 

I looked into it a little bit. It was going to take time. The odds weren’t the greatest, and it was a lot of money that I don’t have. Ultimately, I decided to forego going through with egg freezing just for those reasons.

I also wanted to be able to be around to possibly have kids, and postponing treatment wasn’t the best idea considering I was staged at 3B, so I was already pretty far along.

»MORE: Fertility preservation and cancer treatment

When did you get the full rectal cancer diagnosis?

I met with a couple of doctors. I had my surgeon, whom I met with, the radiation doctor, and then the oncologist for the chemo. I had 3 doctors I was working with. 

I feel like I was staged by my surgeon by looking at my tumor, but I’m actually having a hard time recalling exactly which of my doctors staged me, just that they staged me at 3B. 

They said, “This is the protocol for this kind of rectal cancer. You’re going to start with 5 weeks of chemo and radiation. You can do your chemo by pill.” I was still really active, so that was what was perfect for me.

For the radiation, they said, “You’ll have a small break. You have to go through a surgery, remove the tumor, have a temporary ileostomy, and then finish up with cleanup chemo.”

How did you process the rectal cancer diagnosis and prepare yourself for treatment?

I hadn’t heard of rectal cancer. I did not know a lot about it. It was just a whole new world opened up to me, a world I never wanted to enter. 

I told myself early on I was going to make a positive out of a negative situation. That was just being really open about my story, sharing, so that hopefully, number one, anybody going through a tough time can be inspired, but also anybody going through cancer. Just staying positive.

Keeping to my normal schedule was helpful to me. I still wanted to continue teaching and being there for my students, and that was how I handled what I went through.

Did you get a second opinion?

Yes, I definitely looked at other hospitals. That was more later on in my treatment. In the beginning, I trusted where I was at. I trusted the doctors that I had. There was a lot of research behind rectal cancer and the treatment plan, so I trusted the treatment plan.

I felt really great about my surgeon. He had just come from another area. He was very highly recommended and experienced. I felt really good about where I was at and all my treatment. All my doctors were amazing, so I felt really good about it. 

I think if it would have been a little bit more of a confusing cancer where there wasn’t as much research, maybe I would have gone with the second opinion, but it was supposed to be a pretty straightforward process.

Describe the radiation process and any side effects

It’s nothing like you envision. I don’t know what I envisioned, but I didn’t envision what happened to me. You just go in this room, they played the music I like, I lay on the table, and this big machine went around me and made some beeping sounds.

Then I was out. It’s silent. You don’t feel anything. You can have side effects from it, like burning. Luckily, I never experienced any of that.

No side effects but also not many changes to the cancer

It was good not to have side effects, but I also found out later on that my tumor really didn’t do anything through my first set of treatment. Maybe that’s why. The tumor didn’t shrink in size or anything.

How were you able to manage those 5 weeks of chemo & radiation?

I feel like I was maybe a little numb to everything. It was still a lot to process, but I went in every day after work and would go to radiation. My mom or dad met me there every day. 

It was fast, and they couldn’t even be in the room with me, so I was always like, “You don’t have to be there.” Then after they did it a few times, I found that I really liked having that support.

I liked coming and seeing them, and then coming out of radiation and being able to see them. Other than just it being an extra place to go after work each day, it really didn’t disrupt my life a whole lot in the beginning.

Were you able to drive yourself to and from radiation?

Yes, I was able to drive.

When I went in for surgery, they didn’t know that I would actually come out. That was definitely emotional.

How was the recovery from multiple surgeries?

Mine, again, was not quite straightforward. I went a lot longer not being able to eat, just because they kept having to go in. My bowels had to start working again, which took longer because I kept getting put under.

Your bowels have to wake up, and they have to see a certain kind of output before you can try eating. Then once you start eating, it’s just learning how to manage your ileostomy, or you can get a colostomy, too.

It’s just learning how to manage that and change that and all of that stuff that comes along with it. I had no idea what an ileostomy even was going into this. Even when I was told in my treatment plan, I still didn’t look it up. I figured I’ll cross that bridge when it comes.

The ileostomy phase came a little faster than I planned. I just woke up, and I have this bag. I had no idea what it entailed.

Describe the transition to solid foods

I finally had jello, some chicken broth, a little bit of juice, and tea. I was really excited about this because I went about probably 20 days without eating.

How long did it take for you to be able to walk around by yourself?

It was about 3 weeks in the hospital, 2 or 3 weeks. I would say most people would be up within a couple of days.

What kind of help might patients need after surgery?

You might be weak from being in the hospital and lying around. They usually say it’s about a week in the hospital, so it’s nice having help as you learn how to navigate your ostomy. 

Sometimes you end up with drains, and the drains can be right in the way of where you need to put things. Having somebody who’s willing to help you with your ostomy is good. My mom and I totally teamed up and would change my ostomy together, at least in the beginning.

I was freaked out by it in the beginning, so having her to help me and guide me was really helpful. I would just say it’s just nice to have somebody there if you are struggling to get back on your feet. Not all people need that. My surgery experience was a lot different, more extensive.

How was the transition from living with parents to living by yourself again?

It was good. It was hard. I definitely was really weak, but I was very determined to get back into my own space. I did it, but it wasn’t easy. 

The biggest thing was you lose a lot of your core strength, and I couldn’t lie flat, so it was important having enough pillows to prop me up. When I was at my parents’ house, I had a bed that could be raised. It was good to be back in my own space, though a little overwhelming to start doing all of the care on my own.

Describe in detail how you manage the ileostomy bag day to day

It’s just basically a giant sticker that sticks to your belly. You don’t really get to choose where it goes, and it covers whatever. I never have a belly button because it’s always covered by my stuff. It covers some of my scar. 

You don’t get to pick how high or low it goes. Even just figuring out how to dress after was a really big obstacle, as well as finding tools to help me dress and just feel normal. You would never know I have my ileostomy just looking at me. It’s all very hidden.

Any guidance for others on managing the ileostomy?

I would say my biggest thing is research. Find groups that are ileostomy groups. They’re super helpful. People ask really great questions.

Also see if you have an ostomy nurse in your area who will be able to help you and guide you once you are recovering and getting out of the hospital. They’re very helpful. 

There were times I was going through leaks, and I couldn’t figure out why I couldn’t get stuff to stick on me and stay. I’d go to see her. She could help me, but also, I just researched a lot and used the groups that I had.

Any tricks or tips with managing the ileostomy?

I definitely found that having a cap or something to empty into was easier in the beginning. I kneel down a lot and empty into the toilets when I’m at home. I find that easier. Facing the toilet versus facing away is easier to empty for me. Everybody finds what works for them.

Cancer Metastasis

During scans pre-cleanup chemo, your team found your cancer had metastasized 

Once I was strong enough to go through cleanup chemo, my team had me come in for scans, just to give them a baseline of how everything was looking. In those baseline scans, they found that my cancer had spread to my liver. 

Again, not the news I was ever expecting. It never even crossed my mind that that would have happened. It’s definitely another really hard conversation.

They decided to continue. I got these baseline scans. I was supposed to get my port on Monday and start chemo. They decided for me to get my port, and then they had to come up with a new plan of treatment for cancer that had spread, which is considered metastatic.

How was it waiting for the results of your tumor biopsies?

I definitely had to learn. I’m a big planner, and I like to know what to expect. I like to plan and stick to that plan. Cancer kicked me in the ass and said, ‘You’d better lose that right now.’ 

I had to learn very early on that I couldn’t plan. I had to really just take it day by day. Honestly, when they told me I had tumors on my liver, I really didn’t even feel like I needed a biopsy to confirm.

I already had cancer. The fact that it had spread was not shocking. For me, the biopsy didn’t hold a whole lot of weight. I already knew and was thinking, “Okay, this is the deal.” 

I still did not really realize just what metastatic cancer meant, though. “You’re treatable, but you’re not curable,” is how the doctors described it. I never get to escape this. This is always going to be part of my life. 

That’s something I still struggle with from time to time. That’s a hard realization, but again, I allow myself to feel those feelings and then continue on.

What was the chemo cycle schedule?

Summary: 1 day of infusions, 2 weeks offs

It was a day of infusions. The FOLFOX I would get infused for a day in the cancer center, and then I’d leave. I’d get hooked up to another chemo, which was in a ball that I would then carry for 3 days while it went into me.

Then that ball would empty after 3 days. I’d get to disconnect, and then I’d get to wait until I would go in 2 weeks later.

What helped you get through the side effects?

I would heat my cereal up, which is so gross. I wore gloves. I’ve got a vest that was heated with a battery. I had this vest I wore every day over my clothes that was heated because I was miserable.

I had no body fat and would get cold easily. I did that. I’d just always been trying to dress really warm to help warm things up.

When did the side effects hit?

As soon as they start infusing, the cold sensitivity starts within 10 minutes. Then the cold sensitivity in my mouth would subside about a week and 2 days after, and then I could start maybe eating a little bit of cold stuff again.

Then I’d basically start chemo again, and then they would go back. I’d get maybe 3 days where I could eat things that weren’t totally warm.

Any guidance for others who have to deal with something similar?

Just make sure you FaceTime people. I definitely would sit there and FaceTime. If you have a good show or a good book, make sure you bring it, but if you’re really missing the people that help you get you through the tough time, use FaceTime.

More Treatment: Radiation, Ablation, Y90

What was the follow-up schedule post-chemotherapy?

I got scans. I’d go through some rounds, they’d do some scans, and they’d check in. I started seeing some doctors down in Portland at OHSU. 

They were all collaborating, talking about my case, and deciding what they felt was the best plan of action. It’s been a lot of back and forth because mine hasn’t been super straightforward.

One time, they wanted me to do 2 more rounds, and then they would do scans. I went through that a lot. Again, just being able to take it day by day and one treatment plan at a time, not looking at the big picture.

Just looking at, ‘Okay, what is happening now?’ versus, ‘Okay, they’re going to do this, and then this is going to happen.’ That doesn’t always work out that way. 

Describe the Y90 procedure next

Y90 is where they insert radioactive beads into my liver. They did a bunch of mapping through my arteries to check that my blood flow went through my liver. 

They didn’t want to put these beads in and just have them go all over and ruin parts of my liver that are still good. They focused on my right lobe first, and they put a catheter in to block blood flow to certain parts of my liver.

Then they do this all through an artery in your groin. It was a day of all this mapping and then figuring out the best path to insert them. Then the next day, I’d come back, and they insert the beads. 

It was an interesting procedure. I didn’t realize just going in through your groin, that major artery, how big of a deal that was and how serious that can be. That actually caused me the most pain. 

You’re awake for it all because you have to hold your breath at times, so you’re sedated but aware and able to hold your breath. I can see all this stuff going, which is a little freaky.

Guidance for others going into Y90

Research. Ask your doctors as many questions as possible. I don’t feel like I asked enough questions to fully understand what I was going to go through. 

Again, sometimes that’s what’s best for me, just not knowing exactly and just going in. I’ve just learned to really endure a lot of pain, and I don’t get as nervous anymore. I just go with it.

I trust my team, and I just get through it. I need the trust so much because I’d normally say, “Embrace your family members and whatnot.” But they don’t get to be there with you during something like the pandemic. The relationship with your medical team is helpful. 

I had really great nurses, who were very comforting. Making sure you’re confident where you’re receiving treatment is also really helpful so that you just feel comfortable in their hands.

Any specific questions you wish you’d have asked before the procedure?

Maybe just more of what it entailed. I just go with it, but also, I’m doing this at a distance because of the pandemic. I don’t always get as many appointments as you would if you were in person.

Navigating Life After Cancer Diagnosis

Handling your stage 4 cancer like a chronic disease 

This is my new norm, I guess. It’s just going to be a part of my life — appointments, scans, a constant fear, but also just being thankful that I’m here and embracing the time I do get, regardless of how long that is.

Dealing with the loss of fertility 

That was definitely a huge blow to me. I’ve always dreamed of having kids. I know there’s other avenues, but it’s all super hard.

What not to say to someone who loses childbearing options after cancer

Don’t tell me there’s other ways that you can have kids, but that’s not the only way. It’s not what somebody wants to hear when that’s what women do. We have kids. I don’t really want to hear that. 

The importance of listening to your body

Definitely just listen to your body. If you feel like something’s wrong, go to a doctor. If they don’t listen, go to another doctor. 

I’ve met other ladies on this journey who were not as lucky and did not have a doctor who listened as well. It’s easy for them to sometimes say, “Well, you’re too young.” 

Then they’re not the doctor for you, and you should seek advice somewhere else. Just be proactive.

It’s easy to worry about the cost of a doctor’s appointment, the cost of a scan, but I guarantee you the cost of what you would get if you are diagnosed with cancer is far greater, so it’s just important to just be on it.

How important was finding a counselor for managing your mental health?

It’s really hard. I feel like when you go through cancer, you’re constantly shielding everybody from your real feelings. You’re shielding them from the fact that you’re fearing dying. You’re shielding them from the fact that you have a pretty major illness. You’re always shielding people and not getting to really express yourself exactly how you might want to.

A counselor is just a great way to be able to let those things out without having to protect anybody else’s heart or feelings. You get to just go there and talk, and it can be what you want it to be. I have found it very helpful.

The meaning behind this “warrior” tattoo

Going through what I did was a huge inspiration to me. I always said that when I beat cancer, I would get it. Everything just kept dragging on. I don’t ever fully get to beat it, so I finally was like, “I’m just doing it. I have no other tattoos other than my radiation tattoos,” which I have plenty of. 

This tattoo, I designed on my own with a little help from pictures. The 4 dots on the W stands for my stage 4 cancer, and the ribbon is for cancer. It brings me a lot of strength when I look down at it. 

Warrior has been the word that a lot of people use to describe me and how I handled the situation and journey, so it’s just a really meaningful word for me and brings me strength.

Last message for others

I think I’ve said it all, but just to reiterate: it’s your journey, and you’ll find what works for you. Don’t be afraid to reach out for help and ask for help. 

There are lots of really great groups that you can find to help you. Counselors are very helpful, and just stay strong and positive.

---

Rectal Cancer Stories