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Kalei’s Stage 4 Rectal Cancer Story: Has My Cancer Returned?

Kalei M. rectal cancer

Kalei’s Stage 4 Rectal Cancer Story: Has My Cancer Returned?

For many people, a stage 4 rectal cancer experience starts with fear and confusion. For Kalei, this is exactly what happened. After two lung wedge resection surgeries with clear margins, her care team suggested another watch-and-wait period. It was the same surveillance approach that had previously ended with lung metastases discovered on the very first scan. This time, with a stage 4 diagnosis and two young daughters at home, the stakes felt even higher.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

When new scans in late 2025 suggested possible recurrent rectal cancer in her lung and rectum, Kalei found herself stuck in a gray zone. Radiology reports raised red flags, but multiple doctors were unsure and recommended more waiting. That disconnect pushed her to prioritize something she’d been encouraged to pursue since her first diagnosis: a second opinion. A change in insurance finally opened the door to a new hospital system and a team that took an aggressive, thorough approach to testing. They ordered fresh imaging, bloodwork, ctDNA testing, and even biopsies for suspicious lymph nodes in her neck. Some findings, like a new liver spot that later disappeared, brought terrifying lows followed by profound relief.

Kalei M. rectal cancer

Alongside the medical maze, Kalei’s rectal cancer experience reshaped her home life and marriage. She and her husband learned to support each other on their hardest days — one would stay steady while the other was spiraling. They booked trips all across the country, choosing joy and presence amid uncertainty. At home, she kept working, parenting, and running her photography business to hold onto a sense of normalcy. As she says, “I have cancer, but I’m still a normal person, and I’m still doing normal life things.”

Kalei’s advocacy now extends online, where she shares her symptoms, treatment timeline, and faith with a growing community. Messages from viewers who returned to church, opened a Bible for the first time in years, or finally made that overdue doctor’s appointment have shown her how one rectal cancer experience can ripple outward. She doesn’t romanticize what she’s been through, but she does believe this season has grown her into a different, stronger version of herself, and she’s determined to use that growth to help fewer people feel alone or dismissed.

Watch Kalei’s video and read her edited interview transcript below to find out more about her story. Read about her initial experience here.

  • Second opinions are essential in advanced colorectal cancer, especially when scan reports and doctors’ interpretations don’t align or when recommendations feel unsettling.
  • Being told that you’re young and healthy does not rule out serious disease; noticing and acting on subtle symptoms like bowel changes and rectal bleeding can lead to earlier diagnosis.
  • You’ll always be your strongest advocate, and you deserve testing and explanations that match what you’re feeling, not just what’s on the lab report.
  • Kalei’s experience transformed her relationship, as she and her husband learned to support each other better, communicate more honestly about fears, and find joy through travel and everyday routines.
  • Her stage 4 rectal cancer experience reshaped her faith and purpose, leading her to build an online community where she shares her story, encourages others to seek care, and highlights the power of prayer and connection.
  • Name: Kalei M.
  • Age at Diagnosis:
    • 28
  • Diagnosis:
    • Rectal Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • More frequent bowel movements
    • Presence of mucus, tissue-like substance, and blood in stool
    • Stomach cramping and sharp pains
  • Treatments:
    • Radiation therapy
    • Chemotherapy: FOLFOX
    • Surgeries: two lung resections
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer
Kalei M. rectal cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Transcript of Kalei’s Interview
  1. My stage 4 rectal cancer update: Scans, surgeries, and a new care team
  2. Why second opinions matter in advanced rectal cancer
  3. Navigating guilt about changing oncologists
  4. Coping with stage 4 rectal cancer as a young family
  5. Letting loved ones in and building a cancer support community
  6. Distractions, joy, and travel during rectal cancer treatment
  7. Diet changes, fasting, and anti-inflammatory eating with rectal cancer
  8. Early rectal cancer symptoms before diagnosis
  9. Being dismissed as young and healthy before a rectal cancer diagnosis
  10. Advice for patients who feel brushed off by doctors
  11. Sharing my rectal cancer story on YouTube and building a faith-based community
  12. Finding beauty and purpose in a rectal cancer diagnosis
  13. Rectal cancer treatment timeline (radiation, chemotherapy, and lung surgeries)
  14. Preparing mentally for possible recurrence during watch-and-wait
  15. What colorectal cancer patients should know about colonoscopies
  16. One wish for rectal cancer awareness and early detection
  17. What Colorectal Cancer Awareness Month means for our family

My stage 4 rectal cancer update: Scans, surgeries, and a new care team

A lot has happened. So yeah, the last time we spoke, I think it was two days after my second lung surgery. So both of those went great. They went really smoothly. We got clear margins on both pieces sent to pathology, so everything was really good. And then my doctors said it was kind of touch-and-go. They were kind of saying, “Maybe after these surgeries, we’ll discuss doing chemotherapy or some type of therapy, since now you are technically a stage 4 diagnosis.” We didn’t find any other spots within my body at that point that had any metastasized disease or anything like that.

So after the surgeries were done, they told us, “We just want to wait, we’re just going to wait, we’re going to monitor.” And I just remember my husband and I, after we had gotten off that phone call with that oncologist, we were like, “This is kind of unsettling.” I just don’t feel great about this because this is what we were told last year when I had finished chemo and radiation. They said, “We’re going to sit you on a wait-and-watch surveillance plan,” and then that first set of scans is when they found the lung mets. So we just were like, “History might repeat itself.” It’s kind of scary. Now we’re dealing with stage 4. I don’t really know, what if the next place it goes is to my brain or something? So we were just, you have all those natural fears in your mind of what could happen.

And so we went along with that. I remember I had gone back and forth with getting a second opinion. I really wanted to get my case in front of another set of doctors. I could talk about that for a long time, but I’ll keep it short and sweet. I didn’t have a good experience, and I think that it’s so difficult for people to get a second opinion when they shouldn’t. When you’re dealing with advanced disease, it should be a given that you are allowed to take your case to another set of doctors just for an opinion. But anyway, I did not get that second opinion, and we sat on the wait-and-watch surveillance plan.

In December of 2025, I had my first set of MRI, CT scans, and all of that since my surgeries. The first result that we got back was the chest CT scan of my lungs. On that report, the radiologist had noted that there was increasing soft tissue within the lower left lung, and there was a concern for recurrent disease. You read that, you get the results straight to your MyChart. I hadn’t spoken to my doctor or anything, so I’m just like, history is repeating itself.

It’s coming back. This is our biggest fear kind of happening. Then I talked to my doctor about it, and he said, “Well, I looked at it. I’m not really impressed with the area that the radiologist notated. I don’t really think that’s what it is. We’re just going to wait and see what it does.” So I’m like, “Okay, we’ll just wait some more, I guess.”

Then I got my MRI results for my rectum. There was a notation on that scan result that said there was a — I forget the measurement — but it was in the same spot my original tumor was, and there was a concern for recurrent disease. I’m like, “Whoa, what’s going on?” I spoke to my colorectal surgeon who ordered that, and he said the same thing. He’s like, “I’m not really impressed with what the radiologist is notating on there. I don’t think that’s what it is.”

So my husband and I are feeling like, “What is going on?” That’s two different test results, two different doctors telling me, we don’t really agree. So I’m like, no one’s agreeing here. That doesn’t make me feel good, and you’re all telling me, let’s just wait and watch again. So that wasn’t great.

But I had ended up switching insurance with my employer, so I moved over to the hospital that I wanted to go to seek that second opinion with. That was really fantastic, and I love my new team of doctors. They’re wonderful. They just went right in and were like, “We’re going to be aggressive with testing for everything. We’re going to order a whole new set of scans, we’re going to compare it with all your history, we’re going to do blood tests, we’re going to do [ctDNA] tests, we’re going to do all these things, the whole nine yards.” I’m like, ”This is amazing, fantastic.”

During those scans and ordering all these tests, I also noticed that my neck was a little swollen. This was another random thing. I was like, “Some lymph nodes in my neck are feeling a little weird. They’re a little swollen, they’re not going down, they’ve never been there before.” I told one of my new doctors, and he goes, “Yeah, we’re going to order an ultrasound because with your history, I just want to be more cautious.”

So I got an ultrasound and everything, and then my doctor ended up saying she wanted to order biopsies because there was a really enlarged lymph node that they had found on the other side. Our minds — mine and my husband’s — were going to the craziest places. We’re like, “Oh my gosh, has this progressed to my lymphatic system? Is this cancer just spreading like a wildfire?” It’s so scary.

Then they end up doing the biopsy that came back all clear. So my lymph nodes were clear, thank God. We were so relieved. They were very aggressive with getting these tests done and moving everything very quickly, which I’m so thankful for.

Then, one of the scans that they had ordered, a result came back on my liver, saying that there was a new spot that had never been detected before. Through all the scans I’ve ever had, I’ve never had any notation on my liver, and liver and lung are the two places that rectal cancer metastasizes to first. So I’m like, “Oh my gosh, this is it. It skipped my liver the first time, but now it’s back.”

Then I got a follow-up for that liver spot, a follow-up MRI. It turned out that the spot disappeared between my first scan and the second one. That was miraculous. So yeah, a lot of really, really lows and then really, really highs have happened. Right now, I’m in a waiting spot to see what this new team of doctors wants to do going forward. So yeah, that’s a little summary of what’s been going on.

Why second opinions matter in advanced rectal cancer

From the beginning, when I was first diagnosed, one of the first things that people who have experienced this said to me is, “Get a second opinion, get a third, fourth, fifth one; whatever you need to do, just get those opinions. Because the more doctors and specialists see your case, the more confident you’ll be in your treatment plan.”

It’s not a slight to any doctors because you don’t trust what they’re saying or anything like that. It’s for yourself, and it comes back to that place where you are your best advocate, and you really do have to push. So second opinions, especially with advanced disease, I think, are the most important thing ever.

I think that also being in a place where there’s a lot of iffy stuff going on with doctors not agreeing with radiologists and this and that, getting in front of another set of doctors, they’ve given me different perspectives that I didn’t get from my last set. Simple things that just change my perspective on my diagnosis in general. So I would 100% always encourage people to go after that second, third, fourth opinion just to help you better understand your disease, but also to give you the confidence in the treatment plan that you’re going with.

Navigating guilt about changing oncologists

I feel bad. I don’t want them to think that I don’t value them as my doctors and everything they’ve done for me, because, obviously, they’ve done a ton for me, and I appreciate them. But for my specific case, I didn’t really tell them that I was switching over. I just had my last set of appointments with them, my last set of scans, and then I just transitioned. That’s kind of where we left it.

It might have been another story on The Patient Story of someone else that you had interviewed, and this stuck with me. She said, “It is their job as healthcare providers and doctors to serve us as the sick people. That is what they are being paid for. That’s what they are there for. It’s not our job to try to tiptoe around their feelings. We’re dealing with our lives and our health.” 

That is what you have to keep at the forefront of your mind when you’re seeking second opinions, maybe thinking about leaving your doctors and things like that.

Coping with stage 4 rectal cancer as a young family

It has been a ride, honestly. It’s so funny because now, where we’re at, we’re in such a wonderful place. Recently, we’ve been talking a lot about how we handle things like waiting for results, the days when we received really bad results, and the days when we were preparing for surgeries or preparing for treatment. We kind of laugh at how we handled those situations because I feel like we’ve grown so much.

I think that you don’t really have a choice when you’re faced with something like this; you have to buckle up and push through it. My husband definitely makes light of everything. He makes me laugh through it all, which is what I need. It makes everything a lot more bearable. But yeah, he’s really incredible.

We had some really tough times. I would say after the stage 4 diagnosis, that was really rough. Then, in December of last year, when we got those test results saying that there was a possible recurrence in my lungs and my rectum, it was a really tough time. He puts on a brave face. But everybody is human, and you’re faced with those dark thoughts of not being around for your family, or in his case, his wife not being here for his children, or to grow old with.

So we’ve had difficult talks, but overall, it’s done nothing but strengthen our relationship, which is kind of crazy. We’re so blessed that it went this way rather than the alternative. We’ve learned that when I’m on a high, I’ll encourage him because he’s most likely on a low, and vice versa. If I am panicking and freaking out, he’s like, “All right, let’s go, we’re going to do something to distract you, we’re going to get you whatever it may be.” It’s a good balance.

I think for any couple that’s going through health issues or things in life like that, it’s good to recognize when your partner needs your strength and vice versa.

Letting loved ones in and building a cancer support community

To the people who are a little bit more closed off and don’t want to burden their family or friends with what they’re going through, I think something that has really given me great perspective is my family and friends. I have a wonderful support system, and they’ve told me throughout the past two years, “We are here for you, anything you need, anytime you want to talk.”

I know that a lot of people can say that to you. But truly, when you let it out, and you talk about your feelings, your fears, your worries, your anxieties with the people that love you most, they will step up, and they will comfort you, and it makes it feel so much more bearable. You can really deal with everything so much easier when everybody around you knows how you’re feeling.

If you keep it inside and keep it to yourself, you’ll eventually get to a breaking point. I’ve learned that the hard way. I’ve gone through periods of time where I keep things to myself when I’m feeling really down about something, and then it just kind of explodes because we’re humans, and that’s what happens.

I really do agree with building a community of people that may not even understand what you’re going through, but they love you. That’s the number one thing. They’re there for you to get all those emotions out.

Distractions, joy, and travel during rectal cancer treatment

A huge thing we did in the second half of last year was we went on a ton of vacations. We were like, “We’re just going to get out of town, because what better way to be distracted from our reality of what’s going on than to literally leave where we are every day?”

We went to a little beach town called Carmel, just the four of us — my husband and I and our daughters. We did a little weekend trip. My husband and I went to Denver, Colorado, for a trip. We took our daughters to Disneyland. We were like, “We have a new perspective on everything, we just need to distract ourselves and live our lives and do these things that are going to bring us joy.” Those were the best decisions that we made. Doing all those trips and staying distracted was great.

Another thing that really helps me is that I love to be busy. I thrive on a full schedule. I continued through all of this to do my photography business. I was working full-time, staying busy with my daughters, and things like that just help me feel like a normal person. I think that’s the best thing. Yeah, I have cancer, but I’m still a normal person, and I’m still doing normal life things, and I think that’s really important.

Diet changes, fasting, and anti-inflammatory eating with rectal cancer

Food is definitely a huge, huge factor, and I don’t think it’s really expressed enough by the healthcare industry, by your doctors, how important everything you’re putting into your body is going to affect you internally. That’s something that I really hope changes because it’s so crucial, especially with colorectal cancer rising in young adults.

It’s the majority of what’s causing these cancers, my doctors have told me, environmental and dietary causes. There’s something that’s going on that’s causing this increase. So I’m doing my own research. There’s a lot of research and information on the internet. I’ve been really focusing on an anti-inflammatory diet. I’m not perfect. Not 100% of the time am I choosing anti-inflammatory meals. But I definitely want to be very intentional about the foods that I’m bringing into my home for my daughters, because now they have a direct link to cancer. I don’t want them to be any more at risk than they already are.

So we’re being really conscious. My husband and I are cooking all our meals at home. When we have to eat out, we’re like, “Oh gosh, we’ve got to eat out, this is going against what we want.” We’ve started going to farmers’ markets, really focusing on organic, clean things. We’ve cut out — I know it’s a very hot topic — seed oils. That’s inflammatory to your gut. We’re cutting those out.

Any of the prepackaged snacks that have preservatives, I’m really steering clear of that kind of stuff, especially for my daughters. We’re trying to do basic fruits, vegetables, meat, protein, homemade bread, just very basic things. I still have a ton to learn, but that’s where we’re making progress, so it’s good.

Early rectal cancer symptoms before diagnosis

When my original symptoms started, they were really minor. I was noticing my bowel habits were changing. I was going more often than I ever did before. To me, that’s so small, but I noticed it. I thought to myself, “Maybe I’m getting more fiber in my diet, I’m drinking more water, things are just flowing better.”

Then I started to have some strange tissue and mucus coming out when I would use the restroom. That was another slight thing that I thought, “I’ve never seen this before, it’s kind of strange.” I’m just keeping it in the back of my mind. Then I started experiencing stomach pain, sharp pains, and rectal bleeding. That progressed to blood clots and all of those classic symptoms.

I just remember at the beginning, those slight changes, I was like, “I don’t really think that’s anything.” I think that in a lot of cases where people don’t get diagnosed until it’s progressed a little more, it’s because they just think, I don’t think it’s that big of a deal. Luckily, in my case, I started bleeding and experiencing pain, so it triggered me to go seek a doctor. Those were the only real symptoms that I had experienced at first.

Being dismissed as young and healthy before a rectal cancer diagnosis

I remember my first appointment, when I saw a doctor for these symptoms. She asked me about my whole history. I told her my whole history: healthy, two pregnancies were the only reason I had ever gone to the doctor. She said, “Okay, we’re doing blood work.”

I remember one of the phrases that she said to me after I got my blood test results. She said, “You’re not anemic, so there’s nothing life-threatening going on. Meaning, you’re not losing a ton of blood where it’s dangerous, your levels are normal, and you don’t have any medical history. It could be an internal hemorrhoid because you’ve had two babies; things change down there.”

Another doctor that I had seen at the ER, he ran blood work as well, and he said the same phrase. He said, “You are not anemic, there’s nothing life-threatening, you are young and healthy, just wait for your next appointment.” Those were the two things that I had heard from two different doctors. I’m like, I’m young and healthy, well, why am I bleeding? Why am I having pain? There’s something wrong.

Advice for patients who feel brushed off by doctors

Looking back on it, I feel very frustrated, more so with myself, because I wish that I had known what would be a good test to request. I know now I could have requested a simple CT scan, and the tumor would have been picked up. I had never had a CT scan before, so I didn’t even know what that was. I didn’t know how to ask these things.

I wish that I had more knowledge so that I could push back a little bit more. So I would say to people who are getting brushed aside with, “You’re young, you’re healthy, you don’t have any history,” or anything like that: truly push. “There is something wrong with my body. I know my body better than anybody else. I need the tests that are going to give me the answers that I need. I don’t know what those tests are, but can you please give me the options?”

Sharing my rectal cancer story on YouTube and building a faith-based community

The community is really incredible. I could have never imagined that this many people would be following along. One of the biggest things that people message me and comment on is that so many people are praying for my health and for my family, which is the biggest blessing because prayer is so powerful. To have that amount of people who are strangers online watching my videos, it’s incredible.

A lot of people message me about that, and then there are a ton of people who say, “Your story is very impactful, and it’s brought me closer to God.” “I’ve started attending church again.” “I’ve opened up my Bible for the first time in ten years.” I’ve had all these testimonies come through of people who are being strengthened in their faith, and that is so important to me.

Another thing is, a ton of people will message me about symptoms they’re having. They ask, “Is this what you experienced?” I’m able to help people go and push to make their doctor’s appointments and seek out healthcare because a lot of people just don’t think anything’s wrong. I’ve seen a lot of stories of very iffy people; they don’t know what they should do, and they ask. Of course, I encourage them.

A ton of people will reach out to me with — it’s actually kind of creepy — the same story as me. The timeline of everything lining up is so similar to my timeline and diagnosis. I’m like, wow, so many people are walking through this exact situation, which is crazy. Those types of people in the online community can support each other.

I’ve asked other people, “What was your treatment plan? Because I’m getting these weird answers from my doctors. Did you ever experience this, or what did you do next?” It’s so important, and it’s so amazing to talk to other people who are going through similar things as you.

Finding beauty and purpose in a rectal cancer diagnosis

I think that is the theme of my whole cancer story, honestly. Before any of this, if I had heard that somebody was diagnosed with cancer, it’s like, “Oh my gosh, what an awful situation.” I can’t even imagine how scary, and their world is probably just crumbling.

For it to be where I am now, where I’ve grown so much in my faith, I’ve grown so much in the strength that I have, confidence in myself. There are so many things: this community that I’ve built online, being able to know that I’m helping other people and encouraging other people, it’s very surreal. Being able to be a good example of walking through suffering with peace is very encouraging to me.

It’s one of the scariest things that you can go through, but I feel like cancer was supposed to happen in my life for a reason. I’m not saying that I’m thankful that I got cancer. You’re never thankful that you got sick. But there are certain things in your life that if you weren’t tested and put through a trial of some sort, you wouldn’t have grown into the person that you are today.

Rectal cancer treatment timeline (radiation, chemotherapy, and lung surgeries)

Originally, when I was diagnosed with stage 2 rectal cancer, I had a grade T3 tumor. I started with 25 rounds of pelvic radiation. During those 25 days, I also did chemo pills. Then we took a little break, and I did four and a half months of FOLFOX IV chemotherapy.

That was every other week. I did infusions for three days. Then that was that treatment. It completely dissolved my original tumor. When they found the lung nodules, I was set to do two lung wedge resection surgeries to remove those two portions. That’s all the treatment I’ve had so far.

Preparing mentally for possible recurrence during watch-and-wait

I think it’s definitely hard being in a waiting period when there are so many “ifs.” There could be a recurrence again or anything like that. I think it really helps to focus on the fact that I have overcome so much so far.

I’ve completed four and a half months of chemotherapy. It was brutal. I completed that. The radiation therapy had awful side effects. I completed that. I had two lung surgeries, and I feel completely normal. I came through that, and I was healed from that. Focusing on those things really helps me prepare myself mentally.

If there were to be a recurrence sometime in the future — it could be next month, it could be a couple of years from now — I conquered those things. Having the mindset that it’s going to be brutal, probably, but I will get through it, I’ll be stronger, and we’ll move forward. That’s something that I hold on to.

What colorectal cancer patients should know about colonoscopies

It’s the most glamorous procedure. No, but okay. It starts with the prep, and I’m sure that’s what everybody hears is the most daunting thing about a colonoscopy.

For mine, you get this giant jug, and you have to fill it up with water. There’s this solution in there, you mix it up, and you have to fast. You can’t eat, I think it’s for a day and a half or something like that. While you have nothing in your stomach, you’re chugging this gigantic bottle, and you have to do eight ounces of it every 15 minutes. You have to drink a lot of it. While you’re drinking it, you’re obviously going to the restroom a lot, a lot, a lot.

I was so nervous about it before my first one because you hear it, and you’re like, you just live on the toilet for two days. That does not sound enjoyable. It sounds awful. Honestly, it’s not that bad. It’s really not that bad. I’ve had four of them. It’s not that bad.

The hardest thing for me was not eating because I get a headache from not having coffee or food for a day and a half or whatever. But you do all that prep, and then you’re starving, you’ve been drained of everything, and then you go in for the procedure. That’s kind of nerve-wracking. You go in, and it’s like you’re getting prepped for a procedure. They get your IV in, and they’re giving you medicine to make you a little bit sedated.

I’ve never woken up in the middle of one, felt any pain, or felt uncomfortable. I just go right to sleep. They go in there, do their thing, look around, and then I wake up, and I’m in recovery. You’re a little drowsy afterwards, but then you just go home. I’ve had pretty okay experiences. They’re not as awful as they sound.

I just want to encourage, if you think that you should go get a colonoscopy, do it. I think you should do it.

One wish for rectal cancer awareness and early detection

That’s a good question. Let’s see. Obviously, the screening age for colonoscopies needs to be lowered. I know it got lowered to 45 or something now, but that’s not low enough. I’m sorry. So many young people are being diagnosed with colorectal cancer. It needs to be way lower.

My other big one would be doctors taking patients more seriously when they come to them with these symptoms, regardless of age, history, or anything. That is something that I really, really hope would change. So many people are like, “My doctor said I’m fine,” and they just move on, and their disease could be progressing. That’s my number one. I hope that doctors will be more cautious.

What Colorectal Cancer Awareness Month means for our family

Colorectal cancer awareness to me is something that will be so important in my life going forward. To me personally, I think it is a representation of the season that I’ve walked through so far.

I don’t want to get all sappy and start crying. I think that it’s really important to me, raising my daughters, for them to be aware, to know that their mom walked through colorectal cancer, walked through treatment, and is going to have this disease for the rest of her life.

I think March in general is important in my family’s story because it has changed the trajectory of our family story in regards to changing our lifestyle habits, in regards to God being at the center of our family, because of this giant trial that we walked through as a family. It’s huge for me because I don’t want other people to have to experience any of this, and spreading awareness about it, I feel like, is kind of a given job that I need to be living out, spreading awareness and sharing my story because it is important.

Kalei M. rectal cancer
Thank you for sharing your story, Kalei!

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Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)
Categories
Chemotherapy Orchiectomy Patient Stories Retroperitoneal Lymph Node Dissection (RPLND) Surgery Testicular Cancer Treatments

Jake’s Testicular Cancer Story, IVF, and the Family He Was Told He’d Never Have

Jake L. testicular cancer

Jake’s Testicular Cancer Story, IVF, and the Family He Was Told He’d Never Have

Jake’s stage 3 testicular cancer experience began when he was a 17-year-old high school football player. He initially thought his back pain and poor sleep were part of the season, so he brushed them off. Two weeks after the final game, he noticed a lump on his testicle, so he finally went to the doctor.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Jake L. stage 4 testicular cancer

In a single Friday, he moved from a morning appointment and scans to hearing the words “testicular cancer” and orchiectomy that same afternoon, with chemotherapy scheduled to start the following Monday. Further scans showed that the disease had spread from his testicle to his lymph nodes and his lungs, leading to an advanced testicular cancer diagnosis and an intense chemotherapy plan.

Jake went through four rounds of chemo (five days a week for eight hours a day), followed by a 10-hour, non-nerve-sparing retroperitoneal lymph node surgery (RPLND) at a testicular cancer center in Indianapolis. The surgery removed a mass roughly the size of two fists, left him with a large abdominal scar, and led to a 70-pound weight loss during recovery. Even in those brutal months, he focused on what he had to do next, while acknowledging how emotionally devastating it was for his parents.

The long-term impact of his stage 3 testicular cancer experience was clearest in his fertility. At 18, Jake was told that there was a significant chance he would never have children naturally, and the lymph node surgery ultimately confirmed that.

For years, he and his wife, Brittany, carried a quiet understanding that kids likely were not in their future. A decade into marriage and in their mid-30s, they decided to explore options, meeting with a male fertility specialist and a female fertility team. Together, they created three high-grade embryos: two boys and a girl.

Today, Jake is a school superintendent and third-generation farmer raising two boys on the same land he grew up on, while honoring the daughter they lost after embryo transfer. He talks openly about hope, scanxiety, and why men need to speak about fertility and survivorship so others know they are not alone. His story underscores that “never say never” is more than a phrase; it’s a way of holding on to life, family, and faith even when the odds feel impossibly long.

Watch Jake’s video or read the edited transcript of his interview to find out more about his testicular cancer experience:

  • Early testicular cancer symptoms like back pain and a lump on the testicle can be easy to dismiss, making it vital to listen to your body and seek care quickly.
  • Jake’s stage 3 testicular cancer treatment permanently affected his fertility, yet he continued to focus on the next step in front of him.
  • IVF and ICSI opened a path to parenthood years after treatment, illustrating how modern fertility options can create possibilities even when doctors say natural conception is unlikely.
  • A universal truth in Jake’s story is that hope grows in community. Honest conversations, supportive partners, and sharing experiences help people feel less alone during and after cancer.
  • Jake’s transformation is visible in how he moved from a stunned 18-year-old patient to a school superintendent, farmer, and father who now uses his voice to encourage other men to talk about exams, fertility, and survivorship.
  • Name: 
    • Jake L.
  • Age at Diagnosis:
    • 17
  • Diagnosis:
    • Testicular Cancer
  • Staging:
    • 3
  • Symptoms:
    • Difficulty sleeping
    • Back pain
    • Leg pain
    • A lump on the testicle
  • Treatments:
    • Chemotherapy
    • Surgeries: orchiectomy (testicle removal), non-nerve-sparing post-chemotherapy lymph node dissection
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer
Jake L. stage 4 testicular cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents
  1. Who Jake is and my life on the farm
  2. Cancer symptoms, diagnosis, and initial treatment
  3. Follow-up, scanxiety, and long-term health
  4. Life now: Superintendent, farmer, and daily routine
  5. Fatherhood, IVF, and the journey to our boys
  6. Raising boys on the same farm and the meaning of fatherhood
  7. Reflections on cancer, work, and hope
  8. Messages to other men about fertility, survivorship, and hope

Who Jake is and my life on the farm

Growing up on a dairy farm and becoming a teacher

My name is Jake, and I’m 42 years old. I grew up in a family of six on a dairy farm, which was our livelihood. I’ve worked in education for about 17 years while also working on the family farm. I’m a third-generation farmer.

Childhood dreams, college, and career path

When I was young, I didn’t know for sure what I wanted to do, but one thing was for certain: I wasn’t all that interested in the dairy business. The farming that we did was dairy farming, and I knew that I didn’t want to do that. I was very involved in activities and athletics. My mother was a special education teacher, so I was very involved in education.

When I went to college, I knew that I liked being hands-on, so I thought I would want to be a teacher and a coach. I enrolled in our industrial technology education program, so my teaching career started as a shop teacher.

Why coming back to the farm mattered

It was something that I was always coming back to, even though I went away for college. I came home all the time. I always came back on the weekends and helped in between college classes. I knew that I wanted to come back, live on the farm, and be a part of it.

Being able to be right where my grandparents were is important to us. My wife, Brittany, and I, and the boys have been able to add to the farm, so that’s meaningful to us as well.

Siblings and carrying the farm forward

I’m the only boy. I have three sisters, but none of them live on the farm. One lives about 15 miles away, and the others are a couple of hours away. There’s not a whole lot of interest from them in farming. They’ve always said, “Okay, that’s going to be your deal,” but it’s worked out okay.

Carrying the farm and family name

It was definitely important to carry on the farm and the family name. My dad was the only son of four children. He came along later; his three sisters are quite a bit older than he is. When he came along and was able to continue on the farm and the family legacy, it was a surprise and a blessing to my grandparents. I’ve heard my dad talk about that.

I’m an only boy as well. Being able to continue that legacy and having two boys myself, knowing that it hopefully continues, is pretty cool to think about. But to be honest with you, life is busy, and I probably don’t stop and reflect on that as much as I should.

Size and growth of the farm

We have about 800 acres. We’ve grown it from 160 acres to about 800. We run beef cattle. It’s a cow-calf operation. We’ve added to that throughout the years, and a lot since Brittany and I have been married. But we live on the original 160 acres, and we’re nearing a century with that piece of the farm.

Cancer symptoms, diagnosis, and initial treatment

First signs that something was wrong at 17

I was 17 years old and in my senior year in high school. Throughout the process, I turned 18. My birthday is in November, so this was through the fall.

It was football season and the first thing I noticed was not being able to sleep well at night and having back pain. Being 17, I didn’t think a whole lot of it, especially being in football season. I thought I was sore from that. I went through the season and played, but I still had pain in my legs and my back.

Two weeks after the season was over, I was still having problems. I noticed a lump on my testicle and continued to have back pains, which was what triggered me to go to the doctor.

The one-day path to testicular cancer diagnosis and surgery

I had a doctor’s appointment on a Friday morning, which I remember like it was yesterday. They did an exam and sent me directly over to the hospital that same day. I drank the MRI liquid that highlights your body, and they did a scan.

I went back to my primary care doctor probably mid-afternoon. At that point, they said, “We believe that you have testicular cancer.” They sent me over to a urologist that same day. They did a couple of tests and then said, “We think that you have testicular cancer, and we want to do surgery on you today.”

Later that same day, I had surgery. I had the orchiectomy (testicle removal surgery) and was scheduled to start chemotherapy the following Monday. All of that was in one day.

Hearing the words “testicular cancer” at 18

Being 18, it helped that I thought I was bulletproof. I can remember it being very tough on my parents, though. To this day, I believe the whole process was much harder on them than it was on me from a mental and emotional standpoint.

For me, it was a process-driven experience. What do I have to do? I have to do this, then this, then this, and ultimately, hopefully be okay. I didn’t let it all sink in. My parents thought the worst and expected the worst.

Before going into surgery, I can remember being there with them. They said, “Do you want to get another opinion or delay this and go do something else?” I said, “Let’s just do it,” so I had the surgery that day.

Going into surgery, they told me, “We know you’re just 18, but once we do this and you go through chemo, there’s a chance your sperm cells won’t redevelop and come back, even though you’ll still have one testicle. Do you want to go this weekend and bank some sperm?” I thought, “How in the world am I going to have this surgery and then go do what it takes to bank some sperm?” I opted not to do that at that time because everything was already lined up. I started chemo the following Monday.

Discovering stage 3 disease and the cause of back pain

It was not localized. Throughout the scans, they found that my lymph nodes were enlarged, that the cancer had spread from my testicle to my lymph nodes, and a little spot on my lungs. The spot on the lungs is how they classified it as stage 3 cancer.

The biggest problem was the mass on the lymph nodes, which was causing my back pains because it was pressing against the nerves in the back.

They told me I’d have three rounds of chemotherapy, possibly four, to shrink the mass. I ended up having four rounds. I was receiving treatment five days a week for eight hours a day. Then they gave me a treatment the following two Mondays and I’d have the rest of those weeks off.

Being told I might never have children

Brittany and I were friends/dating at the time this was going on. She remembers it better than I do, but she says we had a conversation where I said, “If it’s meant to happen, it’ll happen some way.”

The prognosis from chemo was basically 50/50 that my fertility would come back. What solidified that I wouldn’t be able to have kids naturally was the post-chemotherapy lymph node dissection. It was non-nerve-sparing; they had to take out part of those nerves that are part of the reproductive process. That’s when they said, “You’re not going to be able to have kids naturally.”

That surgery didn’t happen until about five months down the road. I went to Indianapolis and had the post-chemotherapy lymph node surgery.

Complete treatment timeline and the brutal lymph node surgery

It started with the orchiectomy, which is the removal of the testicle. Then I had four rounds of chemotherapy. That lasted from the end of November through about March of the following year, because each round was about a month.

They gave me a little time to recover from chemotherapy. The chemo made me pretty sick. I remember being sick, nauseous, and vomiting about every day through that process.

Upon completion of chemotherapy, they said, “Okay, we feel like this is good,” and sent me to Indianapolis to Indiana University Health. That’s the same center that treated Lance Armstrong, and they specialize in this surgery and treating testicular cancer. We went there for a consultation first and then scheduled the surgery.

The surgery took about 10 hours. We went back and read the surgery report. They literally have to open you up from the inside. I have about a 10-inch scar from the bottom of my chest going down. They open you, pull out your intestines, set them to the side, and carve out the lymph nodes from the back.

Recovering from that surgery was the hardest part of the whole process, including chemotherapy. I lost about 70 pounds during recovery. It definitely slowed me down.At that age, I did have 70 pounds to lose. I played football, so I was a heavier person. I weighed probably 235–240 pounds and got down to about 165 pounds by the end of the recovery from that surgery.

Finishing treatment and moving into survivorship

I did not have more chemo after that surgery. That surgery was the completion of my treatment. I found out then that they were unable to save the nerves that are part of the reproductive process. It was a non-nerve-sparing post-chemotherapy lymph node removal. They said they took out a mass about the size of two fists put together.

I recovered from that. In the meantime, I was trying to figure out what I was going to do with my life because I was just graduating from high school. I didn’t know what I was going to do until about two weeks before the start of the fall semester. I got a call from a coach at Missouri Southern State University in Joplin, Missouri. He had actually called the day I had my first surgery in November and said, “We’d like to recruit you. Would you like to come down?” I told him, “Here’s the deal. I just got this news.”

He stayed in touch with me. His name was Mark Smith. He’s a Razorback legend and was a coach there at Missouri Southern at that time. Coach Smith stayed in touch throughout my treatments and followed up with me late in the summer. He said, “Hey, come over here.”

I spent the whole first fall season on the video crew. I didn’t practice or participate because I hadn’t been cleared yet. I was part of the video crew and filmed for them. Then I worked out and started rebuilding some of my strength.

Follow-up, scanxiety, and long-term health

Being declared in remission and long-term follow-up

I think it’s 10 years before they say you’re essentially clear. I had to go back every month for the first year, every two months in the second year, every three months in the third year, every four months in the fourth or fifth year, then every six months, and then once a year up to 10 years.

After 10 years, they basically say you have a better chance of developing some other type of cancer than this one returning. That all worked out perfectly for me. No warning signs and no scares along the way. They truly treated it, removed what they needed to remove, and cured me.

Fear of recurrence and scanxiety

There was always a fear that it would come back. Every single time you go in, you think, “What are we going to find out now?” That developed more as I got a little older.

I hate that for anybody who’s been through cancer treatment. Every time you go in for a blood test, you wonder what it’s going to show. The anxiety that you have with that is something you really can’t explain, but it is definitely a real thing.

Staying on top of my health after cancer

I do go to the doctor regularly. I have my annual visit and make sure we get all the markers we need from a blood test standpoint. Anybody I talk to who is having these issues, I tell them, “Don’t delay. Just go do your exams.”

I believe young men should do testicular self-examinations, much like we encourage women to do their self-exams. Men need to be doing the same thing.

Life now: Superintendent, farmer, and daily routine

Balancing school leadership and farming

I work off the farm and I’m a school superintendent. I’ve been in school administration for about 13 years. I love the work. I love helping kids. I love the complexities of the school systems, but I also love the farm. I know those things have to be maintained together.

About every morning between 4:30 a.m. and 5 a.m., I wake up and take care of our chores. Many times, people ask, “How do you do everything? How do you do this?” Between getting kids around and everything else, I’ve learned the processes that have to take place to make sure the chores get done, the cattle get fed, and then we pick up the outlying pieces after work, on weekends, and on holidays.

Morning chores and farm management

Morning chores take about an hour and a half in the winter and about 30–45 minutes in the summer. It’s important to maintain your grass and pastures in ways that keep them as low-maintenance as possible. It’s also important to have a good network of people to help get it all done, like mechanics and fencing folks, to help you accomplish it all.

The hardest and most rewarding parts of cattle farming

The hardest parts are adapting to the market and the cost of inputs you’re using, whether it be feeds, fertilizer, or the market for the cattle you’re raising. Those things are not set in stone, and if you do the same thing over and over again, you’re probably not going to maximize your earning potential.

Knowing how much your inputs cost matters. If you usually take your calves to 850 pounds, sometimes it might not make financial sense to take them that far. It might be better to wean them and sell them. Recently, there have been times when it didn’t make sense even to do that, and you might want to sell them off the cow. Adapting to those ebbs and flows is challenging.

The most rewarding part is simply the work. For the past seven years, it’s been doing it with my family. For the past year, the best part has been Brittany’s involvement and our Faithful Farming marketing and social media aspects, where we’re documenting this and sharing the journey with anyone who wants to follow along. It’s the most fun we’ve had in farming, and I think it’s because all of us, including my dad, have a part in it. It’s been good.

Lasting physical effects of treatment on farm work

I haven’t experienced neuropathy. The biggest thing I’ve noticed through the years is scarring, probably from all the nausea and vomiting. I think I’ve got some long-term effects from that, but those are pretty treatable with proper medication. Outside of that, I consider myself very blessed.

Farm tasks that feel most purposeful

Feeding and caring for the livestock are what make me feel most connected to my purpose. I like doing those the most. That’s the daily grind. Everything else is a one-off project, but the daily feeding and caring for the livestock, and making sure everything is healthy and has the nutrition it needs, is the work I enjoy the most.

A typical workday and farm day

On a workday and a school day, I come in at about 6:30 a.m., turn on the lights, and start waking everybody up. Since having kids, the challenge has been how to slip out quietly so the boys can keep sleeping and get their rest. My oldest knew the second I got up and was with me all the time. Between about ages one and three, he would get up at 4:00 a.m. and go with me, but I knew that was unsustainable once he started school.

When I come back in, that’s when we start getting ready for school. The boys go to school with me. I’m in a small K–8 school here, and I’m very blessed to have them with me in the same building all day long.

On a non-workday or non-school day, it becomes a farm workday. I’ll have a number of projects lined out. The family helps me with that. They usually go and feed with me as well. We pick out some chores and wrap up the day as best we can. Those one-off projects are where I struggle to get ahead, because I feel like I never get as much done on those projects as I want to. But that’s probably life in general.

Working cattle, vaccinations, and weaning

Every now and then, we have to bring the livestock in for vaccinations or treatments. We work the cattle about once a quarter for various health reasons: annual or semiannual vaccinations, deworming, or addressing herd health issues. Weaning is when we take the calves off the mothers, and we have a specific protocol we go through for that.

Evening chores and spending family time outside

When we get home from school, we still have chores to do. In the morning, most of those chores are done in the dark. In the evening, we get an hour to an hour and a half of daylight in the winter and a few hours in the summer. We work on either projects or general maintenance and catching up.

The boys’ favorite parts of farm life

The boys love being around the cattle and working the cattle. They’re always up for an adventure. My oldest likes driving any piece of equipment that exists, and he’s pretty good at it. He loves operating a tractor, the skid steer, or the side-by-side.

As a family, we love to go on an evening cattle check. Those are pretty special to us because all four of us are together, checking the cattle, and making sure everything is good. There’s always something that comes up, though.

Fatherhood, IVF, and the journey to our boys

Discovering fertility options years after cancer

Being a father has been the greatest experience of my life. Brittany and I were married for 10 years before having kids. We were close, and from the beginning, she had been on the journey with me. We knew we weren’t going to be able to have kids naturally.

We were on vacation in 2017 when we said, “We’re not getting any younger.” Time was ticking away. We were both 35, and we said, “If we’re going to have kids or try to have kids, we might want to explore what options are out there.” We didn’t know if there would be any options, but we didn’t want to be 10 years down the road and not have at least explored and tried.

I started with a local urologist and asked what they thought. They referred me to a specialist in Frisco, Texas. Brittany and I went to a male fertility specialist, Dr. Bush, in Frisco.

Here’s a little different part of our journey. We share our in vitro fertilization (IVF) story with couples regarding infertility. We knew where the issue was; it was with me. I think that simplifies the IVF journey for people. Often, couples don’t know where the issue lies, so that allowed us to hone in on what direction to head first.

The needle test and the first miracle: Viable sperm

When we went to see Dr. Bush, he said, “I’m going to take this needle and stick it into your testicle to see if you’ve got any viable sperm.” I said, “Okay.” He numbed me up a little, stuck the needle in my testicle, pulled the sample out, and squirted it into a dish.

He said, “Now I want you to go across the road to a female fertility specialist.” We set up an appointment for Brittany, and they laid out the process of harvesting her eggs and what would come next. We got all the drugs for Brittany to get her set up. That whole process is hardest on her because of the hormone injections and everything that goes into it. It’s a tough process for any woman who has to go through it.

Egg harvest, ICSI, and that unforgettable “pocket” day

We scheduled a date: I’d go back to Dr. Bush, and Brittany would go back to the female fertility specialist on the same day. Brittany would have her eggs harvested, and I’d provide the sperm sample.

Brittany went through the process and had her eggs harvested. I think they got about 30 good eggs. They allowed her time to recuperate. We did intracytoplasmic sperm injection (ICSI), where they put my sperm and her eggs together on the same day.

That day was very interesting. Brittany dropped me off at the male fertility specialist and went on to her appointment, where they were going to harvest her eggs. I went to Dr. Bush. He did just what he had done before: he pulled a sample with a needle out of my testicle, squirted it into a little tube that looked like an old film canister, and put a lid on it.

Prior to that, he said, “Make sure you wear a shirt with a pocket on it.” I said, “Okay, I’ll wear a shirt with a pocket.” He put an ice pack on me, took that tube, stuffed it in my pocket, tapped me on the chest, and said, “Go over there and give that to them,” pointing across the road.

I walked into the embryologist’s office and gave it to them. I said, “Make sure you put my name on that.” At the same time, they harvested Brittany’s eggs.

We knew we didn’t want any more embryos than what we planned to use. We limited the fertilization to 10 eggs. That’s a tough process for anyone. Whether you get zero embryos or 15, the cost is the same. If we had 30 good eggs but only fertilized 10, they could have fertilized all 30, but we did not want any unused embryos with life that we weren’t willing to implant and carry out. We knew beforehand we’d only fertilize 10 eggs.

They fertilized 10 eggs and froze the rest of her eggs. On the way home, we got a call: seven were showing life. That was the same day. On the way home, we said, “We’re going to have to buy a conversion van or a big bus,” joking about the number of kids.

Three days later, we got another call and found out we had lost two; we were down to five. On the fifth day, we lost two more, so we were down to three. On day five, you either implant the embryos or freeze them. We chose to freeze all three embryos.

That same day, we did genetic, gender, and chromosome testing. We found out that all three embryos were either AA grade or AB grade, so they were all of very high grade. We had two boys and one girl. I remember Brittany coming to see me at work. She pulled out baby outfits: a boy outfit, a girl outfit, and another boy outfit. It was a great moment.

Implanting J. Henry, Jack, and Anna Kate

About 30–45 days later, we let Brittany’s body recover and get set up for implantation. We named all three of them from the beginning: J. Henry, Jack, and Anna Kate. They put in the first embryo, our first boy, J. Henry, and everything went great. He was the joy of our life for two years when it was just him, Mom, and Dad.

Then we started the next process. We decided we wanted to go boy-boy-girl in birth order, so Jack was put in next. He was a pill to Brittany during the pregnancy. He pinched off her urethra at one point. He’s been a pill since the day he went in, but everything went well. He was great and healthy.

About two and a half years later, we put in Anna Kate. She made it for about two weeks, and then we lost her. I hadn’t been emotional about that since the whole thing, but we feel very blessed to have the two boys. They are a lot of our lives.

Deciding to be done and not using donor sperm

We decided we were good and that we were blessed to have the boys we have. We never considered using donor sperm. We considered adopting an embryo. We learned how many “snowflake babies” are out there, which are embryos that have been given the blessing of life but are just frozen. We considered that if it didn’t work out with our own embryos.

We only did one round of IVF to get those 30 eggs. Even in preparing for implanting the embryos, Brittany had to go through another process, which was tricking the body to act like it was pregnant. Anytime you’re injecting hormones into any of us, it’s tough. It’s good in one sense because of the outcome, but it’s still hard. The more natural things can be, the better. That’s the way God intended it. But this is what we needed to do.

What Brittany endured through IVF

I don’t think I talked about her enough. None of this would be possible — children or even marriage in the way we know it — without Brittany. What a woman has to go through for IVF, carrying a child, and the anxiety and unbearable weight of going through that same process two more times is nothing I’ve ever been through and nothing most men ever go through.

We were blessed beyond belief, but while the blessings were enormous, the weight that Brittany had to carry, knowing that each round was another round of shots and everything that came with being pregnant, carrying the baby, and everything leading up to it, was huge. In my opinion, what I went through was a drop in the bucket compared to what Brittany had to go through to bring our children to life.

Raising boys on the same farm and the meaning of fatherhood

Who the boys are today

Our two little boys fight like crazy. One moment, you can be furious with them; the next moment, you love them to death and wonder how anybody can be so sweet yet so ornery in the same body. We love them. They are everything to us.

Watching them grow up where I did

Every day, I count the blessings that they’re out there digging in the same dirt that I dug in and playing in the same barns that I played in. Not only that, they’re the same barns my dad played in. We see that as very special.

It’s also very special to have Papaw just down the road. I know they love that. They adore their Papaw. When he wants to get out and cruise around on the side-by-side, or when they want to run down and see him, that’s pretty special. Knowing that we have this place, and knowing how close it was to not happening, makes me feel blessed every day.

Little moments on the farm I never want to forget

Right now, I feel like every day is something I never want to forget. We’re at a good age. They’re both capable. They still want to be around Mom and Dad. They act as if they like us. They’re definitely growing into themselves right now. It’s fun seeing their relationship develop.

For several years, little brother wasn’t as capable as big brother. Seeing big brother recognize that little brother is pretty relevant to his life now and seeing their relationship grow has been very awesome the past couple of years.

What I hope my sons say about me one day

When my boys are grown, I hope they can look back and see the Christian influence I tried to be for them. I hope they recognize what it means to be a good person, what it means to be a Christian, and what it means to be a father, and that they can reflect on their experiences with their dad for that.

What I hope the farm represents for future generations

I would love nothing more than for them to find a way to live here and make it work. Ultimately, I want the farm to be able to support them in whatever direction they want to go. That’s every farmer’s dream, for their kids to come back and carry it on. Why else would we be doing it?

But if they want nothing to do with it, I’m not saying it wouldn’t bother me, but I want it to help them do whatever they want to do.

Reflections on cancer, work, and hope

How the diagnosis-day version of myself would see my life now

The version of me from diagnosis day probably wouldn’t believe where I am today, especially when it comes to the kids. It was a hard “no” from the time of the surgery until Brittany and I were sitting in Ocean Springs, Mississippi, saying, “Do you think we ought to try this?” It was a hard no until that conversation, when the idea was planted that there might be hope. I don’t think that earlier version would believe where we’re at now.

Surviving, fear of other cancers, and family history

I don’t think I face the fear of this cancer returning. I think the fear of a different kind of cancer might be a little stronger than for the average person. I believe what the doctors told me was that there’s a greater chance of getting a different type of cancer than this one returning at this point in my life.

My dad went through prostate cancer treatment. It definitely took a toll on him, but he was able to move through that pretty well. That’s something of concern. You hear horror stories, particularly in men, about colon cancer and pancreatic cancer, and those things are always at the back of my mind.

How cancer changed my sense of a hard day’s work

Cancer definitely made me grow up quicker. At that time, I remember having a different perspective than some of my peers and friends. On the negative side, sometimes I feel like it has made me a little less compassionate about some of the small things we complain about.

I try to be conscious of not getting hung up on small things and of talking with and counseling people to not get hung up on the small things. Things could be worse. However, we each have our own battles.

Messages to other men about fertility, survivorship, and hope

To men who have been told they may never have children

Never say never. At that time, I didn’t even know what options could have been available. The technology is pretty incredible. Life is very incredible. God has a ton of blessings. Never say never about anything. We don’t know.

Why men need to talk about fertility and survivorship

Men need to talk about fertility and survivorship so that others with the same struggles know they’re not alone and can maintain hope. Hope is such an important word when it comes to cancer and when it comes to men being able to have children. Without hope, things can get overwhelming and feel defeating. Conversations, dialogue, and hearing each other’s stories create hope.

What my story says about hope

My story says that hope is there and to never give up. Don’t take no for an answer. Keep the hope alive.

Jake L. stage 4 testicular cancer
Thank you for sharing your story, Jake!

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Symptoms: Noticed one testicle larger than the other, dull pain

Treatments: Orchiectomy (surgical removal of one testicle), chemotherapy
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Bowel Chemotherapy Colorectal Metastatic Patient Stories Surgery Treatments

Stage 4 Bowel Cancer to No Evidence of Disease: Nina’s Honest Experience

Nina H. stage 4 bowel cancer

Stage 4 Bowel Cancer to No Evidence of Disease: Nina’s Honest Experience

When Nina first began noticing changes in her body, she never imagined they would lead to a stage 4 bowel cancer experience. A busy mom of three in Leeds, Yorkshire, England, and a longtime hairdresser, Nina had always seen herself as “the healthy one.” She was active, into Pilates, and focused on holistic wellness. For years, her digestive issues were labeled as irritable bowel syndrome (IBS), even as her discomfort escalated and new symptoms appeared, including skin flare-ups and blood and mucus in her stool. In the middle of the COVID lockdown, she pushed through the pain, assuming it was just another rough patch.

Interviewed by: Carly Knowlton
Edited by: Katrina Villareal

Everything changed around Mother’s Day 2021, when severe, localized pain and dark stool led to an urgent trip to the accident and emergency (A&E) department. Imaging revealed a mass in her bowel that had spread to her ovaries and suspicious spots elsewhere, leading to a stage 4 bowel cancer diagnosis. Nina underwent major surgery to remove part of her bowel, both ovaries, and a section of her bladder. She was placed on chemotherapy as “mop-up” treatment, but the treatment regimen hit her hard. She lost a significant amount of weight, needed total parenteral nutrition (TPN) and fluids, and scans then showed new liver spots. One doctor told her the liver disease was inoperable and brought up palliative care.

Nina H. stage 4 bowel cancer

Nina refused to accept that as the end of her stage 4 bowel cancer story. Anchored by her three children and her belief that it wasn’t her time, she focused on everything within her control — nutrition, movement, supplements, prayer, and making keepsakes for her kids in case she couldn’t be there in the future. Her oncologist adjusted her chemotherapy schedule, and follow-up scans showed the liver lesions shrinking. Surgery later revealed those lesions had turned into dead tissue, with no active cancer remaining, leading to a discussion of having no evidence of disease that felt surreal and almost too fragile to celebrate.

Today, Nina’s experience is about more than clear scans. She talks openly about the anxiety, hypervigilance, and survivor’s guilt that followed treatment, including becoming more of a hermit, fearing certain foods and products, and feeling like she has to make every moment count as a parent. Meditation, Pilates, daily movement, and making her own skincare have become part of her ongoing healing. Nina’s stage 4 bowel cancer experience may be uniquely her own, but her message is universal: hold on to hope, listen to your gut, and remember that you are not a number.

Watch Nina’s video or read the edited transcript below to find out more about her experience:

  • Early symptoms of bowel cancer can be mistaken for IBS, so persistent red flags like blood and mucus in stool or severe new pain should be taken seriously and re-evaluated
  • A “no” from one clinician, including talk of palliative care only, doesn’t have to be the end of the story, seek a second opinion
  • Asking questions and revisiting treatment options can sometimes open new paths
  • Nina describes a meaningful transformation from constantly rushing and “pushing herself” to slowing down, honoring her limits, and prioritizing peace, presence, and time with her children
  • Survivorship brings complex emotions, including anxiety and survivor’s guilt; getting support, sharing honestly, and finding a community of people who understand can make that phase more manageable
  • Every person and every cancer experience is different; you are not a statistic, and there is value in focusing on hopeful stories as well as medical care.
  • Name: Nina H.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Bowel Cancer
  • Staging:
    • Stage 4 (Metastatic)
  • Symptoms:
    • Longstanding IBS-like symptoms
    • Skin flare-ups
    • Blood and mucus in stool
    • Dark stool
  • Treatments:
    • Surgeries: bowel surgery, removal of both ovaries, partial bladder resection, liver surgery with removal of two liver sections
    • Chemotherapy​​
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Table of Contents
  1. Meet Nina: An Active Mom, Hairdresser, Pilates Lover
  2. First Red Flags Before Diagnosis
  3. Trip to A&E and Getting the Stage 4 Bowel Cancer Diagnosis
  4. First Chemotherapy Plan and Sudden Liver Metastases
  5. Refusing to Accept Palliative-Only Care
  6. Adjusting Chemotherapy Regimen and Shrinking the Liver Tumors
  7. Life Before Cancer: Extremely Active and “Didn’t Fit the Box”
  8. Telling the Kids and Parenting Through Chemo
  9. Side Effects of Chemotherapy
  10. Anxiety, Hypervigilance, and Becoming More of a Hermit
  11. Finding a New Mental Balance and Avoiding Doom-Scrolling
  12. Hearing “No Evidence of Disease”
  13. Major Surgeries and Surgical Menopause
  14. Recovery and How Long It Took to Feel Like Herself
  15. What Survivorship Feels Like Now
  16. Being “The Strong One” and Finding Community
  17. Making Keepsakes for Her Kids
  18. Meditation, Movement, and Lifestyle Changes After Cancer
  19. Advice to Others
  20. Final Reflections and Listening to Your Gut

Meet Nina: An Active Mom, Hairdresser, Pilates Lover

I’m Nina. I live in Leeds in England. I was diagnosed with stage 4 bowel cancer in 2021.

I have three kids, so they take up a lot of my time. I’m very passionate about my family time and all those kinds of things. I’m very into my Pilates and holistic side of things. I am a hairdresser by trade as well, so that’s what I did before. I’m back doing that part-time.

First Red Flags Before Diagnosis

I suffered with IBS for years, or what they thought was IBS. It was during the COVID lockdown where things progressively got worse, to the point where the discomfort was becoming more and more. I was having skin flare-ups and everything. Then I started having blood and mucus in my stools.

I contacted the doctors and they were like, “Come in.” It was lockdown, so it was difficult to get an appointment. I got in for some tests, but I never asked what they were testing me for or what tests they were doing. When the results came back and everything was fine, they were just very much like, “Oh, it’s just IBS. Maybe cut out certain foods and see yourself what things are bothering you,” so not much help at that point.

Then things got a little bit better. I started cutting stuff out of my diet. I did the York Test to find out what I was allergic to and what I might be intolerant to, and I cut a load of stuff out of my diet. That was in the summer of 2020, mid-lockdown. By Christmas, things did get worse.

I woke up the day before Mother’s Day 2021 in severe pain, but I got myself through the day. I thought, “It’s just a bad spout; ignore it.” But the following morning, I was very concerned, because my stool was dark. The pain was horrendous. It was down one side.

Trip to A&E and Getting the Stage 4 Bowel Cancer Diagnosis

We thought it was best to phone 111 and see what they recommended. They told us to go to A&E, and that’s where it all started. While I was in, I thought I’d be out later on and that it’s fine and it’ll be nothing.

They scanned me and everything, and the doctors came to see me and they were like, “We think it’s a twisted ovary or something like that. We’re going to keep you overnight and do a few more tests in the morning.” That was fine. The following morning is when the doctors came to see me and said, “We’ve had a better look at your scan and you’ve got a mass on your bowel that’s spread. It looks like it’s gone to your ovaries, and you’ve got two other spots that we’re concerned about,” one on your liver and one in my chest.

They said, “We think it’s cancer and we need to get looking now and get you in.” Basically, they kept me in while they did all the other tests to see what everything was. It was confirmed that what was in the bowel was cancer, and they were certain that it had gone to my ovaries. The scans on my liver and chest all came back clear at that time.

They sent me in for an operation six weeks later. I went in for my operation. They removed part of my bowel. Luckily, they were able to put it back together and I didn’t have to have a bag. Then they took both ovaries just to make sure. While they were in, they did notice something on my bladder, so they had to take a little bit of my bladder too. But they felt like they did quite a good mop-up job and thought that was it.

First Chemotherapy Plan and Sudden Liver Metastases

They decided to put me on six sessions of chemo, three weeks apart, as a bit of a mop-up just in case. But that didn’t go to plan. I fell ill on the chemo, to a point where again I ended up being taken in. I’d lost a lot of weight, and they thought I had an obstruction.

They scanned me for that and had to keep me in. I was put on TPN and fluids because I couldn’t eat or drink. The scan revealed that I had two spots on my liver.

At this point, when the guy came to see me when I was in — again, it was COVID, so we didn’t have many people that were allowed to come in — the doctor came to see me and asked if my husband could come the next day to discuss the results. So you kind of know that there’s something.

The next day, he came and the doctor told us they’d seen these two spots that, in his eyes, weren’t operable. He basically just said that he’d get the palliative care team to come and see me.

Refusing to Accept Palliative-Only Care

From that point on, it was like, “Right, I’m not taking that as an answer. I’ve got three kids. I don’t think it’s my time. I’m a healthy eater. I’m going to up my game. I looked into every bit of food that I could possibly think of that would help me heal my body and fight the cancer.”

That was my aim: to get out of the hospital and just crack on with that. I was busy making things for the kids while I was in the hospital so they had something of mine. You sit there and think about things you might say to your kids at different stages of life. I was preparing myself for things to write down, to be able to give them if I wasn’t around. I’d probably say that was the darkest point of my journey, really.

After, when I did get out, when I put a bit of weight back on and was allowed back out, they were ready to decide whether to do the chemo again. They decided that my oncologist, who didn’t see me in hospital because it was somebody else, still thought the chemo was working. But he did change how he was administering it.

Adjusting Chemotherapy Regimen and Shrinking the Liver Tumors

Rather than just going in and having the drip and then having tablets for a week, I’d go in every two weeks for a drip and then I’d come home with another little drip on. Then we’d see how I went halfway through and scan me.

The liver bits had actually shrunk, so he was happy with that. They kept me on for the rest of the program, and they were hoping that if they’d shrunk enough, they’d be able to operate. At the end of it in the October, they left me for a few months just to heal, and then they scanned me and they were right — the lesions had shrunk and they were happy to operate. There didn’t seem to be any more spread anywhere else.

It was February 22nd when they decided to remove the bits from my liver. They were very shocked by what they found when they tested it. It was all dead tissue. There was no active cancer there. It had completely died. They were basically like, “Whatever you’re doing, keep on doing it.”

That’s what I’ve been doing since and all my scans have been clear. I’ve been very lucky. I do put it down to what they did, and I put it down to my diet and all my praying and crying. I did say at the very beginning, it wasn’t my time. It will be five years next year, but it does feel like it was only last week. I don’t think it will ever fully go.

Life Before Cancer: Extremely Active and “Didn’t Fit the Box”

I was a busy mum of three. I worked in hairdressing full-time. Because it happened after lockdown but before things were fully back to normal, I was a busy mum with three kids. I trained. I did silly winning competitions, like the mud races and all that. I loved all that. I weight trained. I was very active and very healthy but probably pushed myself a little bit too much.

It was a bit of a shock because I was a healthy eater, I trained, I worked out, and I was very active. I had three kids, so I was constantly running around after them. It was a shock because I didn’t put myself in that bracket. I think that’s what the doctors didn’t do at first. They thought, “She’s healthy. She eats well. She trains.” I never went on about being tired because I’m a mum of three. I’m always going to be tired.

I was a very active person. I was always quite a positive person beforehand, but I do think I took life a little bit for granted. One of the positives that has come out of this is it has made me look at life a bit better and slow down and appreciate the little things.

Telling the Kids and Parenting Through Chemo

We didn’t want to name it because I’d had some problems for years. We didn’t tell them it was anything. We didn’t say cancer. We didn’t want them to hear that word and be scared, so we kept it quiet. After my operation, I lived with my parents for six weeks while I healed, but the kids could come and see me. We tried to keep everything as normal as we could.

When chemo started and I fell poorly, I think it was because I was hiding it. Every time I felt bad, I didn’t want them to see me like that, so I was dealing with it on my own. Trying to feed myself and all that was hard. When palliative care came into it, we had to tell them the truth.

They’re quite strong characters, so they never asked us the worst. You don’t want them to ever go, “Are you going to die?” They didn’t ask that. I think that’s because my husband and I are quite positive people. We don’t look for the negative. We always look for that little silver lining, and I think that helped.

With it being lockdown, they never saw me in the hospital. They never saw me poorly in a hospital bed with tubes or anything like that, so I think that helped them. I have a good team around me. The family is great.

Side Effects of Chemotherapy

I think I did two or three the first time around, and then they changed it. It was either six or eight the second time around. I think it was six. My husband thinks it was eight. I can’t quite remember. I didn’t lose my hair, and again, I think that helped with the kids because my youngest one doesn’t think I had chemo. He’s like, “You didn’t lose your hair, Mummy.” I was like, “Mummy did.”

The sickness and the tiredness got worse with each round. But I think because I had such a healthy diet, I was always in the mindset of, after every chemo, I need to heal myself for the next one. I juiced. I did everything I possibly could so that the chemo would have another good go at doing what it needed to do.

I never want to feel like that again. I dealt with it, and I do feel like I dealt with it well, but I’d never want to go back there. I had this weird cold thing. I couldn’t touch certain things. I couldn’t touch knives and forks. I don’t know what the name of that is. I couldn’t drink anything below my body temperature; otherwise it would feel like it was locking my throat. Apart from those side effects, I was quite lucky.

Anxiety, Hypervigilance, and Becoming More of a Hermit

I’ve become a little bit of a hermit. I do lock myself away a bit because a lot of things do scare me now. I felt like I was so healthy beforehand and I would not have expected anything like that, so I don’t socialize as much as I used to.

I’m too scared to drink, even though I didn’t drink before. Going out and being in that social environment, I get quite anxious. Same with the kids: whatever they eat, whatever they drink, I’m very conscious. I make all my own skincare range because I’m too scared to put anything on my skin that I don’t know what’s in it, so I have become a little bit of a nervous wreck.

Each year, I have gotten better, and every time I get a clear result, it gets a little bit easier. I’m working a bit more now, so that’s helping. But I think getting over the mental side has been the hardest. The physical side, I’m more or less back to the way I was, but the mental side is taking a bit longer. I meditate. I also don’t read or look up things too much now. I’ve cut that down a bit and just try to be a bit more present.

Finding a New Mental Balance and Avoiding Doom-Scrolling

I know I’m healthy. I’m doing everything right and just stick to the positives. We’re in a world where you can overlook stuff. The more you look up stuff, the more you see the negative than the positive.

Doing something like this is trying to put that positive out there. I’ve got a positive story. I had a positive outcome, to say how stage 4 bowel cancer had gone so many places. I’m lucky to be where I am, because we did have a neighbor who was also diagnosed at the same time as me who didn’t get through it, so it does make you count your lucky stars a little bit that I’m still here.

As much as I lock myself away, I’ve been given that chance to live again. I drive the kids potty because I want to make every second count, every memory count, and they’re like, “I just want to be a teenager.”

What I’ve found on this journey is that when you’re in the treatment and your surgeries, you’re fighting the fight. Then when you’re finished and the doctors go, “Yep, fine, see you in a year,” you feel very much left and quite vulnerable. Any little twinge or anything, I feel like I have to phone them and go, “Just please check it. Just make sure that it’s nothing.” They are understanding of that. They know that they told me I was fine before, so I don’t always take their word for it. But again, that is getting better.

Hearing “No Evidence of Disease”

I was with my mum. She came with me to the meeting to see the oncologist, for him to say, “There’s no evidence of disease and we’re just going to put you on monthly checkups.” That was it.

I didn’t want to celebrate it. I didn’t know what to do because we walked out of the meeting, and then my mum looked at me and went, “Are you happy? Are you happy?” I went, “Yeah, but I don’t feel like I can enjoy it. I feel like if I laugh in its face, it might come back,” so it was a bit of a surreal moment.

I didn’t want to go out and start screaming, “It’s gone! I’m free from it,” because there’s always that what if. I always have to mentally have it there and prepare myself to hear those words again, so I didn’t feel like I could just jump for joy.

Major Surgeries and Surgical Menopause

They removed part of my lower bowel, both my ovaries, and a section of my bladder where there seemed to be some disease. That was the first surgery. They did all that and “had a good rummage,” they said, and looked at everything else. They didn’t see it anywhere else, just those things.

They did put me into surgical menopause with that. That’s probably been another battle in itself, just getting over the surgical menopause. I thought it was going to be moods and hot sweats. I wasn’t expecting the joint problems, brain fog, and all that, because my brain does not work like it used to either. That’s another thing, but I won’t put that down to the chemo; I’ll put that down to my hormones.

The second surgery was just my liver. They took two sections of my liver, but at the same time found scar tissue that had caused the bowel obstruction. They did all that at the same time. It was a good six weeks, maybe a bit longer with the second. I don’t know why, but physically, it took a lot longer. Six weeks until I felt more like myself.

Recovery and How Long It Took to Feel Like Herself

I don’t think you realize how much you use your core. The taking of the organs didn’t seem to bother me. Everything worked fine. I was lucky because I didn’t have to have a bag, so I think that was a big help.

I heal pretty well. I do bounce back pretty quickly. The first surgery, I was six weeks and straight into chemo, so we never really knew what was causing problems — whether it was the chemo, still getting over the surgery, or going through the menopause. A lot of things at that point were masked.

The second surgery, again because it was the same kind of surgery, it was another six weeks until I could physically do the basics. I was just happy to be here, to be honest. I just took my time. I’ve got an army of people around me, so I just took my time and didn’t push myself, because they all know what I’m like. I can try and jump in too soon, hence my mum keeping me for six weeks every time.

What Survivorship Feels Like Now

It’s a strange one because you don’t want to take anything for granted. You want to live your life to the full, but at the same time, you’re scared. You’re scared of hearing those words ever again. Then you get the guilt. There’s a bit of guilt there, going, “I shouldn’t be scared. I should be going for it.”

Then there’s this survivor’s guilt. The amount of people who I knew that didn’t make it through, you do question, “Why me? Am I not doing enough? Am I not living my life? Are they going to think I’m not living my life to the fullest?” It’s a strange one. People think you should be jumping up in the air and celebrating it, but you’re just scared to hear those words again.

From the beginning, when we found out it was stage 4 bowel cancer, it was, “I’m not going to be here for my kids.” You sit and plan all the things that you might say through each milestone of their life. You never forget that feeling, and you don’t ever want to feel that feeling. So surviving it, you do want to make the most of life, but it’s hard. It’s hard.

Being “The Strong One” and Finding Community

I have a very good unit, and I am the positive person everyone comes to. They’re like, “You’re not the one who’s supposed to break. You’re the one who’s supposed to hold everyone together.” As a family, we all saw it as: if anyone’s going to get through it, it’s Nina. She doesn’t go without a fight. That’s kind of how it was.

Survivorship is one of those things you don’t understand unless you’ve had those words. I was very open on my Instagram about my story and what I was going through, just in case it reached anybody else that was fighting. I have met some lovely people and made some close friends who are either going through it now or went through it at the same time as me.

You have that little community where you’ve got a little secret wink of, “I know how you’re feeling,” kind of thing — and you need that. As much as your family love and care for you, they don’t quite understand. There needs to be support for them as well, because they don’t quite understand that being scared of what’s coming, especially when you think that that is it.

It feels like it’s just a matter of weeks or months or something. I can’t even explain that feeling. I’m not saying it’s any easier when you haven’t got kids, but when you have kids, you think you’re never going to see them do certain things in their life. You have kids because you want to see all that.

Making Keepsakes for Her Kids

I made some little knitted mice. I think one of my sisters must have bought me a kit. I made one for each of my kids. I think I did some for my mum as well. When I was in the hospital the second time round, when I was poorly in between my chemo, I made them all little bookmarks — something that I’d made and touched so they could have something.

I wanted them to have something that would remind them of me if I wasn’t there. I just wanted them to have something that I’d made. I’m not very good at knitting. They’ve still got them.

Meditation, Movement, and Lifestyle Changes After Cancer

I meditate. I’ve got better at it because I was not very good at it at first. I have a very busy head. I do lymph drainage, a body tap. I have a trampoline in my back garden that I bounce on every day.

I do Pilates. I don’t lift weights like I used to. I don’t put my body under that much stress because I believe stress was a big cause of my cancer. I do meditation, Pilates, moving my body in general without pushing myself, and walking. We have a dog now. Once I knew that I was okay, just being outside in the fresh air has helped.

I eat extremely healthily. I eat more of a vegan diet, but I just think as long as you’re eating good food, not processed, stick to that. I do supplements, but I think in general it’s just reading your body. If I’m tired, what can I do to help my body? Meditation has been great for my head because that is one thing I do struggle with.

Everything I use on my body, I make, like my own creams and stuff. My kids aren’t the biggest fans; they’re getting used to it. Pilates and meditation have been the main thing for me right now.

Advice to Others

I think all cancers kind of come to the same thing. You’ve just got to hold on to hope, no matter what the diagnosis is. We are not a number. Everyone’s unique. I always say: don’t Google.

Look for the positive stories. I was never one to go and look at negative stories. There are some great books out there. “Radical Remission” was one of the books that I read that was just a game changer for me, because it had so many positive stories and outcomes in it.

You’re not saying you look for the negative, but the negative stuff comes up pretty easily, so don’t look for that. What I tell the people that have contacted me is: everyone’s journey is different. I’m not saying the younger ones or the older ones are any different, but don’t put yourself in any kind of box.

I just had hope. I told my oncologist, I’m here till I’m 96, so I’m not that easy to get rid of. You do have to take it into your own hands a little bit. The doctors can do what they can do, but don’t just leave it to them. There are so many things that you can do for yourself, whether it’s healthy eating, meditating, or moving.

Moving is a big one. Don’t just crumble, as much as it’s so hard. Speak. Tell people how you feel. Even if you think they don’t want to hear it or they’re too scared to hear it, it’s better out than in. If you can’t speak to the loved ones about it, there are people out there that will talk to you. Macmillan is amazing.

You’re not alone, because it is a very lonely place. It is a very, very, very lonely place. That’s what I told my father-in-law, actually. He was diagnosed this year. He’s a big guy, very proud. I just remember holding his hand and saying, “You’re not alone.” I said to my husband, “I want him to know that he’s not alone, because as much as you put a brave face on, it was a very dark and lonely place, especially when you feel that people don’t understand.” You’re not alone.

Let’s have hope and just find your little community to talk to.

Final Reflections and Listening to Your Gut

It’s tricky because, like I said, we aren’t a textbook, so everyone’s different. As I’ve said to anybody who’s spoken to me about what I did or things I might have taken, you’ve got to find your own path. You can take advice from everybody, but don’t do anything that doesn’t feel right.

I always went with my gut. If something in my gut took me in that direction, I would follow that. But if people were advising all sorts and I had a doubt, I wouldn’t go down that route. Tune into yourself and figure out what’s right for you.

Do what you can do for yourself and not just leave it to the doctors, because the doctors can only do what they can do. They are amazing. I had some amazing people at the hospital. I’ll never forget their faces and their names. But at the same time, I did take control of it myself for certain things. Everyone’s journey is different.

Nina H. stage 4 bowel cancer
Thank you for sharing your story, Nina!

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Appendix Cancer Chemotherapy Cytoreductive surgery (CRS) Patient Stories Surgery Treatments

How Stage 4 Appendix Cancer Transformed Erica’s Life

Erica R. stage 4B appendix cancer

How Stage 4B Appendix Cancer Transformed Erica’s Life

Erica’s story is one of resilience, self-discovery, and perspective shifts. When she was diagnosed with stage 4B appendix cancer in 2021, her life took a turn she never anticipated. Having moved to a different state during the peak of COVID-19 as a new single mom, she channeled her energy into rigorous workouts, juggling a new job she loved, and raising her two kids. Despite leading what appeared to be a healthy and active lifestyle, subtle signs, like fatigue, sharp pain in her side, and unusual early fullness while eating, were easy to dismiss.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Erica’s stage 4B appendix cancer diagnosis came unexpectedly, during what was supposed to be a routine hysterectomy. Waking up from anesthesia to hear the stunning statement, “We think you have cancer,” was surreal, a moment etched in her memory. Despite being asymptomatic for the most part, Erica’s intuition had nudged her toward surgery — an inner voice that, in hindsight, was a lifesaver.

Erica R. stage 4B appendix cancer

Navigating stage 4B appendix cancer hasn’t been easy. Erica underwent extensive treatments, including various surgeries, hyperthermic intraperitoneal chemotherapy (HIPEC), which involved administering chemotherapy directly into the abdominal cavity, and additional grueling rounds of chemotherapy. The side effects were intense; the fatigue was unlike anything she’d ever known — not just physical exhaustion but a deep, pervasive weariness. Yet, she persisted, returning to work after treatments, determined to reclaim normalcy. However, the cancer’s return was a harsh reminder that survivorship is complex.

Mental health has been a cornerstone of Erica’s experience. She’s transparent about the emotional toll: grappling with the fear of limited time, making tough decisions about her children’s future, and balancing hope with reality. Despite moments of feeling robbed of her spirit, she embraces the blessings cancer has brought, namely, the courage to say yes to new experiences, deeper self-reflection, and meaningful connections with loved ones.

Erica’s message is powerful: choices exist, even when it feels like they don’t. Changing her perspective has been transformative, finding joy in small victories and peace in acceptance. She encourages others to live fully, embrace vulnerability, and rest when needed. Her story isn’t just about battling stage 4B appendix cancer; it’s about living authentically, finding strength in unexpected places, and advocating for mental health awareness alongside rare cancer understanding.

Watch Erica’s video and learn more about:

  • How her intuition uncovered a rare cancer diagnosis.
  • How subtle and easily brushed-off signs led to a life-changing discovery.
  • The unexpected blessings Erica found through stage 4B appendix cancer.
  • What survivorship really looks like beyond the diagnosis.
  • Choosing joy: Erica’s journey of resilience and rare cancer awareness.
  • Name:
    • Erica R.
  • Age at Diagnosis:
    • 48
  • Diagnosis:
    • Appendix Cancer
  • Staging:
    • Stage 4B
  • Symptoms:
    • Bloating
    • Sharp pain in the side
    • Fatigue
    • Vomiting after one alcoholic drink
    • Early satiety (feeling full)
  • Treatments:
    • Surgeries: cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC)
    • Chemotherapy
Erica R. stage 4b appendix cancer
Erica R. stage 4b appendix cancer
Erica R. stage 4b appendix cancer
Erica R. stage 4b appendix cancer
Erica R. stage 4b appendix cancer

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Erica R. stage 4B appendix cancer
Thank you for sharing your story, Erica!

Inspired by Erica's story?

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More Appendix Cancer Stories

Lindsay B. feature profile

Lindsay B., LAMN Appendix Cancer



Symptom: Increasing urge to urinate

Treatments: Cytoreductive surgery (CRS), Hyperthermic Intraperitoneal Chemotherapy (HIPEC)

Faye L., Pseudomyxoma Peritonei (Rare Appendix Cancer)



Symptoms: Severe bloating, bad stomachache, elevated CA 125 and tumor markers

Treatments: Chemotherapy, surgery

Alli M., Appendix Cancer, Stage 4



Symptom: Severe abdominal pain

Treatments: Surgeries (right hemisphere colectomy, appendectomy, HIPEC), chemotherapy

Ariel M., Appendix Cancer, Stage 4, High-Grade



Symptom: Sharp pain with gas & bowel movements

Treatments: Surgery (radical hysterectomy), chemotherapy, PIPAC clinical trial (pressurized intraperitoneal aerosol chemotherapy)

Hannah R., Appendix Cancer, Stage 4



Symptoms: Bloating, fullness, UTIs, blood in urine, pain during intercourse, high blood pressure, spotting

Treatments: Surgery (appendectomy, cytoreductive surgery), chemotherapy, radiation (to treat recurrence)
Categories
Chemotherapy Hodgkin Lymphoma Patient Stories Radiation Therapy Treatments

Life After Remission: Laura’s Stage 4 Hodgkin Lymphoma Story

Laura P. stage 4 Hodgkin lymphoma

Life After Remission: Laura’s Stage 4 Hodgkin Lymphoma Story

When Laura first walked into her doctor’s office in 2017, she was just looking for relief from a stubborn cough. A quick prescription was all she expected. Instead, she was swept into a whirlwind of tests, appointments, and life-altering news. That cough turned out to be a sign of something far more serious: stage 4 Hodgkin lymphoma.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

At 40, Laura considered herself the epitome of health — a vegetarian, a yoga enthusiast, and someone who rarely visited the doctor. Hearing the word “cancer” was surreal, and the shock only deepened when she discovered it had spread to both her lungs. Initially misdiagnosed as lung cancer, the prospect of terminal illness terrified Laura. But after a lung biopsy and a mediastinoscopy, the doctors confirmed it was stage 4 Hodgkin lymphoma — which is treatable and potentially curable, even in its advanced stage.

Laura P. stage 4 Hodgkin Lymphoma

Navigating the medical world was like learning a new language. From meeting oncologists to enduring countless tests, Laura found herself juggling not just the disease but also the bureaucratic hurdles of insurance and the financial challenges of cancer. Imagine battling a $100,000 medical bill while undergoing cancer treatment like Laura did. Eventually, she won her insurance appeals, but these challenges highlighted the critical need for self-advocacy.

Treatment for stage 4 Hodgkin lymphoma was no picnic. Laura endured six months of chemotherapy followed by a month of radiation. She lost her hair — not just on her head but everywhere, a detail that surprised her. Fortunately, she wasn’t plagued by the nausea often depicted in media, likely thanks to effective anti-nausea meds. However, mouth sores and extreme fatigue became familiar companions.

Post-treatment life brought its own set of emotional and physical adjustments. While declared in remission in 2018, Laura grappled with the invisible scars left by stage 4 Hodgkin lymphoma. She described the strange void after her regular oncologist visits ended, likening it to new parents leaving the hospital with their first child — uncertain, overwhelmed, and without a manual.

Despite lingering side effects like neuropathy and the emotional weight of past battles, Laura’s outlook remains empowering. She’s passionate about survivorship and emphasizes that healing isn’t just physical. It’s about finding support, whether through online communities or fellow survivors. Laura’s advice? You’re not alone, and you’re definitely not your disease.

Watch Laura’s video to find out more about:

  • What started as a cough that later led to life-changing news.
  • Fighting a $100,000 medical bill while undergoing treatment.
  • Why post-cancer life isn’t ‘back to normal’ — she shares her unexpected challenges.
  • What Laura wishes she had known before chemo, and what she wants every patient to know.
  • Name:
    • Laura P.
  • Age at Diagnosis:
    • 40
  • Diagnosis:
    • Hodgkin Lymphoma
  • Staging:
    • Stage 4
  • Symptom:
    • Nagging cough
  • Treatments:
    • Chemotherapy
    • Radiation
Laura P. stage 4 Hodgkin Lymphoma
Laura P. stage 4 Hodgkin Lymphoma
Laura P. stage 4 Hodgkin Lymphoma
Laura P. stage 4 Hodgkin Lymphoma
Laura P. stage 4 Hodgkin Lymphoma

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

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

Laura P. stage 4 Hodgkin Lymphoma
Thank you for sharing your story, Laura!

Inspired by Laura's story?

Share your story, too!

More Metastatic Hodgkin Lymphoma Stories

Amanda P. Hodgkin lymphoma

Amanda P., Relapsed Hodgkin’s Lymphoma, Stage 4



Symptom: Sudden, unexplained weight loss

Treatments: Immunotherapy, chemotherapy, stem cell transplant (autologous)
...
Amanda P. Hodgkin lymphoma

Amanda P., Hodgkin’s Lymphoma, Stage 4



Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor
Treatments: Chemotherapy (A+AVD), Neulasta

...

CC W., Hodgkin’s Lymphoma, Stage 4



Symptoms: Achiness, extreme fatigue, reactive rash on chest & neck, chills, night sweats
Treatment: ABVD chemotherapy (6 cycles)
...
Amina V. stage 4B Hodgkin's lymphoma

Amina V., Hodgkin Lymphoma, Stage 4B



Symptoms: Severe fatigue, shortness of breath, night sweats, bloating and stomach distension after eating, abdominal pain, little to no appetite, high fever, lump in the pelvic area
Treatment: Chemotherapy
...

Lisa S., Nodular Sclerosis, Stage 4A



Symptom: Extreme lower back pain

Treatment: ABVD chemotherapy
...