Advocating for Yourself: Kacie’s Experience with Ovarian Cancer (Stage 3 Low-Grade Serous Ovarian Carcinoma)
Kacie was diagnosed with ovarian cancer (stage 3 low-grade serous ovarian carcinoma) just after her 30th birthday. But her experience began years before with persistent, misdiagnosed symptoms, including painful periods and pelvic pain, that were repeatedly attributed to endometriosis. It was only after a 14-cm pelvic mass was discovered that she learned that her symptoms were really due to an uncommon, aggressive form of ovarian cancer.
Interviewed by: Taylor Scheib
Edited by: Chris Sanchez
Support from her wife, Hayley, and family helped Kacie through the daunting series of treatments. Surgery brought both physical and emotional loss: the ovarian cancer had spread, resulting in a full hysterectomy and a devastating blow to her hopes of carrying a child. Post-surgical hurdles included bowel blockages, an ostomy, and a long, difficult recovery. Kacie’s resilience never faltered, though; she drew strength from her passions, especially photography, and documented this raw chapter in striking “rock the bald” portraits that would ultimately empower and encourage others facing similar diagnoses.

Kacie’s experience with chemotherapy and an ostomy came with unexpected challenges. She found chemotherapy less punishing than surgery, but adapting to life with an ostomy took time and self-compassion. As she healed, Kacie and Hayley pursued IVF and embraced a new vision of family. Connection with both Hayley and her grandmother, who would later undergo an ostomy herself, became a source of mutual healing and understanding.
Although her scans are now clear, the knowledge of a high recurrence rate, especially after a tumor rupture, lurks at the edges of each new day. Still, Kacie remains hopeful and honest. Through social media, she provides rare insight, advocacy, and practical guidance for others affected by low-grade serous ovarian cancer. Her story highlights the importance of self-advocacy and community.
Watch Kacie’s video and scroll down for her interview transcript. You’ll learn more about how:
- Fertility challenges and loss may arise, but new paths to parenthood, like IVF, can bring hope and connection
- Adjusting to life with an ostomy takes patience and experimentation, and sharing personal experiences can help others adjust
- Joy and hope can coexist with fear of recurrence. Living authentically and embracing support is vital for long-term healing
- Kacie transformed her most vulnerable moments into empowerment, helping both herself and others
- No one should undertake the patient experience alone; support networks and openness are powerful tools
- Name: Kacie K.
- Diagnosis:
- Ovarian Cancer (Low-Grade Serous Ovarian Carcinoma)
- Age at Diagnosis:
- 30
- Staging:
- Stage 3
- Symptoms:
- Pelvic pain
- Sharp pains during menstrual periods
- Inability to urinate normally
- Bleeding
- Treatments:
- Surgeries: full hysterectomy, ostomy surgery, ostomy reversal surgery
- Chemotherapy
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.
- My name is Kacie
- Life before diagnosis: my family, work, and passions
- My early symptoms were misdiagnosed
- The moment everything changed
- Coping with fertility loss and IVF hope
- Chemotherapy and adjusting to an ostomy
- Living with the fear of recurrence
- Navigating marriage and my mental health
- Ostomy reversal and helping others
- My social media advocacy
- What I want people to know
My name is Kacie
I was diagnosed with stage 3 low-grade ovarian cancer. It’s a very rare cancer. I was diagnosed when I was 30 years old in December 2024.
Life before diagnosis: my family, work, and passions
When I’m not working, I travel to see my family and friends in Chicago and Michigan. My dad passed away from cancer a couple of years ago, so going home can be tough. But I recently got married; my wife Hayley and I were married last year. Her family has surrounded me with so much love during this whole experience. My mom has been able to visit a few times, but it’s not quite the same. I’m so grateful for them.
I enjoy photography, mostly weddings and engagements. Right after my clear scan, I even shot a wedding after chemo. I was weaker, but I did it, and it felt amazing. I also love cooking for my wife and exploring the outdoors. We recently hiked the Grand Canyon.
We just love little adventures together. That’s what makes me happy.
I did a photo shoot to “rock the bald.” Some shots included scarves and wigs, but that plain one was my favorite.
It was important for me to document that time. A photographer friend invited me to her favorite studio. We just had fun with it, and I wanted something to look back on. I knew I’d never look like that again, so why not show it to the world?
When I got the photos back, I was in love. She captured them beautifully. Fun, candid moments and even the bald ones looked powerful. But sharing them publicly was scary at first. It’s a little bit exposing myself to social media, like fully bald for the first time, which is a scary thing to do.
My early symptoms were misdiagnosed
I had symptoms for years; really painful periods, severe pain during sex, and stabbing pelvic pain. At 21, my doctor told me it was probably endometriosis. For years afterward, I believed that and blamed every new symptom on “my stupid endometriosis.”
Then I developed urinary problems. I had to press on my pelvis to pee. During our honeymoon, it got worse. By December, my gynecologist couldn’t even do a Pap smear because of a large mass. She comforted me, saying, “You’re not crazy.”
An ultrasound showed a 14 cm pelvic mass. MRI scans couldn’t tell what it was connected to; maybe GI or ovarian. I was referred to a gynecologic oncologist who said I’d need surgery, but wasn’t sure which specialty needed to operate. Eventually, a colorectal surgeon joined the team.
I met them on my 30th birthday. The surgeon said I’d need major surgery with about two months of recovery time. The wait for surgery was long, and my symptoms got worse — urinary retention, bleeding, and pain.
I had to be such an advocate for myself because my symptoms were getting worse each day.
The moment everything changed
Days before surgery, I told my doctor it was really important to try to save my ovaries. I wanted to carry a child someday. She promised to try but couldn’t guarantee anything.
Surgery lasted eight hours. An hour and a half in, my wife got the call: “It’s definitely cancer.” They had to do a full hysterectomy because the cancer had spread through my pelvis and abdomen.
I woke up to everyone crying, but I didn’t yet know why. A nurse accidentally mentioned I’d had a hysterectomy, and my mom confirmed over the phone. I was in shock, but more sad about the hysterectomy.
The tumor had ruptured during surgery, spreading cancer cells. I spent 10 days in the hospital with complications like bowel blockage, an NG tube, and fainting during tests.
I didn’t eat for 12 days. It was the worst pain of my life.
Coping with fertility loss and IVF hope
Hayley and I decided to move forward with IVF. She offered to carry our child. We’re using my sister’s donor’s sperm, connecting both sides of our family.
I feel so connected — even though it’s not genetically my child, it still links our families.
We’re currently doing IVF treatments and preparing for a transfer soon.
Chemotherapy and adjusting to an ostomy
Once I healed, I started six rounds of chemo every three weeks. Chemo was easier than surgery. Chemo was more of a breeze for me because surgery was the worst pain I’ve ever felt.
After my second chemo, I developed a mysterious allergic reaction and spent five days in the hospital.
The toughest part was adjusting to my ostomy. I cried often trying to change it. My skin was raw, and I had to experiment with supplies. Eventually, I found what worked.
When my July scan came back clear, I sobbed with relief. Still, low-grade ovarian cancer carries a 70% chance of recurrence, especially since my tumor ruptured.
You’re filled with relief after a clear scan, but the fear of recurrence never fully disappears.
Living with the fear of recurrence
I get scans every six months, but I’m already feeling symptoms again. It’s hard not to wonder.
I stay busy, but sometimes fear creeps in. A friend’s cancer returned soon after chemo, and she couldn’t be treated. “That’s my worst fear.” Still, I stay outwardly positive, not fake; just hopeful.
I’m not faking it. Some people don’t know the tough stuff. They just see what I show on social media.
Navigating marriage and my mental health
We got married right before all this, and it changed everything. But I stay focused on positivity; our house, our dream of having kids, hiking, and traveling.
I see us making friends with the neighbors, traveling with my flight benefits, and raising kids. I’m not negative all the time; just real.
When dark thoughts come, Hayley gets me outside to hike or enjoy the sunshine. Being outdoors brings peace. I haven’t felt this much joy in a long time.
Ostomy reversal and helping others
I recently had my ostomy reversed and healed quickly. I was only in the hospital for two days. It felt incredible to no longer have the bag.
I’ve shared ostomy videos on TikTok — how to change it, which supplies helped. After my reversal, my grandmother got an ostomy, and I was able to help her.
That was full-circle. I could help her the way I wished someone had helped me.
My social media advocacy
I share my diagnosis on Instagram and TikTok because low-grade ovarian cancer is rare. When I was diagnosed, I searched for people like me online. I want to be that person for someone else.
I posted a lot during chemo, but less now. Hayley keeps telling me to post more, but I’m figuring out how to share again.
I want to use my story to educate and connect with others facing the same rare cancer.
What I want people to know
If you take one thing from my story, it’s this:
Take things day by day. Don’t get overwhelmed by the big picture. Focus on what you can do today.
And if you’re going through chemo, don’t feel bad about doing nothing, because your body literally can’t.

Inspired by Kacie's story?
Share your story, too!
More Low-Grade Serous Ovarian Cancer Stories
Maurissa M., Low-Grade Serous Ovarian Cancer
Symptoms: Pressure on bladder, throbbing pain, could feel growth on right side of abdominal area
Treatments: 5 surgeries (official diagnosis after 3rd)
...
Alisa M., Low-Grade Serous Ovarian Cancer
Symptoms: Occasional rectal pain, acid reflux, bloating, night sweats
Treatments: Debulking surgeries, chemotherapy, immunotherapy
...
Cheyann S., Low-Grade Serous Ovarian Cancer, Stage 4B
Symptoms: Stomach pain, constipation, lump on the right side above pubic area
Treatments: Cancer debulking surgery, chemotherapy (carboplatin & Taxol, then Doxil & Avastin)
...
Kacie K., Low-Grade Serous Ovarian Cancer, Stage 3
Symptoms: Pelvic pain, sharp pains during menstrual periods, Inability to urinate normally, bleeding
Treatments: Surgeries (full hysterectomy, ostomy surgery, ostomy reversal surgery), chemotherapy
...
















































