November 7, 2025

Seeing Beyond the Fear: Steven’s Fight Against Rare Eye (Lacrimal Gland) Cancer

When a small dark spot appeared in Steven’s vision in June 2024, it seemed like a minor eye issue. He saw an ophthalmologist, and went through the normal process to uncover what was going on in his eye. What he didn’t know was that the source lay in one of the smallest yet most vital structures of the eye—the lacrimal gland, responsible for producing tears. Further testing revealed something far more serious: a rare cancer called adenoid cystic carcinoma, originating from that tiny gland tucked above the outer corner of his eye.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Steven’s lacrimal gland cancer diagnosis unfolded gradually and culminated in surgery that revealed cancer rather than the expected benign cyst. While his initial shock was compounded by the rare and poorly documented nature of adenoid cystic carcinoma, Steven credits his support team, including his wife, children, and a neighbor oncologist, for helping him make sense of his treatment options. After consultations at MD Anderson and Mayo Clinic, he began an intensive six-week regimen of radiation and chemotherapy, chosen specifically for the cancer’s tendency to spread along nerves and resist standard treatments.

Throughout his treatment, Steven remained firmly committed to family life and self-advocacy. He emphasizes how critical his support team was in managing daily realities like side effects, exhaustion, and the ongoing fear associated with “scanxiety.” His story is marked by personal and professional transformation. When he completed treatment, he was relieved and proud and celebrated by ringing the clinic gong.

Steven now looks ahead to regular monitoring and a new chapter in oncology nursing, hoping his personal insight into adenoid cystic carcinoma will empower him to advocate more authentically for future patients. Ultimately, his lacrimal gland cancer experience highlights the power of hope, the importance of purposeful action, and the value of forming strong support networks.

Watch Steven’s video and read through the transcript of his interview further down to delve into:

How early self-advocacy can make a critical difference in rare cancer diagnosis and treatment
The importance of a strong support system in coping with both treatment and uncertainty
Steven’s transformation from patient to future oncology nurse, inspired by his own experience with lacrimal gland cancer
The distinct challenges of parenting during treatment, and how maintaining involvement and honesty with children fosters connection and healing
How being proactive and insisting on a thorough investigation led to timely and effective treatment for Steven

Name: Steven S.
Diagnosis:
- Lacrimal Gland Cancer (Adenoid Cystic Carcinoma of the Lacrimal Gland)
Age at Diagnosis:
- 36
Symptoms:
- Appearance of black spot in vision
- Drooping of affected eye
Treatments:
- Surgery: tumor excision
- Chemotherapy
- Radiation therapy

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 Steven’s Interview

My name is Steven
When I first noticed something was wrong
The day of surgery
The moment everything changed
Sharing my lacrimal gland cancer diagnosis with my family
Making treatment decisions: advice from my care team
My treatment plan
Side effects and coping with treatment
Finishing treatment: ringing the gong
Ongoing monitoring and genetic testing
The biggest challenge: the impact on family
Parenting during cancer treatment
Scanxiety: the anxiety of awaiting scan results
Survivorship and career aspirations
Taking the boards and job search after treatment
The meaning of hope: my advice to other cancer patients
My advice to others

My name is Steven

I was diagnosed in June of this year with adenoid cystic carcinoma originating from the lacrimal gland in the orbit of my eye.

I feel like I’m a family guy. I enjoy spending time with my kids, staying active, and my friends and family consider me a hard worker. My wife and I have three kids, ages 11, eight, and two. There is a significant age gap because our middle daughter has Down syndrome, and we didn’t expect to have more children, but we eventually decided to have one more.

I’ve always been an active person. I played baseball growing up, and now I play basketball in the mornings before work. I spend a lot of time with my kids, and recently, I decided to go back to school, which is something people usually do at a younger age.

When I first noticed something was wrong

About a year ago, in June 2024, I noticed a black spot in my peripheral vision. It was similar to pressing on your eye and seeing a spot on the opposite side. I called an ophthalmologist, who ran tests and told me they didn’t see anything. I had surgery for a clogged tear duct years before and thought it might be related, so I ignored it. The doctor told me to come back if symptoms continued, but I put it off.

After graduating from nursing school, I sent a selfie to my wife and noticed my eye looked lower. I typed my symptoms into ChatGPT, which advised me to seek care, so I went to the ER that Sunday. They performed a CT scan and MRI, finding a tumor, but initially thought it was a benign cyst. I was referred to an oculoplastic surgeon, who echoed the “benign cyst” theory, but the MRI indicated ACC could not be ruled out, though it’s rare. Surgery was scheduled.

The day of surgery

I went into surgery expecting a routine cyst removal. All the doctors reassured me it would be a straightforward procedure. After surgery, the nurse practitioner told me they found cancer and sent it for a biopsy. That was all I knew at first; I had to wait for the biopsy results to get a precise diagnosis.

The moment everything changed

When I first heard the diagnosis, I had never heard of this type of cancer. I immediately started researching and discovered that the tumor’s growth pattern has the biggest impact on survival rates. There are three types: solid (most invasive), cribriform (what I have, which is the most common), and tubular (least invasive). Reading about this was overwhelming, especially because there isn’t much data.

Sharing the diagnosis with my wife was the hardest part. She took it very hard. She was at work when I called her because I knew she wouldn’t want to wait for the news. She decided not to research anything until she was home. Telling our kids was simpler — they know I have cancer, but that’s as much as they understand. They’ve seen me doing treatments, and my wife has shown them videos and pictures.

Making treatment decisions: advice from my care team

I have a neighbor who is an oncologist, and he helped me understand my case. He explained that chemotherapy isn’t usually effective for this cancer, but my surgeons referred me to radiation oncology and for a PET scan. After consulting with other experts at centers like MD Anderson and Mayo Clinic, my neighbor told me about chemotherapy, which can help when combined with radiation. I opted for this approach.

My treatment plan

My treatments included 30 sessions of radiation over six weeks, with a mask fitted to ensure accuracy, plus chemotherapy. Radiation is necessary because the cancer can follow nerves in the area, making it hard to remove everything surgically. PET scans confirmed that the cancer has not spread.

Side effects and coping with treatment

My chemo drug is known for causing severe nausea, but I managed it without vomiting, just stomach upset. After eating certain foods, I’d feel so ill that I couldn’t eat them again. Radiation caused exhaustion and red skin around my eye; I applied Aquaphor to prevent skin breakdown. Radiation led to brow and patchy hair loss, but I stayed as active as possible, taking only two weeks off work at the end when I was most exhausted.

Finishing treatment: ringing the gong

I finished treatment at the beginning of September. It felt incredible to be done, and I got to ring the gong at the clinic. I also got to keep my radiation mask as a memento. Not having to go in for daily treatments and experiencing less exhaustion was a huge relief. Now, I’ll have a repeat MRI at the end of November after three months to check if the cancer has returned. For at least a year, monitoring will continue every three months.

Ongoing monitoring and genetic testing

The tumors in this type of cancer grow slowly but are persistent. Ongoing scans are necessary, as spread to the lungs or liver is common. They tested the tumor for treatment targets but did not find any. I have not done genetic testing yet. There’s little known cancer in my family history.

The biggest challenge: the impact on family

The hardest part of my diagnosis has been seeing its impact on others. My wife feels it the most. My kids, thankfully, don’t fully understand. My extended family is always concerned, asking about my health. The only way I cope is by doing everything possible — including opting for chemo — so I have no regrets later.

Parenting during cancer treatment

My wife is the real hero, taking care of everything while also working. Once the kids started school, it was easier for me to rest during the day. I made an effort to remain part of their lives, doing as much as possible with them, even when exhausted. Our daughter with Down syndrome has had health challenges this year, requiring visits to specialists, so balancing everything has been extremely tough.

Scanxiety: the anxiety of awaiting scan results

There’s a real fear before each scan, about whether signs of cancer will reappear, especially locally or if it has spread. Keeping the cancer local is critical, but if it’s still there, treatment options are limited. Some patients end up losing an eye.

Survivorship and career aspirations

I originally thought I would go into computers, but I realized I did not want to sit at a desk all day. At 36, I chose nursing school — a challenge, but a rewarding one. My clinical rotations in oncology have given me a new perspective, and I plan to continue helping others, whether in oncology or any medical setting. I am open to entering oncology nursing because my own diagnosis allows me to relate to what cancer patients go through, even if it’s not the same.

Taking the boards and job search after treatment

I’m scheduled to take the nursing boards next week. I’ve already applied for jobs, as you can apply before taking the exam if it’s soon. I don’t have healthcare experience besides school, which makes finding a job more difficult, but I plan to get my foot in the door and gain experience.

The meaning of hope: my advice to other cancer patients

To me, hope means believing that good things can happen. Without hope, there would be no point to treatment or enduring the difficulty. My message is that everyone has a purpose, and helping others brings meaning. If you’re going through a hardship, keep going. Find or build a support team — it can make all the difference. My family, especially my sisters with their fundraising, and my immediate family at home, have been my main source of hope.

My advice to others

Nursing school taught me that advocacy is crucial. Be an advocate for your patients — and for yourself. Make sure your concerns are heard, and do not let anyone ignore your symptoms. If I hadn’t insisted on more testing, I might have been sent home without the right intervention. Ensure you are getting the help and attention you need.

Thank you for sharing your story, Steven!

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