'I've Had Metastatic Pancreatic Cancer for 11 Years—Here's What It's Like Living With an Incurable Disease'

Elizabeth O'Connor was 31 when doctors diagnosed her with stage 4 pancreatic cancer. The diagnosis came just two weeks after having her second child.

Elizabeth O'Connor
Photo: Elizabeth O'Connor

The 2000s began with what seemed like a promising future. I married my husband, Patrick, in 2003. We enjoyed life by doing outdoorsy things, like camping and going to the mountains. In 2005, we got pregnant with our daughter. Two years after she was born, we moved to Woodstock, Georgia, where we made plenty of friends. Life was normal.

In February 2010, when I was 31, I became pregnant with my son. But halfway through my pregnancy, I started to feel super full, a sensation that made me feel as though my baby couldn't grow anymore. Because of that fullness, I couldn't eat. I was also having stomach pain, fatigue, and nausea, and I often had to throw up. This all gave me a lot of anxiety. I told my ob-gyn about it, and he ran an ultrasound to make sure everything was OK.

The scan showed that I had large cysts on my ovaries. To keep an eye on them, I had an ultrasound every two weeks. But my symptoms continued to worsen. I lost a lot of weight, and my anxiety from worrying about the health of my baby became more extreme.

On October 18, I had a bi-weekly ultrasound checkup. I told my ob-gyn how I was feeling—and that I was barely eating and the baby wasn't moving around much—and he determined I wasn't getting enough nutrients. So I went to the hospital to receive fluids. While at the hospital, I wound up going into labor. My C-section wasn't scheduled until November 22, but my baby was coming six weeks early.

After his October 20 birth, my baby went into the neonatal intensive care unit. Thankfully he was healthy, but his lungs still needed to develop. I was in the ICU because fluidin my abdomen and lungs needed to be drained. No one was sure why the fluid was there.

Several hours after I had given birth, my ob-gyn came in to tell my husband and me that my ovaries looked "very angry," as he put it. "If I were you, and if you were my wife, I would suggest you have a hysterectomy to remove the ovaries," he told me. I was disappointed. I had always wanted three kids but knew once I had a hysterectomy, we could not have any more children, at least not biologically.

But at that point, I was trying to survive; I was in the ICU with mysterious fluid and unable to eat or drink anything. Also, I'd yet to even hold my newborn son. So two days after giving birth, I had a hysterectomy to remove my uterus and ovaries. The ovaries were sent to get biopsied.

In the meantime, my fluid drained out. I was given the OK to go home, and my son came home a couple days after me. Our family of four was finally all home, together. Cancer was nowhere on my radar.

This was not supposed to happen to a 31 year old

The morning after my son came home from the hospital, I woke up early to feed him. That's when I noticed that my left arm was swollen and hot to the touch. I was already going to the doctor that day for a colonoscopy and endoscopy; we were trying to get to the bottom of all my symptoms and see if they had anything to do with my digestive tract. So I showed thegastroenterologist what was going on with my arm when I got there. Her thought? A blood clot.

She called my ob-gyn to let him know; he ordered an ultrasound for my left arm. The scan showed that I did in fact have a blood clot. So here I was, in the hospital, having my endoscopy and colonoscopy—both of which came back normal—while resolving the blood clot. I was at the point where I asked my ob-gyn, "What do you think is going on? Is it cancer?" Given all my symptoms—from my weight loss during pregnancy to my fluid after labor to this blood clot—he thought it was a possibility. He just didn't know where the cancer would be.

On November 5, we found out that I did in fact have cancer: stage 4 pancreatic cancer. But it wasn't a test of my pancreas itself that led to the diagnosis. The biopsy of my ovaries came back positive for metastatic pancreas cancer. The cancer had spread from my pancreas to my ovaries, which explained my "angry" ovaries during pregnancy. A CT scan then showed a mass on my pancreas and, paired with the biopsy results, made my diagnosis certain.

In that moment, I was shocked and fearful. I was 31. This was just not supposed to happen at my age; I thought only older people got pancreatic cancer. A later genetic test would reveal that I had a genetic mutation, called the PALB2 mutation, for pancreatic cancer. My dad was later tested for it, and turns out that he also has the mutation. My kids will be tested for the mutation down the line, as well.

I also felt numb, sad, and doomed. We had the perfect little family—my daughter was 5 years old, my son was less than a month old. Am I going to see my son at 6 months? Am I going to see my daughter go off to kindergarten? I wondered. It was a time of such uncertainty.

After the initial surprise of the diagnosis wore off, I actually felt a sense of relief finding out what was wrong. I had been dealing with symptoms for several months, and I was grateful to find out what I was fighting. And I was ready to fight.

'I certainly can't give you a timeline'

I was told I could never have surgery to remove the tumor because it had metastasized and was intertwined with major arteries. But my oncologist gave me hope anyway. He started me on chemotherapy a few weeks after my diagnosis, around Thanksgiving. My biggest fear was a doctor putting a timeline on it, like, you only have 6 months to live. But he didn't. "I certainly can't give you a timeline," he told me. That's what I wanted to hear. I had belief in him and myself, and I was ready to get through it.

However ready I was to fight this disease, I also wanted to make sure to keep things as normal as possible for my two young children. Treatment days were rough—chemo knocks you out. But on the days that weren't as bad, we tried to do special things as a family. Life is actually so much sweeter when you have a lethal illness because you take it day by day.

Still, looking back, I realize that I missed out on a lot of my son's first two years because I was fighting for my life. My mom quit the job she loved and came to live with us to help with the kids, becoming my son's main caretaker. I'll be eternally grateful to her for doing that. It does make me sad, though, that I didn't get the experience with my son as I had with my daughter when she was a baby. But because my daughter was five when all this started, I wanted to make sure her world was not any more rocked than it already was by having a new baby brother. That meant that I played with her, took her and picked her up from pre-school, and did things like get ice cream with her even if I didn't feel well.

Besides my mom and husband, I also had my dad, brother, other family members, as well as friends who acted as my big support system. They would bring meals, sit with me, let me cry. They kept on saying, "We're going to get through this," and showed up when times got difficult. That meant a lot to me.

Elizabeth O'Connor
Elizabeth O'Connor

My oncologist soon referred me to a pancreatic cancer specialist in Arizona. My first visit with him was in the summer of 2011. Over time, the scans that I had to get every three months continued to look better, with the tumor in my pancreas shrinking. The cancer had also already spread to my iliac bone, which is the top, winged portion of your pelvis. But targeted chemotherapy kept it from progressing, scans showed.

Even though the chemo was working, it was certainly making my role as a mother harder. I had limited availability when it came to my kids. From the day I'd get chemo and through the four to five days after, I would stay in bed because of how unwell the treatment made me feel; my kids would come in and see me or watch TV with me.

After seeing how successful the chemo was, the pancreatic cancer specialist recommended I see a doctor in Wisconsin who was well-known for pancreatic surgery. That trip was in December 2011, and the surgeon told me he thought he'd be able to do the procedure. But before the surgery, he wanted radiation on the pancreas and the iliac bone. The radiation was in February 2012; my surgery to remove the tumor in my pancreas was the next month.

We brought my kids to that surgery. Since the beginning, we've been very open with them about me having cancer. And through the years, even now in their pre-teen and teens years, they treasure every minute they have with their dad and me. A lot of times, we'll just go for a ride in our town. We love being with each other and try to do as many things together as we can.

The cancer continues to metastasize

After my pancreatic surgery, I had chemotherapy with scans every three months. In 2014, doctors noticed a spot on my left lung and did a biopsy. It was pancreatic cancer. I had to have part of my left lung removed in July of that year.

In the meantime, in May 2014, I started having seizures. I didn't know what was happening, and neither did my doctors; they actually thought it was just back spasms. But the episodes continually got worse. I knew this wasn't normal, and I told doctors that. A scan revealed a tumor in the left part of my brain. They sent me to a world-renowned brain surgeon who removed the tumor in November of that year. A biopsy revealed that it too was pancreatic cancer that had metastasized. I endured a week of radiation to the brainto get any remaining cancer cells.

Everything was pretty good until July 2018, when I had a reoccurrence in my brain. That meant another week of radiation.

Elizabeth O'Connor
Elizabeth O'Connor

For a time, things stayed pretty stable, with no evidence of progression. But in May 2020, I had a seizure. The radiation oncologist did an MRI and saw what appeared to be inflammation on the brain. They sent me home with steroids and said that if the medicine didn't decrease the inflammation, it could be something worse, like cancer. The steroids didn't help, and I was back to chemo.

Out of this entire experience, I'd say the cancer affecting the brain has been the most difficult and devastating aspect. I just can't think as clearly. The surgery to remove the cancer from my brain even affected a nerve that's left me with a drop foot, meaning I'm unable to properly lift my foot. The physical limitations from the brain surgery, as well as the multiple radiation treatments, mean that I can't do certain activities with my kids. Thankfully I have friends to step in, and that's been the case all along. When I was unable to take my kids somewhere, my friends would do it for me. And my kids are very understanding that I can't do everything other moms can do.

A little later in the same month of my brain surgery, I fell and hit my head. For days after, I had a lot of head pain, and it just wouldn't go away no matter how much Advil I took. A biopsy of my scalp showed that the pain was not from my fall but from cancer—my pancreatic cancer had made the rare move to my scalp. The cancer was removed in October 2020, and I had radiation to my scalp in December 2020.

I continued on with chemo until January 2021. Then my oncologists told me about an immunotherapy treatment that had been tested in patients with the same genetic mutation I carried. Those patients had responded well to it, and my doctors wondered if it would work for me too.

Sure enough, it did. Every three months I do a CT scan of my chest, abdomen, and pelvis. Every four months I have an MRI of my brain. Since then, my scans have been clear, with no evidence of disease. The medicine also doesn't cause any side effects—I can get the infusion and then go about my day. I call immunotherapy my miracle worker.

Elizabeth O'Connor
Elizabeth O'Connor

Refuse to give up

I'm now 42, which means I've been living with pancreatic cancer for 11 years. I know I'm a rare exception. The five-year survival rate for someone whose pancreatic cancer has spread to other organs is 3%. (I'm also a rare exception for being diagnosed with it in the first place—the average age of diagnosis for pancreatic cancer is 70 years.)

I'm grateful that my treatments have helped me to beat those odds. The targeted chemotherapy that worked well enough for me to have my surgery and radiation, as well as the immunotherapy that I started this year, are both thanks to research supported by funds raised by the charitable program Stand Up To Cancer.

Linking up with them was a great decision, and that would be my advice for anyone else who might be struggling with a serious diagnosis. Find an organization that can be a good resource for inspirational stories and groundbreaking research. I've been given more time with my family as a result of the cutting-edge treatments that Stand Up To Cancer helped get off the ground.

Besides discovering resources that can aid you in your journey, I'd also suggest finding a team of doctors that collaborate. Have a large support system. Refuse to give up; never lose hope. You're going to have your down days, but you don't stay there. I'm proof of that.

Moving forward, I'll continue with my routine scans. So will my dad, since he has the PALB2 genetic mutation. He gets scanned once a year to see if there is anything suspicious on his pancreas. Thankfully there hasn't been. When they get older, I will have my children tested for the mutation, as well. I pray that neither of them has it, but if one or both of them do, it would be the same yearly scan that my dad undergoes. But with research, who knows what advances they are making with genetic testing and early detection.

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