Mara Kofoed, 45, was diagnosed with ovarian cancer in December 2021 after months trying to figure out vague and seemingly unrelated symptoms. She found doctors dismissed them at every turn and didn’t connect them to a tumor. It took a visit to an emergency room to finally get answers. Kofoed, who lives in Hudson Valley, New York, shared her story with TODAY.
It was the biggest shock of my life to find out that I had ovarian cancer. I would have suspected maybe breast cancer because my grandmother had it, but ovarian cancer was very, very off the radar.
Women need to be trained on this more. We know about breast cancer, but almost no one could rattle off the symptoms of ovarian cancer — I couldn’t have rattled them off. There are all these minor, little things, and it’s very hard for people to put it all together. The doctor wasn’t putting it together either.
In 2017, I started feeling a little pain during sex. That was the earliest thing. Another early symptom was a little bit of a different sensation around my urethra. I thought, “It feels like a UTI, but it’s different.” It felt like something was pressing on my bladder.
There was also a change in my urination patterns — I was getting up in the night to go pee, which was new and different for me. I was going to pee more frequently during the day, too.
I had general fatigue without an explanation. I also suffered from constipation.
In May of 2021, I started noticing my waist was thicker. I’m very thin and slender normally, so I just noticed a thickness around my belly. I was skinny in other areas, so it looked like I had gained a little bit of weight, but only below the ribs.
I did hear that bloating was a symptom of ovarian cancer, but it’s such a vague symptom. I still wasn’t even thinking cancer. I didn’t know enough about what to look for. The bloating is happening because the tumors are growing and there is fluid surrounding them, a condition called ascites.
Bloating is a very misleading way to describe it. We think of bloating as gas that’s from eating something. But people don’t connect that to the ovaries, so it needs a different language. It’s a thickened abdomen area that’s persistent, later growing into a distended belly.
Related: Woman with ovarian cancer who urged others to know symptoms dies at 43
I started having little pains in the ovaries — little pinches and twinges. I also had a couple of episodes with extreme ovarian pain where I was leaning over, grabbing the countertop, telling my husband something is very wrong.
I saw the first gynecologist I could get in with, which wasn’t until November 30, 2021. I told him about all of the symptoms and my belly was very large, but it wasn’t like I went in there going, “I’m ready to get checked for ovarian cancer.” I still had no idea what was wrong with me. I wasn’t stringing these things together, I didn’t know they were all related.
He ignored almost all of the symptoms that I mentioned, but focused on one. He leaned back in his chair and said to me, “Women your age stop wanting sex and so they get dry.” He was focusing on the pain-during-sex part.
He didn’t seem concerned about my belly size. I wanted to get a scan, but he said, “You don’t need a scan.” I left that appointment completely traumatized because of what he said to me, how he ignored me and dismissed what I was saying. His office sent me a document in the mail that said the Pap test was clear and “We’ll see you in a year.”
A week and a half after that appointment, on December 10, I went to a local urgent care off the highway on a Friday night because I didn’t think I could get through the weekend. The distended belly was so extreme that it severely affected my walking, breathing, eating, drinking, sleeping, sitting and going to the bathroom. It was adding pressure to every organ — so intense, I thought I might die. It was one of the most painful and scary things I’ve ever experienced.
I told the nurse all of my symptoms. She looked at my belly and took it seriously. She knew right away this was not normal and said, “You need to go to the ER tonight and get a CT scan.”
At the ER, doctors came back in after the scan and said they found a mass. I needed to see an oncologist immediately.
It turned out to be stage 3C ovarian cancer. Each ovary had a tumor — 12 centimeters on one side, 6.5 centimeters on the other. There were two smaller tumors on the rectum and bladder that were about 2 centimeters. Just a week and a half earlier, the doctor examined me and missed that.
I underwent a debulking surgery on December 28th, 2021. They took out the ovaries, tubes, uterus, cervix and omentum, which is a lining that holds everything together.
I also received six treatments with two chemotherapy drugs. Today, I’m doing very well. I took very good care of myself during chemo treatments.
If I had waited a year for my next appointment, as that doctor’s office advised, it would have meant death. I wouldn’t have lasted a year.
One of the most important things for women to look at is their thoughts. Are you saying to yourself: “This is weird. This isn’t normal. I wonder what this is?”
The biggest messages of all with this disease is: If there is a symptom that is persistent, that keeps coming back or maybe it doesn’t go away at all, that is very concerning.
This interview was edited and condensed for clarity.
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