Mara Kofoed, 45, was diagnosed ovarian cancer in December 2021 after months of searching for vague and seemingly unrelated symptoms. She found that doctors turned them away at every turn and didn’t link 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 I had ovarian cancer. I might have suspected breast cancer because my grandmother had it, but ovarian cancer was very much off the radar.
Women need to be trained more in this. We know about breast cancer, but hardly anyone could see the symptoms of ovarian cancer — I couldn’t have scared them off. There’s all these little, little things, and it’s very hard for people to put it all together. The doctor couldn’t figure it out either.
In 2017 I started to feel a little pain during sex. That was the earliest. Another early symptom was a bit of a different feeling 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 got up at night to pee, which was new and different to me. I also peed more often during the day.
I had general fatigue with no explanation. I also suffered from constipation.
In May 2021 I noticed that my waist was thicker. I am normally very thin and slender so I just noticed a thickness around my stomach. I was skinny in other areas, so I seemed to have gained a little weight, but only below the ribs.
I’ve heard bloating is a symptom of ovarian cancer, but it’s such a vague symptom. I still didn’t even think about cancer. I didn’t know enough what to look out for. The bloating occurs because the tumors are growing and there is fluid around them, a condition that ascites†
Bloating is a very misleading way to describe it. We think of bloating as gas that comes from eating something. But people don’t connect that to the ovaries, so it needs a different language. It is a thickened abdominal area that is stubborn and later develops into a distended abdomen.
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I started to get little aches in the ovaries – little pinches and stings. I also had a few episodes of extreme ovarian pain where I would lean over, grab the counter and tell my husband something was very wrong.
I saw the first gynecologist I could turn to, and that wasn’t until November 30, 2021. I told him about all the symptoms and my belly was really big, but it wasn’t like I went in and said, “I’m ready to to be checked for ovarian cancer.” I still had no idea what was going on with me, I wasn’t stringing these things together, I didn’t know they were all related.
He ignored almost all the symptoms I mentioned, but focused on one. He leaned back in his chair and said to me, “Women your age don’t want sex anymore and so they get dry.” He focused on the pain during sex part.
He didn’t seem concerned about my waist size. I wanted to have 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 rejected what I said. His office mailed me a document saying that 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 highway emergency room on a Friday night thinking I wouldn’t make it through the weekend. The distended abdomen was so extreme that it severely affected my walking, breathing, eating, drinking, sleeping, sitting and going to the bathroom. It put pressure on every organ – so intense I thought I was going to die. It was one of the most painful and scary things I’ve ever experienced.
I told the nurse all my symptoms. She looked at my stomach and took it seriously. She knew right away that this wasn’t normal and said, “You need to go to the emergency room tonight for a CT scan.”
Doctors returned to the emergency room after the scan and said they had found a mass. I immediately had to see an oncologist.
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 about 2 centimeters. Just a week and a half earlier, the doctor had examined me and missed that.
I underwent a debulking surgery on December 28, 2021. They took out the ovaries, fallopian tubes, uterus, cervix, and omentum, a lining that holds everything together.
I also received six treatments with two chemotherapy drugs. Today I am doing very well. I took good care of myself during chemotherapy.
If I had waited a year for my next appointment, as the doctor’s office advised, it would have meant death. I wouldn’t have lasted a year.
One of the most important things women should look at is their thoughts. Are you saying to yourself, “This is weird. This isn’t normal. I wonder what this is?”
The main message of this disease is: if there’s a symptom that persists, keeps coming back, or may not go away at all, that’s very worrying.
This interview has been edited and abbreviated for clarity.