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Mara Kofoed, 45, was diagnosed with ovarian cancer in December 2021 after months of trying to figure out vague and seemingly unrelated symptoms. She discovered that doctors were rejecting them all the time and not linking them to a tumor. It took a trip to the ER to finally get some answers. Kofoed, who lives in New York’s Hudson Valley, shared his story with TODAY.
It was the biggest shock of my life to learn that I had ovarian cancer. I would have suspected maybe breast cancer because my grandmother had it, but ovarian cancer was very, very misunderstood.
Women need more training on this. We know about breast cancer, but hardly anyone could spell out the symptoms of ovarian cancer – I couldn’t have spelled them out. There are all these minor little things, and it’s very difficult for people to put it all together. The doctor didn’t put it together either.
In 2017, I started feeling a little pain during sex. It was the first thing. Another early symptom was a slightly different feeling around my urethra. I thought, “It looks like a UTI, but it’s different.” I felt like something was pressing on my bladder.
There was also a change in my urination habits – I got up at night to pee, which was new and different for me. I was going to pee more frequently during the day, too.
I had a general fatigue without explanation. I also suffered from constipation.
In May 2021, I started noticing that my waist was thicker. I am very slim and thin normally so I just noticed a thickness around my belly. I was skinny in other places so it looked like I had put on some weight, but only below the ribs.
I’ve heard bloating is a symptom of ovarian cancer, but it’s such a vague symptom. I wasn’t even thinking about cancer. I didn’t quite know what to look for. The bloating occurs 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 caused by swallowing something. But people don’t relate that to ovaries, so it needs a different language. It is a thickened abdominal area that persists, later turning into a distended belly.
Related: Woman with ovarian cancer who urged others to know about symptoms dies at 43
I started having little pains in my ovaries — little pinches and twinges. I have also had a few episodes of extreme ovarian pain where I would bend over, grab the counter, tell my husband something was very wrong.
I saw the first gynecologist I was able to walk in with, it wasn’t until November 30, 2021. I told her about all the symptoms and my belly was very big, but it wasn’t like I going there saying, “I’m ready to get tested for ovarian cancer. I still had no idea what was wrong with me. I didn’t connect these things together, I didn’t know they were all connected.
He ignored almost all of the symptoms I mentioned, but focused on just one. He leaned back in his chair and said to me, “Women your age stop wanting sex and so they dry up. He was focusing on the pain part during sex.
He didn’t seem concerned about the size of my belly. I wanted to get a CT scan, but he said, “You don’t need a CT scan. I left that date completely traumatized because of what he said to me, how he ignored me and dismissed what I was saying. Her 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 emergency service near the freeway on a Friday night because I didn’t think I could make it 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 added pressure on every organ – so intense that I thought I might die. It was one of the most painful and scariest things I have ever experienced.
I told the nurse all my symptoms. She looked at my stomach and took it seriously. She knew right away it wasn’t normal and said, “You need to go to the ER tonight and get a CT scan.”
In the ER, doctors came back after the scan and said they had 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 which measured about 2 centimeters. Just a week and a half ago the doctor checked me out and missed this.
I had deflation surgery on December 28, 2021. They removed the ovaries, fallopian tubes, uterus, cervix, and omentum, which is a lining that holds everything together.
I also received six treatments with two chemotherapy drugs. Today I am doing very well. I took very good care of myself during the chemo treatments.
If I had waited a year for my next appointment, as the doctor’s office had advised, it would have meant death. I wouldn’t have lasted a year.
One of the most important things for women to watch is their thoughts. You say to yourself, “This is weird. This is not normal. I wonder what is this?”
The biggest message of all with this disease is this: if there is one symptom that persists, keeps coming back, or perhaps does not go away at all, that is very concerning.
This interview has been edited and condensed for clarity.
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