When Kaylan Wilhelm’s home pregnancy test came back positive, she went to the doctor to confirm it immediately. But she learned disturbing and confusing news. Wilhelm was not pregnant – she had a rare cancer that causes positive pregnancy tests.
“I felt alone when I went through this because it’s such a rare situation,” Wilhelm, 27, of Ravenna, Ohio, told TODAY. “If someone going through cancer is dealing with the mental battle, or someone is dealing with a blood clot or something like that, I want them to know they’re not alone. “Positive pregnancy test with an unexpected result
After missing her period, Wilhelm took a positive pregnancy test and visited the doctor. Her previous pregnancy was high risk and she wanted to seek treatment immediately.
“They said, ‘Okay, that’s positive. Come back in a few days,” she recalled. “I was going every two or three days to the doctor for blood tests and (my pregnancy hormone) was rising. But then it started to triple and quadruple. “
When Wilhelm’s human chorionic gonadotropin (HCG) levels, aka pregnancy hormones, indicated she was five weeks pregnant, doctors performed an ultrasound to see if she was more advanced. But they didn’t find a baby.
“There was an empty bag,” she said. “They said to come back and about two weeks. So I waited for a while, but I started bleeding, really, really badly.
She went to the emergency room where she underwent another ultrasound. Again, they found no babies.
“My uterus was filled with what looked like grapes,” she said.
Doctors in the emergency department recommended she see her OB-GYN and she then underwent dilation and curettage (D&C), a procedure in which a doctor removes the lining of the uterus. But she didn’t get better and started having big blood clots.
“I did the D&C. The bleeding, the clots always come. They’re about the size of the palm of my hand,” Wilhelm said. “It was horrible.”
It was then that she was referred to Dr. Roberto Vargas, a gynecological oncologist at the Cleveland Clinic, who at the time worked at the Cleveland Clinic Akron General.
“I was still passing a lot of clots. They did another ultrasound. My uterus was filled with even more of what looks like grapes and so we did another D&C,” Wilhelm said. “When they did that one, Dr. Vargas said, ‘Look, we’re going to send him in for testing to see exactly what’s going on. “”
The response was shocking – Wilhelm had stage 1 gestational trophoblastic disease, a type of cancer that occurs after an abnormal pregnancy like a molar pregnancy. It causes high levels of HGC, which causes positive pregnancy tests and makes someone look pregnant.
“Honestly, I just cried, like it couldn’t be true,” she said. “Even though I wasn’t trying to get pregnant, I just wanted to have another baby.”
Gestational trophoblastic disease
Molar pregnancies, which account for less than 1% of pregnancies according to the March of Dimes, never result in a baby.
“The placenta itself – for all intents and purposes – has gone into overdrive and it’s plunging and growing rapidly on its own, and then that placenta can invade and grow into the uterus,” Vargas told TODAY. “Even though they’re called pregnancies because there’s an egg and a sperm, they’re not going to develop into a fetus like they would in a normal pregnancy.”
In some cases, one sperm fertilizes an egg that has no genetic information, or in others, two sperm fertilize an egg with maternal genes, but the sperm’s DNA duplicates inside.
“The placenta is really what goes into overload and replicates and divides on its own,” Varga said.
In many cases, a D&C removing the remaining tissue stops the bleeding and the person’s health improves. But in some cases, the tissue remains and continues to grow.
“Once a molar pregnancy moves into the realm of cancer and can metastasize and enter other tissues, we actually call it gestational trophoblastic neoplasia,” Vargas said.
Vargas said he performed a second D&C on Wilhelm because in 40% of cases a “repeated D&C can save people from chemotherapy”.
“But Kaylan landed on the other side of the coin and his HCGs were unresponsive,” Vargas said. “She had to undergo further treatment.”
Wilhelm underwent chemotherapy. While the first chemotherapy treatment initially lowered her HCG levels, she stopped responding and they had to switch her to another chemotherapy drug. While she was receiving the second treatment, the chemotherapy drug seeped into her tissues instead of entering her vein and she developed an open wound on her arm.
“It literally burned me from the inside out,” Wilhelm said. “My oncologist told me, ‘It’s a rare complication that we see.'”
She had to take a break from chemotherapy to get her injury treated and given port to continue treatment.
“It was awful,” she said. “I have a really nasty scar though. It will never go away. I guess it’s one of my battle wounds.
After her HCG levels returned to zero, she underwent a few more rounds of chemotherapy as a “precaution”.
“I was unhappy. I was sick. I didn’t want to do it, but they convinced me,” she said. “My son helped me a lot.”
For the next year, Vargas and her doctors wanted to test her HCG levels to make sure she didn’t have cancer. However, there is good news with this type of cancer.
“We can still cure it quite frequently,” Vargas said. “Without treatment, it can also be fatal.”
A complicated recovery
Shortly after completing chemotherapy, Wilhelm got up and immediately passed out. She felt weak and could not eat or drink anything. At first she thought she was dehydrated and needed fluids, so she went to the ER. But the doctors did not let her go because her health was precarious.
“I had eight blood clots in both lungs and the biggest one in my left lung was getting ready to enter my main artery,” she said. “It could have caused a fatal heart attack.”
Doctors gave Wilhelm blood thinners intravenously. Sometimes she felt so overwhelmed by her experiences.
“The chemo seeping into my vein was a rare side effect,” she said. “The blood clot was another rare problem. We still don’t know, to this day, exactly what caused it. I just had a rare cancer for someone my age.
Vargas had recommended that Wilhelm take birth control. They track cancer recurrence through HCG levels and pregnancy changes that. But doctors didn’t want her on birth control because of the risk of blood clots.
“That’s when our discussions turned into Dr. Dad mode,” Vargas said. “I was like, ‘You absolutely can’t get pregnant.'”
Wilhelm became pregnant and Vargas felt worried.
“We don’t know if it’s the chicken or the egg. We don’t know if the cancer is back or if it’s a pregnancy or if we have both – we have a normal pregnancy and cancer,” he said. “It can happen…it’s incredibly rare.”
Additionally, research indicates that people who have a molar pregnancy and receive chemotherapy are at a greater risk of having a stillbirth.
“She also had a blood clot which was relatively recent and she also had a fairly severe lung condition,” Vargas said. “She had many reasons that made her pregnancy more risky. One concern was that the cancer was back and we were going to miss it.
But she gave birth to a healthy baby boy, Ja’Shon Moss, who was joined by his older brother, Donivan Wilhelm. It’s been over a year since her cancer, so she’s considered cancer-free, but she’s still battling for a few days.
“I am weaker than before the cancer. My lungs aren’t as good as they used to be,” she said. “I always push. I work. I take care of children. I do what all the other moms do.