27-year-old mother fought rare cancer, complications during COVID
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People who meet 27-year-old Kaylan Wilhelm today wouldn’t know how rough 2020 was for her or that she is a cancer survivor.
In March 2020, as the world was descending into the COVID-19 pandemic and stay-at-home orders, Wilhelm tested positive for pregnancy — only to learn afterward that she wasn’t pregnant at all.
She had a rare type of cancer that mimics pregnancy. She had to undergo seven months of chemotherapy — during COVID restrictions and without a support person — including a bout with blood clots that nearly killed her.
Wilhelm, an Akron native who now lives in Ravenna, had gestational trophoblastic disease (GTD), a condition where patients have an abnormal pregnancy that does not produce a baby but still gives off high levels of pregnancy hormones. Those hormones trigger positive pregnancy tests.
A patient may have what’s called a molar pregnancy, when the sperm and egg have joined without the development of a baby or choriocarcinoma, a tumor that may have started as a molar pregnancy or from tissue that remains in the uterus after a miscarriage, abortion or delivery of a baby. In some even more rare cases, the disease can be detected years after a pregnancy, said Dr. Roberto Vargas, a Cleveland Clinic gynecological oncologist who treated Wilhem at Cleveland Clinic Akron General.
Not all molar pregnancies are cancerous, said Vargas.
Some of the abnormal pregnancies resolve with a dilation and curettage (D&C) — a procedure often performed to clear the uterine lining after a miscarriage — and are benign. No further treatment is needed in such cases, he said. Malignant cases, however, require chemotherapy and possibly surgery with a hysterectomy, depending upon the age and complications of the patient, he said.
The cancerous form of the disease is rare, said Vargas, about 0.2% to 0.5% of pregnancies.
“It’s a very rare entity to have a molar pregnancy and even more rare is the development of gestational trophoblastic disease,” said Vargas. “People that have had prior molar pregnancies or get pregnant at the extreme of ages — like greater than 40 or before the age of 18 – have a much higher risk.”
Vargas, who is an author of a published medical journal article on a study looking at pregnancies after GTD, said the majority of patients with a prior molar pregnancy with the disease go on to have normal pregnancies after. The study found that 1.7% of patients had a molar pregnancy in later pregnancies and there was a slightly higher risk of stillbirth by 1.3% in later pregnancies.
“The great majority of people — even with a prior molar pregnancy, despite the fact that they have a higher risk — should expect a normal pregnancy afterward,” he said.
There are also rare cases when the cancer can spread to other parts of the body, potentially causing death, but “this is one of the few conditions that even though we use the word cancer, we also very, very often — like in Kaylan’s case — can use the word cure. That is very rare for a cancer doctor to be able to say,” said Vargas.
In Wilhelm’s case, “she was an ultra-complicated patient, but ultimately ended up with a great outcome — which is what we should expect and what we do expect from early-stage molar pregnancies,” he said.
With better technology and access to ultrasounds earlier in pregnancies, the disease is being diagnosed earlier, Vargas said, often between eight to 12 weeks of gestation, compared to 16 to 20 weeks.
“One of the signs back in the day was that you’d have an abdomen that was bigger than what was expected based on your gestational age,” he said.
“This is … an abnormal pregnancy, and you don’t know until all of a sudden you have bleeding and an abnormal ultrasound,” he said.
Wilhelm’s story
Wilhelm had fertility issues when she first tried to get pregnant when she was 19. She had three miscarriages, and then at age 21 gave birth to a son, Donivan, who has Down syndrome.
Wilhelm was on birth control in 2020 and was not trying to get pregnant since she was focusing on Donivan, who is now 5.
She missed a period and her family asked if she was pregnant. She said no.
A home pregnancy test came back positive.
“I was really torn,” she recalled. “I was excited because it’s like, ‘Oh, it’s another baby,’ like it wasn’t expected, but … blessing come at strange times.”
“I had a child with a genetic disorder that is more common in women in their 30s and older, so I was scared. I didn’t know what to expect,” she said. “I was ready to face whatever challenge came my way.”
But she wasn’t expecting cancer.
A doctor confirmed she was pregnant, and estimated she was about five to six weeks pregnant, but found an empty yolk sac on an ultrasound. The doctor said it might be too early, so to come back in two weeks.
But before that two-week mark, Wilhelm started bleeding.
“I freaked out. I went to the hospital and they did an ultrasound. There was no sack, no nothing. My uterus was filled with what looked like grapes on the ultrasound.”
The doctors said Wilhelm likely had a miscarriage. But her hormone levels for beta-HCG (beta human chorionic gonadotropin) which is present during normal pregnancy were still high and indicating she was pregnant. They were higher than normal, indicating she should be further along in her pregnancy.
Physicians told Wilhelm that they weren’t sure why her levels were high, but since it appeared she had a miscarriage, she should get D&C.
But the bleeding didn’t stop.
“I was constantly going to the hospital … literally every other day because I was bleeding so much and passing clots literally the size of the palm of my hand,” said Wilhelm.
This was all happening during the height of COVID, when patients were not allowed to have people accompany them, she said.
“I was all alone through all of it,” Wilhelm said.
Wilhelm’s medical team at Akron General couldn’t figure out why she was losing so much blood.
They did a second D&C and also tested her tissue.
They said they believed she might have a molar pregnancy, which is when a sperm and egg cells have joined without the development of a baby in the uterus. Instead, the tissue that is formed resembles grape-like cysts.
A few weeks after the second D&C, Wilhelm was told she did have cancer. Even though the second D&C had cleaned the uterine lining, the pregnancy hormones were still present and reading like she was three to four months pregnant.
The 25-year-old at the time did not want to believe that she went from the emotions of finding out she was pregnant, to not being pregnant, to having cancer.
“I was shattered. I just cried all the time,” she said. “Depression really set in.”
“It was, ‘Oh, I’m pregnant, well, no, it’s cancer. It was another loss. Why can’t I just have kids? I just want to be a mom.”
Wilhelm also said she questioned why.
“Why me? What did I do to deserve this? Where did I mess up so bad for this to happen to me?
“Even in women that are more likely to have that kind of pregnancy, typically they do one D&C, and it’s gone and done and doesn’t come back,” she said.
Her mom was her main support since her boyfriend at the time left town before her cancer diagnosis.
Meeting ‘Dr. Dad’
Wilhelm was sent to see Vargas, and said she was scared to see a male gynecologist.
But she trusted him once she asked him what advice he would give if she were his daughter, wife, mother, or sister.
She calls him her “Dr. Dad.”
Wilhelm went through two different types of chemo since the first one didn’t work, and her pregnancy hormone levels skyrocketed after going down. In total, she was on chemo for seven months.
And since COVID visitor restrictions were in place, Wilhelm had to go through all treatments alone.
She also had side effects from the chemo, including ulcers in her mouth and throat and hair loss.
Losing her hair, which had been all the way down her back, was very hard, Wilhelm said.
“My hair was the one thing I did not want to lose. I didn’t care what happened or how sick I got. I didn’t care if I lost my life. My hair was my everything,” she said.
She also eventually needed to get a port for her chemo since she had some complications with the IV and was in and out of the hospital, severely dehydrated. She also had severe stomach and intestine problems from the chemo.
By this time, Wilhelm’s mom had taken a leave of absence from work to care for her daughter and grandson.
Then in October 2020, four days before Wilhelm would turn 26, she passed out at her mom’s home, where she and her son were living.
When she woke up, she refused her mom’s pleas to go to the emergency room, but eventually agreed.
Blood work showed that she had eight blood clots in both of her lungs, a potential side effect from the cancer.
“The biggest one that was in my left lung was getting ready to go into my main artery in my heart, and I was literally a couple days away from a massive heart attack that could have taken my life because I was already so weak,” she said. “So I spent the week of my 26th birthday in the hospital.”
She was released from the hospital the day after her birthday. She still needed to finish more chemo and was very weak.
“At that point, I’m like, ‘I can’t do this no more. Just let the cancer take over. I can’t continue to be sick. It’s taking so much time away from my son, and I’m miserable at this point,’” recalled Wilhelm.
Wilhelm made it through the treatments, but not without more trips to the hospital, including once when her oncologist wouldn’t let her leave her office in her car, but ordered an ambulance to take her to the hospital for dehydration.
Wilhelm is fighting her insurance provider, who doesn’t want to cover that trip, which landed her in the hospital for three days until her blood pressure could get under control.
She was placed on blood thinners, and the threat of her blood clots decreased.
Wilhelm finished chemo in November 2020, had scans to make sure the cancer was not elsewhere in her body and she was declared cancer-free. Doctors continued to check her HCG hormone levels through blood work. The goal was to get it to zero, indicating there was no longer any cancer.
“It was a long road to recovery as far as bouncing back from it,” she said. “I’m still bouncing back from it. I was told not to get pregnant for at least a year,” she said, since doctors wanted to make sure her HGC levels stayed at zero and since she was on blood thinners. A baby could also have risks of issues due to the chemo Wilhelm had also just finished.
In February 2021, during one of her blood-draw checkups on her hormone levels, she found out she was pregnant. It was not planned.
Wilhelm said she was terrified to tell her “Doctor Dad” that she was pregnant. She also worried that maybe her cancer was back instead of a pregnancy.
Wilhelm went under the care of several other departments to watch her high-risk pregnancy, due to her blood clots. Most subsequent pregnancies after the disease and chemo do not require care by a high-risk obstetrician, Vargas said.
For Wilhelm, she was under the care of maternal fetal medicine, pulmonology and medical oncology at Akron General.
Healthy pregnancy, baby
Though she was considered a high-risk pregnancy, Wilhelm had an easy and uncomplicated pregnancy. She’d avoided getting COVID in her initial hospital stays and during chemo, and she received the COVID vaccine during her pregnancy. But she still got a mild case of COVID while pregnant.
She gave birth to Ja’Shon Moss a week before her due date in a scheduled cesarean section since she needed to be taken off blood thinners and monitored.
Now 5 months old, Ja’Shon is healthy and so is his mom. She is not on any medications for her cancer or blood thinners, though she is back on birth control.
She and her boys have moved to their own apartment, and she has help and support from Ja’Shon’s father. Wilhelm is also working as a manager at a Papa John’s.
While her two most recent pregnancies weren’t planned and only one resulted in a healthy baby, Wilhelm says she has mixed feelings whether she wants to have more kids.
“I don’t know if that’s cut out for me. I don’t want kids super close in age, but close enough and my cutoff is age 30 and I’m going to be 28 this year, so I don’t know,” she said.
“As of right now, no, but I really do want a daughter,” she said.
Wilhelm said she knows her case was rare and complicated and that most others won’t go through the extremes she did.
Still, “it was a mental struggle,” she said.
But she now is thankful for the little things and looks at life differently.
She also wants women to know they are not alone.
“Don’t give up and keep your head up and find the one thing that makes you smile,” she said. That one thing for her during her treatments was her son, Donivan.
“I knew I had to keep pushing for him.”
Vargas said Wilhelm’s treatment was prolonged since she had to transition to a second form of chemo, then formed the blood clots.
“She just had something that come up at every turn, and then even after she got to the ‘cure and watchful waiting,’ the pregnancy complicated everything,” he said.
“But on the other side of it, she had a normal pregnancy, a healthy kid and is for all intents and purposes, cured.”
Beacon Journal staff reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ.
