Mom, 27, Survives Rare Cancer That Mimics Pregnancy: ‘My Uterus Was Filled With What Looked Like Grapes’

“I freaked out,” she said. “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.”

Come to find out, she wasn’t pregnant at all. She had developed a rare disease called gestational trophoblastic disease (GTD) that can mimic pregnancy. And, to top it all off, her GTD was cancerous.

“I was shattered. I just cried all the time… Depression really set in,” the then 25-year-old mother of one said. “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.”

She underwent seven months of chemotherapy, but she was constantly in an out of the hospital. She suffered from chemo-related ulcers in her mouth and throat, severe stomach and intestine problems and hair loss. She even had a bout with blood clots that nearly took her life.

"The biggest [blood clot] 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 knew she had more chemotherapy sessions ahead of her after the major blood clot scare, but getting herself to finish her treatment regimen was becomingly increasingly hard.

"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,'" Wilhelm said.

Thankfully, she did complete her chemotherapy treatments in November 2020, and she’s still cancer-free today.

“It was a long road to recovery as far as bouncing back from it,” she said. “I'm still bouncing back from it.”

Now, Wilhelm is sharing her story to help others experiencing similar battles with rare and complicated diseases.

“Don't give up and keep your head up and find the one thing that makes you smile," she said. "I knew I had to keep pushing for [my son, Donivan]."

What Is Gestational trophoblastic disease (GTD)?

Gestational trophoblastic disease (GTD) is “a group of rare tumors that begin during a pregnancy,” according to Memorial Sloan Kettering Cancer Center.

These tumors begin in the cells that would usually develop into the placenta (an organ that develops in the uterus during pregnancy and provides oxygen and nutrients to your growing baby and removes waste products from your baby’s blood).

Generally, GTD happens in women at the early or late stages of childbearing potential usually in patients under age 20 or over age 40.

GTD can be benign (not cancerous) or malignant (cancerous). Wilhelm's was, unfortunately, cancerous. But like most people with GTD, she was able to be cured and become pregnant at a later date and experience a normal pregnancy.

According to the National Cancer Institute, signs of GTD can include the following:

• Vaginal bleeding not related to menstruation.
• A uterus that is larger than expected during pregnancy.
• Pain or pressure in the pelvis.
• Severe nausea and vomiting during pregnancy.
• High blood pressure with headache and swelling of feet and hands early in the pregnancy.
• Vaginal bleeding that continues for longer than normal after delivery.
• Fatigue, shortness of breath, dizziness, and a fast or irregular heartbeat caused by anemia.
• GTD can also sometimes cause an overactive thyroid which can lead to a fast or irregular heartbeat, shakiness, sweating, frequent bowel movements, trouble sleeping, feeling anxious or irritable and weight loss.

These signs and symptoms may be caused by GTD or by other conditions. Either way, you should see your doctor if you experience any of the above or notice a change to your health.

Rare Cancer

With a rare cancer diagnosis can come all sorts of feelings of anxiety, fear and loneliness. But it’s important to know that you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.

Clinicaltrials.gov

One place to start when you've been diagnosed with a rare disease is clinicaltrials.gov  a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world. Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of cancer with a new approach.

RELATED: If You're Diagnosed with a Rare Cancer like Louis Vuitton Designer Virgil Abloh, How Do You Find Help?

Clinical Trials Can be Life-Saving for Some

Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.

By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, "Investigators." Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.

Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can be play an important role for some patients' treatment, but they also serve a larger purpose.

"Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments," Dr. Karlan said. "We need everyone to be partners with us if we're ever going to truly cure cancer or prevent people from having to die from cancer."

That being said, it's important to remember that clinical trials aren't for everybody. And going into a study does not necessarily mean you'll receive better care than the standard treatment.

PubMed

Similar to clinicaltrials.gov, PubMed is another place to turn if you're looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals and online books.

If you type in your disease, you'll see a list of studies and articles about the cancer. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.

Academic Centers and Comprehensive Care Centers

For some cancer warriors, community oncology provides great treatment options. But for people with rare cancers, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.

In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland's comprehensive cancer center, explained what differentiates a "comprehensive cancer center" from other treatment providers.

Seeking Care at a Comprehensive Cancer Center

"Pretty much automatically, there's going to be a team approach [to your care]," Dr. Miller said. "Surgical oncology, medical oncology, radiation oncology, and all the support servicesand also wonderful pathology and radiology."

Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.

"We call it a tumor boarda group to go through all the details of your case… so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well."

Newly-Developed Drugs

For those who've been recently diagnosed with a rare cancer, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases. The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.

Compassionate Use and Off-Label Use

Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer "compassionate use." Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.

The "Right to Try" Controversy: When Should People be Given Experimental Drugs?

Similarly, researching drug companies may be a path to "off-label" drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.

Contributing: Joe Kerwin

Learn more about SurvivorNet's rigorous medical review process.