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I Was Blindsided by a Cancer I’ve Never Heard Of

Article

I was told that I would miscarry my pregnancy, but continued to feel more pregnant, leading to my molar pregnancy diagnosis — a condition I’ve never heard of before. 

I wish every woman out there knew that there is a type of cancer that can result from a pregnancy. To me it's preposterous that this can affect every single human with a uterus, yet it’s virtually unknown to the world.

When I was diagnosed with a molar pregnancy, I had no idea what was happening. I was so confused, but all I remember is hearing “chance of cancer” followed by “but that risk is less than 1%, so don’t worry.”

In just a few short weeks I went from elated about discovering I was pregnant, to heartbroken when we realized I was miscarrying, to dazed and confused when it was diagnosed as a molar pregnancy. It was completely foreign to me. I had never heard of it and even after my doctor tried to explain what was happening, I still didn’t understand.

Up until that moment in the doctor’s office when he told me what was happening, all I could focus on was getting better so we could try again. Getting pregnant again was the only thing that got me through those first few weeks, but the molar pregnancy changed that in an instant. After the molar was discovered, my doctor informed me that I would not be able to try to get pregnant for a year. A WHOLE year. I was shattered. Looking back now I think, if only that was my biggest problem.

Aug. 3, 2019, was a Saturday. I was home alone with the kids that day because my husband was at work. I took an at home pregnancy test, which turned up positive. I was so excited and had to wait all day for my husband to get home so I could tell him.

We had recently decided to start trying for our third and final baby and I was surprised at how fast it happened. The next weekend was my sister’s wedding, so we decided not to tell anyone until after her big day. I also wanted to wait until the first ultrasound just to be sure. I'm so glad we waited.

At the six-week ultrasound, we discovered that the gestational sac was empty. My doctor called it a blighted ovum, a typical miscarriage where fertilization happens but the baby doesn’t form. I asked my doctor if I could allow the miscarriage to happen naturally without surgical intervention and he said yes.

At that time there was no indication anything else was wrong. He told me to expect a large bleed and to be prepared as it could happen at any time. I went home that day, crawled into bed and cried myself to sleep.

In the following days and weeks, I went back to work and waited for my miscarriage to happen — but it never did. I started having food aversions, severe morning sickness and I was so tired I could barely function. It was almost like I was getting more pregnant, but I was also bleeding, and it was becoming more persistent. How could I be pregnant and bleeding at the same time? What was happening? I was so confused and SO sick.

A Molar Pregnancy

Then I started passing blood clots, and they grew bigger by the day. The spotting turned to gushing, and the sickness was so severe I couldn’t even stand up. When I went back to my doctor, he took one look at my ultrasound and knew right away. I saw it too, but I had no idea what it was. My ultrasound looked like my uterus was filled with little clusters of grapes. Little beady circles all bunched up together. He looked at me and said, “This is a molar pregnancy.”

A molar pregnancy is a rare occurrence when the placental tissue grows out of control and invades the uterus. There are two types of molar pregnancies: complete molar pregnancy and partial molar pregnancy. In a complete molar pregnancy, the placental tissue is abnormal and swollen and appears to form fluid-filled cysts. There's also no formation of fetal tissue. In a partial molar pregnancy, there may be normal placental tissue along with abnormally forming placental tissue. There may also be a fetus, but the fetus is not able to survive, and is usually miscarried early in the pregnancy.

A molar pregnancy seems normal at first, but when symptoms develop, they include severe nausea, vomiting, fatigue and vaginal bleeding. This is caused by massive amounts of the pregnancy hormone HCG that begins to skyrocket to astronomical figures. The hormone is produced because the tissue that is reproducing is from the placenta, so the body acts like it’s pregnant. In my case no fetus ever developed, but my HCG levels were extraordinarily high.

In all cases, the tissue must be evacuated from the uterus — which is always done first with a dilation and curettage (D and C) procedure. If that does not get it all, then a mild form of chemotherapy is needed to kill the tissue.

In some very rare cases, the tissue turns cancerous and can spread to other organs within the body. That is what happened to me. By the time I reached the 10-week mark, I was diagnosed with stage 4 choriocarcinoma, and it had spread outside my uterus and to my liver, lungs and spleen.

A day after receiving my diagnosis, I was in surgery having a port placed into my chest, and three days later, I was starting what would be 16 weeks of a hard-core chemo regimen. I was very lucky, we caught it fast, and my treatment worked. In the end I was weak, lost all my hair and would never be the same again, but I survived. Unfortunately, I had never heard of this condition and was blindsided by it.

Raising Awareness

I want to make people aware that this is something that can happen, without warning, and I want to arm women with the knowledge, so they know what to look for. Extraordinarily high HCG, severe pregnancy symptoms and heavy vaginal bleeding are all early signs of a molar pregnancy and should be discussed with a clinician immediately. Once the molar pregnancy begins to grow, it must be treated. It will not resolve on its own.

It is also very important that women understand why it is so pertinent that they do not get pregnant for at least six months to one year after a molar pregnancy. Pregnancy causes the same symptoms as a molar pregnancy, so it will be impossible to determine what is causing the HCG to rise. Molar pregnancies can recur if the tissue is not entirely removed, so women need to have regular blood tests to monitor their HCG.

If a woman gets pregnant too soon after a molar, the pregnancy can mask any signs of recurrence of the invasive tissue, which is tracked by HCG in the blood. I'd urge women who went through a molar pregnancy to take all precautions to avoid pregnancy until your doctors tell you it is safe.

Molar pregnancies are considered rare, with about one in every 1,000 pregnancies affected, according to the Mayo Clinic. In my opinion, that statistic is rare, but not that rare. If you think of the world’s entire population, one in every 1,000 women is a lot of people. Why don’t more people know about this?

That’s the part that frustrates me the most. Social media has helped bring more awareness, and connect women who have been affected, but we could still do so much more to educate people. That is why I share my story.

For more information on molar pregnancies and the cancer associated with them, a simple Google search is a good start. You can also search “molarpregnancy” hashtags on social media to connect with other women who have survived or are currently going through it. There are also great support groups on Facebook that have been very helpful. “My Molar Pregnancy Support Group” and “Choriocarcinoma & Molar Pregnancy & all GTD Support'' are two excellent resources that I recommend every person to join as soon as they are diagnosed.

This form of cancer is treatable, and in most cases affected women can go on to have perfectly healthy pregnancies, but time is of the essence. It must be caught and treated before it spreads too far. Early prenatal care is the best defense. See your doctors early and regularly, and if something seems off, trust your gut and have it checked out.

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