Pregnancy Loss and Grief After GTD

Two things happened at once, and most people will only see one of them. You lost a pregnancy. You were also handed a diagnosis and a follow-up schedule that will not let you move on yet.

The National Cancer Institute describes gestational trophoblastic disease (GTD) as "a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception." Trophoblast cells are the ones that would normally have built the placenta.

The most common form is a hydatidiform mole, often called a molar pregnancy. In a complete mole, sperm fertilizes an egg that has no maternal DNA. In a partial mole, a normal egg receives two sets of DNA from the father.

That biology is worth knowing for one reason. Nothing you did, ate, or lifted caused this. It happened at fertilization.

A miscarriage ends a pregnancy. A molar pregnancy ends a pregnancy and starts a monitoring program. The tissue you would normally grieve is the same tissue your doctors now have to track.

That leaves a loss nobody has a card for. Friends do not know whether to say sorry or to say they are glad it was caught. Some will suggest you were never really pregnant. You were. Use whatever words for this pregnancy feel true to you.

Follow-up after a molar pregnancy has a fixed shape. NCI describes it. After the tissue is removed, "beta human chorionic gonadotropin (beta-hCG) blood tests are done every week until the beta-hCG level returns to normal." Then there are "follow-up doctor visits monthly for up to 6 months."

Then comes the sentence that changes everything emotionally. "Pregnancy causes beta-hCG levels to increase, so your doctor will ask you not to become pregnant until follow-up is finished."

So the most natural response to losing a pregnancy, which is trying again, is the one thing that is off the table. And the blood test that tracks your recovery is the same hormone test that would have confirmed a new pregnancy. Many people find the weekly blood draw harder than the surgery was. That reaction makes sense.

Ask your team for the expected end date of your monitoring and write it on a calendar. An open-ended wait is heavier than a long one.

Anxiety in this period usually attaches to one question. Will this become cancer? NCI publishes figures.

• "Complete HMs have a 15% to 25% risk of developing into an invasive mole, but transformation to malignancy is much more rare (<5%) in the case of partial moles."
• Chemotherapy is needed for about "15% to 20% of patients after evacuation of a complete HM but for fewer than 5% of patients with partial HM."
• NCI states plainly that "Gestational trophoblastic disease usually can be cured."
• If low-risk gestational trophoblastic neoplasia does develop, "the ultimate cure rates are generally 99% or more."
• For high-risk disease, one large case series reported "a complete remission rate of 78%" and "a long-term cure rate of 86.2%."

Ask which type you had: complete mole, partial mole, or neoplasia. The numbers differ sharply between them, and a general figure found online will not match your case.

NCI reports that a woman already diagnosed with a hydatidiform mole "carries a 1% risk of HM in subsequent pregnancies." That rises "to approximately 25% with more than one prior HM."

One percent is not nothing. It is also far lower than most people assume when they first hear this diagnosis. Ask your team how they would watch an early future pregnancy, and when they will consider it safe to start trying.

There is usually no funeral here, and often nobody else who knew. NCI's bereavement summary describes reactions that apply anyway: numbness, disbelief, anger, sadness, guilt, lost sleep, appetite changes, and losing interest in things.

NCI also describes grief bursts, meaning "highly intense, time-limited periods (e.g., 20-30 minutes) of distress." They are usually set off by reminders. Here the reminders are specific and they repeat: the due date that was, an appointment that used to be a scan and is now a blood test, a friend's announcement, the anniversary of the day you found out.

Put your own dates on a calendar so they arrive as expected rather than as ambushes.

Guilt deserves its own line. A complete mole forms when sperm fertilizes an egg that carried no maternal DNA. There is no version of your behavior that would have changed that.

You may need two different kinds of support at the same time.

One is pregnancy-loss support. MedlinePlus says it simply: "No matter when it occurs, losing a pregnancy can be difficult. Counseling may help you cope with your grief."

The other is cancer support, because your follow-up is run by a gynecologic oncology team. Ask that team what they offer, and ask specifically whether their counselors have worked with molar pregnancy before. Many pregnancy-loss groups have never heard of hCG surveillance. Many cancer support groups will not know what to do with a pregnancy loss.

If you have a partner, they lost the same pregnancy and are usually offered nothing at all. Ask whether they can come to a counseling appointment with you.

NCI lists signs that should be reported rather than saved for the next appointment.

• Call 911 or go to an emergency department if vaginal bleeding turns heavy and will not slow, or you are close to acting on thoughts of death. In the United States the 988 Suicide and Crisis Lifeline is available "24/7/365" by call or text to 988, and it covers "emotional distress," not only suicidal crisis.
• Call your care team the same day if you have "vaginal bleeding not related to menstruation," bleeding "that continues for longer than normal after delivery," or pain or pressure in the pelvis.
• Call your care team the same day if you are short of breath, dizzy, worn out, or your heartbeat is fast or irregular. NCI links that pattern to anemia.
• Call your care team the same day if you think you might be pregnant during monitoring. A rising hCG then has two possible meanings, and they need to know which.
• Call your care team within a day or two if you notice shakiness, sweating, frequent bowel movements, trouble sleeping, or weight loss. NCI notes that GTD can cause an overactive thyroid. Every one of those signs is easy to blame on grief. Get them checked instead of assuming.
• Call your care team within a day or two if you cannot eat, sleep, or work for days at a time, or you are avoiding the blood draws that keep you safe. Say it out loud rather than skipping the appointment. Ask what help exists for getting through it.

• Gestational Trophoblastic Disease Treatment (PDQ), Patient Version — National Cancer Institute
• Gestational Trophoblastic Disease Treatment (PDQ), Health Professional Version — National Cancer Institute
• Grief, Bereavement, and Coping With Loss (PDQ), Patient Version — National Cancer Institute
• Grief, Bereavement, and Coping With Loss (PDQ) — NCBI Bookshelf, National Library of Medicine
• Miscarriage — MedlinePlus
• 988 Suicide and Crisis Lifeline