GTD is a very rare form of gynecological cancer. Questions about it have been answered by Lola, a Registered Medical Assistant (RMA), who was diagnosed with GTD in 1995. For more information about GTD, visit Dr. Rich's GTD pages <http://www.gyncancer.com/gest.html>.
Lola, Utah, USA: Symptoms may include vaginal bleeding, nausea, elevated hCG levels in the blood, and a positive urine pregnancy test.
Lola, Utah, USA: The hormone excreted by GTD is the same hormone which is elevated in a normal pregnancy. It can cause a feeling of queasiness or morning sickness.
Lola, Utah, USA: Ask your doctor. Symptoms are intensified if you have an empty stomach. Alleviate the symptoms by keeping a small amount of food in your stomach.
Lola, Utah, USA: The prognosis for any diagnosis of malignant trophoblastic cancer is greatly improved by care and management by an experienced gynecological oncologist.
Lola, Utah, USA: Testing of hCG levels in the blood is done frequently for GTD. Some physicians will suggest weekly blood testing at first, to confirm regression of the trophoblastic tumor. After remission is achieved, hCG levels are monitored closely, generally with a weekly test for the first month, bi-weekly testing for the second and third months, and then every three months. The following year, testing may be done twice, and then finally, annual testing may be recommended for up to five years. This may vary per your physician's recommendations.
Lola, Utah, USA: Less than five mlU/ml (<5 mIU/ml) is considered a negative result.
Should I ask my doctor to do both a quantitative beta hCG blood test, and a urine hCG at the same time?
Lola, Utah, USA: Yes, some elevated hCG levels can be due to other factors besides GTD or recurrent trophoblastic disease. Certain hormone fluctuations and proteins in the blood may interfere with blood test results. Both tests should be requested, especially in initial diagnosis of GTD, as well as diagnostic testing for suspected GTD, before any invasive treatment recommendations are pursued.
How can women be falsely diagnosed with elevated hCG levels? How can elevated false-positive hCG be distinguished from true positive hCG levels?
Lola, Utah, USA: GTD is diagnosed and followed by measuring hCG hormone in the blood and urine. Scanning (CT, MRI, PET, ultrasound, or x-rays) is also used to look for tumors in the body in order to stage the disease. When scanning shows no evidence of disease, often the hCG levels are relied on heavily to determine whether the disease is still present in body.
Occasionally, there can be other reasons for elevated or fluctuating hCG hormone levels. In these situations, more specialized testing is available and should be considered.
For example, I have had persistent low levels of hCG since my treatment in 1995-97. In an effort to find out why I still had elevated hCG , my doctors suggested more specialized testing. They referred me to a lab that has pioneered highly specialized techniques to determine if there are other reasons for elevated hCG besides GTD. Dr. Larry Cole's hCG Reference Lab at the University of New Mexico determined that my hCG was real hCG, evidence of non-invasive GTD. (Unfortunately, my insurance didn't cover the specialized hCG test, but for my own peace of mind, I paid for it out of my own pocket.)
In some cases, however, these specialized tests results show that the elevated hCG level is really "false positive" hCG or "phantom" hCG, not originating in trophoblastic tissue. In cases of false positive hCG, urine samples will be negative for hCG, while blood samples are positive.
Lola, Utah, USA: Regular hCG monitoring by blood and urine testing should be done until the levels have fallen back to negative or less than five, (<5 mIU/ml) for blood hCG results. If the hCGs go down to negative levels, chemotherapy is not usually necessary. Spontaneous regression of a molar pregnancy is not uncommon, but requires close monitoring and follow-up to unsure that hCG levels have gone to negative and stay less than five (<5 mIU/ml).
Lola, Utah, USA: Rarely is surgery the first line of treatment for women diagnosed with GTD. Generally, chemotherapy is recommended, and effective for remission and cure. In some cases of recurrent GTD, surgery or radiation may be recommended along with additional chemotherapy.
Lola, Utah, USA: Women previously diagnosed with GTD can go on to conceive, and most often can have a normal pregnancy. Close follow-up of GTD is necessary, and pregnancy is usually not recommended for at least a year following treatment of the disease or diagnosis of a molar pregnancy.
Carol F., Pennsylvania, USA: In 1962, at the age of 20, I had a molar pregnancy which spontaneously aborted in the fourth month. I subsequently had four natural births (all girls): 1965, 1969, 1971, and 1973, and one miscarriage of unknown cause in 1970.
I was told in 1962 to avoid pregnancy for at least a year. I did have to go for the monthly blood tests during that time to determine if there were hormones indicating pregnancy. Obviously, if I weren't pregnant, then the hormones would have to have been produced by some other source...and that source could have meant the development of chorionepithelioma - a rare and highly aggressive form of cancer.
I wasn't willing to take any chances, so I heeded my doctor's advice for that year following my molar pregnancy. Fortunately, I had no further indications of elevated hormone levels. All of my subsequent pregnancies (with the exception of the miscarriage in 1970) were perfectly normal, and the babies were all fine - and now having babies of their own. Incredibly, after all my girls, they've had eleven boys and only three girls!! The odds have sure evened!!