Gestational Trophoblastic Disease

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Over the 9 years since this cancer claimed my daughters life, and endangered mine, I have done extensive research to find out about it.  When I had this cancer, I was a teenager, medical decisions were not mine to make, they were my parent's, and a LOT was hidden from me.  This page is intended to tell the truth about this cancer, but without a whole bunch of medical terms that most people don't understand...in other words...I'm using as much plain English as I can.

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What is Gestational Trophoblastic Disease?  Well, it's cancer.  It's a rapidly growing metastic (able to spread) cancer.
 
What causes Gestational Trophoblastic Disease?  Pregnancy.  Simply put, here is what happens.  Egg and sperm unite, implantation and cell devision begins.  Then things go haywire.  Cells inside the placenta mutate...instead of forming a soft placenta, they form a tumor.  Sometimes the fetus continues to grow, sometimes not. 
 
What are the symptoms of Gestational Trophoblastic Disease?  Same as pregnancy symptoms...only slightly exgagerated.  You miss a period, pregnancy tests turn positive, morning sickness sets in, cravings, so forth and so on. 
 
How is it detected?  Through 3 very basic tests.  1. A blood test called a Beta HCG, this looks for a specific number of the Human Gonatropic Hormone (pregnancy hormone), in this cancer the numbers skyrocket higher than in a normal pregnancy.  2.  Fetal Heart tones.  Simply put the doctor looks for fetal heartbeat...but there is none.  3.  Sonogram.  Yep, they do an ultrasound like they would to check on a baby, looking for the baby's hearbeat.  But...there is none. 
 
*I can not stress highly enough to anyone who is pregnant...The first 3 months of your pregnancy ARE important...don't skip your Dr. visits.  I did.  I didn't think Dr. visits that early was important, I was waiting until I got married in my 3rd month to visit the doctor.  Don't do this!!!  My baby was gone at 10 weeks, 2 1/2 weeks before I was scheduled to get married.*
 
What is the US percentage for this? 1 in every 15000 pregnancies, so it's kind of rare.  *So, if your pregnant, yes, there is a slight risk, but more than likely, things will be ok.  I just happened to be 1 of the 15000 in 1995.*
 
The biggest lie I was ever told about  this cancer?  "Well, you're not pregnant.  You never were pregnant."  *That was a ball faced lie, and I'm glad the doctor that told me that has now lost his medical license and is in prision...see, that doctor, never had a medical license to begin with...he failed med. school, and got his license fraudilently!*
 
 
 

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Why do I say that "you're not pregnant and never were" is a lie? Well, first of all, if there is no pregnancy then this cancer can't occur.  There has to be a joining of an egg and sperm...thus, pregnancy.  And, if there never was a pregnancy then why remove the remains by abortion?  A D and C is an abortion.  This was another one of those things that was hidden from me.  I can live with the fact that I had an "abortion" because...my baby was already dead before this occured.  In my case, the D and C did not work, and I had to have a cescerian, with part of my uterus and tube removed. 

My pregnancy with November was as follows:  1.  It was an invasive mole.  2.  It was detected before the 4th month.  3.  My age was less than 39.  4.  My Beta HCG was about 200,000. 5.  My blood type was in the A/O catagory.  6.  I had began "spontanious abortion" aka "miscarriage" when it was detected...problem was, it was invasive and didn't want to detach from the uterus...not naturally or by D and C.  7.  I fell into the Intermediate Risk Catagory.  8.  Had about 6 months of very extensive chemotherapy with multiple drugs.

Intresting facts about Gestational Trophoblastic Disease
 
1.  It is usually considered to be a Molar Pregnancy.
2.  They have 23 pairs of chromosomes and They are XX.
3.   Somtimes there is a fetus or parts of one, but not always.
4.  Eventually, the patient will spontaneously miscarry and pass the mole. If the molar pregnancy is detected before that happens then an abortion has to be done to evacuate the uterus.
5.  Gestational trophoblastic disease is characterized as either metastatic or nonmetastatic.
6.If nonmetastatic then treatment is by single agent chemotherapy or sometimes by hysterectomy.
7.  If metastatic, then it is divided into good prognosis and poor prognosis disease.
8.  This is a cureable cancer, with a high success rate.  *this does not mean that people don't die..I had an 85% chance of survival.*
9.  The absolute rarest form of this cancer occurs after the birth of a baby..it happens when parts of the placenta are left behind, this is the form that usually goes undetected for the longest period of time, and is the most life threatening to the mother.
10.  This cancer falls under the following terms: molar pregnancy, invasive mole, metastatic mole and gestational choriocarcinoma
11.  There are two main ways people learn of this cancer: a.) They've been to med school  b.) They are diagnosed with it.

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Parameter Good Prognosis Poor Prognosis
Last pregnancy event less than 4 months more than 4 months
B-HCG level less than 40,000 more than 40,000
Prior pregnancy mole term
Treatment no prior treatment failed prior chemo

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World Health Organization Scoring System.

Prognostic factor 0 1 2 4
Age <39 >=39 . .
Prior pregnancy mole abortion term .
Interval <4 mo 4-6 mo 7-12 mo >12 mo
B-HCG <1,000 <10,000 <100,000 >100,000
ABO blood group . OxA or AxO B or AB .
Size of largest tumor . 3-5cm >5cm .
Site of metastases . spleen,kidney GI,liver brain
Number of metastases . 1-4 4-8 >8
Prior chemotherapy . . single agent two or more

Total score: 0-4 low risk, 5-7 intermediate risk, >8 high risk for death.

The scoring systems indicate the need for multi-agent chemotherapy. The high risk groups and poor prognosis group require aggressive multi-drug regimens. Involved organs or parts of organs that can be removed are removed surgically, because if the Beta HCG does not go down to normal and stay there, the patient is going to die. Normal Beta HCG for a woman who is not pregnant is 0-3.

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Why does this page look like it's made for a baby girl?  Well, it has to go with November's Page.  And, XX chromosones is a girl.  It seems that in order to develop this cancer, you have to concieve a girl.

This information has been collected from various medical sites over the years, as well as my personal experiences with my doctors.

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