Finished treatment 5 or more years ago
Complete Blood Count (CBC) Test
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Hair Loss or Alopecia
Post Traumatic Stress
Wow. It's been a year and a half since ihadcancer added gestational trophoblastic disease onto the lists of cancers per my request and now I see so many new members, names I recognize from forums, groups, etc. This opportunity extends further support full circle for these women. I am thrilled to have another means within, bettering my awareness and fulfilling the needs of fighters, warriors, and survivors! Hugs to you all
I had my 1st 6 month oncology monitoring appointment and b-hcg levels are still >0.5. I will be released from all oncology monitoring after one more 6 month appointment! This will take me through 2 full years of monitoring after normal and stable b-hcg levels.
I want to take the time to thank you guys for finally adding Gestational Trophoblastic Tumor on because now there are other new survivors on here to connect with, bettering my awareness advocacy. This disease really isn't so common as portrayed.
I've come to realize that the hardest thing for me is accepting and freely admitting that I now have tired days and pain days. Prior to cancer/chemo, I never had these days and I rarely even got sick. When asked how I'm doing, I don't go into detail because I don't want to come off as complaining while thinking about the long list of side effects I do have. I keep smiling day to day-not pretending-but be continously thankful for only what I do have to deal with and blessed for life itself. It's really a small price in a big way. It's a new life, a new beginning. Life will never be the same again, but it's how one takes it. Acceptance with grace and humbleness.
Most women get a baby after pregnancy; however, my pregnancy gave me a baby, and cancer. Actually, two babies and cancer. That's right. I got cancer from my pregnancy. Who knew such a beautiful milestone can turn into a life threatening event? This is the problem-lack of awareness and informational knowledge.
Molar pregnancy is the disease gestational trophoblastic neoplasia or gtd. Not all molars turn into this fast and aggressive maglignant cancer choriocarcinoma, but mine did.
There are two types of moles-partial and a complete, both grape like germ cells, both giving off pregnancy symptoms.
In a partial mole, the egg is fertilized by two sperm, doubling the sets of male chromosomes, therefore developing fetus adnormalities and the pregnancy has to be terminated if not already miscarried naturally.
In a complete mole, the fertilized egg has missing dna/chromosomes, therefore unable to support the pregnancy, stopping at the placentia. These cells are more susceptible to turn maglignant, enhancing the chances of choriocarcinoma. I had a more rare case of a complete molar alongside the baby, meaning her twin. I was not diagnosed until four months after her birth and oncology suspects it was fully gestated around 25 weeks into my pregnancy.
As complex as this disease is, the realities are severe and real. I had regular pre-natal care and the only signs/symptoms during my pregnancy were contractions around 25 weeks. These contractions grew stronger and stronger, yet my obgyn could not find anything wrong. He put me on mild rest, then told me to quit working out. This was my 4th pregnancy, so I knew these were not Braxton Hicks and my doctor seemed questioned.
I didn't make it to the hospital and my baby was born in the ambulance en route via hospital. I had postpartum bleeding for 8 weeks, my second sign/symptom. I had mentioned my bleeding inbetween this time to my obgyn and he seemed to think everything was alright especially after a physical exam.
Shortly on until four months after giving birth, I bled intermittenly and had menstrual like cramps. I was breastfeeding exclusively, so I began to become suspicious. I finally woke up one night in a hemorrhage and panic. The following day I had no bleeding, so I had some temporary relief until the following day when I passed a fairly large, thick blood clot. It was almost as if a giant, flattened grape, the size of a 50 cent piece. I knew then something was terribly wrong.
My obgyn took me in that morning, did a vaginal ultrasound and we saw the grape like vine image. I was instructed to be admitted into a local county hospital. It took 12 hours to officially diagnose me after several tests and massive hemorrhaging. The date was February 1, 2014 and I begun chemotherapy February 4th. b-hcg levels were over 221,000 and I became resistant to single Methotrexate injection, so I was put on the grueling ema-co 5 agent regimen. I had a total of 12 rounds of chemo, 6 1/2 months. Every other week was inpatient following outpatient. If caught in time, choriocarcinoma responds very well to chemotherapy. I had to have two blood transfusions.
My baby will be two years old this September. She is healthy and said to be out of harm's way of the cancer, though she did loose her twin. We are very blessed to have put this behind us and the great opportunity to move forward with precious life.
My continued goal is to reach to others that have faced, are facing, and to those that have lost their daughters. I am also strong on awareness and gaining funds for Dr. Goldstein's exclusive choriocarcinoma/gtd research and treatment at Brigham's and Women's Hospital at https://giving.brighamandwomens.org/choriocarcinoma ;
I have a Facebook page Choriocarcinoma & Molar Pregnancy Awareness and a Facebook support group Choriocarcinoma & Molar Pregnancy Support.