- Gestational trophoblastic disease
- Interviews
MCHill's interview
How did all start?
I found out I was pregnant in December of 2016 and scheduled a prenatal appt. with my OB/GYN. I had a miscarriage the year before so I was anxious to find out if everything was ok. Unfortunately my doctor did an ultrasound and said I was either not as far along as we thought (should have been 11 weeks, measured at about 6 weeks, no heartbeat) or I was miscarrying again. She sent me to a specialist to confirm the miscarriage. He confirmed it, and we waited for me to pass the tissue naturally as I had with my first loss. My OB/GYN had me come in for follow up labs to monitor my HCG and make sure it was decreasing as it should have been, but it continued to rise. She scheduled me for surgery immediately, with suspicion that it was a molar pregnancy. Post surgery, pathology results confirmed that it was a complete mole and my doctor continued to monitor my levels, but they still continued to rise. At that time I was diagnosed with high risk Gestational Trophoblastic Disease and was told that it was invasive. My doctor then referred me to an Oncologist for futher treatment.
Do you already have a diagnosis? How long did it take you to get it?
My initial diagnosis of the molar pregnancy came about a month after learning that I was miscarrying again. The diagnosis of the high risk GTD/invasive mole came a few weeks later. I had a second surgery but my levels continued to rise, so I ended up having 12 weeks of chemotherapy. My levels are currently where they should be, but I am still under the care of the Oncologist and will be for several more months.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was initially treated by my OB/GYN (who is wonderful) and she initially referred me to Maternal Fetal Medicine to see a specialist, but then also referred me to a Gynological Oncologist. My OB/GYN and Oncologist have been amazing, as have all of their staff. I can’t say that one was more useful than the other, because they were both vital to my diagnosis and treatment.
What has been the most useful thing for you so far?
The support of my family.
What have been your biggest difficulties?
Dealing with the emotions - grieving my loss, fears of cancer, illness from treatment, weakness and fatigue, etc.
How has your social and family environment reacted? Have your social or family relationships changed?
A lot of friends disappeared during my illness. My husband stepped up and took wonderful care of me and of our son. Social and family relationships have changed drastically. I became antisocial with friends.- what began as the inability to do much due to my illness turned into the lack of desire to do much.
What things have you stopped doing?
Socializing for the most part. I have a few close friends that I talk to, but I don’t go out much. I continued working throughout my illness (with the exception of 2 months of medical leave in the beginning) but I recently quit my job due to the stress of everything while I am still trying to recover fully.
What do you think about the future?
I’m heartbroken to think that I may not have another baby because of all of this. I wonder if my marriage or my son will be affected by it in the long run.
So far, which years have been the best years in your life? What have you done during them?
My late 20s/early 30s - I met my husband, travelled with him quite a bit, had a lot of fun, then we married and had our son.
What would you like to do if you didn’t have your condition?
Have another baby
If you had to describe your life in a sentence, what would it be?
My life has been full of trauma, tragedy, illness, and loss, especially in recent years, but it is also full of love, hope, and determination.
Finally, what advice would you give to a person in a similar situation?
Ask questions of your medical team, reasearch, seek out support groups for people in a similar situation. Seek counseling, try not to push away your spouse/parents/siblings/friends - you need them, trust me.
