16 year old daughter has had 3 dermoids

[mamabear68]

my now sixteen year daughter had a dermoid ovarian torsion at age 8.  The tumor was a benign dermoid teratoma. 7 years later (Dec 2007) Ultrasound results found a large, what they described as an "unusual" cyst on her right ovary.  They said it was mostly fluid filled but there was a small solid mass. CA-125 test which came back positive, so she was referred her to a gynocologic oncologist who scheduled and preformed the surgery.  During surgery they discovered another cyst on her left ovary.  The tumors were benign and both were dermoid teratomas.  She is left with only 10% of her right ovary and 50% of her left ovary.  She had a very long recovery missing 2 months of school.  She is still not feeling great.  11 months later they have found another small mass on her left ovary and our worries are going through another surgery and losing more ovarian tissue and of course cancer.  She has had so many other small problems and it just makes me wonder if they are all related in some way.  Below is a list of my questions and her symptoms.
Why is this recurring?  Do we have to worry about cancer?  Are her risks higher for ovarian cancer?  We have recently moved, do you recommend her continuing to see a oncologist?
Will she continue to have problems until all of her ovarian tissue is gone?  Because a dermoid cyst is a mutation in the egg, as an adult, will she be able to conceive a healthy child?  Are their any risks there?  Symptoms: abdomen pain, tachycardia ,low bone density, low vitamin d levels, high cholesterol, severe acne, nausea, anxiety & depression.  We are so frustrated!  It seems like she never feels good.  We are at our wits end.  She has been to an endocrinologist a couple of times who have run several tests.  Nothing comes up too alarming.  Are we missing something?  Please give me advice on where to go what questions to ask and anything else we can have her tested for?  Thank you for any advice/help!

[Annekathryn Goodman, M.D.]

Dear Mamabear,
I wonder whether a reproductive endocrinologist would be a better choice for your daughter.

She has recurring cysts either because the dermoid was not completely removed or because she has multiple small tumors.
Dermoid cysts or mature cystic teratomas are benign tumors that come from the egg cells in the ovary. They are in the general category of germ cell tumors (germ cells are eggs)

Dermoids are the  most common tumor of the ovary. They are common in teenagers. They are not associated with malignancies.  The best intervention at this time is to try and preserve your daughter's ovaries. Repro endo doctors are trained to do minimally invasive surgery when surgery is appropriate and to stay away from surgery and manage things medically when appropriate.

Her other symptoms sound completely unrelated to dermoid tumors so I would watch the ovaries, put her on a birth control pill to suppress the common monthly cysts of ovulation, and check her out fro nutritional deficiencies and depression.

I know how hard this must be for you to watch her have trouble. These are tough, tough years!
best wishes

[Jeffdad]

My daughter had a mixed immature and mature teratoma (18 cm) removed 5 years ago. Her right ovary was removed at the time and she never had chemo. Since the initial operation she has been monitored closely with MRI's, CT scans, AFP and there has not been subsequent evidence of malignancy.

Since the initial operation she has had 6 operations to remove non malignant teratomas  on the left ovary to preserve the ovary and her fertility. There is gliamatosis peritonei in other associated areas (omentum, peritoneal sac, etc. which does not seem to present a problem.

As the primary concern is now her fertility, as the teratomas dont stop growing on her remaining ovary, is she doomed to have yearly operations or are there any other options to explore? Shes 20 years old.
Thanks,
Jeff