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Leiomyom with atypia and mitotic index = 10, whats next?

Leiomyom with atypia and mitotic index = 10, whats next?

Hi,
Short on my case: I am 29, never pregnant before. I have gone through 3-4 months of heavy bleeding (Feb-May this year) and went through a hysteroscopy to remove a possible polyp (8-9mm) in my uterine cavity. The polyp (removed in May) was then sent to a biopsy with results that according to my doctor came out fuzzy (highly cellular leiomyoma with densely packed cell nuclear, partially well-developed cell image with mitotic index = 10). Since my doctor found these results fuzzy (??), he sent the sample for a second opinion. The results communicated to me were then: Highly cellular leiomyoma, benign, with no suspect of sarcom.  

My questions to my doctor: 1) Since an atypia was found, what assures him that my endometrium has a normal tissue? Should I have the rest of the endometrium checked? 2) Should I have follow-up check-ups? 3) Should I see a ginecologist oncologist?

His answers: According to him, I am free to go and shouldn't worry. Well, since I got to read a lot (as you may well understand), I start to question myself what I should do next....

My question to you: Is a highly cellular leiomyoma with mitotic index = 10 something to worry about?
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It is very nerve racking having this hanging over your head and not knowing what the next step is.
Uterine sarcomas are rare. In the United States the incidence is approximately 3-4 per 100,000 women over age 35; they comprise 9 percent of uterine malignancies  
The rarity of these forms of tumors has not led to a large patient population study to identify risk factors.
My wife was diagnosed(Dx) with a rarer from of ovarian cancer called granulosa cell cancer which originates from within the stromal (inner portion) of the ovary. Her form of OV CA has not had a large study either to help with DX and treatments.
Since what you are describing about your pathology report is in a gray area and a Dx is based on several factors from your pathology >.
I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that Dx/ treatment of Gyn cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients, so does there pathology department.  This is not to make you worry even more but to make sure that the Dr who Dx/ treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be.
Here is my example, my wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive (aggressive) and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best and willing to help guide you thru this
Kevin
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