In 2005 I was diagnosed with borderline mucinous ovca (LMP). I was 32 with no children, so my gyn/onc in Boston suggested we remove the ovary, tube & appendix and follow up with ultrasound and CA125 regularly for the next few years.
On Monday I had a laparoscopic cystectomy to remove a probable endometrioma from my left ovary - it was 4cm. I received the path report today and it has come back as a benign mucinous cystadenoma. I am now living in South Afirca and had the surgery with a gyn/ob - I have not been able to find a gyn/onc as yet - should I??
Should I be concerned that the tumor is mucinous again? I thought mucinous tumors were generally only found in one ovary, not both.
I have since had a baby and although my husband and I would like more, we are more concerned for my long term health - do you think we should be thinking about a hysterectomy? I just don't want to be looking over my shoulder for the rest of my life if I am a high risk factor for ovarian cancer but also dont want to be paranoid and over react.
Besides my own history, my aunt (mother's sister) died from ovarian cancer.
Epithelial ovarian tumors are classified by cell type and by malignant potential.
So tumors are grouped as
and within these 3 subtypes , the different cell types are:
brenner /transitional cell
undifferentiated (only for invasive category)
some tumors have all 3 subtypes -benign,borderline, and invasive) and some tumors have a mixture of cell types.
Very broadly speaking, mucinous tumors are usually unilateral at presentation.And that was your experience. But later in life you can develop a new tumor unrelated to the one on the other ovary.
It sounds like the pathology from your second surgery was benign.
So the first thing I would suggest is having that pathology reviewed. It may be expensive but you could send the slides to Boston so that this tumor can be compared to your previous borderline.
Since recommendations are being made based on the pathology report, it is pretty important to be sure this is a benign tumor and not a borderline or invasive tumor.
Now if this is a benign tumor, then by all means - have more children and preserve the ovary. If this is a borderline tumor, you have a very high rate of recurrence if you preserve the ovary. However it is still possible to delay definite surgery, have more children and then remove the ovary.
If this is an invasive cancer, you need a full hysterectomy now.
I agree with JR. We do not have data to suggest that these tumors are hereditary. However, my feeling is that if you personally have made 2 ovarian tumors, you will most likely make more and ultimately, you should consider the removal of your ovary and fallopian tube. The removal of the uterus will depend on if there is any abnormality in the uterus or any sign of malignancy.
My wife (36) has had a recent diagnosis of Mucinous CA which was in both ovaries. I haven't read anything myself that suggested that Mucinous was usually confined to one ovary....
My wife had a hysterectomy straight away which we hope has removed any remaining disease. We do have 2 children and were thinking about a 3rd but decided that her health was more important. In Mucinous the recovery rates are excellent if you catch them early.
One thing I read recently was that Mucinous CA was typically not hereditory, I can't remember the source but if I can find it, I will post it.
Good luck and I hope you find the specialists you need. I think that this is a definate priority.
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