Synchronous Primary Stage 1 - Ovarian/Uterine Endometrioid Adenocarcinoma

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Synchronous Primary Stage 1 - Ovarian/Uterine Endometrioid Adenocarcinoma

by share1234 on Wed Dec 30, 2015 07:01 PM

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I am posting this for others with a similar diagnosis who may be scared and searching for information.

I was 50 years old and had surgery in May 2013 due to a large mass (cantelope) on one ovary causing abdominal distension. Pathology determined it was Endometrioid Adenocarcinoma of the ovary (very large tumor)and Uterus (very small tumor).  Both were Stage 1/Grade 1.

DNA testing was required to determine if they were two indepentant tumors (dual primaries) or if one had metastisized and caused the other.  The DNA test was called 'RedPath'.  The test was very important to determine if it was two separate Stage 1's or Stage 3 (indicating metastasis). The treatment plan would be more agressive for Stage 3, obviously, so very important to stage correctly.

Luckily turned out to be 2 separate independant primaries (both Stage 1 Grade 1).

This is a known rare phenomenon and from what I could find the prognosis is very good.  10 year survival approx. 90%+

MOST IMPORTANT.  Make sure your surgery is performed by a very reputable skilled 'Gynological Oncologist'.  NOT your gynocologist or any other surgeon (even if your not sure if its cancer yet).

I had a good surgeon and had the option to do chemo or not.  Per my Dr. recommendation I went ahead and did 4 rounds of single agent Carboplatin chemo.  Once per month for 4 months. My hair did not fall out.

I don't know if I needed the chemo.  If it was maybe overtreatment. Hard to say for sure.  Still not sure if I should have done it at all.

I should share that so far 2.5 years later I'm still ok for now (knock on wood).  Last CA-125 was 8.

I am just dealing with menopause symptoms now.  I had both ovaries, uterus, omentum, and cervix removed during the surgery. 

Here is one report on snychronous primaries.  There seems to be a few other small studies.

Good luck and I know how scary it is....The stress from the fear while waiting for pathology and DNA testing was difficult.  My approach was to find out everything I possibly could.  I also only had one CT scan pre-surgery to limit radiation exposure.  For follow up scans after surgury I requested MRI instead.  This has seemed to suffice for me so far.

Given the Stage 1 diagnosis I was careful to limit CT scans in order to avoid introducing another cancer years down the road from to much radiation exposure.  Assuming I might survive long term...I wanted to be careful...(knocking on wood again). 

Feel free to ask any questions if you are in a similar situation.  I vowed to help others if I survived this thing.

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