10 years later non BRCA ovarian cancer

Cathya · 02-13-2016, 05:13 PM

Hi;

I have the results of the genetic testing for BRCA1 and 2. I apparently have a BRCA1 mutation of uncertain clinical significance. I am to call them back in 3 years to see if they have any further information. It's located at C.2397T>A and converts an asparagine to a lysine at Codon 799. So no genetic testing for my daughter as at this time there is nothing to worry about genetically. So that's good news.

By the way, I wanted to mention that the reason my ovarian cancer was caught so early was because I had a little bleeding apparently caused by taking Arimedex for 7 years. Thank goodness for thickening of the womb.

Thinking of all of you.

Cathya

AlaskaAngel · 02-14-2016, 10:43 AM

Cathya, I admire your focus on trying to find any pieces of the puzzle! I will throw in the odds and ends from my history in case anything from it helps, even though mine is (thus far) negative for OVCA. I also wonder whether your initial bc dx was HER2 positive?

I participated in the 10-year national trials for early detection of bc and early detection of OVCA because I had so many direct relatives who had been dx'd with bc, and one who possibly died of OVCA. The trial required annual abdominal ultrasounds, and periodic lab draws. The purpose of the lab draws was to try to come up with more accurate testing for OVCA. The 10 years ended in 2015. I don't yet know the details of the trial results, but am happy I participated despite the hassle involved with having the yearly ultrasounds done in Seattle on my own $ (since I live most of the time in Alaska). I am thankful that the investigative team in Seattle were supportive of my participation throughout the years -- especially the nurse coordinator there, who worked with my logistics to make it possible.

I received genetic counseling as part of the trials, and although testing for BRCA 1 and 2 was not common when the trial began, I chose to be tested, and my test results were similar to yours. I also chose to have blood testing on my own for completely separate research that was sent to an east coast research project to try to develop a better blood test for OVCA.

There just is no way to know who might be able to contribute some essential bit of information through participation in clinical trials.

Following up with testing was so important in your situation. Thanks for that reminder to us all, and best wishes to you!

A.A.

Cathya · 02-14-2016, 05:35 PM

Hi A.A.

My original breast cancer was ER+PR+ Her2++ borderline with no positive lympth involvement but a tumour in my supraclavicular node. The tumour was very aggressive and I received AC and Taxol, herceptin, arimidex and actonel.

I am hoping that my comments here will be an affirmation to all to be ever vigallent in the fight an I hope my genetic results will help somehow.

Take care,

Cathya