My Ovacome
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I don't have the gene but it's 100% genetic.

Hi

Diagnosed with OVCA in August 2016. Have been tested for BRCA and RAD mutations but negative. The oncologist professor says it is still 100% familiar cancer. My mum died of OVCA. My 22 year old daughter has been offered surgery to remove ovaries after she has her family. Anyone else in this situation?Anyone tested for other less well known genes?

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hi there

my test shows 16 genes tested, one found - brca1. there's lots of different test panels with different number of genes.

your consultant must request complete genome sequencing to see any mutations. those previously insignificant or unrelated become associated with cancers every time.

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Hello...I think there are more and more people who clearly have something hereditary going on but don't test positive for the mutations they currently know about. This area of research is developing so fast that there are often glitches like this...no doubt they will catch up eventually. Good that you and your family are being treated as having hereditary cancer with all the help and checks in place. xx

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Hi ,I too was disagnosed with OVCA in 2015.My mother,grandmother,her sister all died of OVCA. I have been tested for the BRACA gene.It came back negative.I have two daughters and two little grand daughters.I still am fearful for them.I was told too that there could still be a faulty gene.

My girls have been offered Scans and CA125 testing from the age of 38.They re still only 36 & 33.

I m currently having tests for a reoccurrence.Bloating and bowel issues.Results on 30th Aug.

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Its wrong that people only tested for 2 brca genes and now complete panel with such family history as yours.

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Thanks for your reply. Really hope your tests come back negative.

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Hi sadly they ve come back positive,tumours on my bowel not in it.Starting chemo again a week Friday.It is not curable but hoping for remission and a few good years. Devastated.

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I hope you got on ok today x

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Hi Susan,not good news.Its back on my bowel in lots of places.Start chemo a week next Friday.It is not curable,just trying to buy some time.Carboplatin/Caelyx this time.We re devastated.Only finished Carboplatin/Paclitaxol 14 months ago.

Thankyou for remembering.

Sharon

XX

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Hi there Sharon

I hope you are ok... you know that the next lot of chemo is an excellent duo in killing the ovarian cancer! I've heard many many women who have secondary and who have had this combo and have gone into remission for over ten years!! I have faith you are going to be ok! Remember to take your med's for constipation avidly and remember to take a deep breath! 😊🙋💛

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Hi Susan Thankyou for your reply.It is so reassuring to hear.I have found so much comfort from this site.Thanks again,will keep you posted.

Sharon 👋

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Hi Dramaregerbil,

I had genetic testing done on 23 genes. I'm in the US, being treated at Dana-Farber Cancer Center in Boston. A mutation was found in the NBN gene, which increases the risk of breast cancer by 30 percent. It may also increase the risk for ovarian cancer, but scientists still aren't sure and so are continuing to study the outcomes for women with this mutation. If a man with a mutation in the NBN gene gets prostate cancer, it is likely to be an aggressive form. This mutation occurs more frequently in people of Eastern European heritage.- My father's parents were from Poland, and so I think that I inherited the mutation from his side if the family. I was also found to have what they call a Variation of Unknown Significance in the RAD50 gene. Time will surely tell us more about the NBN mutation and other new ones. Don't be discouraged! It is wonderful that your daughter will be watched carefully now. My sister is now having her CA-125 measured because of my cancer, and she knows what symptoms to look for. All my best wishes to you!

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Thanks for your reply. I'm now been tested for 3 other genes and Lynch syndrome due to comments from here. X

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Thankyou for your reply,I shall keep you posted.Sending best wishes.Sharon

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I too, tested negative for the well-known genetic faults but with a family history of OC and breast cancer I have been told it is probably attributable to a genetic fault not yet known about. My results letter also contained a recommendation for my 3 daughters and sister to have BSOs when they have completed their families.

I have participated in the 100,000 Genome Project but as yet have not heard anything back from the research team.

Sandra x

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Thanks for this. Is that project now finished?

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