Is there anyone else on this site who was on the ukfocss study ( UK Familial Ovarian Cancer Screening Study?

[Amanda-Jane]

[Whippit]

I'm not on the trial - but thanks for mentioning it as I was then able to google it to learn more. Interestingly enough I went to a lecture at Cardiff University last night that argued against screening for breast cancer. It's thought this screening alarms women and leads to procedures that don't need to be done.

It did occur to me it's good to review whether screening is beneficial to reduce disease and death because if it's not the money would be better spent on research to find a cure.

It's good you're taking part in such an important trial.

love Annie xx

[ladygooner-uk]

Hi Amanda Jane

Both myself and my family have completed questionnaires, and I had bloods taken for testing, I can't remember which study it was for though. My sister wasn't asked to be tested, so I guess that meant it wasn't the brac/ genetic cancer- I think.

Sue

[sweetpea]

Hi Amanda Jane

My youngest sister and I were both tested and proved positive for BRAC1. Our families were offered tests, but it was also explained to them that this could be detrimental to them, even if proved negative. Something to do with insurance. My daughter was tested and proved negative, but will be monitored later in life. I dont know if this is helpful to you or not but it was never called a trial and no mention of trials was made to myself or my sister.

love Ann xx

[Hidden]

I was on this study prior to diagnosis. Why do you want to know?

[Amanda-Jane]

I only asked because it would be nice to know if anyone else got their diagnosis because they were on the UKFOCSS.

My diagnosis was eventually made after having elective surgery to remove my ovaries and fallopian tubes due to a slow rise in my CA125.

I believe if I hadn't been on the study I might not have known I was poorly as I had no obvious symptoms for OC.

I was diagnosed stage 2c, high grade serous OC. I had a small tumour in my ovary and another tumour in my fallopian tube on the same side.

I then had a full hysterectomy followed by weekly treatment on the ICON 8 trial.

I am now 8 months into remission.

I was tested for the BRAC1 and BRAC2 gene after my diagnosis and tested negative.

Regards,

Amanda xx

[Hidden]

I too was diagnosed as a result of being on this study. I wasn't as lucky as you in terms of staging (I was 3b, grade 3) but am so grateful that it was picked up when it was. I had low volume disease, which meant that there was litttle to see on the ultrasound. All I had was a rising CA125. I only found out after diagnosis that I was BRCA1+.

I was diagnosed in 2006, relapsed in 2010, and have been in remission since.

I has been hard to take it all on board, but it could have been so much worse. I constantly remind myself of that fact.