Daughter at risk

[3Ryeburnwalk]

My daughter is 30

When she was a child we went through genetic testing at the Christie Hospital as her paternal great aunt and paternal aunt had both died of ovarian cancer and her paternal grandfather had died of prostate cancer

The conclusion was that my daughter is 50% more likely to get ovarian cancer than the general public

The genetic consultant said that when she was 30: she should start being screened and he was sure that by that time ie 25 years there would be national screening. The time is here but with no national screening we do not know what she can do to ensure she is monitored and where to go?

I would be grateful for any help as I am very worried as she has a distended abdomen which she says is bloating.

We live in Manchester England

[Tulips66]

Hi, I can understand as a mother of two daughters myself how worried you are. I am in Ireland, but unfortunately as far as I am aware there is still no definite way to screen for ovarian cancer anywhere in the world. The CA125 blood test on its own cannot be used for screening because some women like myself have high readings when diagnosed & some women dont. Was your daughter tested for Brca? In my case when diagnosed in 2019 I had a genetics test which after, having to wait, a very long time for results due to the pandemic were negative for Brca 1 & 2, so my girls are at no higher a risk of getting ovarian or breast cancer than anyone else. I was so relieved as they were my main concern, not myself. They were only 19 & 16 yrs at the time. I think the only way for your daughter, if she is a high risk is prevention & that is something she would have to discuss seriously with the health professionals as its not something that can be done lightly. Ovacome I am sure can give you some information on all this if you contact them. Otherwise maybe try & encourage her to go to her Gp about the bloating & if he/she is worried they will send her on for scans. It will give you & her some peace of mind. 🤞It will turn out to be nothing.!!!!

[3Ryeburnwalk in reply to Tulips66]

Thank you for this

Anything we do is going to take months and months on the NHS so I looked up Private screening and there are many adverts for it I am just not convinced that’s the right route as I have read that ultrasound wouldn’t be accurate

She did not have the Brc test as she was so young but at university she had some gyni problems and when they knew about her history they did do tests and there were no tumour markers then.

Why do I think that if this was a male problem it would have been sorted?

[Tulips66 in reply to 3Ryeburnwalk]

Personally I think the way to go is to get her to go to her Gp. The only symptoms I had was a discomfort in my pelvis & eventually bleeding so when I went to my Gp she took a blood test straight away to check my CA 125. The results came back 2 days later & it was nearly 2,500 but those markers didnt mean anything as there can be other reasons for a high reading. She then referred me to a gynaecologist 2 days later, who did an internal & biopsy as he could clearly see I had a tumour. All these things together were enough for him to diagnose me with cancer. After that I had an Mri & Ct scan to determine which gynaecological cancer I had, so this is all a process that hopefully your daughters Gp will start if he /she thinks something is not right. A genetics test can be something that can be done later if she does happen to have OC but definitely start with her Gp. I was stage 3c with only 2 symptoms so if she has OC the quicker its detected the better chance she has. Good luck & hopefully your worries turn out to be nothing X

[Joanne59]

if it was my daughter first thing GP tell of history and ask for a CA 125 blood test. I know it’s not always the true answer but it’s a start. Then ask GP for a scan if long wait I would pay privately to be as quick as possible.I still think with your family history your GP would fast track you on a 3 week referral. Good luck xx

[wendydee]

if she looks on the ovacome.org.uk site, there is a symptom diary on there. She can fill this in and take it to her GP, who should take the necessary steps to refer her, given her genetic results. The site also has details of a helpline she can ring for advice. Wishing her well in her quest for information.

Wendy xx

[delia2]

I think it’s likely you have some kind of genetic predisposition in your family, if not BRCA then another one. Does the Christie have a genetic counseling program? I would start by asking for a transvaginal ultrasound and CA 125 test. Even if those are normal I would seek genetic testing and counseling. Although it’s in the US you might look at the FORCE website which deals with different genetic mutations. I have PALB2 which was only discovered in 2014. Good luck.