Family history clinic

[Mell]

Hi lovely ladies my daughter has an appointment at the family history clinic tomorrow to assess her risk of bc. I'm absolutely terrified for her as her risk is greater with 2 generations of bc. Sorry just needing to have a last minute panic and wondered if anyone else has any experience of this clinic?

[Rattyp]

I have had to be tested for BRACA1 & 2, got to wait 6 months for results. I have a daughter but she is only 10 so if it is positive I have a long time to prepare myself for telling her. I do however have a sister Scary times ahead so I do empathize with you. Good luck and keep us posted x

[Nixh]

Hi Mell, I've been part of the family history clinic since my mum died in 1991. Have never had the gene test even though classed as high risk due to my mum and two of her sisters having it.   We initially had a meeting with a consultant to discuss what we wanted to do (I have an older sister). (We decided we didn't want our lives ruled by bc so went with what I've said below)

Was a while ago now (I was 17) but think we were told we would be monitored with yearly mammograms from the age of 25, luckily we were also offered MRI scans when I was about 28. So around our birthdays we go along for a mammogram then straight to MRI. 

My bc was found after my annual screening last year and as have said before I had two lesions in one breast one was found via mammo and one via MRI. The MRI one couldn't be seen on the mammogram or later via ultrasound so if she can she should try and push for an MRI scan too. (Depends on the local authority etc). 

Things may have changed in regards to frequency of visits and gene testing but ultimately it is up to her if she has it they can't tell her to have it. 

They're very friendly and helpful in my experience are you planning to go with her? Always good to have another set of ears there to listen to options etc. 

I know it's scary but it's a positive thing that is worth doing, it hasn't ruled my life one visit a year, which ultimately saved my life as I wouldn't have felt my lumps as they were tiny! 

Hope she gets on ok 💖

All the best,

Nix 

Xx

[elainemaria]

hi yes i have had genetic counselling and a new ambassador for the 10 000 genomes project at MRI St Marys. l have 7 females in my family who have had BC over 3 generations. One family member who hasnt had BC went to the family risk clinic. it is a discussion and they did a family tree. they offered options ie mammagram or medication. if your daughter is younger the options may be different. i believe knowledge is scary but also can get you onto being observed. it can be a relief also. so dont be terrified be empowered. i know its hard after 2 years of ops and treatment i get fed up but im alive and looking forward to a better life. Good luck. 

[Saralouise]

Hi, I went to family history clinic this week. The lady was very good and knew her stuff. She explained that they can only test for Brac 1&2, but if there is strong lines they have further trials etc. I have strong lines of cancers on both sides of my family but she said it still may not be Brac. They take a small blood test and the results take about 2/3 months. I hope this helps and your daughter gets on ok xxx 

[Mell]

Thank you lovely ladies for your advice and support. We were told that Lucy is in the high risk group of women who would develop bc due to me and my mum having bc but because non of my siblings or their children have been diagnosed that reduces her risk a little. They are going to offer mammograms from age 35 (she's 27) unless anyone else in the family develops it before then at which point they will review. They said they wouldn't offer the Brac 1&2 blood tests because it's only a small minority that carry the gene. Not entirely happy with everything that was said but am seeing my oncologist for review next week so will ask her.

[Hidden]

Hi Mell. I don't know about these clinics but am waiting for my daughter to go see advisor - like you and yours 2 lines. Still waiting for appt.  you cope when it's yourself but likewise with your own children the head takes over from reality. Hope all will be well for both of them and us. Xx matilyn

[Mell in reply to Hidden]

Thanks Marilyn I came away feeling a bit deflated from the appointment. I had built myself up to it being the worse news ever and it wasn't. Yes she's in the higher risk group but they will start monitoring early at 35 so another 8 years time. I hope all is well with you and yours, stay strong xx