BRCA breast screening protocol

[Carpediem68]

Hi All

I was diagnosed with OC in Oct 2021 and told I was BRCA in Feb 2022. I had a mammogram and ultrasound a year ago and an MRI 6 months ago but no mammagram or ultrasound has been booked for me going forward, only MRI once per year. I had been told I would have all three once per year. My hospital is telling me different things. If you have the BRCA mutation do you mind letting me know what your screening protocol is? Do you have MRI, mammogram or US - or all thee - and how often?

Many thanks

[Lyndy2]

Hello, you should be on the high risk screening programme for annual mammograms. I don’t get an MRI but that’s because the horse bolted already! x

[Carpediem68 in reply to Lyndy2]

Thanks Lyndy. When I had my breast ultrasound scan last year they found a few small cysts which didn't show on the mammogram so not sure if I need Ultrasound too or not. It seems the hospital isn't sure either ...

[AnaJim]

I do a yearly mammogram and MRI scan as part of my screening. Confirmed BRCA1 April 2022 but I have been in the high risk programme since my 20’s due to Breast and Ovarian cancer due to family history on the maternal side. I wasn’t offered a genetic test until I was diagnosed with OC in September 2021.

[Carpediem68 in reply to AnaJim]

Hi Ana

So sorry to hear you developed OC despite being on the high risk programme! It seems strange not to have been offered a genetic test! Thank you for your info and best of luck with your OC treatment x

[AnaJim in reply to Carpediem68]

Thank you Carpediem xx

I had an appointment with the Genetics Department probably ten years ago. They didn’t offer a genetic test despite my strong family history (mum and aunt), I really don’t know why! When I went back last year and the genetic mutation was confirmed, I felt guilty for not chasing this earlier but I feel I wasn’t given the right information or follow up.

I wish all the best with your treatment too! xx

[Kjpip]

I was told that high risk screening involves different things depending on your age:Between 30 & 40 - yearly MRI only

Between 40 & 50 - yearly MRI plus yearly mammogram

Age 50+ - yearly mammogram only

They said this is because the mammogram doesn't reliably pick up any issues until you are older, ie 50+ so once you reach that age you can rely on just the mammogram. (Although you say your US picked up cysts that the mammogram didn't so I don't know!)

I was diagnosed as BRCA2 early in 2022 and had both an MRI and a mammogram later in the year when I had just turned 49. This year I will just have turned 50 by the time it's due again so I think the plan is that I'll just get a mammogram this year.

It really doesn't help us when we get all this conflicting information does it?!

[Carpediem68 in reply to Kjpip]

Thank you! Yes, it seems my hospital departments are saying different things so I don't know. Thanks for your info. x

[Trickysite]

I am also confused. Aged 77 and had breast cancer 20 years ago, now OC. BRCA2. NHS letter advised Yearly mammo and MRI but last year my Gynaecology onc advised only mammo, don’t know why. I will have to ask this year again to clarify.

[Carpediem68 in reply to Trickysite]

Thank you. Yes, it seems different trusts have different protocols. Thanks for letting me know x

[delia2]

I’m sure n the US and the protocol is alternating every six months between mri and mammogram. I think the ultrasound is necessary if you have dense or cystic breasts.

[Carpediem68 in reply to delia2]

Thanks Delia x

[Lovecats7]

I too am in the US and my protocol is alternating every six months between MRI and mammogram.

[Carpediem68 in reply to Lovecats7]

Thank you for your reply. yes, that was what I was told initially hear in the UK but now it seems no one is quite sure. Good luck with your future screening. x

[ZenaJ]

Hi there, I have BRCA gene and have a mammogram every year. I was diagnosed with BRCA about 5 years ago after requesting to be tested and OC in 2013. I'm not tested for anything else.

I hope all goes well with you. Zena x

[Carpediem68 in reply to ZenaJ]

Hi Zena

Many thanks for letting me know. Have you considered prophylactic mastectomy at all? Great that you have been cancer free for so long! Long may it continue! xx

[ZenaJ in reply to Carpediem68]

Thank you. I wasn't offered a mastectomy as they said the odds were that I wouldn't get breast cancer at this late stage. They did offer my daughter a mastectomy but luckily, she is BRCA free. The mammogram is purely a peace of mind thing, I guess, especially as my GP didn't spot the OC.

Take care, Zena x

[Doglover1410]

hi I’m am BRACA2 and only have yearly mammograms x

[Carpediem68 in reply to Doglover1410]

Thank you x