First family history app

me23xx 2 months ago

2 replies
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Hi all.

my mum had bilateral breast cancer and tested negative for BRCA

my mum then died of cholangiocarcinoma a couple of years later.

my cousin was diagnosed with serous ovarian cancer and tested BRCA1 positive

my gentics counsellor is testing me in case there was sample mix up with mum. She seems to think there is SOME gene change given the cancers mum had (she died at 56)

Tomorrow I’m about to book my first family breast surgeon appointment… im 39.

does anyone know how long this appointment will be? What it will entail?

trying to decide if my partner should take time off work for it or save the time off for the genetic testing appointment.

thank you

latchbrook 2 months ago

Hi me23xx and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies. Responding to you will 'bump' it back to the top of the discussion list again.

Wishing you all the best

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Ali86 2 months ago

Hi -

I only have a partial answer to your question I'm afraid!

I didn't take my partner to my BRCA genetic testing appointment - it may depend how much the genetic counsellor talks about different options, statistics etc after the swab, but in my case this will was quite high-level for the first appointment and I wasn't too anxious. I only had more in-depth discussions about my options when I had a second appointment with the genetic counsellor in light of the BRCA2 positive result. Again, I didn't have my partner along for that.

However, I found the subsequent consultations with the breast unit clinicians more daunting and nerve-wracking as this was to discuss the options in much more detail, so I do wish I'd had my partner along for those in hindsight. (I am 37 and have made decision to have double mastectomy only recently). I will be trying to take my partner along to the breast consultations from now on, if work permits.

Do what feels right for you - if you are nervous, it may be good to have a companion who can absorbs some of the facts more readily than you might, given you may be more nervous or emotional.

Take care

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First family history app