Hi all.
my mum had stage 3 bilateral breast cancer, she tested negative for BRCA, my mum then died of cholangiocarcinoma a couple of years later.
my cousin was diagnosed with serous ovarian cancer aged 39/40 and tested BRCA1 positive
my gentics counsellor is testing me in case there was sample mix up with mum. It’s not like they can get another sample.
She seems to think there is SOME gene change given the cancers mum had (she died at 56)
I’ve booked my first family breast surgeon appointment… and its on Monday. Over the past 6 months I’ve been moderate increased risk, then high risk (while we wait for cousins genetic results) then back down to moderate
its a virtual consultation, does anyone know how long this appointment will be? What it will entail? Did anyone manage to get a mammogram aged 39 or did you have to wait until you were 40?
I’m really glad to get started on this after seeing mums journey, I’m grateful that I have the opportunity to be checked, but also nervous and don’t know anyone in a similar situation to talk too
thank you
Hi What a challenge you are facing. I am BRACA 2 and this was found out as my sister pushed for a genetic testing. My other sister died of Ovarian cancer without being tested.
I can only suggest you push for a mammogram. The ovarian cancer route can also be tested. My question to whoever would be why not?
All the very best
Hi me23xx , welcome to the forum, I just wanted to pop in to say hi and also to relate my situation which may have some bearing on yours. My mum died from breast cancer at 53 but this was over 35 years ago so no genetic testing. Her aunt also died from breast cancer. I then got hormone positive breast cancer (as was my mum’s) at age 59. I asked at the time whether there could be a link but was told not because inherited breast cancer tends to be triple negative. However I asked again re genetics testing at my 3 year follow up (with a different breast surgeon). He agreed to refer me and many months later I found out that I have a pathogenic gene (ATM) which carries a moderate risk of breast cancer and apparently is probably why I got it. It also increases my risk of contra lateral breast cancer (in the other breast) but not enough to get increased screening, because I’m older. But if my daughter has it she will be offered mammograms from 40. So I just wanted to say, do check that they are not just testing you for BRCA. There are other genes to be considered nowadays.
I can’t answer re getting a mammogram at 39, sorry. Re the virtual consultation, I’m not sure how long they’ll allow for that but I’d definitely have a list of questions ready (which you probably have already!).
Good luck with it all and let us know how the appointment goes. Love and hugs, HFxx
Thank you for your response.
i don’t want to complain because i know right now im not facing a diagnosis but its hard to know what might happen in the future.
i am definitely going to push for a mammogram and if they won’t give me one before my 40th im going to ask for one on my birthday, it will truly be the best gift i can give myself!!
i constantly check my breasts but i have no idea what im feeling for really. I am hoping that i can have a face to face soon after the virtual appointment but we will see
I had a scan last week and they have found a hemmoragic cyst but say it’s highly likely to be benign, my ca125 is normal and I have a second scan in 10 weeks.
im sorry to hear of your diagnosis, do you feel better now you know? Empowered to have choices?
thanks for responding I appreciate it x
Thank you, I try not to cry because I think if I start I might not stop
everything has been VERY-crazy, and I’ve struggled to get to the point I am now tbh, the GP surgery have not been helpful and whilst to me… breast cancer and BRCA are huge on my mind it doesn’t seem to be a big thing to them.
i finally pushed for an appointment to talk about this with a GP and she has been fantastic.
my mum had 3 aunts and a cousin with breast cancer, they were not tested either.
now my cousin has had the testing I’m anxious to get moving.
i think the genetics counsellor said she will test for BRCA and then if that’s negative look at other things, cholangiocarinoma does seem to be related to breast cancer so I don’t know
i think my main questions are:
how soon can I have a mammogram
how often can I have a breast check
i want to talk about tamoxifen because I know from the genetics letter I might be offered it, but my mum was scared of the effects of tamoxifen and I don’t know much about it.
thanks for responding I really appreciate it.
how are you now? I hope you are in a positive stage of your diagnosis
Is hormone positive eostrogen dependant?? That’s what my mum had and my cousins ovarian is eostrogen dependant too
to try and do SOMETHING I’ve given up dairy …. Oh how I miss normal cheese!
sending positive thoughts.
thank you again
Hi me23xx , yes you’re right, hormone positive is the same as oestrogen dependant. And thanks, yes I’m nearly 6 years past my original diagnosis! So that’s very positive.
I’m sorry the GP practice have not been helpful, but very glad you have now connected with a good GP. It does sound like things are finally moving forward. Keep going!
I know just what you mean about crying, I’ve often felt that it’s a bit like a flood gate…. But I think it can help too, though, as a sort of release. I found that Hopi saying and use it as my ‘signature’ here. Xx
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