Hi,
I was wondering if I should be asking for a genetic test, the issue has not been raised by my medical team. The reason that I am asking is that I was diagnosed last September at the age of 34 with triple negative breast cancer, but also my dad’s half sister died in 2009 after a 4 year battle with ovarian cancer, she was 37 at initial diagnosis.
Part of my concern is that although I will be screened regularly should it be raised on behalf of my other female relative (cousin) so that she can get into a screening programme?
Thanks
Jen
Hi Jen
Just thought I’d let you know my story, I’ve requested genetic testing - and after lots of battling they have agreed. I was diagnosed at 30, with no family history - I want to know if I do carry the genetic gene so I am more informed, and so are the rest of the females in my family - knowledge is power and all that!
Hope this helps,
Carly x
Hi Jen you could always ask your team or GP I asked about this Im TN too but was told by my BN that they only test for this if you have 2 or more immediate family with breast / ovarian … sisters mothers grandmother.
Im friends with a guy who is BRCA Poss & has connections with the Marsden. He had his mother grandmother
& daughter with breast cancer, He told me that the BRCA Gene does sometimes go undetected due to it going through the male side of families. I phoned a private health advisory line about it & trying to find out how much it costs its £2000 to do it privately which I was so shocked but she took my details & got a consultant to call me He said it was very unlikely in my case it needed to be maternal family connections with either breast ovarian prostrate or cervial… I was concerned as my fathers brother died of prostrate last year & one of my Sisters had abnormal cells (cervial) & was treated all ok now but even with this I was told it was highly unlikely & that its only 15% of BC that are.
Theres alot of families that have history & are Neg … this is the case with the 3 Nolan sisters they were all neg
Mekala X
Hi Jen,
I was diagnosed 2 weeks ago at the age of 33. My mother died of breast cancer in her 40s, my maternal grandmother dies of breast cancer in her 80s and my maternal aunt was diagnosed 2 years ago. I, however, was told I was at no higher risk and that the NHS wouldn’t consider giving me mammograms until I was 35 or 40. I just wish they hadn’t reassured me that way, as even if they’d suggested the BRCA test or that I had to pay for my own private scans, I would have saved up to do it. Seeing my mum so poorly when I was young has really affected me and it was always on my mind. I’m quite angry that they dismissed me so readily. But then again, I should have been stronger and just got on with private tests…!
I’m having the BRCA test. I’ve already decided that I’m having a double masectomy as, if I get through this (touch wood), I don’t want to worry about my other breast for the rest of my life, but want to find out about my threat of ovarian cancer and also have details on file in case my sister or any of my female cousins decide that they want to find out too. Obviously, being in this position it’s very easy to say “yes, I want to know!!” but they might not be ready, or ever want to know…
xx
My mum had breast cancer at 29 and died before she was 34. My paternal grandmother and her sister both had breast cancer. Despite having surgery for ‘unusual’ benign breast disorders at 17 and 20 and 25 years of annual screening I wasn’t considered high risk until I developed breast cancer which I found amazing. If I could turn back time I wish I could have been screened many years ago then maybe I could have avoided what I’m experiencing now. I’ve had the genetic testing and am awaiting the results. Even my oncologist didn’t think that genetics would follow me up as I have no children. Thankfully they have but it all feels a bit too late x
Hi Sandytoes so sorry I cant believe that wouldn’t concider testing you with your family history. Id kick up a fuss you would be tested here in my area with your mum & grandmother, you shouldn’t have to pay for it. My sisters friend had BC & mother grandmother had it too she said to her Doc straight away she wanted double masectomy, said no way was she going through what her mum went through. She has been fine since several years on.
All the best to you
Mekala X
Hi all
As others have said, you don’t usually get genetic testing unless you have at least 2 close family members with breast or ovarian cancer, on the same side of the family. Both my grandmothers had BC (but obviously there was no blood link there), then my mother, then me. It was only after I was diagnosed with BC that my sister was put on the annual screening programme at the age of 42 rather than having to wait until the usual 50. That didn’t happen automatically, she had to ask to be checked. They didn’t take blood tests, just asked her about our family cancer history.
Sarah x
P.S. As usual these days, there are NICE guidelines to cover who should get genetic testing or not.
Hi Jen,
as I understand it the BRCA genes are more likely to manifest as triple negative bc, so I’d definitely ask about it. It’s a worry, but there are other genes that haven’t yet been found. I think all of us need to be passing on the message that you have to check your breasts regularly, and we should also be pushing for screening at an earlier age - especially for women with any family hx of bc.
All the best
xx
i have had the test done not got results yet tho and it was my surgeon that arranged it all i was dx at 41 and my mother was dx over 10 yrs ago now but as i have 5 daughters i wanted to rule out passing something over to them
Hi Jen
i work as a breast care nurse in genetics and have have BC twice including a triple neg one and im a brca 2 carrier.
with a family history such as your you wouldnt be considered to be at a high enough risk to warrant testing… ie to be tested you would normally need 4 BC under age 60 or ovarian at any age over 3 generations or have a first degree (or 2nd degree relative through a male) to be tested.
however more and more centres are using the manchester score by evans… we call it the evans score. in our unit an evans score of 20 or more would mean that we could offer testing… the evans score is based on the kind of cancer and age of onset. however it was recently reviewed and now includes triple negative as a separate category.
with your specific history you would have 25 which would mean that you would have enough points on the evans score for testing.
do bear in mind that the majority of people who are tested no mutation is found… only around 20% of those who fit the criteria for testing are found to have mutations… only 30% of women under 30 with BC are found to be mutation carriers which means that even in your 20s your much more likely just to be unlucky.
your cousin if she is the daughter of your affected aunt should get screening through her local family history clinic she can ask her gp for a genetic referral… even if no mutation is found or you dont want testing she would still be eligible… the screening normally starts at age 40 however their is a research trial called FH02 which will screen annually with mammography between the age of 35 and 40.
mekala find it quite odd your friend mentioned cervical cancer as there is no link with cervical cancer and breast cancer… there is however a different gene which can cause uterine and ovarian cancers and colorectal cancer so wonder if he was just meaning that… the cancers connected with the BRCA genes are male and female breast, ovarian, prostate and pancreatic.
sandytoes your genetics team must have though you were at an at least moderately increased risk or they wouldnt have been suggesting screening from age 35/40 as normal screening is from 47/50. the majority of people do find cancers themselves even if you have screening the cancer may appear after your mammogram and some people are falsely reassured but i can understand how you feel when you have approached them yourself and its all the more difficult when you had a negative experience of breast cancer such as you had with your mum.
loopylou with mum having BC at 29 i would have thought you would have been eligible for early screening from 35-40. interesting comment from your onc… why should only people with children be tested?? such a random comment.
Lulu xx
Aargh - this web site so annoying! I’ve commented once but it’s disappeared! Lulu - I was turned down for genetics testing 10 years ago as they said my sister and I had a poor pedigree! In those days you needed a living relative to compare blood or tissue samples and my mum had died a long time before I started having odd things like ductectasia in my teens. Despite 29 years of screening I wasn’t considered a risk genetically until I developed TNBC 4 months after my annual mammo! X
Loupylou
they still usually need a sample from an affected individual… but i guess you are now that affected individual now.
we wouldnt have offered gene testing to mum even though she had BC at 29 as its not a high enough risk on its own merit and obv your aunts are on the other side of the family… but there is a research trial i have mentioned before called the genetics of familial breast cancer study also referred to as the BRCA 3 trial and they test affected individuals if there are 3 invasive cancers in the family or will test an individual who has bilateral invasive cancer.
duct ectesia doesnt increase your risk of breast cancer that is most likely just coincidental but i can understand your concern.
fingers crossed for neg test results.
Lulu xx
Mum adopted so no history. Just irritated that 29 years of screening didn’t help me ultimately as the cancer popped up between my test in April and Sept. The genetics test outcome will be interesting as my onc open minded but my surgeon felt my genetic risk declining as did my sister who works in breast cancer care x
Thank you Lulu yes I thought this odd too when the cervical was mentioned & thats what initially sent chills due to my sister Yes I wonder if the gene for Uterine & ovarian was what he meant.