If you have a strong family history of Breast Cancer …

[EatenTooMuchChocolateAgain]

Would you want to have / or have you had genetic testing to test for BRCA 1 or 2 genes?

If you did have testing and you were positive for the genes have you had preventative surgery?

There is history of BC on both sides of my family, I’m having surveillance mammograms done yearly since I was 40, I’m now early 50’s.

Im very undecided whether to have genetic testing done, any thoughts on pros/cons welcomed!

100% yes I would

Ignorance is not bliss when it comes to health

My adult child and I were tested for this gene because of mine and my family's history of breast cancer.

We don't have the gene, but because of our family history, adult child has had mammogram since they were 35.

my oldest friend has had breast cancer twice, as have i, but she and her daughter chose not to have the test.

I don't judge my friend for her decision, and she didn't judge me for ours.

each person has the right to choose to know for certain, or to let things take their course. I don't think either choice is right or wrong. Maybe it comes down to if you can live with the uncertainty or not. It's not,in my view, a moral choice where you can say this is right or this is wrong.

We haven’t been tested but not for the want of trying. We all have annual mammograms but my mum (the only one diagnosed who is still alive) wasn’t tested when she was diagnosed. They’ll test her if she wants, but she’s in bad health so it’s not really possible. They won’t test us before she’s got a diagnosis because one of us being positive would mean that she would also have to be positive and she isn’t seeking her own diagnosis. It’s very frustrating.

I chose not to have the test in my 30s, I don't really know why to be honest as breast cancer is so prevalent in my family. I remember thinking that I would do it at a later date and I never did.

I had breast cancer at 52. Was tested then and I have the BRCA2 mutation. I then had my ovaries removed.

Yes I would, I’d want to know for my daughters.

I have had genetic testing twice - first in my mid 20s before I had children, as part of that decision making process. Got negative results for BRCA 1&2 and some other genes. Was tested again in my late 30s when I began asking for surveillance mammograms, and they retested for some genes that had been more recently discovered. Luckily for me all of those were negative but a history of breast and ovarian cancer on my maternal line means I am now getting annual screening. I’d absolutely want to know so that I can make informed healthcare choices.

I have a family history. My husband did too. We were both tested, both negative. It’s a big relief so we don’t need to worry that the children have it

I would 100% do it. No history in my family of breast cancer but I got it at 50. Pure bad luck according to my consultant. However if I had a chance to get in before it, I would have.

I was diagnosed with breast cancer at 36. There was a strong family history but no first degree relatives. It turned out that me, my DF and DSis all had the BRCA2 gene. My DBro has chosen not to be tested.
DSis was refused preventative treatment due to her mental health.
I have three DCs, the youngest was a baby when I was diagnosed. DS1 is the only one over 16 now, he was actually dissuaded from being tested by the geneticist.
Ironically, he already has another, unconnected, genetic condition so would have to have IVF if he chose to have children later on.

Do you regret not having the test?

I'm brca2 and I would recommend getting tested. I don't know how much screening you get now but I suspect you get more if you're known to have brca mutation. I get annual MRI and mammogram and they're very quick to send me for ultrasound/repeat MRI/biopsy if there's anything unusual.
It would also give you the option of preventative surgeries.

I took part in a clinical trial to assess for breast cancers risk via polygenic risk score from a saliva sample.

it came back as high risk >30%
population risk is 10%

obviously my risk is not as high as a brca or any of the other main mutations.

im not eligible for testing for the main gene mutations though as I don’t have a first degree relatives with breast cancer. Although I have 3 second degree relatives affected.

im eligible for annual mammograms and tamoxifen if I choose to take it as chemo prevention.

My mum had ovarian cancer 10 years ago and they asked if she would like genetic testing as her mum died of breast cancer young.

Turns out she has the BRCA2 gene, my brothers test came back negative and I'm waiting for my results.

What counts as a strong family history? Both my grandmothers had breast cancer but my GP said I didn't qualify for testing.

Yes and I did get tested. Thankfully negative but I will have annual mammogram from age 40. I get tested 3 years after my mother had breast cancer and upon the birth of my daughter. As pp says, ignorance is not bliss when it comes to this kind of thing, I lost a friend at 31 to triple negative breast cancer.

I don’t have a family history of breast cancer, but a couple of years ago DM spotted that the NHS was offering BRCA1/2 testing for anyone with at least one Jewish grandparent, as these gene mutations are much more prevalent among people with Jewish ancestry, particularly Ashkenazi. My paternal DGM was Jewish. I signed up for the testing, and found out I had a BRCA2 gene mutation. After genetic counselling, I had my ovaries and fallopian tubes removed last year. I am on the high risk breast screening programme, and don’t intend to have preventative breast surgery.

DB also tested positive, and is on the prostate cancer screening programme.

I am now 54, and was already perimenopause, so having my ovaries removed was an easy decision, but I know it might have been more difficult if I were younger. If we had a family history of breast cancer, I guess my thought process might also be different.

Between us we have three DDs and a DS, only one of whom is over 18, and I don’t know what decisions they might make in the future. I feel guilty about potentially passing the mutation on to DD.

@ChannelLightVessel can I ask about your experience of oophorectomy and surgical menopause? I'm due to have this surgery soon. Currently perimenopausal and on HRT. Were you prescribed HRT post surgery?

My mum had the test as her mum died from it. Test was negative. But my mum has had breast cancer twice since her 50s.

Consultant told her that once you hit 50, your age becomes more of the risk factor.

I am currently waiting for my cancer gene test results as I am Jewish and the NHS has run a testing programme as the risk of having the gene is higher in Jewish people. (It’s my dad’s side who is Jewish)

I had genetic testing on the NHS - after I got breast cancer. I have strong family history, including men and three young women only in their 20s, my grandmother, plus four of her siblings. Even all that made me only borderline for whether they would test or not. I tested negative for known genes - “known” being the correct word.

There are much more significant factors than genetic ones, the main one being increasing age and being female.

But the one I bang on about is breast density. This really matters and is much more significant than genetic links. The denser the breasts, the more likely it is that you will get breast cancer AND the more likely it will be that that cancer will be missed on any screening.

My sister got diagnosed with a hormonal firm of breast cancer over 3 years ago. There's a significant history on my mums side with at least 7 instances including one death. Mu mums father was jewish.i had a genetic counselling type phone call with Sheffield children's hospital. They tested my sister for the BCRA genes, luckily negative. They would only test ne if it was positive. I go for a yearly mammogram as opposed to three yearly due to the family history. I'm 50 this year & have been having mammograms since I was 46.

I meant to add to my earlier post but left it too late to edit - I have had breast cancer three times now in six years and the tumours, even though many centimetres large and many of them all at the same time, were invisible on mammograms. I was only a 32A cup size. Do not rely on mammograms to detect breast cancer.

I have had the testing and would have had breast and ovary removal as my family was complete.

Ovarian cancer still doesn’t have a reliable early detection (or didn’t when I used the service).

I was shocked that the number of folk that don’t go back to their 2nd appointment is so high something like 40%

The detection rate for cancer with mammograms if you have lobular breast cancer and dense breasts is a shocking 12%. So if you have a mammogram, ask about your density score - there is a scale of A to D. They won’t routinely let you know, but you can, and must, ask.

@MardyMillylala you would be entitled to get brca testing via the Jewish genetic testing programme. You just need to have 1 jewish grandparent. Unfortunately I think it's closed at the moment but I'm sure I heard that it's going to reopen.