I wonder if anyone else on this forum has a high incidence of post-menopausal breast cancer in their families? My mother’s sister had two types, and my mother three types. Looking at the wider family history, I believe my mum and aunt had at least two if not three out of five paternal aunts who had breast cancer post-menopause.
So far no BRACA genes have been found, although I haven’t yet been tested. I’m currently awaiting surgery to remove a lump which they think is benign but could one day turn nasty. One consultant has told me it is very likely that all that’s going on in my family is age-related rather than genetic. But if anyone else is in my situation, what have you been told?
Sure it could be genetic. There are tons more breast cancer genes than BRCA. Have you been tested for all of those genes are just BRCA?
Thanks for your reply. All I know is I am being forwarded for NHS testing, I’m not sure which genes the NHS test you for.
I was told they can now test for eight genes on the NHS. I’m waiting for results of my test. I am 68 years old.
Hi. I am interested in this too. My mum has had it twice and now I have had it too. I have two sisters so I would really like to know if there is a genetic cause as that information would benefit my sisters (as well as me and my mum).
Those who have been referred for genetic testing, what is the criteria? Is it above a certain number of relatives who have had breast cancer?
Wishing you all well x
I was tested as part of my treatment and found I had BRCA2. Not a surprise given my family history. However I had been under the impression from a GP years earlier that testing is not possible without a relative with cancer. That is the case, likely so, on the NHS but other tests are available, and clearly I wish I had known that and acted on it sooner. The NHS wait was quite a while for 1 female relative, but private testing expensive … except for a test based on saliva (yes a spit test). This is how the Australian health service test for breast genetic cancers apparently, so not some quack thing. At the time I was going through chemo so full details not clear, looking on Dr Google it appears that the test relates to BRCA mutations, but worth a look if you are concerned.
Anyway her spit test said she didn’t have the same genetic issue I have, and some months later the NHS confirmed same result. I hope this helps.
I am sorry to hear you and your mum have gone through this.
It’s a bit of a blur now, but about twelve years ago, when my mum got cancer, following my aunt having it too, I was put in touch with a breast cancer family history department (I think by my GP) at a nearby hospital and I was asked to fill in a sort of family tree. I was told by the end of it that mum could have genetic testing as she had had cancer, but I could not. However, I was put onto an enhanced surveillance programme, meaning I could have an annual mammogram.
Unfortunately my Mum was never tested in the end because she wasn’t well enough to travel to the test centre (another illness, not related to breast cancer) so I will never know if she had the BRCA genes.
The breast nurse rang me recently to say that they are putting me forward for testing. I am not sure why there has been the change of mind, but perhaps the MDT have thought better of it with this lump, which is categorised as B3, or perhaps I get to have the test because mum never had hers. I understand this testing will be fast tracked if my current lesion turns out to be cancerous, otherwise I think she mentioned I have an 18 month wait.
Eight genes - that’s interesting. I wonder if that is nationwide? I do hope so.
Hi, I’m interested in this too. My mum was diagnosed with breast cancer when she was 58, me at 53, & my sister aged 56. I’ve asked the hospital where I was treated for genetic testing. I’ve been referred but they said I may not qualify for it. My sister has private health so she has done a test through that. She hasn’t got her results back yet, but I’m wondering what it might bring up. I’ve had lobular cancer & my sister has ductal. Wonder if that makes any difference.
Thank you for joining in this thread. I am sorry that you have all had to go through this, too. One side of our family has a possible Ashkenazi surname which may be a factor in our being gene tested.
Thank you, this is helpful. And how interesting to hear how they did your sister’s test! I think someone told me private testing here is very expensive but I haven’t checked how much yet. If for any reason the NHS don’t in the end test me, I would consider having it done privately.
What happened was I had one test but it didn’t get to the right lab and we didn’t get any results! So at the next 3 months appointment with my oncologist he said with great glee that he was now allowed to test for eight genes! (It might have been seven - not sure)
We are in Wales where everything is further behind than England usually, so I am guessing that this will be a UK wide thing. I am hoping that he will have the results when I go again on 13th December. We think that the first time the phlebotomist didn’t put the right colour lid on the test tube and that is possibly why no results came through. So let’s hope they got it right this time!
Both my mum and her sister had breast cancer over 60. I was diagnosed with breast cancer (this year) at 43 and sent for genetic testing, and was found to have a mutation of the ATM gene, which increases your risk of breast cancer by up to 30% before the age of 70.
My Mums family had a lot of cancers, but most of them were over 60 years old (about a quarter were under 50) when they had them, but my geneticist said most were likely due to the ATM mutation.
My oncologist told me that some of the mutations they test for now weren’t tested for even a few years ago. I think the reason they sent me for genetic testing was because the cancer I had was rare, and usually found in women 70+.
My sister is pursing the test privately as there is a long wait where she lives, and the only thing to be mindful of if doing it privately is that they test for all known mutations and not just the most commonly known.
I think it’s always worth asking for the test.
Thank you Rach. I’ve never heard of that gene! I am now wondering what tests they will do when it’s my turn, and whether some gene mutations are deemed more risky than others, and that being the case, whether the surveillance varies case by case.
BiRo. Sounds like there was a silver lining to the fact the first test failed! I will try to update you when I find out what I’m entitled to here. Have you any family history of breast cancer?
Yeah, I’d never heard of it either! After I got my test results I saw a geneticist and she explained that what they advise is based on the mutation but also your personal and family for history.
For me they have advised a risk reducing mastectomy on my left side (I think this based on the fact that I’ve already had a breast cancer and mastectomy on my right) but they may not advise my sister to do the same. While I’m waiting for that I will have an annual mammogram and chest MRI.
It’s a lot to take on board but I think it is still worth knowing. I was able to get mine done privately as I’m covered on my partners work medical. My sister has looked at the cost of private and it looks to be about £1200.
Good luck with testing, I think knowing is really helpful for future planning xx
Thank you - that’s really helpful. £1,200 isn’t as much as I thought - while still a lot, I got the impression it was even more than that. I am so glad for you that you are being offered the mammo and chest MRI.