Private BRCA testing - anyone done it?

[ShitShitSh1t]

I found out today that yet another relative has been diagnosed with breast cancer. My DM passed away from it last year. I tried to make a GP appointment to discuss genetic counselling today but was told there are no appointments available and to try calling next week. I'm terrified and not confident that genetic counselling will even be available on the NHS due to covid.

I've been looking into testing privately and it is available in a couple of hospitals locally. They don't have any cost information on the site. Has anyone done this? How much did it cost and what was included? If the result was positive can you get treatment on the NHS?

Thanks.

For those that have done NHS risk assessment, how many generations do they ask about? There are 3 cancer cases in my DM's generation and 3 in her grandparents.

I was identified as high risk for breast cancer by ther NHS and started having annual mammograms from age 40. It wasn't necessarily the number of family members with breast cancer they focussed on but rather the ages when they got cancer. So, for example, my mother first had breast cancer in her 30s and she had it 3 times before she died with it aged 51. Her sister also developed breast cancer in her 40s.

Hi OP. I am going through genetic screening for the second time (I am mid 30s and the first time was about a decade ago). I was referred by the breast clinic as they thought it worth having another check now that things have moved on in that area.

Have any of your family members already been tested? It’s quite usual for those tumours to be tested, so you would have some idea, for example, what the characteristics of those tumours were.

As someone else has said upthread, age of onset is also significant, so young primary cancers are potentially more interesting to them than multiple family members who are older. Usually they go for screening from 5 years younger than the youngest relative.

It’s not a quick process on the NHS, but it is thorough.

Thanks for all of these very useful responses. The youngest member that I know of is my DM at 49. She had a recurrence in her early 60s and died at 65. As far as I know, everyone else was over 60, but I can't be sure.

I know my mum had hormone receptor positive cancer and quite a rare type which responded very well to treatment at first. As far as I know she was never tested for a genetic cause.

Her youngest sister (in 50s) has been having regular screening since she was 40 due to having 3 cases in her grandparent's generation (3 siblings) and my mum having it. Now another aunt has it (60s).

I'm just so frightened as I have 2 DDs and can't bare to think of them going through the hell I went through watching my mum get ill and die. It doesn't help that I drank for too much for most of my youth and am overweight (I'm working on that though).

I can't live with this anxiety

Oh and I have huge boobs. I'm wondering if getting a reduction could reduce the risk. It's something I've wanted to do for years.

My Mum got ovarian cancer in her 70s but her sister died of aggressive breast cancer in her early 40s so my Mum received genetic testing. Not aware of any other family link though.

I have to say the 6 week wait for the results was one of the worst things I've ever experienced being that I have 4 DDs

Update:

I went the NHS route and after a bit of back and fourth I got a letter today. It said I was considered high risk and have been referred to the breast unit for early mammograms from age 40. That's it. Nothing about how my risk was calculated or any further information. No one to discuss it with. I'm really upset as I was at least hoping for an appointment to talk about it with someone (thought that was the point in genetic counselling).

I can't cope with the thought of scan anxiety every year.