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.

Bumping for you as i would be interested to know as my mum, my aunt and my nan all on my mums side have had it

I don't know about the test just for BRCA but I paid privately for a mixture of about 30 different cancer-related genetic mutations and it cost £395.

@Kittii where did you get that done?

It was through my consultant, but the company was called Color.

I would be interested in this. My Mum had breast cancer in her 30’s and survived and has just had it again - just finished treatment. We don’t have many other females in the family so I don’t have much to go on other than this.

Ages ago I asked the GP and I had to fill in a form about it - was told my history wasn’t significant enough for genetic testing but I could start getting yearly mammograms from age 40. If you are below the age for breast screening you could ask about this - perhaps just an e consult for your GP requesting it?

I would like to be tested for the gene though…. Especially as I have a DD too.

I used www.check4cancer.com

I used a private company and it took around 2 weeks. It tested for 8 gene variations. I think The NHS only test the top 4 most common genetic variations. I have private health insurance which covered the cost but otherwise I think it would have been about £1400

I had my DNA tested by 23 and me. It cost less than £100 and covers a number of medical conditions as well as loads of information about ancestry. It turns out I do not carry the breast/prostate cancer gene which was the main thing I wanted to know. My husband died of PC so I was worried for my sons.

NHS still is very much doing genetic counselling I work is a NHS genetics lab and is very much business as usual.
Though there are specific requirements for testing on the NHS described in this nice document www.nice.org.uk/guidance/cg164/chapter/Recommendations#genetic-testing

Update - I emailed my surgery and after a few questions (on a Friday evening - impressed!) I am being referred for genetic counselling. No idea how long this will take or whether it will include a genetic test so I’m still considering private testing.

I have one older family member who has been having yearly mammograms since 40 due to increased risk but since she was referred to that we have had 2 more cases in the family. I honestly don’t know how I can cope with annual testing anxiety. I have two DDs.

@Essexgirlupnorth thanks for the information, that's good to know that it is business as usual. Based on the guidelines you shared, I think I will qualify as it is 4 relatives (and 3 with linked diseases).

I visited a genetic counsellor many years ago about a condition in my DH's family and future children. The counsellor at the time mentioned investigating the cancer in my family but I said I didn't want to. I'm kicking myself now.

You don't need counselling (yet). You need testing as your worries may be completely unfounded. I cannot tell you how great it felt to know I didn't carry the breast cancer gene.

[quote Essexgirlupnorth]NHS still is very much doing genetic counselling I work is a NHS genetics lab and is very much business as usual.
Though there are specific requirements for testing on the NHS described in this nice document www.nice.org.uk/guidance/cg164/chapter/Recommendations#genetic-testing[/quote]
Yes to this. If your family history is significant a comprehensive NHS assessment is required to ensure you get appropriate care. A private test without such an assessment can be inappropriately reassuring.

Some people are at increased risk of cancer without BRCA1/2 gene changes and would still need extra breast screening.

@CoffeeCake23

I used a private company and it took around 2 weeks. It tested for 8 gene variations. I think The NHS only test the top 4 most common genetic variations. I have private health insurance which covered the cost but otherwise I think it would have been about £1400

You are completely wrong here. NHS testing is comprehensive and may include additional genes depending on need

@Esspee

You don't need counselling (yet). You need testing as your worries may be completely unfounded. I cannot tell you how great it felt to know I didn't carry the breast cancer gene.

Op does need genetic counselling which is discussing her risks, the tests available, how relevant they are to the individual, and whether she would like the tests. It isn't just a case of just ordering a gene test. It's important to have the correct test, and know the limitations of each test to avoid being falsely reassured.

The 23andme BRCA testing only tests for three BRCA gene variants linked with breast cancer, out of 1000s. 23andme website advises consulting a genetic counsellor or doctor particularly if you have a family history of breast cancer. The NhS BRCA testing will cover many more variants than 23andme test. Interestingly the 23andme website says the three BRCA variants they test for are most common in people of Ashkenazi Jewish descent and rarer in people from other ethnic groups - so their test may not be useful in most people.

It would definitely be better to wait to speak to the NHS genetic counsellor op to find out which specific tests may be useful for you. If you find out you don't warrant NHS testing you could look into private options.

I found mine by accident when doing an Ancestry DNA test. I put my results through a website called Promethease, which highlighted my BRCA" positive status. It was then confirmed by the NHS via a blood test.

@WeeFae that must have been frightening. Did you choose to have any preventative treatment?

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 don't know if they will ask about great grandparents. I also have a lot of missing family history.

@ShitShitSh1t Don't worry about missing family history. Usual is to ask about you, your children , your parents, siblings and their kids and your grandparents. The genetic counsellor will be used to dealing with people who don't know all their family details.

Thanks @pasadeda. I just hope the wait isn't months and months.

CoffeeCake23
I used a private company and it took around 2 weeks. It tested for 8 gene variations. I think The NHS only test the top 4 most common genetic variations. I have private health insurance which covered the cost but otherwise I think it would have been about £1400

You are completely wrong here. NHS testing is comprehensive and may include additional genes depending on need

That's just my experience of testing for myself and friends who have also been tested for breast cancer genetics. I am not 'completely wrong' as in my experience the NHS only tested for the 4 most common in several cases.

I agree it would depend on the individual case and personal history.

In my case, under NICE guidance I would only qualify to be tested for BRCA 1&2, PALB and TP53. Under private health care I was tested for additional variations, which confirmed I had a rare genetic variation that causes breast cancer.

[quote ShitShitSh1t]@WeeFae that must have been frightening. Did you choose to have any preventative treatment?

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 don't know if they will ask about great grandparents. I also have a lot of missing family history.[/quote]
No, I am too overweight still for any surgery, so I get annual MRI and mammograms.

Ive recently had weight loss surgery though, so that I can finally get a double mastectomy and ovaries removed.

I had no family history of breast cancer, so it was a complete shock.

@LaLaFlottes the NICE guidelines have changed in recent years so you are most likely eligible now.

At my first appointment I was told to go away and consider if I wanted to continue and to sort out my life insurance. At the moment companies can't ask about genetic testing apart from one disease, that could change though.

Something to sort out whilst you wait for your appointment! Mine took from GP appointment late August to early February to get the results.

[quote RandomMess]@LaLaFlottes the NICE guidelines have changed in recent years so you are most likely eligible now.[/quote]
@RandomMess that would be brilliant thank you for letting me know. I will definitely look into it