Breast cancer gene testing- how much is it to go private?

[hellymelly]

This is for a friend. Her sister is terminally ill with breast cancer, their Aunt died of breast cancer, but they don't know their medical history for one side of the family as their mother was adopted. Apparently the type of cancer that her sister has, and her age, indicate that it could be genetic, but her sister has refused the test. My friend has been referred for an NHS appointment to get the ball rolling but was told it can take a really long time, so is mulling over going private, depending on how much it might be. Has anyone had it done privately?

bumping

Well I had it privately and it was pretty quick.

I have had breast cancer and two aunts on my dad's side had too.

I do indeed have the brca1 gene so have had my ovaries out, (already had mastectomy years ago)

I just went to my gp got a referral, they talked me through it and tested and I got the results about 6 weeks later.

They can be funny about it tho as hey are saying they won't test my dds unless I get my surviving aunt to be tested which seems weird as I had it when I was 27.

Dds are young still but I feel I may have. A fight on my hands.

I think if she gets the referral and they won't test, she can ask them if she can have it privately.

Sorry, I meant I had it on the nhs. What's wrong with me today??

We are in Wales and waiting times for everything seem really long. She has had an initial letter but it stated that their waiting lists were very long and it might be some time before she had the initial appointment. She has young children and is 39, her sister is 41, so she is keen to find out quickly.
If you have the gene then there is no reason to test your aunt, that is bonkers! I hope you can get your dds tested.

She can ring the secretary of the geneticist she's been referred to and ask for a private appointment.
I did that with my initial diagnosis as theeIt was long as my risk so low!
Oh the irony.

I paid for a private test - I didn't quite have enough risk factors to qualify for an nhs test, but went ahead with private as my surgeon (I have breast cancer) referred me and I wanted to know.

It was about £900 for the test itself plus another £300 (can't quite recall) for the consultation with the geneticist. The test still took about six weeks - I could have paid more for a quicker one but it wasn't going to affect my treatment at that point so there seemed no point.

£1200 is rather more than I imagined. I think that would be out of her reach but I will tell her anyway. I thought it would be a few hundred pounds perhaps. Think maybe she needs to chase it up and perhaps they will speed things up as her sister has become extremely ill in a very short space of time.

helly, if that is unaffordable, which is pretty understandable, could your friend go back to her GP and ask for him/ her to write or call the geneticist's secretary and ask for an urgent appointment? Referrals aren't always treated on a first come first served basis. I would think it was extremely reasonable to find waiting for several months unacceptable.

Yes, I will suggest that. She very much wants to know. The research I did online seemed to suggest that it was better for the person with cancer to be tested first, I'm not sure why? Perhaps her sister will ask for it to be done after all, but she is very unwell now, so it is unlikely. Both of them have dcs, so it is also important to find out for that reason as well.