BRCA TEST?

Hello again - Is the BRCA test available on the NHS? my insurance company say they will not cover it because my specialist has not recommended Olaparib for me. Many Thanks Lyn xx

[Yoshbosh]

Hi Lyn,

I had my BRCA test on the NHS. It would be worth you asking your GP if they could help(I’m assuming you only see your oncologist as a private patient?).

Vicki

[Hidden in reply to Yoshbosh]

Hi Vicki - Thank you, yes I see the oncologist as a private patient. She wants me to have a BRCA, my doctor says I would have to have close relatives that have had breast/ovarian cancer to qualify for the genetic testing?

[Juleswhee]

Hi my BRCA test was done on request of my oncologist . They just took my blood on a day I had chemo . I did have to have counselling with my CNS first and sign to say I knew the implications so definitely on NHS. Xx PS, hope your doing OK .

[Hidden in reply to Juleswhee]

Hi Jules - yes thank you doing fine, although finding my way through the minefield of private health cover and the NHS a mini headache! How are you? Lyn xx

[Juleswhee in reply to Hidden]

Doing well ,last lot of second line chemo next week, hopefully it will do the trick.xx

[Hidden in reply to Juleswhee]

Good Luck - everything crossed for you! Lyn xx

[Coldethyl]

It isn’t routinely available on the NHS for ovarian cancer though I think if you’re high grade you’re more likely to be offered it - I have endometrioid ovarian c and only 5-10% of women with it have BRCA gene so I’ve been told I’d need to do it myself at present though I guess if I needed more chemo etc oncology might reconsider need to find best treatments - my onc reg did try and find me a place to be tested but the Christie no longer offer it out of house to paying people ( or so reg said and she’s just worked there) and the centre at Birmingham said I was out of area and could only suggest an online test which didn’t float my boat much - as PARP use expanding to non BRCA and even those with my subtype I’ll wait and see x

[Maus123 in reply to Coldethyl]

Same here. My onc at the Royal Marsden at the time said I would not get it paid for because my tumour type wasn't high grade.

I had it done on my own instead.. well, the poor man"s version anyway which may or may not be sufficiently thorough and accurate (sent a saliva sample to a genetic analysis service over the internet: they tested for 3 BRCA mutations).

So long. Maus

[Katmal-UK]

Hi Lyn It is but there is criteria you have to meet. A family history of cancer (not just Breast/Ovarian), this can include prostrate. My son has just been tested because of my history. I was tested because of family history. Unfortunately my mum wasn't been tested (by means of checking her stored samples removed during ops ) until after her death and found to have the faulty gene. You will need to undergo counselling though - although I said I didn't really see the point as I obviously already had cancer but there is a chance you may have passed it on if you have children and I have to admit it's tough knowing I have passed this on to my son though the flip side is he will be monitored at a much younger age. Kathy xx

[Hidden in reply to Katmal-UK]

Thank you Kathy - do you think aunts and uncles are classified as family history?

[Katmal-UK in reply to Hidden]

Hi Lyn, in the space of 4 years ( one a year almost to the day) I lost my aunt ( mums sister) my male cousin (son of said aunt) , female cousin ( daughter of said aunt), my mum and a few weeks later another female cousin who was a daughter of another maternal aunt . So Id say yes. xx

[Hidden in reply to Katmal-UK]

Maybe I will qualify for the test then, my Dad was one of 9 and 5 of his siblings had cancer, not sure exactly what type, but meeting with a cousin later this week who I hope can enlighten me. Lyn xx

[Katmal-UK in reply to Hidden]

Sounds like you should pursue it. My male cousin had aggressive prostrate cancer, my brother, also BRAC positive has prostrate, my son also BRAC positive will be monitored early x

[greenpink in reply to Hidden]

Yes, my Aunt (Dad's sister) had a relevant cancer. My cousin a pancreatic cancer. My mum's cousin a cancer. My mum. Also your age is relevant. My oncologist said 48 was young for high grade serous, so suggested BRACA testing and referred me to the Genetics team (same hospital). That team did a cancer family tree and as a result accepted me for the test. I had some genetic counselling, ie implications of being positive. I'm BRACA 2 positive on Olaparib now.

[LittleSan]

Because my mum had OC, my grandmother had breast cancer and my grandfather had bowel cancer, my oncologist at the Christie referred me to the genetics team at St.Marys at MRI on the NHS.

I tested negative for BRCA and Lynch but they didn't do any further tests. Does anyone know if they've found any more mutations recently that they've linked to OC?

💐💐XX

[RonLitBer in reply to LittleSan]

Have a look at this website:

facingourrisk.org/understan...

There is a whole list of other mutations that they have been finding that can cause ovarian cancer.

greenpink, BRIP 1 is on the list.

I recently found out that our genetic testing here in Toronto now has widened the number of genes being tested and they are not just doing BRCA 1&2. Unfortunately, it is up to patients to double back and ask for the additional testing as the cancer centre is not pursuing people for this.

[LittleSan in reply to RonLitBer]

What would we do without your knowledge? Many thanks - really appreciate it. Xx

[greenpink]

BRIP 1 is a genetic mutation that I've literally only heard about today. It's linked tow Ovarian CA. But less prevalent than the BRACA mutation

[ellseybellsey]

Hi Lyn,

I had private medical insurance when first dx and my insurance wouldn’t pay for the test, however my oncologist put it through nhs for me.

Ellsey xx

[March2017]

I was offered it by my oncologist, just because I had ovarian cancer, no one in my family had ovarian or breast cancer as far as I knew, but my Nan had womb cancer and died 50 years ago so could have some connection. It turned out I had BRCA2 my disabled daughter then proved positive too! Glad we found out so she can be monitored and eventually have the necessary preventative surgery, my son doesn’t want to know just yet , his choice . I think it’s a good idea to press to be tested, good luck x

[Eriksendi]

I have high grade PPC with no family history but was automatically referred through my onc on the NHS for testing. I was tested at a local hospital but it was a programme run by St. George’s, tooting. They sent a genetic counsellor to our local hospital who went through my family tree etc and talked through implications.

[Lindaura]

Those with Eastern European Jewish ancestry should be tested as the BRCA mutations are much more prevalent, but many English women don’t always realise that they have this ancestry as so many Jewish arrivals here changed their name and religion to fit in.

The NHS offers the test, but not all Oncologists push for it and the waiting lists to be tested can be long and slow.

The counselling is a good thing. Even if you think you know everything, there are a lot of factors to be weighed and decided upon in regards to your family, so let them talk to you.

I was pretty certain I would be positive, but I had to wait far too long for the test and finally did it privately. The saliva test does just as well.

My family is exactly split. 2 of us carry it, with my daughter also testing positive. But my other 2 siblings do not, nor does my mother, who is 96 and never had cancer.

My father must have been the carrier, but he died, sadly, of a brain tumour at 43 years of age.

It’s good to know, but a lot of difficult decisions are added to our already burdensome lives.

Good luck with this,

Laura

[Elfed]

I was asked if I wanted it at the end of my first lot of chemo’s. I had to wait 12 weeks for the results, worst 12 weeks of my life as I have 3 children and 5 grandchildren, was so scared for them, thank god I was negative 😊

[Hidden]

Glad to hear you were negative, 12 weeks is a ridiculous amount of time to have to wait!

[OvacomeSupport Partner My Ovacome Team]

Dear Lyn

BRCA testing should be available for you on the NHS if you have a 10% risk of the gene mutation. 15% of women with high grade serous ovarian cancer have a BRCA mutation, so if you have this - the most common type of ovarian cancer - you will qualify for NHS genetic testing. Do you know which type of ovarian cancer you have?

I'm aware that accessing genetic testing can be variable, so if you think you might qualify and would like any further information to support a request for a genetics referral, please do get in touch with me.

Best wishes

Anna

Ovacome Support Service Manager

[Hidden in reply to OvacomeSupport]

Thank you Anna, I do have high grade serous ovarian cancer.

[OvacomeSupport Partner My Ovacome Team in reply to Hidden]

Dear Lyn

Thanks for your reply. You might want to have a chat with your oncologist and see if they are able to refer you to a genetics service. Please do get in touch if there is anything we can help with.

Best wishes

Anna

[ZenaJ]

I asked for a BRCA test and was told because of the type of cancer I had I would be entitled to it and because if it showed as a positive result I could have treatment that I couldn't have if the result was negative.

[Hidden]

Thank you, It would appear its my Insurance company being difficult, my Oncologist requested the test, they have refused because I am not being given Olaparib. I think I qualify for an NHS test but will have to investigate further. I hate insurance company's