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Private gene testing for BRCA1 and BRCA2

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Shi Community Champion
Community Champion

Re: Private gene testing for BRCA1 and BRCA2

Ak88 thanks for sharing story. Aedielyon, I had tnbc in 2017. Got brca test and was negative. I did ask about that at time of gene testing and was told it would have been op to remove ovaries. For me if I had tested positive I would have had double Mx and the ovaries out, I would have taken every option offered to me to try and help prevent anything. Please get to your doctor and get yourself checked out as first step, then you can also mention the gene testing too ❤️It will give you peace of mind to take control and get looked at. Hope this helps 💕💕✨✨shi xx

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Member

Re: Private gene testing for BRCA1 and BRCA2

Hi  Bramley

 

Thank you for your post!

I suspect that I may be at risk so I was researching the question recently. My mom doesn't like talking about it too much, but she had a surgery few years ago because of cancer and now coping with consequences. She's quite ok already, but I feel that there's something wrong with my breasts, especially the left one. I'm afraid that it may be in genes.
Also, my grandpa died cause of cancer but not breast/ovarian one.
Is there any connection between any other types of cancer?
And if I'll do preventative surgery on my breasts, is there still danger to fall victim to ovarian cancer?

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi, 

I had a the gene testing done in September 2017 and got my results in January 2018. I have the BRCA gene my % was 82% Breast cancer and 18% ovarian. 

I had to have genetic counselling before any decisions were made.

I decided to have the risk reducing surgery (double mastectomy and reconstruction) which I had done on the 10th September 2019. Nearly 2 weeks on I am recovering well and pleased I stayed strong and went through with it all. I am only 30 years old so this was very tough for me but I had to do what I felt was right for myself and my children’s sake. 

The next step is so have nipples tattooed which I don’t know much about. 

 

Just thought id share my story ☺️

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi Astra

 

The mutant BRCA gene is something you are born with and there is nothing that can be done to correct it.  If you have this gene the odds of developing breast or ovarian cancer are much higher.  However there are preventative measures available to those who have this gene i.e surgery to remove the breasts and/or ovaries in order to reduce the chances.  The NHS have strict criteria for approving genetic testing e.g. if there is a strong family history of breast/ovarian cancer.  If it is something you are worried about, it would be worth asking your medical team for advice to see if you qualify on the NHS.  I didn't qualify on the NHS so decided to pay to have the test privately.   Hope that helps?

Member

Re: Private gene testing for BRCA1 and BRCA2

Thanks Bramley, I am not yet understanding how knowing is going to help really if there is something that can be done to correct the mutation, do you have any info on this?

 

Shi Community Champion
Community Champion

Re: Private gene testing for BRCA1 and BRCA2

Hi Astra, my nhs trust had me tested for brca1 after my tn was diagnosed back in 2017. So you might get that for free on nhs or both, it’s worth having, so you know and if so gives you option of taking preventative action ❤️ My brca1 came back negative. Really push for it if your trust is a bit slack in offering it 💕💕✨✨Shi xx

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi Astra

 

Glad the info is useful.  If you are thinking about genetic testing, it's always worth asking your medical team if you qualify for free testing on the NHS.  I'm not sure if different health authorities have different qualifying criteria?

 

Wishing you the best of luck whatever your decision xx

Member

Re: Private gene testing for BRCA1 and BRCA2

Thank you Bramley and ladies for sharing this / your information.

 

It is good to know, I am wondering if I should get tested myself, I will have to investigate more about the BRCA1&2 as I have triple neg diagnosis.

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi NickJ

 

So sorry to hear that your test came back as BRCA2 positive.  It's frightening that you didn't meet the criteria for testing on the NHS and yet your test with Color came back positive.  I'm so glad you made the decision to get privately tested with and you are now in a position to make informed decisions that are right for you.  That was certainly my thought process before I decided to go through with private testing. 

 

A friend of mine tested positive for the BRCA gene and had preventative surgery 11 years ago. She is doing absolutely fine now and living life to the full.  I hope your preventative surgery goes well and you make a good recovery.  Stay positive xx

Community Manager

Re: Private gene testing for BRCA1 and BRCA2

Hi @NickJ 

 

Thank you for sharing your experience here. We would just like to let you know that we edited out the doctors surname in your post because this would identify them and that is against our Forum Guidelines.

We would also like to say that we are here for you and if you would would like to chat about any concerns you have about the BRCA 2 gene or anything else, our nurses are just at the end of our free helpline 0808 800 6000. It's open 9am-4pm weekdays and 9am-1pm Saturdays.

Best wishes,

Laura at Breast Cancer Care

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi Louise 

 

defiantly use Color! If you are BRCA2/1 positive the NHS retest you after too.

 

I believe it is easier when you know what you are dealing with x

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi Bramley

I have used color in America and they were fantastic. I also was refused testing on the NHS as the family history was not strong enough for the test. I decided with my husband to be tested just to get the monkey of my shoulder! As I always thought about breast cancer and possible genetic mutation. 

Dr from Cardiff said I was 1/100 chance of being a BRCA2 carrier. 

 

I did the same test with saliva and I was devastated when I was told I am BRCA2 positive.

 

it has been a long hard journey but I have finally accepted that I want to have preventative surgery as I don’t want my children to go through loosing their parent to cancer like I have.

 

I would definatley say to any women wanting to find out about BRCA to use Color x

 

Member

Re: Private gene testing for BRCA1 and BRCA2

Hi Louise

 

I'm glad the info was of use to somone.  I had no idea where to start to get private gene testing but it was something I wanted to pursue for my own peace of mind and for the sake of my children and family.  Sounds like you are in a very similar position.  You may qualify on the NHS but if not, this option is pretty straight forward, very accurate and very reasonably priced in comparison to UK companies. 

 

The Color website takes a bit of navigating to get to the right section but if you need any further advice I'd be happy to answer any further questions.  The Counsellor was lovely when talking me through my results.  I had her on speaker phone so my Husband could be involved in our conversation.  The whole service was very professional.  They did actually find a mutant gene in my saliva (they test around 30 different genes) but it is nothing to do with breast cancer thank goodness.

 

Wishing you the best of luck with your testing x  

Member

Re: Private gene testing for BRCA1 and BRCA2

Thank you for this wealth of information.  I am currently trying to have this testing on the NHS.  My father and cousin (on dads side) both died from cancer.  My cousins sister also had cancer.  This is my 2nd time  with breaat cancer.   I have been given a very long form to fill in.  If my application is rejected I plan to go private.  I have 2 daughters whom I worry about.  Thank you for giving an idea of the cost, and all the other details

 

Louise

Member

Private gene testing for BRCA1 and BRCA2

I wanted to post something on this forum as I have recently paid privately for BRCA1 & BRCA2 gene testing and it may be something that some of you are possibly considering.  I did not qualify on the NHS for gene testing but cancer appears to be prevalent in my family.  My Mum was diagnosed with Breast cancer 12 years ago (2007) at age 63.  I’m very happy to say that she is now 12 years on and living a full and happy life at 75 with no further issues.  My Father tragically died of pancreatic cancer which spread to his liver and lungs.  I also have 2 paternal Uncles who have prostate cancer. 

 

The BRCA1 and BRCA2 mutant gene increases the risk dramatically of breast and ovarian cancer in women and prostate cancer in men.  I was the second generation to be diagnosed with breast cancer and I wanted to be sure it was a case of bad luck rather than due to the hereditary mutant BRCA gene.   I have 3 children, a Mum, Brother and Sister who also have children so I felt it important to know for all of our sakes.  My Oncologist explained that in order to qualify for BRCA gene testing on the NHS, both my Mum and I would be under the age of 50 at diagnosis for breast cancer.  I was happy to accept this criteria but I still felt I needed some peace of mind.  He explained that if I was going to pay for private testing it would be good to get it done before I had surgery (planned lumpectomy) at the end of chemo.  If I tested positive for the BRCA gene I would be retested (via a blood test) on the NHS to validate the results.  If the BRCA gene was confirmed we could discuss preventative surgery i.e. double mastectomy and both ovaries removed in order to reduce the risk of reacurrance. 

 

The NHS  cannot recommend private gene testing companies but the Genetics Doctor at my hospital was aware of a US company called Color; a specialist gene testing company (www.color.com).  I also researched a few companies in the UK but the costs were significantly higher, around £1,000-£1,500.   I paid $350 (around £275) to have the test privately with Color.   It was a very professional and efficient service.  I spoke with a genetic counsellor; she called me from the US at an agreed date/time.  She explained the process and advised that the saliva test was over 99% accurate.  They test for a whole range of mutant genes, not just BRCA gene (and including the PALB2 gene also associated with breast cancer) and also screen for heart health issues.  I purchased a saliva testing kit through their website which was delivered by DHL courier.  I had to spit saliva into a small test tube and return the kit via DHL courier.  I completed an on-line health questionnaire and a family tree showing members of my family who have/had cancer.  I received my results within 3 weeks through a conversation with a Counsellor and a report for my retention (they advise that you share the results with your health care team).  Thankfully I do not have the mutant BRCA gene which is a huge relief for me and my family.   However if the result had been different and shown I did have the BRCA gene, at least I would have been in a position to be retested on the NHS and make an informed decision about preventative surgery.   It would also mean that my family members would have qualified for testing on the NHS for the BRCA gene.

 

I would recommend Color as a company if you are considering private BRCA gene testing as I was very happy with the service I received.  I hope this helps someone reading this forum in a similar position to me.