Not sure if anybody has seen this recent study which suggests that brca1 testing should be made more available to women in their 40s as well as those in their 30s. Not sure if it’s going to be widely rolled out but it maybe worth pursing with your genetics dept if you feel strongly about it…
Thanks for this Lulu34.
I was referred for BRCA testing when I was diagnosed with basal TN cancer back in Sep 2009 (it was just days after my 46th birthday). I have a really strong family history on mums side and mum had ovarian cancer at my age. Anyway, I got my BRCA result on Christmas Eve 2009. They found a mutation in BRCA1 of ‘unknown significance’. So instead of offering a bilateral mastectomy then, I just had a lumpectomy following chemo and rads which finished in March 2010.
I have just had a bilateral mastectomy (Dec 2011) as I was diagnosed with a second BC in opposite breast (contralateral breast cancer) in Oct 2011. The genetics specialist at my hospital said that he is now treating me as fully BRCA1 as I fit the profile perfectly (especially given my latest breast cancer) BUT because I have a mutation of ‘unknown significance’ my family / sister / nieces etc do not automatically qualify for testing which I find very frustrating! He did however say that I had to inform my sister that she is at ‘great risk’. They still have more BRCA genes to discover and I am taking part in the BRCA study in the UK.
I think all women who present with TN cancer should be tested - that’s a massive step forward. But there is still lots of uncertainty in genetics testing as my case shows.
Lulu - I have been meaning to ask you for a while - I had TN BC aged 30. To the best of my knowledge I have no family history but the are missing parts of the family tree. Would I qualify for testing? I understand it may or indeed is most likely not genetic and therefore a sporadic cancer, but I do have a sister and a daughter, and am so young myself that I would want preventative surgery if I was a carrier.
Being diagnosed with TNBC before age 40 is an indicator that you coud have a gene mutation even with no family history…
You can ask for a referral to genetics to discuss it more fully… You might be best to ask your onc as your gp may not relished that TNBC is risk for genetic cancer.
Most TNBC is sporadic but over half of all brca1 breast cancers are TNBC… So with your young age and that type of cancer it has a higher risk that it could be genetic.
Lulu x
Thanks Lulu - you have confirmed what I thought.
I was diagnosed with TNBC aged 43 .
The only family history is 2 secound cousins on my mums side.
The genetics clinic have said that I do not qualify for testing but now I am worried!
I didn’t meet nhs criteria for testing despite being just 32 at dx. We opted to pay ourselves once I had a recurrence as I wanted to know if I did have a brca mutation as it opens up some treatment options (eg parp trials). As it happened, nothing was found but I’m glad we had the testing done (although I think it’s wrong we had to pay!). We shopped around + got a great quick service at a brilliant price- around £650 I think + results within 6wks.
Hopefully the nhs will pull their finger out on this + offer fairer testing soon.
Tina x
Hi
I am based in Dublin and also had problems getting tested, despite gettiong diagnosed with TNBC just before my 46th Birthday, until I had a recurrence last year, 3.5 years fromm original. I went back and asked again and I’m glad I kept the pressure on.
I had the blood taken last month (on Valentine’s Day, lovely!) and will have the results in 3/4 months. At our National Genetics Centre they told me that they have recently decided to offer testing to any woman 45 or younger who gets TNBC - I guess the protocols are constantly changing.
Katie
The protocols can vary but these are the national guidelines from the ICR which I am sure anybody can use to argue their case currently that TNBC under 40 is a criteria for testing without family history.
icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18707.pdf
Lxxx
Hi I’m new to the forum. I’m TN aged 48 and have just had 4 x FEC to be followed by 4 x Taxotere, then surgery. Have asked about BRAC-1 testing but no go on the NHS. I’d still like to be tested privately, does anyone know where this can be done?
Thanks,
Kat
Hi Katb and welcome to the BCC forums
In addition to the peer support here you may find it useful to call our helpliners with your query, the lines are open 9-5 weekdays and 9-2 sat on 0808 800 6000, we also have an email service called ‘ask the nurse’ whereby you can send in your query to our team of specialist nurses, you can access this here:
breastcancercare.org.uk/breast-cancer-services/ask-nurse
I am posting another link to the ‘Treatments’ page of the website where you will find further support ideas and information which you may find helpful over the coming months:
breastcancercare.org.uk/treatment
Best wishes
Lucy
I was diagnosed with triple negative grade 3 cancer in June 2008. My father had pancreatic cancer, his mother had ovarian cancer at 45.
Based on these two cases I was allowed to have genetic testing. I have since found out that I am BRCA1 carrier.
I am glad that I was offered the genetic test, as it has made me think long and hard about things, and make some life changing decisions.
xx
I was dx with tnbc aged 62.My cousin on dad’s side had same dx at same age.I lost an auntie[78] and a coisin [51] to ++ bc.I was told that I dont qualify for NHS testing.I filled in a questionnaire and was told no more risk of bc than general population…this was 3 years after my dx!!!I wanted to be tested because I have a daughter and a granddaughter for whom it may be relevant.I wonder if private testing is possible-does anyone know?
Horace There is private testing available I think in the region of £2-3000… I think if you can contact our local genetics team… However your family sounds like it would fit the criteria for the brca3 trial (the genetics of familial breast cancer study) you need three members with breast or ovarian at any age… It’s done via your genetic department in conjunction with the ICR in Cambridge… The three cancers need to be invasive not in situ… It might be worthwhile going back to your genetics team and asking hem about this
Kat you could ask again as the new research only came out two months go so your team might not be aware of it… Maybe you should print off the research paper and take it with you… It does recommend testing women under 50 in th uk with TNBC… And there was a further study from Greece a few weeks father ths which also supported this.
Lulu xxx