Hi everyone ,i see that quite a few people have been tested for the faulty gene.I am TN and really wanted to be tested .My friend who finished her treatment in june for TNBC was told she had the faulty gene and never even asked to be tested ,ive asked to be tested and told im not allowed !!!
My friend was the first in her family to have this gene(well it has to start somewhere) so she was in the same position as me ,no family history . I cant understand why some people get to be tested while others dont.
Also i havent even had a pathology report and my two friends both have theirs. One was treated at the same docs and the other one 12 miles away?
Not sure if anyone will have the answers but thanks if you do xx
P.s i have asked both my onc and my doctor for the test and they both said no xx
Hi lisha
I’ve asked my GP to request my oncologist for genetic testing for me, but so far (6 weeks) still not heard anything back, not even a yes or no. My maternal grandmother, my mother and now me have all had BC so it doesn’t seem unreasonable to request genetic testing, particularly out of concern for my sister and my niece.
Re the pathology report, I had to request a copy of it but was then given it. This seems to vary from one consultant to another - some automatically send a copy to the patient, some are very reluctant to do so and put all obstacles in the way.
Lisha a lot depends on your age if you are under 40 with TNBC then you do fit the criteria for testing. You need to request a referral to genetics as it’s them who will assess you… Surgeon and oncologists know a bit about genetic testing but it’s the genetics team who are the experts. If your hosp doctors won’t refer you then ask your gp for a referral.
This is the current criteria from the icr so if you are under 40 you may wish to wave a copy of this in front of your onc…
icr.ac.uk/research/team_leaders/Rahman_Nazneen/Rahman_Nazneen_Protocols/Protocols/18707.pdf
Lulu x
Hi there ladies
You might find it useful to read our factsheet regarding Breast Cancer in families. It discusses cancer in families and genetic testing.
Here’s the link, the booklet can be downloaded or ordered here:
www2.breastcancercare.org.uk/publications/worried-about-breast-cancer/breast-cancer-families-bcc32
Best wishes.
Louise
Facilitator
Can u have this test done privately ? if so how do u go about it ?
x
Hi beardie you can get it done privately but it is very expensive usually around £2-3000 for a full mutation analysis. You can get cheaper analysis bu they don’t tend to check the whole gene for all types of mutations. Locally they can screen through private hospitals… We have a spire hops and you have to have pre test counselling before they will do a brca test and that is about £300.
You can request a referral to genetics to discuss your risk if your worried… If you are under 40 then your sisters and daughters would be eligible for early screening from age 40 or if you and your mum or sister had BC under 60 then other sisters and daughters would be able o get screening.
You usually have to have extensive cancers in the family (4 or more) to fit the criteria for testing but genetics referrals are not all about tests the majority if genetic patients do not get tested and do not have gene mutations but they do have early screening.
Lulu x
Hi :isha
I was referred for genetics due to large number of cancer in family. At the time my maternal grandmother/first cousin (died at 44 of BC)/mother had begnin lump/ me with DCIS. Also took into account the bowel cancer in the family. Maternal grandfather/ maternal aunt/ father (pre-cancerous polyps).
The registrar I saw in the Oncology dept who discussed the pro’s & cons of rads with me recommended it & contacted my GP who in turn sent me the questionairre. The result was a meeting with the genetics team who advised that as none in my mothers generation had BC unlikely to be a genetic link. A large family etc. They did confirm we were a moderatley higher risk; which is on record but no testing as such.
Then a few weeks ago a maternal aunt (mum’s older sister) diagnosed with BC. Already in her liver & had first chemo yesterday. She is 83 bless her.
I did contact the genetics team as they wanted to know any changes in the family. I don’t envisage testing will be offered but they are going to “put it through” the computer programe & again have a look. If they think now a higher risk for them to offer screening they will contact me or confirm in writing that no change.
This may not help your situation; have you discussed with your GP as they can recommend or perhaps discuss your concerns.
Regards
Lynne
Hi Lulu
many thanks for replying. I was enquiring because i am from one of those families who are not close at all on my mothers side. Without going into detail i have no idea from my mother( who died when i was 18 ) onwards if breast cancer or indeed if any cancers run in the family. I have no way of tracing anyone( most being deceased ) and was concerned as i have two daughters. Didn’t realise it would be quite so expensive to do privately 
xx
Beardie if you are interested in genealogy you can sometimes do a bit of researching yourself. If you know mums details you can probably get hold of her death certificate to see what she died from… The grnetics team can do it for you too but usually they are more inclined when there is thought to be some specific cancers… There is a cancer registry they can look up too to see if people had a cancer diagnosis but this has only existed since the mid 1950s so older generations do not appear on it. Even if your mumdied from a young age from something unrelated this oud still be a risk factor if you knew of any other cancers further back or in her generation as she may have gone on to devlop breastor ov ca had she lived to an older age.
Lynn sorry o hear about our auntie… With another relative getting bc at older inset this woukdnt auomatically out you in the hugh risk group and would onky give enough points if you were already borderline but from what you have said i would doubt that but it is always better to keep your family histiry up to date.
Lulu x
Hi everyone thanks for taking the time to reply. I really wanted to be tested as went on the tnbc foundation website and by the way it reads thought it seemed likely i could have the faulty gene.I have a younger sister with two daughters and i have a son myself(but obv bc cant be ruled out even for men) trouble is i am 42 so looks like i will never get the test.
My sister will get screening every year( but not for bc ) as she has ulcerative collitus so is more prone to getting cancer but besides that no family history of bc ,also parts of the family not traceable.Just think i got my hopes up about the test when my friend who has tn and is also 42 got tested without even asking .
Again thanks everyone xx
Id be very surprised if your friend has been tested without asking as you need pretest counselling and genetics is giverned by quite strict protocols… For instance you need to sign a consent form to say you are happy for blood to be taken for testing so if she had it done she wold have had to sign something.
If you have absolutely no cancers in yiur famiy other than yourself it is much less likey to be genetic… If there are other cancers even further back it could maybe give you enough points to get tested… Associated cancers are breast, ovarian, prostate and pancreatic.
Lx
Hi Lulu, thanks again for your reply. It does seem a bit strange doesnt it, im now wondering if shes got confused. She recently went for a ct scan for a bad back and she said they were goibg to keep a good eye on her as the type of tumour she has was. Only had by 1 in 100 people and that she was also more likely to get it in the other breast as she had the faulty gene. I asked how she knew and she said apparently they had tested her for it at the beginnibg and the gene starts with her.
Perhaps it was crossed wires as my brain isnt functioning that well. Fortunately the scan was clear. What a relief.
It looks like i will have to drop it now trying to find out about the gene as i not rich enough to pay lol but you advice as usual has been very helpful. Thanks xx
Re: pathology report - you should be entitled to have a copy of this. Obviously not everyone wants to see theirs so I don’t think it would just be sent out to anyone who didn’t ask for it. My breast care nurse printed a copy for me when I asked.
Re: Genetic testing. I have a strong family history of various cancers (although I’m the first we know of with BC). However, the genetic testing has been inconclusive. For anyone deciding to go along this route please be aware that it is not as easy as “yes” or “no” as regards BRCA gene variations. There are some BRCA gene variations about which the significance is as yet unknown. I have one of these and therefore don’t know if it could have been responsible for all/some/none of cancers in my family, including my own. So, in conclusion, genetic testing is OK for those who can cope with the possibility of an uncertain conclusion but personally I wouldn’t recommended for those who like everything to be clear and certain.
Sorry Lisha, if you want to access the service and are not able to that’s a real shame. However, I hope this little bit of detail about my experience might be useful to others who are considering going along this route.
PWC we treat UVs the same as a negative test… A neg resukt also doesnt mean that you dont have a gene mutation just that you dont have a known gene mutation… Lots of people with strong family histories dont have genes mutations found but from their history we can assume tere is omething going on that may be identified in th future.
The good thing about unknown vsrients and negative tests are that it means the risk for family members is not as high as if there was a mutation and the risk for ovarian ca is much less.
If you dont feel satisfied with your explanation you can request to go back and speak to the genetics team again… They usually have a Psychologist too and they can help you talk through your worries.
Lulu x