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triple negative and genetic testing???

6 REPLIES 6
marion1978
Member

Re: triple negative and genetic testing???

Hey Paula,

 

It seems the guidelines are applied slightly differently in each area. Glad to hear you have an appointment with Genetics. I'm sure there will be no obligation to go along with testing but it will help you make that choice. They are very knowledgable staff.

Hope it goes well, keep us informed!

 

Marion

XxX

mary32
Member

Re: triple negative and genetic testing???

Hi Paula

 

I was had genetic screening done when I was dx as there is strong family history of bc tho mine was not tn.

 

The issue with genetic testing is that all they can test for at the moment is brca1 and brca2. When I had my appointment the nurse said that they know that there are many other types, they just haven't found them yet. Which means that a negative result only goes so far.

 

As an example my mother had it done 30+ years ago and altho she was -ve it was worth while testing me becasue they can see about 30% more than when my mum had it done.

 

I came out negative too but i would not be in the least surprised if in another 30 years it turns out that I have do have a gene for bc which is not known about right now.

 

So it isn't as clearcut as it may appear. The genetics staff are very good and helpful and explain everything in detail.

 

Take care.

 

Mary

wyn
Member

Re: triple negative and genetic testing???

Hi Ladies,

 

I have also been for genetic screening after diagnosis of triple neg in Nov 2013 due to family history.( sister and cousin both 38 when diagnosed).

I am currently going through chemo first prior to surgery and rads.The surgeon said the decision on what surgery I may be having would be down to results of BCRA1&2 genes.

Thankfully my results came back NEGATIVE for both genes and it looks like lumpectomy

. Although i was  very worried waiting on results I am glad I did this.

On a positive note they said usually they would only test if at least 4 cases of breast cancer/ovarian was in family history and even though there was 3 in mine it was unlikely I was a carrier and I was at moderate risk. 

hope this helps ease your minds a little

Wyn x

fairfield
Member

Re: triple negative and genetic testing???

Hi Marion 1978

I thought I could put all my troubles to the back of my mind and move on, but its not that easy!

I have no family history of cancer only my maternal grandad that had oesphageal aged 75 and died at 77, so this new nice guideline came as a shock to me! At my recent breast clinic appt.
Not really sure what to do for the best I am going to go for first appt with genetics and see from there, it has just unsettled me a lot that's all.. My daughters 8 and wouldn't get any screening until see is older anyway..and my sisters are old enough to make their own decision. I just very frightened.
Keep me posted how you get on, it's sooo good to talk to someone in the same situation

Love n hugs

Paula xxx

marion1978
Member

Re: triple negative and genetic testing???

Hi Fairfield,

 

I've been for genetic testing (don't have my results yet) and it was very reassuring. There is a very long wait at the moment, probably the Angelina Jolie effect! 

 

Like you, I had no family history and was diagnosed at 34 with triple negative, then treated and a year later offered genetic testing, I beleive this is now common practice with young women diagnosed triple negative. I had a form to fill before my appointment, I then saw a geneticist. He was very thorough, he went through my form, explained the mutations involved and the implications for my health. He discussed what I might be offered if the result was positive and how the process would work. 

 

The wait for results in my area is 3 months and its been a very long 3 months. But given the information from the geneticist I've come to decisions about my future either way.

 

I have a clammed up hubby too.

Good luck!

XxX

Jo_BCC
Member

Re: triple negative and genetic testing???

Hi fairfield

 

While you are waiting for replies from your fellow forum users, could I suggest you give our helpline team a ring and have a chat with them.  They're here to support you through this.  Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

 

Take care,

Jo, Moderator

fairfield
Member

triple negative and genetic testing???

Hi

 

I need some help - I was dx with tnbc in jan 2008, i went on to have a lumpectomy, chemo (6 fec,6 doxa) and 15 sessions of radiotherapy. I'm now 6 years in and feel great.

Today i went for my annual check up and my consultant offered me genetic screening because i was 34 when diagnosed! there is no family history of breast cancer or ovarian.

my heads now in turmoil as what to do for the best, my hubbies clams up when we talk about it.

i have two children a son aged 11 and a daughter 9

Help!