Still no results!!

I had the gene test on the 1st june 2010, they said test results were taking 6 mnths, but i still havent heard anything. Does that mean they havent found anything yet, my thinking is the longer its takes, the more likely it will be neg. Or is this just wishful thinking.
The waiting is really getting me down, i feel like i cant move on until i get the results. I need surgery on my good breast to match my reconstruction, but cannot go ahead with this until i know whether i have the faulty gene or not.
Sharon

bump!!

Hi Sharon,

With you being in my area, I’m just wondering where you were tested and how you found them.

My mum and I were both tested at Preston in May 2009 and we didn’t get an answer til Oct 2010. They just said in the letter that there was no evidence of brca1 or 2 but they would keep samples indefinitely in case they find another gene at any point and may test it then (not v likely). Another friend and her daughter got their results in just under 2 yrs - again negative even though another large family history. None of us had anything that would approach ‘counselling’ - we all felt we were being a hindrance in wanting the tests done.

Hope you are ok and if you ever want to meet for a brew, give me a shout.

Liz x

Hi Sharon,

It might be worth phoning your centre. When I received my results at the beginning of August I was somewhat miffed to see that the genetics centre had received the result from the lab on 3rd June!

Hope you hear soon.

Eliza xx

Hi sharon when i was first tested it was through the BRCA3 research trial whih looks for the main changes in the BRCA 1 and 2 genes and takes around 9 months to get results… which were negative and that no gene mutation was found however i got a further BC and was tested through the diagnostic labs for scotland they take around 4 months and this time the result was positive as its more rigorous and picked up a change the research didnt… it is probably worthwhile ontacting your team to chase them up.

Liz im so sorry that you had such a bad experience with your genetic team… might it be worthwhile giving them some feed back from yoru experience as the only way to improve services is to make them aware of their failings.

your experience in getting a ‘no mutation identified’ result is the most common one, even in families with significant family history. you have to have a significant history in order to fit the criteria for testing in the first place but only around 20% of those tested are found to have a gene change.

Lulu xx

hi there. this sounds terrible for you - this waiting. especially with having to decide about your surgery. i know what you mean though about your mind playing tricks with you - mine took 11 months and every day i was waking up waiting for a call/letter and felt my life was on hold. also thinking like you - if there is something maybe they will rush it through and i will hear quicker - but that was just hoping i suppose.

can you call them up? it seems to be taking a lot longer than they said so you would be quite right to call them and check it up.

good luck
J

Got my results i’m brca2 positive, got an appt with onc this friday, and genectics next monday… My mind is made up to have surgery, but will be sad to lose a healthy breast and ovaries, but i have to give myself the best possible chance. So there was no decision to make. I am looking at this as being lucky to be able to do something about this, as many other people dont have this choice…

Sharon sorry you have the brca 2 and i totally empathise with the loss of healthy parts of your body but they can so easily become unhealthy… getting my ovaries out was easier decision to make for me as the ovarian cancer in my family occurred in the early 40s and as i was in my early 40s felt i had no option really… i am the only one with breast cancer and wanted to hsve bilateral mastectomy when i was diagnosed with the second cancer but was advised to have WLE as it had a quicker recovery and to deal with Mx later… but i now feel why get rid of what appears to be healthy breast so its been a hard decision to make.

good luck with your appointments… write any questions you have down so you can get the answers at your appointment… i kept a note book under my pillow for a few weeks cos things always popped into my head just as i was dropping off to sleep.

take care
Lulu x