Eliza,
Have you heard anything after your letter to them? Did they acknowldege receipt of it? Hope your results are favourable.
Kim x
Kim
I was positive for BRCA1. I was told that the delay in getting the results was because of the high demand and lack of resources. I have no idea if the delay has had a negatve impact on things, however my aunty recently went for a mammogram after finding out she had the gene and she was diagnosed with breast cancer. Who knows if I had the results sooner whether she would have been diagnosed sooner, with a better outcome? We’ll never know, however I doubt it helped things?
Hope this helps.
Adele
I’ve just heard I’m BRCA2 positive. My results actually only took about 6 weeks to come through. Is it possible that it’s another postcode lottery? I live in the West Midlands.
Clare
Needless to say, still not heard anything even although my breast consultant said he was going to chase them up about 3 months ago!
Kim x
maybe no news is good news hey kim… but i would keep badgering your team till you find out something.
if mine can come back in 4 months from the same lab i dunno why yours is taking so long… did you def get checked through the scottish labs and its not part of a research trial? as trials usually take much longer.
Lxx
Hiya Kim & ladies
I was tested for Brca 1 & 2 on 1st September 2009 and was told tests would take 3 months which meant results should have been around December 2009, I swore I would not contact them for results as I didnt want to tempt fate. When it got to March 2010 (6 months later) I decided to ring them and chase up results they said they would get someone to ring me back, which they didnt, so I rang again and somebody was calling me back again. Then by ‘coincidence’ I received a letter the next day saying that they have done some of the tests and they are showing negative results upto now and that they now need to do another blood test which I will have next week, so they can continue with the testing.
Has anybody else been called in for more blood tests or am I just being paranoid thinking this is just an excuse as they have lost my original sample and need to do it again.
Debbie xx
debbie im surprised they said it would take 3 months… the dna checking usually takes a lot longer and can take as much as 2 years… they are also developing techniques and finding new genetic changes all the time.
my blood was first tested in 2006 and came back negative but was retested last year and i was found to have the brca 2 gene in january… but its not in the common part of the gene that usually mutates so this is probably why they didnt find it the first time as it was probably checking for where known genetic changes were.
not sure about the 2nd blood test… does sound suspiciously like its been lost or discarded.
fingers crossed you hear some good news soon.
Lxx
I agree with you and Lulu that 2nd blood test sound suspiciously like they’ve lost it. Suspicious lot that we are!
I had my blood taken for testing on Tuesday. I’d initially been told it would take 4-6 months but she said that St George’s (where ours get sent) have just reduced their target time to 8 weeks. She also confirmed that they now check the whole of both genes.
Hope you don’t have to wait too long, Debbie.
Anyone here in the UKFOCSS study?
Eliza xx
eliza im not in the FOCSS but was looking into it… might ask my genetic nurse next friday when i see her… it was on my list of to-dos but never got around to asking.
i have had my CA125 done as a baseline anyway and i will be offered screening anyway but im awaiting a referral to gynae to discuss BSO so might as her about it too.
this genetic stuff is all really interesting though… even though i had bilateral BC and mum had BC at 57 and great gran in 50s mum tested negative for brca2… but dad tested positive but no history of any ovarian or BC in his side of the family at all… if it hadnt been for mum and great granny though i wouldnt have been offered a test as i didnt fit the criteria.
Lxx
My sample was taken a couple of weeks ago and I was told it would take 3-6 months as they now have more funding and therefore staff. My case is with the Cardiff team.
It is a postcode lottery to some extent - but as it isn’t direct treatment, I guess it comes lower down the list of nhs priorities.
Lulu, very odd that yours has come from your dads side with no history! I wonder if anyone has been found to have both brca genes faulty? It’s possible, isn’t it? Maybe one of each kind! Weird…
I was tested at Guy’s in January. They said they would aim for May for result. They were really quick and I got the results within 8 weeks.
Hi Lulu, Eliza and ladies
I was definitely told my test would take 3 months as I specifically remember thinkin I would probably find out Christmas week as my test was 1st September but I have my ‘2nd’ test on Thursday this week so I will ask more questions then.
It is awful that once you have been diagnosed with this thing we do become suspicious about everything they tell us never knowing for sure if its true … or is that just me??
Thanks Katemate it just shows there is totally different testing time throughout the country.
Anyway I do hope you are all keeping well.
Debbie
Flora some people have dot mutations in both brca 1 and brca 2 genes, but some researchers think this may be less of a risk than just having one mutation… apparently their are 3 checkers BRCA1, BRCA2 and HER2 if one of the brcas is faulty it causes unstable tissue which turns into cancer but if you have both faults then they think that genes are so mutated they kind of self combust and dont turn into anything.
Debbie good luck with you new test… hope they look after the sample!
Lx
Hi all,
I posted earlier on this thread but have an update.
Mum & I had genetic testing in May 2009 (both have had bc along with both mum’s sisters and I have bone mets too). My mum’s identical twin sister died from myeloma last Oct so I thought the other day I would ring to let the testing people know. Left a message and they rang me back yesterday to say funnily enough, my file had come up for review for NEXT year !!! I told her about my aunt and she said she would make a note of it and speak to the doctor and get back to me but these processes take sooo long to complete. This is being done through Manchester St Marys - anyone else with experiences from there?
Liz
My results came back in less than 6 weeks! I can’t believe how long some of you have had to wait. Also after every consultation I have had the doctor or counsellor have sent me a letter summarising everything discussed which is a great help if you don’t take it all in at the time. I have a direct telephone number and email address for the person dealing with my case and can phone/email at any time. It sounds as if it’s another case of postcode lottery and I happen to be in one of the better areas (West Midlands)
My neice has to be tested in Manchester and from what I understand they can take quite a long time doing things. They normally want 2 counselling sessions before they will give you the test (I only had one)and their results take a lot longer to come back.
Yep, it does seem to be a postcode lottery. Mum and I were told we would get a letter summarising the appointment. I’d forgotten about it but it came in October after the appointment taking blood tests in May…indication of things to come!!! Haven’t had return phone call from last week but it’s still early days.
Anyone any idea if you can get tests done in other, quick areas? I’m at oncologist’s this week and will try to remember to mention it.
Liz
Hi Liz
I think it was somewhere in Manchester that my test was sent, (it was done in Chester) I was told that the longer you wait the better because it means that they haven’t found anything yet! After a year I was sent a letter to say that a had tested negative for BRCA 1 and 2,but they were keeping my sample to retest in the future as I could have a faulty gene that has yet to be discovered.
I too had a strong family link, my Mum (who bizarrely due to being 70 at diagnosis was apparently classed to be the wrong side of the statistics! not a likely genetic link, as it would have been expected to occur earlier if that was the case!) But they were concerned with my Dad’s ‘gene pool’ he died young of pancreatic cancer (which is the same gene?) and my half sister has had BC twice at the ages of 32 and 36! and my paternal Grandmother had ‘an illness’ in the days when Cancer was not talked about (the obvious mutilation of her body by surgeons in those days, no breasts, and huge indentations in her neck led us to conclude that it had been BC)
With regards to counselling I had one session prior to taking the blood, but was led to believe that I would have been offered a further session if I required it when I obtained the results. But I was ‘lucky’, so didn’t need it!
Hope that all of you waiting have the news that you want, as quickly as possible.
Regards Nicky xx