Hi,
I had genetic testing done in June 2009 and am still awaiting results. Is this normal? Is anyone else waiting on results? What time scale has anyone else experienced?
Kim x
Hi i had mine done april 09 got results september 09. I think it does vary depending on were they are being done, im sure ive read that some people have waited almost a year.Y ou could always give your genetic councilor a ring in your concerned about the time its taking.
julie x
Hi Kim
You may have already read our booklet on Breast Cancer in Families, it covers the subject of genetic testing.
In case you haven’t yet seen it, I have given the link here for your information:
breastcancercare.org.uk/upload/pdf/bc_in_families__final_12_june_08_layout_1_0.pdf
I do hope you find this a useful read.
Kind regards.
Louise
Facilitator#
Hi,
Nice to know there is someone else in the same waiting position - sorry!
My mum and I both had it done May 09 and are still waiting. We had started the initial process in Oct 08 and it took until the May to get an appointment for the blood tests. They said it would take at least a year but more likely 18 months to get results and even then they think it won’t show brca1 or 2 but that there will be a defective gene but one they haven’t found yet. The summary of the appointment took 5 months to arrive so I’m not expecting an answer yet…A friend and her mum in my area had to wait almost 2 yrs to get a negative result.
My mum and both her sisters have had bc, albeit at ages older than me but then my auntie died last Oct from late diagnosed myeloma so we were concerned there may be a link (aunt had bc 20 yrs ago). I have bone mets. Asked 2 oncs and they said she had been unlucky - mind you she was 75 - and that the genetics people work to their own timescales. The oncs didn’t seem too impressed by the timescales!
At first the length of time was a worry but I’ve put it to the back of my mind for now and work on getting a letter to say no genetic defect !
Liz
I was almost a year bewteen testing and results (which showed I was BRCA2) Apparently they are so incredibly thorough, that they will test and retest until they are satisfied they have reached the right conclusions. So this naturally can take a long time. So much too will depend on the workload they have-our daughter’s results came through much quicker-although in fairness they knew by then what they were looking for (and yes, sadly she too-and many cousins-are also BRCA2)
I had my testing done in Dec 09 and will get results next week !! Sounds quick to me. I did have to wait quite a long time for an appointment to see the genetics people intially. 25th Feb will be results day.
Rachy xxx
I had my test done in yorkhill hospital in Glasgow. Anyone any experience from there? There is no history of bc in my family. I have a daughter and 2 granddaughters and I am petrified that I have potentially given them a life sentence. I was told by my consultant that if it comes back positive that he strongly advises me to have an immediate mastectomy on my other breast but not yet sure of the implications for my 21 year old daughter. I was diagnosed at 29.
Hope everyone is well
Take care
Kim xxx
I was tested at the centre for life in Newcastle in early August 2009 and got negative results in November 2009 - but the covering letter said that due to the very strong family history they will want to retest me as more mutations are identified… My sister and niece are just at the start of the process filling in the family forms etc…
Theresa
Can someone please explain the difference between BRCA1 and BRCA2 in layman’s terms as I don’t think I was listening properly when I went for appointment. Can anyone tell me the implications of both for me and my 21 year old daughter?
Thanks
Kim xxxx
Hi kimmy2108
I have passed on your question to our nursing team. In the meantime, you can call our helpline 0808 800 6000 who will be able to help you with your question.
Best wishes
Poppi
hi kimmy
my bloods were sent to the glasgow lab in october and got the results that im brca2 positive in january.
however i was tested through a research trial in 2006 which took almost a year for the results to come back… they tested some but not all of the gene so perhaps they only checked the untested part this time making it quicker.
my mum and sister have had bloods sent to glasgow but now that they know exactly where on the gene the fault is theirs will only take a month to get the results as the lab knows exactly where to look.
my daughter and son can get tested too but i wasnt really saying much to them about it at the moment as i thought they were too young my son is 15 and my daughter is 19 next month, however my daughter has since had breast problems which my GP thinks is pagets disease (a rare type of breast cancer) so if her investigation come back positive we would probably presume she also has the fault.
although both increase the risk of breast cancer to roughly the same risk approx 80% BRCA 1 has a higher risk for ovarian cancer at about 60% where BRCA 2 its about 30%, but BRCA 2 has an increased risk for prostate cancer and male breast cancer as well as melanoma and pancreatic cancer.
not everybody who is brca 1 or 2 has the same fault as there are many different faults identified, thats why it is such a long process as there are so many things to look at.
why not contact your gentic team to ask how long they expect it to take… i was told it would be 3-4 months but as i say im not sure if that was because i had previously been tested.
im seeing my consultant in 2 weeks to discuss the implications. my mum, sis and daughter are coming along too so we can all discuss the implications.
can maybe chat to you more about it at the YWF on the 19th.
hope your test is negative.
Lxx
I’m still waiting for the notes and information that the genetic counsellor said she’d send me after my appointment on 2nd February. I think she said that actual testing would take around 6 months.
Eliza xx
Lulu,
Thanks so much for ur kind words and info. I would very much like to have a chat with you at YWF if u don’t mind. Sorry to hear about your daughter, hope everything works out ok for her.
Take care
Kim xxx
Hi,
I feel like I want to phone them and hurry it up, but that may mean I get bad news quicker!! 
Kim x
Dear Kimmy, the nursing team have asked me to post this on their behalf.
Best wishes
Poppy
Hi kimmy2108
As Lulu34 mentions in her post, genetic testing can be a long and complex process. Even once you have a result the implications for each family will be different, so it is very difficult for anyone other than your genetic team to give you a personalised answer.
However, the direct link below for information about breast cancer genes on the cancer help uk website has a good explanation about testing for BRCA1 and BRCA2 and how much they increase the risk of a diagnosis of breast cancer which may be of interest to you.
cancerhelp.org.uk/type/breast-cancer/about/risks/breast-cancer-genes
It’s not easy remembering everything discussed at an appointment, so you could contact your genetic team again as I am sure they would be happy to talk through the discussion you had.
Alternatively, for information and support, you could call our confidential helpline and speak with one of our experienced nurses or trained helpline workers. The freephone number is 0808 800 6000.
Best wishes
Nursing team
Hi kimmy 2108,
I had genetic testing at Yorkhill in Dec 08 & got results April 09, I had a double mastectomy on the 1st Feb with immed recon with implants due to results.
I have met someone who had a double mastectomy with immed recon using lat dorsi muscle & I must say I was very impressed with the results.
The op was fine, I was in Canniesburn, I was out less than 24 hours after I came back from theatre & have been fine, better than I had expected, no pain, just pressure when standing up after lying down allnight.
If you want to chat just pm me.
Taa1234
x
I had to wait approximately 20 months for my results (after being repeatedly told to phone back next month etc) and I only got the results after involving my AM,MP, hospital directors and chief director of the Trust. They came through surprisingly quickly after that (3 weeks). This was in Cardiff.
Adele
I’ve got so cross at having to wait for the notes and information that today I sent the consultant a Very Cross Letter asking when can I expect to hear from them…
Eliza xx
Thanks for all your replies. I’m new on here taa1234, no idea how to pm. Can you tell me how please?
Kim x
Hi Adele,
Did the outcome of the results have anything to do with the time delay in receiving them? Has the length of time taken to get the results had any adverse effect on treatment etc?
Kim x