71602members
375688posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Awaiting genetic testing results??

36 REPLIES 36
Nicky65
Member

Re: Awaiting genetic testing results??

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

lizcat
Member

Re: Awaiting genetic testing results??

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

CT59
Member

Re: Awaiting genetic testing results??

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.

lizcat
Member

Re: Awaiting genetic testing results??

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

Lulu34
Member

Re: Awaiting genetic testing results??

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

DEB_BLUE
Member

Re: Awaiting genetic testing results??

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

katemate
Member

Re: Awaiting genetic testing results??

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.

Flora29
Member

Re: Awaiting genetic testing results??

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...

Lulu34
Member

Re: Awaiting genetic testing results??

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

Eliza
Member

Re: Awaiting genetic testing results??

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

Lulu34
Member

Re: Awaiting genetic testing results??

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

DEB_BLUE
Member

Re: Awaiting genetic testing results??

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

Lulu34
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Re: Awaiting genetic testing results??

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

CT59
Member

Re: Awaiting genetic testing results??

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

Adele1
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Re: Awaiting genetic testing results??

Eliza,

Have you heard anything after your letter to them? Did they acknowldege receipt of it? Hope your results are favourable.

Kim x

kimmy2108
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Re: Awaiting genetic testing results??

Thanks for all your replies. I'm new on here taa1234, no idea how to pm. Can you tell me how please?

Kim x

Eliza
Member

Re: Awaiting genetic testing results??

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

Adele1
Member

Re: Awaiting genetic testing results??

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

taa1234
Member

Re: Awaiting genetic testing results??

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

Anna_BCC
Member

Re: Awaiting genetic testing results??

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.

http://www.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

kimmy2108
Member

Re: Awaiting genetic testing results??

Hi,

I feel like I want to phone them and hurry it up, but that may mean I get bad news quicker!! 😞

Kim x

kimmy2108
Member

Re: Awaiting genetic testing results??

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

Eliza
Member

Re: Awaiting genetic testing results??

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

Lulu34
Member

Re: Awaiting genetic testing results??

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

Anna_BCC
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Re: Awaiting genetic testing results??

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

rhapsodyangel
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Re: Awaiting genetic testing results??

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

rachy7
Member

Re: Awaiting genetic testing results??

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

ElaineD
Member

Re: Awaiting genetic testing results??

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)

lizcat
Member

Re: Awaiting genetic testing results??

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

Louise_BCC
Member

Re: Awaiting genetic testing results??

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:

http://www.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#

westie123
Member

Re: Awaiting genetic testing results??

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

kimmy2108
Member

Awaiting genetic testing results??

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