I found out I am a brac 1 gene carrier in september only 3 weeks after being tested. My sister died of bc end of march this year and was tested in about January/ feb I think. I got her results about July. I was told that Nottingham is the quickest place to get the bloods done and tested as they are more advanced than the rest of the country. I luckily live in Nottingham and her blood was sent here.
I was contacted by Nottingham genetics as they noticed I had an Aunt on my dad's side with Ovarian Cancer and that my sister had cancer. I think they could have saved my life as I would never have known.
I found out about 6 weeks ago that my best option is to have a double mastectomy, tissue expanders and breast implants. i am having my operation dec31st all being well.
TheTP53 gene is because my brother had a cancer when he was young and we have some rare and fairly odd type of cancers within the family, sometimes there is a link between the TP53 gene and younger people getting breast cancer. They are doing this as I have a little boy and if it comes back as positive, it will not just have an impact on my life but also his...all fun and games eh.
Take care and I hope you are all keeping well.
I think if you have had someone else who has already been tested it makes your test much quicker as they know where to look - that was how it was explained to me. So if I test positive my cousin's test shouldn't take as long and she was the one who initiated it as she wants to know because she has two daughters. Her mum and my mum (sisters) who died at an early age of breast cancer.
My test was turned around by the NHS in 3 weeks precisely - Jan 07. My sister had been tested in the US 2 years after a DCIS so we had her testing report faxed over, then she decided to make a visit so they took blood from both of us (I was dx last year) same day. Having my sister's report helped the lab to narrow the search considerably. My older sister was tested recently and also has the mutation but wasn't tested in this country. I believe it took 3 months but she possibly delayed going for the result.
So the NHS record so far is 3 weeks!
I was told that it will take about 6 months to a year for my results to come through (was tested in June). I decided to have the test because my cousin wants to know (she has two daughters) and it's easier to pinpoint if you have someone who already has a diagnosis of breast cancer - enter me!.
I initially went to see a geneticist 7 years ago and he said that the test wasn't that accurate at that time but it has improved considerably since then. I was also told by the genetics counsellor this time that if I happen to be BRCA1 then it affects females in my family with regards breast and ovarian cancer and that they could look at options for them including screening or preventative surgery.
If I have the BRCA2 gene it means a risk of breast cancer or prostate for the male side of my family. My brother already has a PSA blood test as a precaution regarding prostate.
If we do carry either one of these genes it means a 50/50 chance that our children may have inherited it as well.
I know that it can take ages for a result to come through as the genes are large and, according to the health professional I saw, genetic alterations may be hard to find.
Hope this helps.
My mum sent her results off in January and she still doesn't have her results back 😞 Just ridiculous the amount of time it takes.
I got my results today and they are negative !!!! They are now testing for the TP53 gene but I feel really positive now and able to move on.
Take care of all of you.
Lots of love
I cannot believe that they missed it, how dreadful !!!!
I have my appointment for the 3rd October, fingers crossed and I'll post my results.
Take care and thanks for letting me know that, its something to bear in mind...
My result was negative via NHS let me know about a year later, they asked if they could send my sample on to a cancer research place, they then found the BRCA2 gene. The geneticist compared it to looking for a spelling mistake in a dictionary, and so can be missed - which wasn't very reassuring, and turned out to be true in my case!
I have posted this on behalf user Claire
Breast Cancer Care
sorry its been a while but I am back at work and never seem to have 5 minutes to myself, juggling home, work and all the other chores gets me down at times but anyway, about the genetics, I did go back for my results on the 22nd August and can you believe it, they didn't have them. They dragged me all the way in for the appointment to tell me that, I was so disappointed, angry, upset and rather anxious, both my mother and I broke down - why couldn't they have rang to tell us instead of us having the go. they have now promised me the first week in October but I have written a complaint letter to the Director of Genetics but what that will do I do not know.
I will keep you posted.
Take care all of you.
Hi there billybob JUST TO LET YOU KNOW THAT I GOT MY RESULTS OF MY GENETIC TESTING.......THEY CAME BACK INCONCLUSIVE, i HAD A SLIGHT MUTATION ON THE BRCA2 GENE AND THEY SAID IT COULD BE SOMETHING OR NOTHING ??( I HATE IT WHEN THEY SAY THAT) SO I'M NONE THE WISER, FOR ME ITS NOT A BIG DEAL AS I ALREADY HAVE 2NDRYS AND THEY HAVE CONFIRMED THAT I HAVE SOME KIND OF GENE OR ANOTHER - JUST AN UDISCOVERED ONE, I WOULD JST LIKE TO HAVE HELPED OUT MY FAMILYS..........THE RESULT WAS NEVER A YES OF A NO, THEY WHERE JUST GOING CONFIRM WHETHER IS WAS A BRCA1 OR 2.
MY DAD IS HAVING A BLOOD TEST TO SEE IF HE HAS A MUTATED GENE IN THE SAME PLACE AS MINE WHICH WOULD MAKE IT MORE LIKELY TO BE BRCA GENE. OH GOSH ALL IS SO INDEPTH AND COFUSING.
HOPE YOUR GETTING ON OK
LOVE AMBER XXXXX
Hi everyone I went to see the genetic team yesterday to tell them that I wanted the test to be done. I told them my concerns about the long wait for the results and they told me that it use to take alone time but now it takes no longer then 3 months to get results back which is great as I need to have my implant changed some time after the summer and if the test comes bck that I carry a gene them I will have another mastectomy done at the same time.
Love Clairemm x x
I will be thinking of you on the 11th, please do a posting and let me know the results. All the very best of luck with them, take care.
I can't believe that they do not test 100 per cent, how on earth do they come to that decision! best of luck to you and your mum, take care
Hi Claire I don't know if you are still thinking of going private or not but that might be a good idea.
My mum has tested negative so far for brca1 & 2, but on the nhs not all the gene is tested. She had about 80% of one and 70% of the other tested, so she could still be brca1/2 positive, but that part of the gene wasn't tested.
If you go private I presume they test 100%.
I am still classed as high risk, start mammograms in 3 years time unless the gene causing the cancers in our family are diagnosed and I test negative.
Hi Claire Just logged on- so pleased to hear your good news (-: Good luck I wish you lots of luck with your results - I get mine on 11th may - I must say 9 months has gone very quickley.
LOL Amber xxxxxx
Good news about lump Hi All
Just wanted to let you know, the lump is fibrosis, I just have to live with it. What a relief it was, an early easter present!
Thanks for all your messages, as for the genetics, we are thinking of going private and paying, I don't think I could do another 9 month waiting.
Take care all of you and have a good Easter.
Lots of love
Good luck Hi my name is michelle i have justed read you're profile so good luck. I am currently waiting to have my gene test done. So far i have been waiting nearly 3 months so i should have the results late next year. The prod is i already have abnormal cells but good luck i hope you get the news you want luv michelle.....
Hi Billy bob
Let us know how you get on and i do hope the lump isnt anything nasty. Its worry worry worry with this blasted disease.
Just been tested for the 'gene' and told its about a 6 month wait.
Oh I forgot to add I think the other test is PK15 ? My patern is all down the male side so my grandad and my dad where/are carriers - its all so sneaky, I feel a bit hard done by that I got it first! not that I want anyone else to have it - but I'm the youngest and it didn't give me a chance to be pro active (like you have been). I will look out for your results and hope there is a coincedental chance for you that you dont have the gene, at least you will have a close eye kept on you.
Hi Claire I've updated my profile as it was a 'bit' dated! time flies!! Yes it all sounds pretty scary, but I live life like a 'normal' person ( whatever that is?!) I've recently been sking and have joined my gym, I just have a dark cloud that lingers over my head, I stay busy and do lots of nice things - everthing I want and NOTHING I dont!!
Anyway I hope your scan is OK and your results too.
Love Amber xxxxxxxxxxxxx
I have just read your profile too and I am really sorry that you have been through so much. I hope you are well and that things are going okay for you. As for keeping any eye out for things, I had my check-up on Wednesday and I need a scan on my breast again, as they are unsure as to whether I have another lump... what a carry on.
you take care
Lots of love
Thanks Thanks to all of you for your messages, it is just the wait I guess...
Amber - I can't believe that you are so similar to me, my aunt, great-aunt and great great aunt all on my mothers side have had BC. They are sure there must be something there, rather strange that it goes auntie niece too I think! They are also going to test me to TP3 (I think) and p53, I might have the lettering the wrong way around but its something like that.
Of well, here's to the next 6 months of waiting.
Take care and thanks again.
just read your profile... and wanted to add that I was 32 at DX and nearly 2 years into DX my Aunt who is 50 got BC, she was the missing link down my Dads side of the family
PS the gene cant skip a generation.
Hi Claire Yes thats right results take around 9 months I had my test done last august and will get my results in may. The only way you can get the results through quicker (2 weeks and your local GP has to agree to pay Ã‚Â£2000 to get test sent to USA) is if you get on a trial, I am currenty being treated at the royal marsden. I was told the test is like having to identical bibles and they have to search untill they find a missprint in one...... Just to let you know that they have told me that they currently only test for the BRCA 1&2, there are still alot of undiscovered ones and even if the test comes back neg they are 99.9% sure I carry some kind of gene, as my Great Aunt, Aunt and myself all have/had BC ( I haven't read your profile so I'm not sure of your status) What I'm trying to say is don't rule out anything and keep an eye onyourself even if your test comes back neg. Also are they doing 100% check as alot of hospitals only do 60%. I have done a lot of research into the testing , please ask if you have anymore questions.
Love Amber xxxxxxxxxx
Long wait I have no family history of bc but when my tumour was tested in dec 2004 some marker was found so a genetic test was done in march 2005. 2 years on I'm still waiting for results. I was told it would be about 2 years. The marker test was a new thing at the time but as I have 2 daughters (9 and 5) I'd like to know the result. It's a bit slow.
First testing can take longer I think Hi
In my family my aunt was tested first about five years ago. I think it took about six months for the results to come through. Now all family members can be tested against her original result and the test is getting quicker. My sister was tested recently and got her result in less than a month.
Hope that helps
How long do you wait for results? Dear All
I have just been informed by the genetic clinic that my results could take from 9 months to a year, I am so upset, I was sure it was from 8-12 weeks, how long have you had to wait? Has anyone gone private for this? We have a strong family history but I am the first to have the test done, I am 32 years old and I want to get on with my life and I feel realy frustrated at the moment. I just wanted this out of the way and to know either way.
Any advice would be gratefully received.
Take care all of you.
Lots of love