Daughters test results..........

Both my daughters age 29 and 34 had their gene test results today one has tested positive for the brac 1 (like myself) and one has tested negative… |Its my worse nightmare come true.
I was dx with bc last november ive since had chemo and a double masectomy with reconstruction in june. We have been told that my daughter who has had the negative result will not have any additional monitoring, we have a very strong family bc history, my mum,four aunties 3 cousins my grandmother yet they still say because she tested negative she has the same risk as any one else.

Iam so worried about both of them, i feel bad one has it and one hasnt i know that sounds strange but my head is spinning and i know ive got to be strong for both of them …


I can understand exactly how you feel.

It is going to be very tough for both your daughters.

I am BRCA1, and have two daughters (who know nothing about the BRCA yet). They will have to be informed at some point, and I am even finding it hard working out the right time to tell them.

It is a very small ‘club’ we are in, but it is a very very difficult one, and no one apart from on here can possible understand.

There are no answers, it is a step by step process… as I am sure we both know by now judging by our pasts. I had BC in 2008, and have just had a double MX with recon, so I am dealing with that step at the moment.

Sorry not to be of any help…


Hi Sappy, I am sorry that you now have this on your plate as well as your own diagnosis. I too have daughter aged 27 and 35 and it worries me that I have may have passed on something to them as I was 39 when I was first diagnosed. You can only do your best and I am sure you will be a great support to both of your daughters when the time comes. Hugs to you all. Take care. Love Val.

Thankyou Crystal and Val for your kind comments they are very much appreciated, im finding this harder then when i was dx, but am trying to take it a step at a time and be strong for the girls, just wish i could do it for them… Tanx again Ruth xx

Hi Ruth, As the months go on and you wish to let off steam please feel free to PM me. My girls were young when I was first diagnosed and for over 20 years I have had in the back of my mind that they may have to deal with all this one day. I have always been open with them letting them know what was happening with me and making sure they got themselves checked out when the time came. I think it gave both of them a new perspective in life and to try to live the life you want to live and not just go along with what was expected of them. I always think that it is harder to watch someone you love dealing with Cancer than actually having cancer yourself. When you are going through cancer treatment it takes you all your time and energy just to get through each day. I have a photo of the family when I was 39, no hair and as thin as can be…my mother looked so drawn and unhappy and it shows in the photos. Keep in touch and let us know how things are going for you all. How are your daughters coping with the news now? Love Val

hi there

i have a genetic breast cancer and also work in breast cancer genetics.

sappy with regards to you daughter who tested negative… if you have a high number of breast and ovarian cancers in your family and a gene fault has been identified it is the assumed that these cancers were as a result of that specific gene mutation, even if the individuals cannot be tested eg because they died before testing was available.

this would mean that your daughter who doesnt have the gene which we know causes cancer in your family, will not be at risk of getting cancer caused by the faulty gene and therefore at the same risk as the rest of the population who do not have the gene.

im kinda in a similar situation in that my mum and great gran both had breast cancer before i was diagnosed in 2006 and then with bilateral BC in 2009, but my brca2 mutation was found to come from my dad… so even though my sister tested negative for the gene she would have a mildly elevated risk from my mum and great gran… but this riks isnt even enough to put her into the moderately increased risk criteria to get early screening… she had been getting screening until she was found not to have the gene.

my daughter is 19 and hasnt been tested yet but she s too busy being a twen-teen to worry about breast cancer and im glad shes able to forget about it for the meantime… when she is 25 she will be eligible for annual breast examinations and mammos 2 yearly from age 30, and anually from age 40 whether she decides to get tested or not.

if she does get tested and is found like your daughter not to be a gene carrier then her screening would also stop.

if like your other daughter she is found to be a carrier the screening would continue as i indicated above but also with annual mri scan which are hoping to be introduced by the end of the year fro brca 1 and 2 carriers.

she would also have the option of prophylactic surgery which would be double mastectomy to reduce the risk of breast cancer by around 99% and bilateral salpigo-oophorectomy (BSO) which is removal of the ovaries and tubes and sometimes done along with a hysterectomy if preferred which reduces the risk of ovarian cancer by around 99% but also reduces the risk of breast cancer by about 50%.

i have just had a hysterectomy last week and now recovering from it which will take another couple of months but im glad i went for that… planning to have double mx next year although not 100% sure about that having had BC twice it doesnt seem so scary to me as having ov ca.

please do feel free to ask if you need anything clarified or any more info as im happy to help if i can.

Lulu xx

Morning Ladies,

I also have 2 daughters (aged 22 & 14) and at the moment I am halfway through chemotherapy. I have my first appointment with genetics tomorrow re testing as my mum, aunt & cousin are all bc survivors and my grandma died aged 49 of ovarian/cervical cancer in 1949 (because of date we are unsure which it was). When I was diagnosed my mum was very upset that she had passed this awful disease onto me but I’m glad its me and not one of my 2 sisters. Because of our family history of cancer - lots more in our family, my 2 sisters and myself were expecting to get some form of cancer. My oldest daughter has already started the ball rolling making sure that her GP is aware of our family history (she also has 2 daughters) and has been told she will be tested from the age of 30 if I do not have the gene, and IF I do then genetics will have her in to talk about her options. My younger daughter (aged 14 is aware that there may be a problem - but is not worrying about it yet (her words not mine). I have been open with them all the way along, and hope and pray that I do not have the gene - I do not want to pass it on to them BUT IF I am tested and found that I do have the gene, at least they will have the option to take preventative action to save them going through all this - small comfort I know but the thought that they will be monitered much closer than I was gives me the hope that they will not have to go through everything I have.

My oldest daughter also has the worry that her mother in law also has breast cancer (mx last week), but was adopted as a baby so we have no family history for her, no idea if any of her biological family have any form of cancer - the risk for my grandaughters could be so much greater than my own or my daughters.

One thing I have learnt through bc, is to take life one day at a time, and to not worry about what “might” be, live for the here and now, not what “might” happen tomorrow.

Love and Hugs to all
Tracey xx