I was diagnosed last September following a routine mammogram. What a shock!
Had my surgery in November and have recovered well physically but mentally it has been so hard. I honestly don’t know how I got through, lack of sleep and anxiety was awful . I am lucky to have had amazing support from my husband and family.
However now I have been advised due to family history to have tests to see if I have a faulty gene that makes me more at risk from breast, ovarian and other cancers. I feel numb. The results take at least four months. If they come back positive I have been advised that I should consider double mastectomy and removal of my ovaries to reduce the risk of further cancers.
Even worse than that a positive result would mean my children and their children may inherit the faulty gene. I have no idea how I’d get through that…
@janew1 Hello 
I did things the opposite way round to you….had my genetic test as my cousin and Aunt found out they have the faulty BRCA1 gene. Found out I have it too and went for my first high risk screening - mammogram and MRI. MRI looked a bit dodgy, so I had an ultrasound and biopsy. Boom! Triple Negative BC 
That was a lot to get my head around in a short space of time. I’ve now had a bilateral mastectomy and start chemo soon.
I’m on the list for risk reduction surgery for ovary and fallopian tube removal.
BRCA1 increases the risk of breast and ovarian cancers and as I’ve already got one, I’m going to make damn sure I don’t get the other 
The gene mutation is unfortunately hereditary and because I have it, both my children have a 50/50 chance of having it.
My daughter (23yrs) had her test recently and it came back negative 
The immediate risk to my son (19yrs) is low, but he’ll get his test once he’s ready.
I found the best way to get through the genetic testing was hope for the best, but prepare for the worst. I took my daughter with me to a follow up appointment with my genetic counsellor so that she could ask questions too. Information is key, but understanding it is more important. I asked LOADS of questions and made sure things were explained to me in the simplest terms.
I wish you all the best with your test. Xx
4 months sounds a long time, Im in dorset and was told 6wks, its been 7 and not heard yet.
I was advised to have genetic testing (mum, sister, grandmother). I went ahead but then paused it because of extreme anxiety. I’m now going ahead as, although I can’t bear the thought of telling my adult children (one expecting first baby other one getting married) the alternative of them getting cancer is worse. But the waiting for results is terrible. I coped quite well with surgery and radiotherapy but this is far worse as you do all you can to protect your children and you find yourself in a nightmare situation.
@janew1 hello 
so very sorry, to read what you are going through right now in your note ! it seems so unfair, that with the C BOMB diagnosis so often many more other complications and worries come on top of everything else ! only good that you in a good place regarding support from your husband and family… a VERY important thing to have !
in my case i come in on a different angle… our daughter (28) was diagnosed this march with TNBC… it came totally out of the blue… as my daughter was asked if there is any cancer history in our family, the warning signs came on straight away. unfortunately on my fathers side is a high cancer fatality. my fathers mum died of breastcancer only 36 years old and when my dad was still little. all her 3 sisters passed away of breast cancer too… the list goes sadly on. so my daughter was advised to take the BRCA faulty gene test and she has BRCA1. NOT good results at all… so i got tested two weeks ago and it will take up to 2 month for my results to come back (my husband and i do live in denmark since 5 years) the test results from our daughter were also in the 2 month timeline… but they still in the process of figuring out where the faulty gene stems from( even if it strongly is believed that it comes from my dads side). our son (26) is also wating for his blood test appointment as he- if he should choose to have children could pass- IF he should have inherited the faulty gene- this on to his children/ daughters also ! my husband also has his call from the genetic clinik in the beginning of september. it is so fully overwhelming and life seems only to involve around all these many so scary and worrying things… its very tough- as everyone on here will know !- a month ago i had my breast checked via ultrasound AND screening… i never have ever exsperianced anything like it… i was fully torn apart with fear and emotions… since my teenage years i have taken check ups like regular smear test and later breast screening highly serious and was fortunate enough to have been always clear.
(in 2011 i had a very large cyst and my r.overy- which was grown on to my right overy -removed… this came back as borderline… thankfully i was cleared after a year of regular check ups)
now with all this going on i have to say i felt so overwhelmed…on one side i wanted nothing more, than for my breasts to be all ok… on the other hand i felt like i would betray my daughter… even more so, as it seems like she ended up with this damn monster through me/ my dad… i was all over the place and a mix of relieve, anger and total helplesness towards my daughter…
so, if i should have the BRCA1 gene from my dad, i will have to go through a lot of deceision making i suppose… but there is also the worry for our son- even if the risk of him getting breast cancer (and i only did find out recently through all this, that men also can get breast cancer !!!) breast and prostate cancer if BRCA2. but as said earlier if he has the faulty gene, he can pass it on to his children… what is even more insane is… that you can pass the gene on with having the faulty gene but you can stay uneffected by it !
it is a difficult one and totally individual for each person. some people want to know, able to protect themselfs and loved ones… some just dont want to know… or a mix in the family, wher some do the test and some dont. i think there is no right nor wrong… as everyone has different reasons to choose what to do, or not to do… perfect cenario is, if the family can come together and openly discuss all this… unfortunately not everyone has the chance to do so…
apologies for throwing all this out here… but may it can be helpful, or just acomfort to read…
please feel free to write and talk, or ask… it would be lovely, if i could help somehow…
otherwise i wish you strength and dertermination to get through this… stay brave and i wish you all the best for your recovery !
all the best, T
@suepinkpiano22
i feel for you and admire your bravery, to decide to get tested !
i hope the results will be good and you wont have to worry for your daughters !
sending strength and calm… how proud your daughters can be … that you managed to put your fears and worries aside, to try to protect them…
love is an incredible, powerful thing…
all the best…
T
Thank you for your lovely message. I don’t feel brave at all - can’t eat or sleep and very distressed at what could be next. I have had friends saying ’ I would want to know ’ but not sure they know all the implications. However as I said the implications of not knowing are maybe worse. I had bc at 66, my grandma at 73 and I kinda think I’m glad I didn’t know I had a mutation - just went to the good old family history clinic 25 yrs ago! But there’s no guarantee at what age and what stage you will get it
@suepinkpiano22 hello again
you are more than welcome ! i hear you ! this damn fear, worry, the mind going insane with all sort of nasty scenarios and no answers, till th results are in. also what to do… whith whom can you talk… who does understand aso. this side is such an incredible place for people who cant turn to anyone… even if people dont reach out, or write anything themself… they still can read all this wonderful posts… and hopefully find a little hope, soothing and calm in doing so…
if it is ok to ask… have you spoken to your daughters about all this, or are you soldering through all this on your own ? i hope you have someone you can share your thoughts and worries with… i can rely to the not sleeping bit… which brings all sort of other problems… but not eating is even worse… can you bring yourself to at least try something you normally enjoy eating ? or a little mix of fruit , or a light soup ? may alittle humus with some carrots and celery stick, pepers aso… or a light salad… and may prep it yourself… that enjoying the preperation of it becomes a positive to create a little apetite ?! does this makes some kind of sense ?!
obviously i dont know what you do like or dislike but i find that little meditations can help… or certain music… reading… walking in nature… sitting in nature, or may if youhave- in your garden… and of course the famous soothin and all restoring british BREW 
i totally agree there with you… not knowing is not good… not at all… we all here on this end did see it as the chance and being able to prevent things by doing the test… BUT everyone has diffent opinions for different reasons… there simply is no right nor wrong… it is a very personal and individual choice to make…
lovely writing to you… 
T
My husband is great and I have mentioned to my daughter and think she is on board with genetic testing. I have two sons - they would probably have no idea about genetic testing and it would be a complete shock and I haven’t said anything yet. Obviously don’t want to worry them but might drop into conversation. It’s just so awful that I might have to tell my son who is expecting a longed for first baby and the other one who is getting married. But don’t think I can tell one child and not the other two.