Hi I have had BC twice and am TN . Just got results of genetic testing and have the BRCA 1 gene. I am gutted for my daughters as they now some tough decisions to make and I feel an overwhelming sense of guilt for putting them through this. Anybody else felt this way .
Wendy
Hi Wendy
I’m sorry to read you’re struggling with this at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime it might be helpful to talk this through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes Sam, BCC Facilitator
Hi I’ve not been tested yet, but will be as I am tn also. I’m already racked with guilt just by the thought of having a faulty gene, god knows what I will be like if they find I do have it. It’s bad enough us having it let alone knowing we may having passed it on. Do they provide counselling for you, to help deal with it.
Yes there is counselling if you want it sometimes they also give it before having the blood test. I know deep down it is the right thing as gives us the choice now to prevent this dreadful disease in future years.
x x
I’m going for testing soon but it seems almost inevitable that I have the gene - family history and a medullary type, triple negative breast cancer more than suggest this. I’m prepared for further surgery but like everyone else I am very concerned for my teenage daughter. She is aware of the fact - being an expert in biology - and seems to be taking it in her stride, but I’m not sure…
Life is not fair.
Hi there,l carry brca 1 and sequence changes in brca 2 also.my eldest daughter age 30 tested negative but my youngest at the sage of 28 tested positive.I was devastated and felt so guilty.She took it in her stride and last July she had double MX with immediate recon.She was in no doubt that this was the best way forward for her and now she is happy with that decision.However my cousin whose mum died of BC at the age of 41 doesn’t want to be tested and that’s her decision which I respect,its a very difficult decision which needs lots of thought and care
Di.x
Hello Wendy,
I am sorry that you have joined this club, even more exclusive than the one that you unintentionally join when you find you have breast cancer, and that is hard enough. I have a brca1 mutation and like you have had triple negative breast cancer twice. My daughter is 6 years old. She is so beautiful, so strong and vibrant, it is hard to imagine that she could carry something so life-threatening. I am not sure I have dealt with my feelings about this. It is just so terribly painful to imagine that she would ever have to go through this. But, it is not your fault Wendy. You know what, you can give your children knowledge that will empower them to take control of the rsisks they face and manage them. I am the first person with a gene fault to have been identified in my family. So I know that every one else can be screened or tested as they choose. They will never have to face the random discovery of a lump which they might ignore-to their cost. Try to think of this as a gift to them- possibly the greatest gift you could ever give them- under the circumstances.
Also, I try to think that alongside this terrible mutation may sit a gene for more positive qualities- for courage, for resilience and hope.
Rattles x
Rattles - what a beautiful post thank you so much for your kind words they really mean a lot. You have been through a lot yourself and had a baby/ daughter to bring up as well you are a true inspiration. It seems from your profile that you had bi lat mx and then still got this awful disease again (have I got that right ) it certainly has no boundaries and really does take some understanding. Thanks once again for your reply and I really do wish you a BC free life going forward and let’s hope that aye our daughters are in the lucky 50%
Wendy x x
i also am a gene mutation carrier as i have brca 2 and iv had bc 3 times… ER+ first the TN x2.
i have 2 kids… daughter 22 and son 18 and neither have been tested yet, but they both know they can if or when they feel the time is right… like rattles i was the first person in my family to be found to carry a mutation and since then my mum tested negative, my sister tested negative, my dad tested positive and his brother was negative… so just me and dad are the known carriers in the family.
although ideally i would like my kids to get tested but its not my decision to make… they know ill support them whatever they decide.
penguin dont resign yourself to being a mutation carrier… most TNBC is not genetic… 20% of women under 50 with TNBC carry a brca mutation this means 80% do not… so much higher chance not to be a carrier… medullary cancer hasnt been found to mean an increased risk of being a mutation carrier unless you actually have a family history of breast or ovarian cancer.
good luck ladies
Hi, am also awaiting genetic testing, due to take place in May, having had TNBC twice now, first in 2007 aged 40 grade 2 and then again in 2012,(exactly five years to the day) grade 3. WLE, FEC x6 and rads first time, followed by mx and 7 x FEC-T this time round. have no family history, does anyone know if having TNBC twice increases the risk of being a gene carrier? Onc seems to think this latest is a new primary because of the significant time between each diagnosis. Thanks. Twinks Mum x
Twinksmum yes I sure you when you talk to genetics it does especially having 2 primaries as well. I have had 2 primaries and TN. I have very little family history only a cousin who also had BC twice and ovarian and I have the same gene as her. So my Mum must have given me the gene although she passed away many years ago a the age of 64 from heart attack so can only assume she was one of the lucky 20% not to get BC.
Good luck
Wendy x x