Hi I’ve been diagnosed with triple x negative genetic breast cancer I’ve had surgery and waiting for chemotherapy and radiotherapy I’m 43 ! Although I’ve got lots off support from the McMillan nurses ️ I’m still confused with this type off cancer! So any information about this type off cancer would be a great help to me and my family x x

HI theresa, I am shocked and not shocked at the lack of detailed information you have been given :( Do you know what 'grade' your TNBC was? This normally determines what treatment you will have after your mastectomy, do you know of any family members who have been diagnosed from 'any' type of breast cancer or even bowel cancer, skin cancer, pancreatic cancer etc? Mum, sister, brothers, granparents, uncles, aunties etc? Or are you the first in yoru family? It is not just BC that is high risk from having a BRCA gene x

Hi thank you for your reply ! My dads 2 brothers and he’s sister have all passed away with cancer! I’m the youngest off 6 so me and my sister are trying to find out within the family as my dad is a bit confused at times I’ve had surgery and waiting for chemotherapy and radiotherapy but none off my consultant or oncologist have really explained this type off cancer I feel so blocked out and not knowing what is exactly going on for me ! The consultant just told me that I have a rare form off cancer!!! Her just said that it was rare and referred to a genetic specialist x 

I’m going on Monday for the grading off the cancer and the treatment plan with the oncologist x x

Have you had you genetics blood test yet? And yes it is a rare form as it is less than 5% of BC gets the TNBC :( It is very rare that it is not genetic related so ideally your dad needs to get tested as his 2 brothers and sisters died of cancer. This will not affect what you are going through now, your process has to take its course, I'm sorry :( Please don't forget if you are unhappy in away with your treatment or lack of knowledge, don't hesitate to get a second opinion, you can research yourself online and ask your doctor to be referred to anyone else in the UK :) For Monday you need to write down all the questions you have and make sure at the end ofit, you are staisfied with the answers :) x 

Hi hun thank you so much for talking to me about this I will certainly be asking the oncologist on Monday the exact type off cancer I’ve got I’ve got a appointment with the genetic drs on the 4th off April so hopefully that will answer some off my questions x I certainly feel like I’ve been told!!! Yes you have this cancer and that is it with not being given time to get into my head never mind the type off cancer it is so having a site like this is a massive help to me and my husband and children x x so thank you so much for your support x 

Hi, I'm 19 years old and have just been diagnosed with the brca2 gene. I am so lost, I know a lot about it but I don't know what I can do now as I am still so young! 

Hi there, I'm 32 years old and also just been diagnosed with the brca2 gene. Being 19 and so young my advice would be for now to just check yourself daily and be vigilant with seeing your doctor at all about any changes as it's quite early in your life to be taking preventative measures (unless there's evidence of family members being affected at your age) but I hope that you're okay :-)

My half sister, who was the first one of us to be diagnosed with BRCA2 had very aggressive cancer when she was my age. She thankfully got through it but was rediagnosed again last year in her fifties. She's now had a masectomy, soon to be a double based on the BRCA2 diagnosis. Because of how aggressive her cancer was when she was my age, I've made the decision to have a preventative double masectomy now, so that the worry is gone. I'm hesitant about my ovaries at the moment though as I still haven't had children :(

My question would be - I only got my diagnosis yesterday and it hit me hard. I was truly expecting it to be negative as fortunately not all of us tested were positive. Does anyone know how long now should it take for things to kick into action whereby I can have all of my scans etc and start talking to specialists about a plan of action? I was a bit numb yesterday to ask too many questions. They said it would be quick and prioritised as I'm high risk but how quick is quick?

Hi there,

Thank you for starting this post Zoe, I also found little info on BRCA2 on the forums.

I was tested and diagnosed with the BRCA2 mutated gene after being diagnosed with breast cancer at 36 years old. I lost my beautiful Mum 8 months prior to my diagnosis to pancreatic cancer, but when I was diagnosed nobody even mentioned there could be a potential link, in fact I was told my cancer could not be genetically linked to my Mums cancer. 

I'm having a double mastectomy today, with 3 children it's just not worth keeping my boobs.

My worry is the pancreatic cancer. I've been told there is no test to check for it, I know they are not that reliable, but even since my diagnosis if breast cancer, I have not had a ct, mri scan only an ultrasound and mammogram of my boobs. Am I allowed to ask for a ct or mri to check for pancreatic cancer?

Thanks so much,

Rach x