Me and My Brca1 Gene

I'm a woman who has lived with a nagging question in her head for 20 years. At only 35 years old that’s a lot of worry. There's been a question that persistently knocked on the door of my rational brain, telling me to pursue the answer. What is the question?

Is there hereditary cancer in my family?

At the age of 16 I vividly remember sitting in front of my GP raising my concerns of the very evident history of breast cancer in my family (7 women that I can name). I remember he almost laughed at me when I suggested it might be hereditary and told me that the chances of me having genetic cancer were so small I shouldn't worry about it. I was there to go on the pill and I knew even then that the pill increased the chances of breast cancer and I was concerned. Granted, in 1989 there was little information available about genetic cancer but I knew it was still possible - so many woman had been through or died from breast cancer in my family, it just couldn't be a 'coincidence'.

So here I am today, in the knowledge that I have the BRCA1 gene; the breast and ovarian cancer gene. It took me 13 years to get into the 'cancer care system' of the NHS. Initially they told me I was too young and couldn't be screened until I was at least 30. At 27 I found a lump and that made them sit up and take notice. Thankfully it was benign. It’s taken a further 9 years to go through screening, counselling, appointments, my mother's DNA testing, my mother's results, my blood samples and genetic testing to find out my own results.

In August this year, I found out. I sat next to my husband Chris in the MacMillan cancer unit, Derriford Hospital and the lady told me that she was sorry to say that the results were positive for BRCA1. I didn't flinch. I felt relief, my gut instinct has been right all this time. I was probably relieved because all the energy I had wasted worrying and planning and deciding 'just in case' hadn't been in vain after all. I think I would have fallen off my chair or burst into hysterical tears if she'd have said that I DIDN'T have the gene.

And now? Now I have choices to make.

MissusJonesy MissusJonesy
7 Responses Feb 15, 2009

I too am brca1 positive and am 34 years old. I lost my mom a year and a half ago to ovarian cancer, she died at 57. After having my 3rd child I decided to go ahead and look into preventative surgeries. I am scheduled to have a double mastectomy & reconstruction at the end if August & will have a complete hysterectomy later this year. I am really hoping that having these surgeries will give me piece of mind. I'm tired of thinking and worring about this every single day. Thank you all for sharing your stories, I don't feel so alone and singled out. Unless you are going through it no one else really understands the feeling

At 56 I was just given the news iam braca 1 positive . I made it to 56 in great health and recently i was just cured of a stage 1 8 mm ductal cell carcinoma with no lymph involvement of my left breast. My gut tells me that doesnt have anything to do with mutation . <br />
I do plan to get my ovaries removed as the first order of business and then go back and decide rthe breast situation. I also believe that there are other influences on this gene because my mother had died at 40 andhere i sit at 56 with a clean bill of health at this moment. maybe im just being too optimistic thinking that just because u test positive u can still be hopefully for great outcomes.

I am anathor statistics in this braca1. I alwaysvhad the gut instinct that I carried the gene.unfortunately before 2007 there was no MRI scans for breast screening. So I had annual mammogram which proved to be useless as I detected the lump inspite of negative mammagram. To add to my misfortune my only relative who had tested for the positive gene did not tell me otherwise I am pretty sure I would have gone for prophylactic surgeries.I was diagnoses with grade 3 node negative early breast cancer in 2007 unfortunately inspire of all the treatment it has come back again....I did everything in my power to fight with this enemy within me...

I'm also 35 and in a bit of limbo. Had the test and just got a call today that the results are in but I have to wait until next week to get them. Anyone have the surgery? Just want to hear about the experience as I am concerned I may have to go through it.

How did you make out? I am new to the site and am dissppointed to find only a few BRCA2 stories on here. I was hoping for a little guidance from women in the same situation.

Its not curable , its a mutation of the gene that helps fight cancer, but one set is already damaged in my DNA by the mutation - it may be something that can be 'tweaked' in the future of science but not for now. I have upto and 85% chance of getting breast cancer by the age of 70 and upto 60% of ovarian cancer. Preventative surgery vastly reduces this - it feels like the only sensible option at the moment. So, tomorrow I go into hospital and on Monday I will have my healthy breasts removed and reconstructed using my large back muscles (latissimus dorsi muscle). Wish me luck and thanks for posting! :)

A woman's intuition, especially if backed up by genetic history should never be challenged. Is BRCA1 cureable? I don't know much about breast cancer except the little information they give you on breast cancer walks.