24 and Waiting for Results

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My great grandma, grandma and mum have all had breast cancer and my mum and grandma both tested positive for the BRCA2 gene. They have had double mastectomies and oopherectomies. I have put off testing for years but finally got round to it.

I had the appointment and did the blood test and was told 6-8 weeks. I had a call today after 4 weeks saying my results were imminent and was I available to make an appointment as soon as possible next week. It doesn’t feel like good news.

I’m only 24, I want children but because of the career I am in I don’t have any yet. Everyone else’s stories I’ve read seems to be of women who already have families and it makes me so worried for how I will feel if the test comes back positive and what that will mean for my fertility.

My mum feels very guilty about potentially passing the gene on to her children and I don’t feel able to talk to her about it because of upsetting her but I feel scared and alone and waiting and not knowing feels awful.

Any advice on how to feel and how to cope with waiting is appreciated 

  • Hi, I'm a mum of a 30 year old daughter. I'm just newly diagnosed with triple neg breast cancer, I'm waiting for the BRACA result, which was a no brainer for me to have because of my daughter.

    My only advise is, that yesterday when I saw my breast surgeon we discussed the whole BRACA issue and she very much felt that annual MRI scans were the way to go for young family members if we do turn out to carry the gene in our family.

    This certainly provides me with some reassurance for my daughter if she did have to make a decision about being tested.

    Just my opinion. Hope your negative Fingers crossed

    I have a friend whose mother is positive, but her 2 daughters are both negative, and her son is positive.

    Statistics are a funny old thing. Good luck Fingers crossed

  • Hi Hazel,

    I have a BRCA1 mutation which is inherited from my dad. He felt guilty about passing this mutation onto me, but I always think of it in a way that if he knew about his before and decided not to have children because of it, I wouldn't exist, so there is absolutely no need for him to feel guilty about it as I would 100% much rather have this mutation than not be here. So whilst it alters my path in life, I feel very fortunate to have this knowledge and to take preventative steps to help myself.

    In terms of fertility, ovary removal is not usually recommended until the age of 40-45 unless there are cases of ovarian cancer at a young age in your family, so chances are you will still have plenty of time to have a family of your own should you wish. I haven't looked into it myself (I just turned 38 without children), but I heard that there is an option to test the embryos for the faulty gene so that you can conceive without the risk of passing it on. I also think that if it turns out that you do have the mutation, the world that your children grow up in will be very different to now. Science is getting better all the time and there is a high possibility that by the time your children would be your age, there would be a vaccine, medication or something else to reduce their cancer risks should they inherit the gene too.

    It's a difficult game of 'what if' for now, but try to remember that you are just as likely to not have it as you are to have it. We read into an earlier than expected appointment as likely bad news, but often it has no connection, it is just chance that the results came back quicker. If your family have already been tested, they know what specific fault they are looking for and so can identify it quicker than someone who needs to have all their DNA read. My brother and sister were tested at the same time, and my brother got his results before my sister - he was negative and she was positive.

    Try not to worry too much and I wish you the best of luck with your results 

    x

  • Hi HazelJ23,

    Waiting for results and scans is always a stressful time.

    I can agree with the other ladies who have replied here. Ultimately I would seek support from your genetic counselor, that's what they are there for. Knowledge is power and regardless of your result they will help you going forward. 

    Our family discovered our BRCA2 mutation following my Mum's BC diagnoses and treatment at 59. Here mother my Nan had had BC in her 40's back in the 1960's where treatment was just surgery based. Luckily they must have caught it early and they took so much tissue away, it never returned. But she was one of 7 sisters that all my 1 had some kind of brush with cancer. Nan lived into her 70's and passed ultimately from Parkinson's Disease and not cancer.

    I was in my early 30's when I discovered I had inherited the mutation. I originally opted for Mri's instead of early surgery. Mainly because the majority of cancer had occured later in life in my family and I also was single and had hoped to have a family one day if I met the right person. 

    I had yearly MRI's for several years before opting to have my double mastectomy and recon surgery in my late 30's. I probably would have carried on with MRI's, but we sadly lost Mum to secondary breast cancer when she was 65 and every year I was getting major scanxiety.

    I'm now about to turn 45 and I'm on the "who knows how long" waiting list for my oophorectomy. I have a new partner now, but decided even before I met him that perhaps my own children wasn't on the cards for me. I'd rather focus on being well and making plans for a future of infinite possibilities.

    Ultimately though everyone's journey is different. You do what you feel is right for you. 

    Wishing you all the best.

    Kind regards

    Relaxed