24 and Waiting for Results

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

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

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

️

Hi Hazel, I wondered if you could share your experience of results.

i had my blood test 23 days ago and have had a call to make an appointment on Tuesday, I’m panicking this means it’s positive.

Hope you’re okay 

thanks

Hi,

I ended up having the appointment over the phone a couple of days after I made this post last year and it turned out that I do have the gene. I asked them if that was why they made the appointment sooner than I had expected. They said that it is quite often quicker than expected and most results come back early especially when they know what gene they are testing for. Apparently it means they can just test for that gene straight away, rather than hunting through if they don’t know what they’re checking for. So it wasn’t necessarily because it was positive, so for you having the results already definitely doesn’t mean bad news. It is more likely that they knew what they were testing for. Also it could be unrelated but I had my testing done a very similar time in the year that you have had it done, so maybe it is a slow period in gene testing and results come back quicker around now.

Once I got my results, I was given a follow up appointment. If I were to go through the process again, I would have asked for that appointment to be 3 weeks or so after the initial call, so that there was time for the news to sink in but so I could get answers sooner. It ended up being a few months, which meant I had a lot of questions that came up in that time and I found that I struggled in that time with not knowing the next steps. But in the follow up I was given a really clear timeline of when my risks increase and it was actually much later than I had thought. I found it much easier to stop thinking about it once I had that appointment.

That said, I’m sorry that you are having to go through this and I’m hoping the best for you with your results.

hazel x

Thank you so much for your quick response.

my cousin is BRCA1 so they are just checking for that exact variant so it was always going to be a little quicker.

my mum tested negative, but died after bilateral breast cancer and then getting a related to BRCA cancer. They can’t recheck to see if it was a false negative or a lab swap so tested me.

Ive been okay waiting and not thought about it much at all, but the call to say we have made you an appointment on Tuesday has thrown me and made me think… I might actually have this.

at least I don’t have long to wait and I’ll know.

thank you for your follow up suggestions too!!

im sorry you have been through this and hope things are a little clearer for you now you’re further in the journey. 
 Mika x