New To The BRCA Group ?

Hello, my name is Abby.

I'm 25 and have just been tested and discovered I am a carrier of BRCA1. I do not have cancer but was tested as this had been found a lot of family members. 

I found this page whilst looking through just for more information and potential future options. My partner and I are getting married next year and will be looking to start a family so I have just been looking for all the information I can get. 

I have just read the beginners guide to BRCA1 and BRCA2 in the link which I have found really helpful. It's great to see these pages with others and the information available as it was all a bit overwhelming at first.

Thank you. 

Hi Abby

So sorry you are going through this. I do think there is a world of difference between finding out about a brca mutation before and after having a family. No doubt you and your partner have a lot to work through. All I can say is keep reading but don't let this replace conversations with experts - both are really important.  And remember knowledge in this area is moving so fast.

Have you come across BRCA Umbrella? It's a good support network. And for your friends who offer to help, do suggest they join the BRCA Protect research project. 

Love and hugs 

Xxx

Hi daloni,

Thank you for your kind reply and advise. I haven't come across the umbrella but I will be sure to have a look, thank you! 

Yes I definitely will keep in contact with the experts too - our specialist couldn't have been more helpful and accommodating and made me feel really looked after. Thanks again for your reply :-)

Xx

Just giving this post a 'bump' for any new members

as it contains quite a lot of info :)

Thank you Dreamthief.

I'll look into it more after the side effects of the chemo I had on Friday have passed, as I'm hoping to start on olaparib in a few weeks time and it looks as if there are people on the site whose experiences could be useful for me to read!

Just giving this discussion a 'bump'

There is quite a bit of intial information about BRCA on page 1.

G n' J

Hi I’m Hilary (Dormouse)

I found my lump in September 2017, at that point I just thought it was another cyst (I had a big one aspirated in 2015).

By October I decided to ask to get referred to get this cyst aspirated too, my GP checked for me and agreed that it wasn’t infected (it was sore you see) so agreed to do the referral on 24th Oct.

In the meantime I got a call to have my age 50 mammogram on 01/11/17, as I was getting ready to go to the mobile unit for my mammogram, I had a phone call offering me an appointment at the Breast Care Unit to get my cyst looked at on 8th Nov.

Well it turned out not to be a cyst, I got my diagnosis the following week on 14/11/17, a grade 3 invasive ductal carcinoma, that was HER2 negative.

I had it removed on 30/11/17 by WLE along with Sentinal Node Biopsy. My biopsy came back clear but the cancer was confirmed as Triple Negative, so I’d need Chemo and radio therapy.

I got my Oncology appointment through for 27/12/17, then I got a message through my mum from an aunt on my dad’s side of the family after she’d found out I had breast cancer (dad’s not taken any interest in my situation). I haven’t had any contact with her for many years, so it was very good of her to let us know.

The message was that there was a very strong BRCA issue in the family. I then decided to mention this to the Oncologist when I saw him on 27th, he asked that I find out more from my aunt.

So I’m now waiting to hear back from the hospital so I can relay the information they need and I expect to be  referred for genetic counselling (I think that’s what it’s called) and to be tested.

My aunt said that all those that have been tested so far have had the BRCA1 misprint, even down to my cousins daughter.

It would seem that it has affected all the females in the family right back to my Nan and her generation of women (great aunts etc.) but my aunt didn’t find any of this out until 2011 and obviously those that died of cancer before this will not have been tested.

I don’t know if my dad is a carrier, he’s no use with this and won’t have had the test... so that’s my introduction, hope it’s okay xx

Hello 

I’m new to this group, your story is quite similar to mine. I found out about the BRCA after diagnosis of ovarian cancer. Delayed reaction as I was “too young “ for ovarian cancer! 45. Bit close to the wire, but fixed. 

I have two daughters in their 20’s my parents and children were tested. We know which parent and all my aunties and uncles on that side were tested. 

Thankfully my daughters were clear, also my brother with daughters. 

Updated edition of the Macmillan BRCA Risk Reducing Breast Surgery Booklet and Royal Marsden Understanding BRCA1/2  information (Link to page 1)

Hope you find this is of some help, G n' J