Brca1 mutation - I have children!

Hi RachieRonks

Welcome to the forum and sorry to hear that you have been diagnosed with breast cancer and that you've test positive for BRCA1.  While I don't have the experience you are looking for I thought I'd welcome you to the forum anyway.  There's a BRCA Positive forum that you can join to get support but just to let you know that it's not a busy forum like this one but even if you just have a look at the posts on there you might find something about how and when to tell your children about the fact you've tested positive for the BRCA Gene.  This is the link to the forum: BRCA positive forum.

Just take things one day at a time and try and keep yourself busy.  Why not reach out to the Macmillan helpline on 0808 808 00 00 to get advice on how to tell your children your news.  The helpline is open from 8 am to 8 pm seven days a week.  If there is a Maggies centre near you why not call in and chat to one of the volunteers there about how you are feeling.

Hopefully someone with the experience you are looking for will be along soon.

Wishing you the best of luck with everything.

Best wishes

Daisy53

• Hi Daisy53, thank you so much for your lovely post. I will definitely check out the forum. I’m so lucky that there is a Maggies centre. I went there this afternoon for a cuppa and a cry straight after my news! It helped me unburden a bit and just regroup for the journey home. 
  Thanks again for taking the time to post, it’s much appreciated Xx 

Hi Rachie, sorry to hear you’re going through such anxiety. I cannot offer any personal experience of BCRA1 genetic issues,however, since I was diagnosed with BC I was very open about it and shared it with the ladies at my keep fit classes, and a couple of the ladies (somewhat younger than me, in their 40s) have shared that their mothers had BC due to BCRA and, as a result their daughters opted for a preemptive breast reconstruction and are both very happy with their decision and very nice boobs, they’re also lucky enough to still have their mothers! So take heart, there is hope! Lots of love and best wishes to you x

Hi Mazz, thank you so much for such an uplifting post. I definitely want to get to that point where I feel like it’s all power to us and good things will come of us knowing. The positive side of me knows 100% that knowledge is power with cancer but just the thought of causing further upset to my son and daughter is a real blow. It’s been a tough year so far. We lost my much loved dad to prostate cancer in March, my mother in law is ill with metastatic breast cancer and now this as part of my journey! I do try to see the bright side of life and your anecdote really made me smile though so thank you. Here’s to amazing healthy breasts! Xx 

Oooh blimey; totally understand how you must be feeling! We had similar issues when I was first diagnosed, my father in law was dying from a secondary cancer which we, of course had to tend to. Selfishly, it terrified me as well as it being upsetting as we were very close. And we’d recently just gotten over my brother having had a heart attack, he’s ok now, but with all the drama going on, you can’t imagine things getting any worse!!!! Plus we had to hide all these problems from my 90 odd year old mum! But, strangely, we get through it, we have to! You will too, what’s the alternative? We need to KNOW and believe that things will get better. Chin up, lots of luck and love to you xx

Absolutely, I shall sing the morecambe and wise song as I go to sleep… the sunshine will be in our smiles  Take care of yourself and thanks again, you have helped Xx 

Hi Rachie Ronks,

Welcome to the forum. I was diagnosed with breast cancer last year at 35, had lumpectomy and followed with 6 rounds of chemo. Just after the end of my chemo i found out i’d got the brca1 gene as well. So when i thought i‘d be finishing my treatment with some radiotherapy everything changed and i was referred back to the breast surgeon to have a double mastectomy which should be happening in the next few weeks. 
Finding out about the gene completely floored me, on top of everything else. I have a 3 year old daughter so i don’t have the same concern as you on how to tell her that information yet but i just feel so guilty that one day she will have to make some major life changing decisions because of me. I just hope that in this time with all the medical advances that something may come along that may be able to help her more than it can me. (Wishful thinking) I am on a facebook group that is specifically for people with the brca genes and it is really helpful and supportive so if you are on facebook you may want to join and there may be more people who could advise on your specific worries. 
Sending you big hugs and anything i can help with just ask x

Hi,

I found out earlier this year that I have a BRCA1 mutation after being treated for BC last year. It wasn't a huge shock for me since I ticked a lot of boxes that made it likely that I would have a BRCA mutation. I have thought a lot about it, and I find knowing about it a really positive and empowering place to be. Obviously I would rather not have it, but if I do, I'd much rather know about it than not - and I have the power to take preventative steps for the future.

I'm in France and just as I found out about my mutation, a new drug became available for exactly my purpose. I recently started a PARP inhibitor drug (Lynparza) to help reduce my current risk (while waiting to find out about surgery options) since my cancer was HER- and I have the BRCA mutation, and I feel like things are changing all the time to give more options to people who have this mutation. So even if your children turned out to have the mutation too, a few years down the line, their options could look different to yours now.

I don't have children, but I can imagine it must be really hard for you to think about telling them and how to do it. My gene was inherited from my dad, and I know he feels some guilt over it, but you can't help what you don't know. Plus, if he had known, the alternative is that I wouldn't be here, so I'm happier to be here living all be it with a faulty gene!

I have two siblings, my brother recently tested negative for the mutation and my sister is waiting upon results. I would say to remember that it's 50% chance, so your children could just as well be unaffected, and there is so much power in knowledge. I think they will both be happy to still have their mum and hopefully they can be empowered with the knowledge either way once they're eligible to be tested.

Best of luck with everything x

Hi Rosie, thank you so much for all the information you’ve shared. That really helps! I have an oncology meeting on Tuesday where I was due to be started on Docetaxel and also be told about post operation medication so I will ask him about Parp inhibitor drugs. I completely agree that knowledge is power. My Mum had breast cancer and a year to the day later my sister found a tiny lump which grew rapidly but because she found it she got success (though gruelling) treatment. I myself found my aggressive cancer quickly although it went straight to my lymph nodes (the primary tumour was just 9mm and ticked right behind very dense breast tissue behind the nipple so not findable with fingertips) I was lucky that it went to my armpit which swelled and caused pain so I went to the doctors quickly and got put on the 2 week pathway…. Without the prior knowledge i wouldn’t have gone so quickly for a ‘raised gland’ … I knew I handed got cuts on my hand/arm etc. sorry I’m waffling but in my heart I do know knowledge is vital with cancer and I have the most amazing children and so we will hope for the best that they’ve not inherited it but if the worst is true we will make sure they are armed with knowledge and support and keep making sure we stay up to date with options for them….

I really wish you the best with your journey and I hope you continue to receive great care. Thanks again for taking the time to help. I can feel my initial shock turning to something more positive and stealy Xx 

Wow, it sounds like you and your family have been through the mill between you! I'm glad that you were able to be so observant to get your swollen armpit checked out and then to be treated so quickly, and it's encouraging that your mum and sister have both come through the other side of treatment too. Hopefully this will help when the time comes to explain to your kids, as even though cancer is really awful, unpredictable and scary, being observant, increased screening, knowing what to look for and early detection is what can saves lives and you're living proof of that x