Hi all,
I received the news that I have the faulty BRCA2 gene mutation, got the phone call as I got home after round 3 of my EC chemo. I have 1 more round to go then 4x Paclitaxel. I was diagnosed with BC on 3rd Nov last year. Initially I found the lump back in May but they weren't able to find what I could feel, sent me away and told me to come back if things changed. They did so back I went. Kick myself now I didnt go back sooner obviously but I try not to look back. My BC was ER+ PR+ HER2 negative. Ive had 2 lumpectomys, 3 sentinel nodes removed and thankfully all were negative.
My mum had and survived BC nearly 9 years ago, at the time genetic testing wasnt an option. Since then there have been a couple of new cancer diagnosis in the family and due to me being 39 I just qualified to get tested. I have 2 teenage daughters so these results mean a lot to us as a family. No we dont want to deal with this but for my girls its really important we use this info. Knowledge is power.
Well ive told myself knowledge is power for the last few days since finding out and I really was able to draw on all the positives. I felt like we've been given the upper hand here. I want to live a long life, as long as humanly possible. Knowing this fault can help me achieve this. And then... 3am comes around. Ive worn a bra top to sleep in thats a bit tight and I'm getting a shooting pain in my boob. Nothing unusual, I have had surgery and I am coming off my period which my boobs always kick up a fuss about. But the sudden realisation that my boobs could actually kill me. Not just because I have breasts and breasts get breast cancer but because I have this faulty gene. I can't even think right now what it means for the rest of my body.
So I guess I'm here looking for reassurance. Anyone that might have had a similar journey to me so far. I havent had a discussion with genetics yet and so I have literally no idea whats coming only that it means more surgery? Extra hormone therapy now instead of just Tamoxifen for 10 years? Are there specific questions I should be asking genetics or my oncologist?
I chat heavily on the breast cancer now forum about breast cancer and chemotherapy but there isnt a lot of talk there about the BRCA2 gene. Any help and support would be greatly appreciated. Thank you ♡
*edited. Must remember to get the BRCA the right way around
Hi FoxGem I am so sorry to hear about your recent diagnosis. This must of come as a shock for you especially while you are undergoing chemotherapy, that’s tough enough in itself. You are right though, knowledge is power. Knowing you have BRCA can change any future treatment options if necessary, but more importantly it is knowing that you can now take control and stop any future reoccurrence. This will involve surgery, and this is something to discuss with your oncology team. It’s a huge decision to make, but it is one that you make for yourself to make sure you have a long and healthy life.
My heart went out to you when I read you have 2 teenage daughters. Because you have the gene does not mean that your girls will, but it does mean they have a 50% chance. When you broach this subject with them will not be easy for you. They cannot be tested until the age of 18, but this doesn’t mean they have to do it straight away. Most of my family have chosen to do it around the 30 year age mark. If they do test positive, they do not have to opt for surgery, they can have regular screening including mammograms to check for early signs. This is huge for your family I know. I don’t think there is a right time to tell them, but I also think they need to be told. I think it will be important for them to know that this does not change them, but that there is a risk this could affect them in their future. I would discuss this with your genetics team, see if they have any resources to help with this. I have looked to see if I could find any information to help you with this, and couldn’t find anything in the MacMillan resources, but I will ask my team in case I have missed anything. I did find some really helpful information from a genetics counsellor. I will add a link below for you.
My youngest was 8 when I was first diagnosed with womb cancer, and 12 when it came back in my lungs. I didn’t tell her anything when she was 8, and that backfired on me when it came back. She was angry that I kept it from her, although I thought I was protecting her. At 12 she had counselling which was arranged by the MacMillan nurse. At the time we thought I had 6-12 months to live, so it was devastating for us all, 12 years later I am still here to tell the tale. Although BRCA is in my family I do not have the gene, but ironically I was still diagnosed with a hormone positive cancer at the age of 39, so my treatment mirrors the breast cancer hormone therapy. I started on letrozole, then switched to anastrozole which has kept my cancer stable. You can read my journey by clicking on my profile picture and going to my page.
Hormone therapy has not been easy for me, but it’s keeping me alive!
All 3 of my girls are doing well now, although my youngest has recently had further counselling which she says she wished she did sooner. My middle daughter now works in cancer drug trial research, something that she says she only got into because of my diagnosis and our family history with BRCA. Again it’s about knowledge being the power, for us to be able to take control of this damn disease.
My sister has the BRCA gene and she decided to have a hysterectomy and yearly mammograms to monitor her. Unfortunately a tumour was found, and she decided straight away that she would have a double mastectomy. She had implants done at the same time, and was home the same day! I was shocked to be honest as to how quickly she was discharged. She did try letrozole but found the symptoms too much, so decided not to continue with it. She has just had her 5 year all clear check up, so is doing extremely well.
She had a tough year, with chemo and surgery, but it was a year that gave her her life back! X
