What does BRCA1 mean for my independence?

Hi and a very warm welcome to the online community

I'm sorry to hear that you have the BRCA1 gene mutation. Not being in that position myself I don't have any experiences to share with you but I noticed that your post hadn't had any responses yet.

I don't know if you've used the search bar in this group to look for other women in a similar situation to yourself. I typed "children", for example, into it and found several previous posts talking about having children. You could have a look and see if any of them are in similar circumstances to yourself and respond to those who you want to talk to more.

Wishing you all the best with what ever you decide to do.

x

Hi Emilia,

thanks for sharing your story. I know exactly how you're feeling. I'm 26 and I've been diagnosed with breast cancer, just to find out later on that I carry the BRCA1 gene mutation. I found myself in the same situation regarding mastectomy, future children, surgery, ovarian surgery, etc. and I do share your point of view.

Taking a decision on your future at that young age is not easy - I find myself battling with these thoughts too. But, at the end, I believe you have to think about your own health first. 

I was worried too about how I would look like after surgery. The diagnosis really got my self-esteem about "how I will look like after that". I had breast-conserving surgery (at the time of diagnosis didn't know I was BRCA positive) and yes, the first time I saw the scars it has been very scary! I realised my body changed. But as it changed, my mind also got used to it and now I'm completely fine with that and with the idea of having double mastectomy at the end of my chemo.

For when it comes to ovarian surgery - I really feel you. I asked myself the same questions. I've never felt that maternal instinct too and always been open to other options like adoption. I haven't had ovarian surgery yet but I found myself in a position very similar just not long ago. I had to face the decision of freezing my eggs or not before chemo (as it can make a woman infertile). During the decision process, I received the news about my gene mutation and, as you, I felt that I don't want to pass this gene to my children. 

For this and other reasons, I decided to NOT proceed with freezing my eggs and taking the risk of becoming infertile and never have children of my "own blood". It has been a difficult decision but, for what I can advice, you have to do what you feel yourself to do. There's no right or wrong. 

Of course, there's selective IVF but are you willing to go through the process? If not, would you be happy to adopt or consider a donor? I asked myself these and other questions. And no matter what you decide to do, don't let others influence your decision. After all, it's your body and you only have to decide what you want to do. 

When people ask 'what if you meet someone who wants to have kids?'.. well, a good partner should support you and your decisions. And if the partner is not happy to not have children of their own.. well, then it's not the right person for you :)  A good partner should be understanding of the situation and should consider other options.

This is my opinion. And of course, we'll always find people who don't agree, think this is a negative approach but also people who understand or say this is a positive approach. But in the end, you and you only are the one who has to take the decision. What really helped me has been thinking that more than a loss, my decision will lead to a gain. If you can't pursuit a road, there are a million others available. There will be challenges but without challenges, we cannot grow as persons. It really depends on what you want to focus on. 

Happy to talk more if you want, it seems we have a very similar mindset and it would be nice to discuss it together.

Isa 

Thank you so much for taking the time to respond and for the warm welcome! x

Hi Isa,

Thank you so much for your response! It is such a relief and comfort to hear from someone with the same mindset!

I'm really sorry to hear that you didn't get the chance for early prevention before breast cancer. I hope your treatment is going well. It must have been immensely challenging having little time to make these decisions. Your positivity and strength is really inspiring!

It would be really nice to keep in touch and talk further.

Hi to you both,

Sorry to butt in on your conversation, but this is the first time I've actually found somewhere to discuss this and hear accounts from women with BRCA mutations in their 20s.

I am so sorry to hear of your diagnosis and wish you the best for your treatment and recovery.

I'm now 28, but I found out I had BRCA1 when I was 18. My Mum died of ovarian cancer when I was very young. Her mother had died of ovarian cancer in her 40s and my aunt had suffered from breast cancer at around a similar age. 

Like you, I feel very blessed to have been alerted to this. But unlike you, I haven't actually been all that proactive about it. 

I have tried to raise it with my GP and have been told repeatedly that I will start breast screening when I am 30. There has been no mention of immediate preventative surgery. Like you, I was told not to worry about this until I was in my late thirties. It does concern me looking on these boards that others in their 20s are electing to have surgery. I don't know if anyone is aware whether you have to pursue this privately, or whether I just need to press the issue with my GP? Any advice or information would be very much appreciated by anyone less naive than I. 

In relation to children, I told my husband about the mutation in the very early stages of our relationship, which I do not regret as he has been supportive and understanding. Perhaps controversially, I still want to have a child if I am able. It is probably selfish on my part, but I always think that I am glad that my parents chose to have me despite my mum's family history. I have seen that specialist IVF is an option, which is something I would like to pursue if I can. 

Again, I probably seem so naive to you ladies on here and I am so sorry if any of the above is offensive or insensitive. I am rather guilty of having put this out of mind for the past decade.  

Thank you, 

Hannah xx

Hi Hannah,

Thanks for sharing your story! There are a couple of really supportive facebook groups. It's been quite helpful to hear other peoples' stories. They are so varied that it just goes to show that the only right decision is what feels right for you.

Regarding early surgery, I haven't been back to my genetic counselor since my post-diagnosis appointments as I definitely wanted some time to process, especially since I need to focus on uni. At the time, they were very reluctant to support my plans for early surgery but they were also very reluctant to let me get tested and I am glad that I did. I had to be resolute and quite forceful when I wanted to be tested and I expect I might have the same experience when I contact them about surgery. Of course it is worth considering their advice but ultimately it's your choice. The research I have done and stories I have read have only supported my decision for early surgery - I should say that this is in regards to having a double mastectomy, I will wait to decide what to do about my ovaries - but this might not be the conclusion everyone comes to. Might be worth getting in touch with your GP, even if you just want a bit more info. 

I think it's also just deciding when is most convenient for you. Recovery time is different for everyone and depends on the type of surgery/recon. 

Your mindset is totally valid! You'll find a lot of women on those facebook support groups who share your point of view. Women who go for IVF, natural conception, adoption, no kids. Women who go flat, recon or the medicinal route. There's no easy option, so you've just go to do what is right for you!

I'm glad to hear you've got a supportive partner! If it is not too personal, can I ask how you went about that conversation early in your relationship? No worries if you don't want to share!

I hope this was somewhat helpful! All the best!

Hi to you all, 

I also apologise for butting in on your conversation and am sorry to hear about your BRCA mutations and the decisions you are trying to make regarding preventative surgery and future choices such as children. 

I am in my 50's with 2 adult children. My mother died of ovarian cancer when i was young and her younger sister died of breast cancer the year before her. My cousin had metastasized breast cancer at 34 and also died. The genetic predisposition to these cancers were never discussed in my family. In 2000 and aged 39 my sister got breast cancer. Between 2000 and 2012 my sis had 2 recurrences of breast cancer. Then in 2014 my sis got ovarian cancer. I asked my sister to have the genetic test and she had BRCA1. My daughter was 14 at the time and said she would like to know. Last year my son told me he would like to know.

Hannah you say you had the genetic test at 18. How old were you when you decided to have the test? Were you family very supportive? I ask because i have delayed having the test until my children are closer to an age were they can then have the test if i am positive, my daughter is now 19 and my son 21. They both want to know and after reading on this forum it appears to me that many young people do want to know if they are positive and what their options are. 

I do believe if genetic testing was openly discussed with me as a young person (and available) i  would have wanted to be tested.

Thank you

xxx

Hi again! 

Emilia42 - Thank you for letting me know about the Facebook groups, I've just joined a couple and already they seem to be full of supportive and informative advice. I think just knowing that it's okay to discuss it, is actually a bit of a weight off my shoulders. 

I too remember having to be quite forceful about wanting to be tested, I think they were angling for me to go through counselling and then wait until I was a bit older, but I don't regret finding out. I just wish I'd maybe been a bit more proactive and asked about my options at the time. Though I have now requested an appointment with my local genetics service, thanks to the advice on these boards! 

I told my partner quite early in our relationship, probably after about 2/3 months, just before I introduced him to my family. I approached the subject by telling him that my mum had died of ovarian cancer when I was young and it lead on from there. He was very supportive and told me that he too had concerns about his own family health history. It hadn't actually struck me before then that it must be a pretty common anxiety. It was something that had worried me in the past, I had dated a guy at uni for 3 years without ever telling him. But like everything else, I don't think there's a wrong or a right way to approach these things. I think I just did what I thought was right for me at the time. 

I hope that makes sense and is helpful in any way! 

Caddie57 - Hi, thank you for sharing your experiences and I'm sorry to hear about the loss of your family members. 

My family became aware of the genetic fault around the time my mum died of ovarian cancer when I was 13. My aunt had tested positive for it after suffering from breast cancer, but her adult children had taken the decision not to find out. I totally understood their decision and can see that it's really important that it's dealt with in your own time and way. 

As far as I recall, I received a letter from the Genetics Service shortly after I turned 18 inviting me to a consultation to discuss my family history. I was pretty determined already that I wanted to be tested as soon as possible. I personally didn't like the uncertainty of not knowing. There were also a few practical benefits, I've always been aware that I needed to make certain choices in relation to contraception i.e.

Whilst no one in my family opposed me having the test and BRCA-1 had never been a secret, I attended the testing and consultations on my own. It is something that I find hard to discuss with my family. I have very few surviving female relatives on my mother's side and I understand that it is a very emotionally charged subject for my immediate family. 

I do not regret having the test, though I understand that it is such a personal choice. I am grateful that I had the opportunity to have the test and find out. I think it has given me plenty of time to think about it, and having read other's stories I think I am now ready to start making some more proactive steps if I can. So yeah, I think that the time and the certainty that it has afforded me, have definitely made it a positive choice for me. 

I hope that is helpful in any way!

Thanks,

Hannah xx

Hi again

Hannah12345 thank you for your response. I also have very few surviving female relatives on my mothers side. 1 cousin and me. My mother died when i was 8. The genetic predisposition to their cancers were never discussed with my sister and i. I also find it is something many people including some GP's and specialist's just do not know how to advise on. Some of my friends over the years have not been able to comprehend how virulent this gene is in my family and why i have so few family members. 

I know if my mother knew she was carrying a gene that her children could inherit i would not be here. The same applies to me. In 2000 when my sis was diagnosed with breast cancer i had a 12 month old and was pregnant with my second child. I was very distressed about the possibility of passing this gene on and even more so of leaving my children motherless and with the possibility of inheriting this gene.

Thank you for sharing your reason's for taking the test Hannah. I am ready to take the steps towards having this now. Depending on the outcome i know it will place my children in a position to have time on their side to explore their options and be proactive with them. This is quite a journey.

You have been of great help.

Thankyou

Caddie57

Hi Hannah12345 and Caddie57,

I hope you don't mind be joining the conversation. I am really sorry to hear about all the loss you have both experienced. I can't thank you both enough for sharing your experiences, it certainly makes me feel less alone in all this.

The gene has had a similar affect on my family. My sister told me the first time she suspected there was something going on was in 2016 at my grandfather's funeral when she realised there were almost no women there. 

Hannah12345 - I'm so glad you found those facebook groups useful! I think you're absolutely right. It really helps to have a space where you can talk about it. Honestly, it was a little unsettling in the beginning having their posts popping up on my newsfeed all the time as it was a constant reminder of the things that scared me! But it was ultimately extremely helpful as it eventually integrated into my life, educated me and made it seem so much less taboo and frightening!

I really relate to Hannah's thoughts on early testing. My parents were waiting till I was 21 to even tell me about the gene, not knowing that my step cousin had already told me when I was 17. I didn't ask them about it out of respect for what appeared to be a very difficult topic of discussion. I was 20 when I decided to pursue testing but it was very difficult as the gene is on my dad's side of the family in Norway so medical records were not available to my GP. I eventually had to approach my parents about the topic and it turned out my dad had been tested the year before and found out he was a carrier but they had still wanted to wait to tell me till I was 21 (even though they had told my sister years before when she got suspicious at the funeral).

I wasn't angry as I know how difficult this has been for them but I do think this choice had adverse affects on how I processed the situation. It was such a taboo topic in my family and we still don't talk about it even now. When I found out I had the BRCA1 mutation it was even scarier because they had made it into some big, scary secret. I wish they had told me when I was younger so we could have worked through it and educated ourselves together so that I would have been truly ready and well infromed when the time came to get tested.

I still think it was the right choice to get tested when I did. It's given me time to think about how I want to tackle things. It also encouraged my sister to get tested and now she can rest easy knowing she doesn't have it! It sparked a few helpful conversations with my parents but I still wish we could talk more about it.

Caddie57 - I can only imagine how difficult this choice is from your perspective. I know my dad really battled with the idea of being tested and my cousin has decided not to as she feels like knowing would negatively impact her choices. I'm glad to hear that you are having these conversations with your kids though. I can understand from their perspective why they might feel that it is their right to know too. I wish you good luck with whatever choice you make!