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Seeking advice about talking to children about a hereditary BRCA1 mutation

13 REPLIES 13
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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

good luck with talking to the children Suze_J. my husband was in group no 8, but i think my dad was in group 5!? anyway, glad you felt the evening helped too.
think i shall probably have the risk reducing ovary and fallopian tube removal surgery soon (perhaps within the next month).....and although im currently going through a 'chemo-pause' (chemo plus tamoxifen has meant no periods (yay), but hideous night sweats and interrupted sleep (boo!)).......im not looking forward to 'proper' surgically initiated menopause - but i dislike the thought of ovarian cancer even more, so think this is a no brainer. just dont have the head space for the boob surgery yet - im still having cording issues with my carm following my previous surgery, so want to get that sorted first!
just trying to find a surgeon who can confirm that they have a rigorous pathology system which involves examining slices of all tissue removed (as suggested by Adam Rosenthal on monday evening)!
Suze_J
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hi Victoria,
Yes - same meeting!! I was in discussion group 5, but my husband might have been with yours as he said there was someone who had just been through the process of telling their children. I did also find the evening very useful and informative. Your son sounds very mature! i think we are going to say something this weekend, but like you will take the positive this is how it will help approach. My family is a bit different in that I am the only one in my immediate family to have had cancer at an earlier age and there has been no breast cancer in the recent past at all. I am beginning to assume it's from my Dad side as that has been all males apart from me! Thank you also for your advice which is incredibly helpful. My daughter has just started secondary school and I had already told them about my history, but was going to inform them about this as well just so they can keep an eye on her. I was also going to speak to her friend's Mum as I think if she's worried about talking to us, she will to her. I will see how my son is: when I told them about the breast cancer he was more interested in knowing when he could go back to eating more strawberries but screamed the street down when we said unfortunately we would have to cancel our holiday. For a 6 year old this is how it should have been and I am very grateful!! Anyway thank you so much again and good luck with all your decisions - I'm hoping to have made some very soon as well!

susanx

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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Suze J - did you go to the meeting? was it organised by GOSH? was it an information evening for BRCA1 and 2 carriers?? i went, and thought it was really interesting and very informative. i also met some lovely ladies during the discussion group session afterwards (group 3). i wonder whether we went to the same talk and perhaps you were in my disucssion group? my dad (who is also a brca carrier) and my hubby also went, but they were allocated different discussion groups.
also, after hours of agonising, taking lots of advice and many sleepless nights - we decided to speak to the children a couple of weekends ago.
actually, the reality of the discussion was far worse than the prospect of it and i cant tell you the relief that we both feel having got that conversation over and done with. its early days i know, but they all seemed to cope with the news very well. it was summed up quite nicely by my son (12) when he said......'well, i think its really great to know this news mum, your family have been living with this for years, and didnt know - if you had known about this mutation then your cancer might not have been so big - now we can all protect ourselves as the doctors will keep a close eye on us wont they.....AND theyre making such big advances in genetic medicine mum, it will all be very different for us in about 20 years'......ha! my husband and i were blown away by the maturity of his attitude and comments.
i felt the following really helped preparing in our talk with the children:-
1) not rushing into the conversation, giving us time to come to terms with the discovery ourselves, before sharing it with them (i was determined not to become emotional and to turn the news about the discovery into a positive i.e. this new knowledge is power). this positive attitude/approach from us (which incidentally we also used when we told the children about my breast cancer diagnosis last year), really helped them remain positive and receive the information in a calm and measured way.
2) we wanted to strike a good balance between providing them with some information, but not providing too much, we also wanted to make sure we didnt accidentally leave out any important info - so, we did a lot of homework, and used the Royal Marsden document (and other advice found on the internet about talking to children about hereditary genetic mutations) to help give us a framework - or 'agenda' to use for our discussions with them. this was essentially a list of pre-agreed bullet points that we worked our way through. this meant our discussion had structure and it was therefore easier to stick to a pre-agreed 'message' that we wanted to give them. (happy to give a copy of these notes to any1 if yr interested - PM me)
3) we sat all the kids down together and spoke to them collectively (as we wanted to encourage an open forum/discussion) - but afterwards, some 4/5 hours later, we spoke to the children individually, to check their personal understanding of our discussions, to make sure their understanding was correct and allowing them to voice any particular concerns that they either hadnt voiced before or had been playing on their minds.
4) before we told the children - i had a quite word with key members of staff at their respective schools and warned them about the conversation that we were planning to have with the children. this way, i was able to ensure that they would keep a close eye on them and enabled me to check if there were any specific mechanisms in place, should the children struggle with the news. i also provided these members of staff with a copy of my notes, which ensured that should the children want to talk to teachers, they were receiving a consistent message from us all.
so, all in all, it went really well and im so glad that weve now had the conversation. all kids dont seem bothered as they feel that for them, 'this' issue is a lifetime away - and theyll worry about it as and when they need to and they dont need to now (phew!)
now - ive got to start tackling the issue of deciding what preventative surgery and when!
Suze_J
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Apologies for not getting back about the meeting - it's next Monday, not the one just gone. I'll let you know how it goes. Thanks also to Rattles for the book which I have just received.

susan x

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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

thanks Suze_J and Rattles x
Rattles
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hello ladies,



I have a brac1 mutation and wanted to post this book which I think is really helpful. It was recently reviewed in Breast Cancer Care's Vista magazine and though its a bit american (its an american book), I think you will find it really helpful.
I am sorry if the print is large. Rattles

Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny (A Johns Hopkins Press Health Book)

Suze_J
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Thank you so much for that Victoria, I will have a look. I have a friend who found out she had a BRCA1 mutation last year and she has mentioned an information evening in London that I am trying to attend on Monday (not heard back yet if I can go). There will be a talk on telling your family, so if I do go I will let you know how that goes. To be quite honest I think I am still in denial as I feel remarkably calm - a bit like when I was diagnosed I was just pleased I wasn't wasting anyone's time, which is daft really!! I am sure at some point I will look at my lovely kids and get very upset, but at least I know that they will get the maximum protection possible which they might not have done had I not gone ahead with the test. It's about the best I can do for them given the horrible role of the dice we seem to have been given!
Thanks again,
susan

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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

ladies,

just stumbled on this web-site and document, which i thought was very helpful so thought i'd share...
www.facingourrisk.org (USA based webiste for hereditary breast and ovarian cancer)
new to this forum stuff, so not sure about the 'rules' relating to sharing specific web-links (copyright etc),
but once on main website page under the tab/heading 'information and research' look at the last sub-heading 'FORCE PUBLICATIONS'
click on the fourth option 'Newsletter Archives' and then on the 'family' tab.
this brings up a list of 6 documents, which may be of interest when talking to family and/or children, but specifically the 2008 'Do i tell my children?' document and the 2012 document 'kid's response to test results'.
victoria
Jo_BCC
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hi Vic1402

I have sent you a private message (PM) explaining how to reply. If you still have problems please let us know by email to: Moderator@breastcancercare.org.uk, and we will try to help you further.

I have also put for you below the link to BCC's publication talking with your children

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/talking-your-children-about...

Also, our helpline team are also available if you want to talk to them further regarding talking to children or anything else that may be bothering you. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

Kind regards,

Jo, Facilitator

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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hi Wendy and Susan,
firstly, thank you both so much for taking the time to send a quick note. Secondly, i'm sorry to hear that you two have also recently been told you have a mutated gene - although i wouldnt wish it on anybody, i dont feel quite so alone knowing others are going through a similar thing. the guilt thing resonates with me too and ive found it a very difficult, emotional time - in some ways i have found that this gene diagnosis has 'messed with my head' more than my cancer diagnosis (at least the cancer was just related to me - this gene thing has tentacles that spread, and has the potential to affect other family members that we hold so dear, especially our children). Wendy - will be thinking of u on 2 may - good luck with the op and i just hope that both your daughters gene tests are negative (keeping everything x'd) - and Susan, finding out today....it must all still be very raw for you (i walked round in a complete daze for the first week or so - and really struggled to hold back the tears everytime i looked at the children), your circumstances are not straight forward either, and im happy to share any info i get, which may help.
i've also received a PM - and i'm really sorry (lovely lady who sent it), but despite searching the forum 'help' pages and topics, i just cant fathom out how to send a PM reply back to you (which i do very much want to do) - (any advice greatly appreciated) - but in the meantime, thanks also to you for sending me a quick note, with your thoughts (no - it wasnt rambly at all! and i found it very helpful - thank you).
i called my genetic counsellor a few days ago and left a message for her asking if she had any specific advice about talking to children - or could she point me in the right direction - but i havnt heard back yet. i was so shocked when i last met her (when she confirmed the mutation) that i could barely speak or think - its only now that ive thought of lots of questions! she did explain that she would be very happy to meet with me again whenever i wanted to chat things through - but they only hold an outreach clinic at my local hospital once a month, so you do have to wait a while for appts. the conversation we did have with her during my appt seemed mostly geared up to dealing with potentially affected relatives of mine who were over the age of 18, but i will re-post on here as and when i do hear back from her, assuming i get some helpful advice.
i have also joined another on-line group 'BRCA umbrella uk' - which is specifically for those with a brca mutation, but havnt been brave enough to post anything on that forum yet (it took a while to sum up enough courage to post here!). perhaps i will ask my question on this site and once again, will re-post any specific advice here, just in case its helpful for you guys (specifically susan). you may want to consider joining the group too?
i'm seeing my oncologist later on this week (to kick off discussions regarding preventative surgery measures) - and will see if he has any pearls of wisdom also.
thank you lovely ladies
victoria x
Suze_J
Member

Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hi,

I am sorry, but I also can't give you much advice, but I just wanted to say I have just found out today I have a BRCA2 fault and am wondering how to deal with it with the kids (mine are 11 and 9). I feel even worse as I was previously tested for a specific BRCA2 fault that has already been found in my family and as I wasn't positive for that I had told my kids it was highly unlikely it was genetic and not to worry. I have subsequently had further testing and found out I have a different fault......the thingwished really wished you had never said!! Anyway I would also be incredibly grateful for any advice from anyone and I will definitely read the Royal Marsden document.
Thanks,
susan

Wendy56
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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

Hi I also found out about 3 weeks ago that I have the BRCA1. I am due to have a bilateral MX on 2 May. Not really sure about telling your children as mine are 33 and 30 but what I do know is that it is very hard to deal with emotionally and I had real guilt feelings at first. My 2 daughters are now waiting for their results which are due next week so dreading it but they have decided if positive they will also be going for surgery. If you ever wan to talk just PM me as not sure that many on here have got a BRCA mutation.

thinking of you x x
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Re: Seeking advice about talking to children about a hereditary BRCA1 mutation

re: my earlier post - not hugely relevant, but my youngest child is eight (the number eight was strangely replaced with a smiley face with shades on!?)
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Seeking advice about talking to children about a hereditary BRCA1 mutation

Was shocked to learn 3 weeks ago, that i have a mutated BRCA1 gene, was classed as 'high risk' due to significant family history on my father's side (seems silly now, but my family had naively assumed that the history wasnt 'relevant' as it was on my father's side) - i'm 4th generation BC sufferer (that we know of) and most of us were in our early 40's when diagnosed). (had BC diagnosed May 2012 (aged 41), chemo/surgery(WLE), sentinel node biospy and rads etc, finishing mid Jan 2013). The rest of my family (sister/brother/father/aunts/cousins etc now all considering having the test).
its early days, but i'm currently considering a number of preventative surgery options (and no doubt, i'll be keeping a close eye/or posting on this forum as this process progresses).
my particular issue at the moment is how to tackle this subject with my children? i have read a very good document produced by the Royal Marsden (called 'a beginners guide to BRCA1 and BRCA2), which includes a helpful section on how to talk to children about the discovery of a hereditary BRCA mutation. But that is the only resource i have been able to find with specific advice about talking to children. I'm not relishing the prospect of a conversation, with my children (aged 14, 12 and 😎 but my gut feeling (at the moment - which was confirmed by the general 'gist' of the Royal Marsden document) is that there are many benefits in being open with children and to encourage an open dialogue, based on trust and inclusion, rather than 'wait until they are old enough' (whenever 'old enough' (to receive ' this news is???). But im also well aware of all of the risks and pitfalls involved with telling them (argh!)
i appreciate that when, how and if you talk to your children, about this subject/news, is a highly individual thing, but wondered if any of you had had personal experience of talking to your children and had any specific advice/pearls of wisdom for me? any help or guidance you could provide would be very helpful.
Thanks x