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BRAC 1 massive family!

6 REPLIES 6
anon1
Member

Re: BRAC 1 massive family!

hi bunty, i can appreciate you are trying to look after others u also have to look after u though. my heart goes out to you as u will be aware it isnt good news u have to tell them but ur trying to protect them. your daughter sounds so supportive also. bunty sometimes i find the thought of it difficult but im 100% sure im glad i know if i developed cancer and someone in my family knew of faulty gene but choose not tell me i would be so angry but as i said earlier we al deal with things differently and im only speaking from a personal point of view. please keep me posted on the outcome and please look after yourself too love lainey x

Bunty
Member

Re: BRAC 1 massive family!

Thanks lainey,

The marsden advised aged 35 years for my daughter, I guess they have to have a cut off point somewhere. I can only hope my brother has screening, he is of a nervous disposition, so I guess she is trying to protect him. My dad I think died of prostate cancer aged 53, but I am not 100% sure, so I have sent off for his death certificate, My hubby might take him out for a curry and have a word. All this treading on bloody egg shells is getting on my nerves. I'm the poor mug who has had the damm cancer, all I'm trying to do is help people........

Bunty x

anon1
Member

Re: BRAC 1 massive family!

bunty thats something your brother and his wife need to agree together i know she will be scared for her children but although i get scared i am so relieved i know about it as surgery wont be easier but it will be a lot easier than getting cancer i know if u have faulty gene it doesnt automatically mean cancer but the risks are very high to gamble with. but everyone is different and we dont all agree on the same thing. can u be assured your sister in law will speak to your brother as she seems so against it? u done the right thing telling your daughter. when people know about it then its their choice but i hope your sister in laws speaks to him. who adv on screening at age of 35 for ovaries? it may be different depending where u live but im in scotland and got screening at 30yrs old love lainey x

Bunty
Member

Re: BRAC 1 massive family!

Thanks for your support.

I made the step and told my daughter I carry the BRAC1 gene, she was surprisingly good about it she kissed me and said thankyou! She says she will welcome the screening that she will be offered- she has to wait 6 months till she stops breastfeeding, something to do with hormones. She has to wait till she is 35 before they screen for ovarian cancer.

My son who is also in his 30's was less than happy about screening for prostate when he is 40. Also to check his "breasts" did not appeal to his manhood too much. However I gave him copies of my letters and I hope he will take it on board, His wife was supportive to me as her mum has also had BC. So I hope she sorts him out, along with the grandchildren.

As to all the cousins, not done that yet, can't quite find the right time but I will. I am scared by their response in case I send them all running frantically to their doctors!

My brother was much more trickier, I haven't actually spoken with him yet, but have spoken to his wife who is like the gate keeper, she says she thinks he does not want to know about it, but she will talk to him about it, She says he will get checked up at his own GP for prostate screening soon. Also she does not want to know about BC and prostate in her family either. She does not want to talk about it socially either with him and me. I offered copies of my letters explaining everything, but she declined. They have kids and also grandchildren.

I said to her what happens when my daughter sees your daughter and maybe mentions the subject, how would you feel about it? She says thats ok.

So there is my dilemma, Do I push it with my brother to know or do I let sleeping dogs lie?

Appreciate your advise or comments

Bunty x

ForumMember
Member

Re: BRAC 1 massive family!

hi bunty, i agree with pinkdove 1 that u should ask them 1st. and let your brother decide whether to tell the children.. although i do understand that guilty feeling you spoke about. i am 32yrs old with brca2 and my son is 12 and daughter 11years old and i do feel a sense of guilt. but i know 100 % i shouldnt as i dont blame my dad for passing it down. and there is nothing at the moment which could change it. the reason i am saying is ask them 1st is if your not prepared for the news it can come as a terrible shock. i know if u are aware of loads of cancer in family it can still be a shock. but for me i didnt know about all these cancers due to parents marriage breaking down etc. and all of a sudden a to whom it may concern letter arrived. i know the rest was up to me but still its a huge worry. thankfully there is so much they can do as preventative surgery but these also cant be taken lightly. i feel though that u shouldnt have to go around telling everyone i think u should explain the genetic testing to your kids and silblings only and if they want to know the results they can decide whether to tell your grand-children etc or give them that same choice of finding out. i believe knowledge is power but knowledge can too be frightening.. good luck in whatever u decide and please let us know how u are getting on. lainey xx

ForumMember
Member

Re: BRAC 1 massive family!

I am also in a similar position to you Bunty. I asked my extended family beforehand if they wanted to know what the results of my test would be and they all said yes.

I'm BRCA2 which is the prostate risk along with breast and ovarian.

I was diagnosed with breast cancer 13 years ago so I don't have the awful decision to make whether or not to have preventative surgery plus I'm now living with secondaries. My son, who is 21, has been told by the genetics counsellor that he doesn't need to worry about the PSA test until he is much older and hopefully by then things will have changed considerably to how they are now.

It appears that mine has come from my mother's side (both my mother and aunt died of it young) but the interesting thing is that my nan and granddad were first cousins so they said it come have come from both of them.

Maybe it's about checking out with them first whether or not they want to know? It is a hard decision to make but maybe the onus should be on your brother (if he wants to know) whether he tells his children and so on through the family?

Good luck.

Bunty
Member

BRAC 1 massive family!

I had breast cancer 8 years ago, had the full works, the lot. Just recently had a test to see if I am a carrier, and I am BRAC1. Now I have the uneviable task of telling my family the news. I will tell my children and their children the news, my brother, his children their children, and I have a massive family of cousins on both sides, Genetics people are really not sure which side it has come from. I am really worried about doing this, I have mixed feelings about telling people, somehow feel responsible, I know that is daft, I have a letter from the Marsden "to whom it may concern"

Also implicated in this is for some of the men to have PSA done for their Prostate, to see if they too carry the gene.