Did you tell your teenage children?

Miller1353

I was flabbergasted when I read the research article that was posted this week about BRCA positive women and men. It said that 80%+ told their children within a month of confirmation of the mutation. So, did you tell your children right away? How old were they?  My children are 17 and 15, and I have no intention of telling them until their early 20s. Knowing you might be BRCA+ is a lot to digest as a teenager. Their pediatrician is doing clinical breast exams. My onco said that they won't need any more monitoring than that until their early 20s. Wondering how teenagers handled the news if you chose to tell them...and what your onco said about surveillance. Thanks!

racheljoy

I'm 21 (I know a little older than teenager but still applicable) and I found out about the BRCA mutations in September.

My mom was diagnosed when I was 9 and since then I've always known that I would have a higher chance of breast cancer. When she was diagnosed again in September, she was very honest with me every step of the way. When she found out that she was BRCA positive she drove to my office immediately and told me, no hesitation.

I'm glad she told me, but it kind of shook up my world for a while. I'm a senior in college right now and at the time it made me feel like everything I did was suddenly unimportant and that my friends and peers didn't understand the value of life and that sort of thing. Kind of heavy stuff. But I also believe that knowledge is power, and I am happy I know what I know now.

That being said, had she waited until after graduation, it might not have been the worst idea. I'm sure she told me because of her cancer diagnosis--it directly concerned us at the time and was extremely relevant. 

I think that if breast cancer isn't directly effecting the lives of your children right now (as in, someone close to them doesn't have cancer at this moment), then wait until a more transitional time, such as when they graduate from high school or even college. That way they are already thinking about the future.

 I hope that helps!

Miller1353

It does help, and thank you for replying. I look at my two bright, funny girls, and I can't imagine the burden of knowing that you might or might not carry the mutation when you are not even old enough to be tested. When I read the research stats, I started second-guessing myself. I am going to stay the course. I appreciate you taking the time to respond.

JenniMack

Hello. My name is Jennifer. My mom found out she had cancer when I was 14. In 2003 my mom found out she had the BRCA1 gene. I am now 23. She told me when I was 14 about it. I just got my results back today and I found out I have it as well. My mom passed away in 2009 from the cancer. She had stage 4 cancer for 6.5 years. I have a 3 month old daughter and my husband and I was talking about when we should talk to her about it and we decided when she is around 14 and 15 because at that age they do understand and she will know the risk of everything so hopefully she will do what she needs to to stay healthly and not get into some bad habits. That is the way I think of it thought. It did help me understand everything better at that age and I also took care of myself for the most part. Know that I know that I have the gene as well I am going to be making sure I get back in shape and take care of myself the way I really need to be. Hope this helps a little. You know your children and if you feel as if you should wait then do it. You know what is best for them. 

Stormynyte

My children know that I am going to get tested for it, and they ask if I've done it yet about once a week. When it is done, I will tell them the results. With our family history that includes quite a few cancer types, even if the test is negitive, I want them to be informed and watchful for any type of cancer. There is no age limit for this crap to happen to us and if it does I want them to know all they can to try to catch it as early as possible.

hannah423

i am 20 years old and am BRCA2+. My mom was first diagnosed with cancer in 1989 and i was born in 1991. Then my mother was then diagnosed again in 2000 when i was 11. And my mother was very open with me and my siblings about what was happening. When i turned 17 I wanted to get tested and i bugged my mother to get tested so i could figure out if i was to get tested or not. finally when i turned 19 my mother got tested and so didnt my siblings and i. My mother tested positive and I was the only one out of my siblings that tested positive! Its hard to understand at first, i was very upset. But now i look at it and am ever so grateful that i got tested! I am so happy that my parents were so open with me about what was happening. I dont know what i would do if i didnt get tested because i knew about everything and knew i could possibly carry the gene. I have started making a lot of changes in my life in order to try and prevent myself from getting breast cancer and have had to make several choices that a 20 year old shouldnt have to make! Rachel put it very clear "knowledge is power." If i hadnt have gotten tested i dont know what type of mindset i would have been in! 

Hope that helps! Feel free to contact me with any questions!

Ginger48

I found out I am BRCA2+ last spring when I was diagnosed with BC and my daughters were 16 and 19. I did not tell them at first because I could not figure out how to do it. My older daughter had been having trouble with her periods and the Gyn dr wanted to do an ultrasound. That is when I realized that this is important information for them and their drs to have. I sat down with them and explained the 50% risk of testing positive that they have and that if they do not want to be tested they can start mammos at age 25. They handled it very well and do not want to be tested at this time. I am glad I told them because I think they would be upset if I had kept such important information from them. I had built it up so much in my own mind and it was such a non-event when I finally told them.

Feel free to PM me if you have more questions.

Nissanz1

Maybe someone can help me with a ridiculous problem.

My wife was diagnosed over 20 years ago and kncck wood a million times has been disease free since. Our kids were little then and we didnt tell them. My wife is very secretive about her situation and doesnt want anyone to know what she went thru. Her friends dont know, her parents died without knowing. The only ones who know are me, her brother and my sisters. To this day, she will not tell our kids.

I think this is wrong, and i have had fights with her about it. my daugher especially, needs to know. She refuses to say anything and absolutely forbids me to do so. My duagher is 29. I tried to discuss this again this week, she stormed out of the house. She has said if i tell her she will leave ( i dont take this seriously) She is deathly afraid that my daughter will confide in a friend, who will tell their mother blah blah blah.

We have talked to my daughter about the fact that both of her grandmothers had it, and she must be very vigilant. I even asked her if she wanted to be tested but she said no.

My wife feels that since she knows about the familiy history (grandparents) she knows enough, and she (wife) says she will tell  her to get a mammogram. I dont think its enough. And i am afraid if something happens, my daughter will never forgive us. Rightfully so.

I want to respect my wifes wishes, and privacy, but iI need to protect my children and i  dont know what to do here, and need some thoughts from someone who has been through it 

Ginger48

Nissanz1- Is your wife BRCA+? If she is, your daughter should have been getting mammograms starting around age 25 and her dr needs to know to watch out for ovarian cancer as well.

This is a hard situation because you want to respect her privacy but your daughter needs to know her risk too. I am so sorry you have to go through this. My daughers know but that is because they were 16 and 19 when I was diagnosed and tested for BRCA and there was no way I could keep it from them.

exbrnxgrl

Yes, a very hard situation, but keeping secrets rarely results in anything good. Knowledge of all of ones health history is important. Skipping a generation with known disease is not a good thing, especially since your wife was young when dx'ed. I understand privacy but I strongly believe your wife owes your daughter this info. What are her objections to being open? Is she ashamed or scared? Perhaps you can gently overcome her objections once you understand why she feels this way.

Caryn

Racy

Nissanz1, I am not BRCA positive but, like your wife, am very secretive about my diagnosis, therefore I understand something of your wife's perspective.



Is your wife positive for the gene? In some ways, the answer to this is moot since your daughter has a risk anyway with family history but is that risk greater with a mother's history too, as opposed to the two grandmothers'?



If your daughter has accepted the seriousness of her grandmothers' history, and if she can be tested based on that, what benefit is there medically in adding your wife's history to the mix?



Why is the information that has already been given to your daughter insufficient, in your opinion? How did your daughter respond to that information? Did she take it seriously and indicate that she took it as a warning to be hyper vigilent? Or did she say 'I'm not too worried as Mom didn't have BC'? Does she want to be tested for the gene and can this happen for someone whose grandmothers had BC but whose mother didn't?



It's a difficult situation but I think my questions above are relevant.

Nissanz1

Thanks to all of you for your replies.

My wife was never tested for the gene. It was never brought up to her by her Doc. I don't believe that they had gene testing in the 1990, which is when she was DX. I have asked my daughter if she is interested in being tested, and she said no. I can't push it. Maybe her decision would be different if she knew about her mom, but i doun't think it would. Can't say why.

To Racy - thanks for your response and empathy. To answer your question, i believe that my daughter has taken the grandmothers history seriously. She is a smart kid, and very responsible. She goes to the gynocologist every year without prompting (but wont discuss it with me) and he knows of the grandmothers history. (but obviously not of her moms.) Maybe I'm wrong, but i do believe the benefit of telling her is that her doc might care for her differently in terms of being vigilant, prescribing tests, etc, if he knew of the full history.

I can't explain my wifes reluctance to discuss this, but i am sure you understand it way more. She has expressed a fear that it will get out in the neighborhood thru the other mothers, because my daughter will tell her 2 best friends. Honestly, i think she will tell them, she is going to have to talk to someone about this, but i think she could tell them to keep it to themselves. Another thing is that my wife, is otherwise a very intelligent woman, thinks she is protecting her by not saying anything. Doesnt want to upset her.

Also my wife (i didnt mention this before ) had a mastectomy - she was diagnosed in 1987, had lumpectomy and rad, then in 1990 or 91 (dont remeber) had another dx in the same breast(diff pathology, but neither was aggressive, one estro rec+ the other progest rec +) so they did the mastectomy. My wife seems to be deathly afraid of her (and others finding out) . At one point, right after a Dr visit where she got a clean bill of health, i told her we had to tell my daughter and she got a little nuts but ended up saying, just make sure you dont tell her the details about my mastectomy.

I am going to try to have a rational conversation with her one more time, and tell her i wont tell the details (she really doesnt need to know that) and if i dont get anywhere, i will have to make a decision. I really want to respect my wife, but she is being stupid and i dont think i can sleep at night without at least attempting to help my kid. If she walks out and doesnt come back, it will suck but i have to do the best thing.

Anyway, now that you have more details, i'd be open to any guidance, because i realize that i am not walking in my wifes shoes and probably cant totally empathize with her, even tho i try. Sorry for the long post 

exbrnxgrl

Racy,

In taking family medical history to determine if BRACA gene testing is advised, every generations history counts, particularly ones mother and sisters. Additionally, if one of these first degree relatives was dx at a young age, there is a greater chance of there being a BRACA mutation than if those same family members developed bc after age 50. Even with knowing your grandparents history, a mother or sister's history is more significant. Nissanz1, your daughter does need to know and she needs to have an evaluation by a genetic counselor. Whether she chooses to test after hearing what they have to say, is up to her. BTW, I am very open about my bc but this has nothing to do with testing. Remember, a detailed family history is taken before it is determined if you are even a candidate for the BRACA tests.

Your genetic counselor should thoroughly cover pros and cons of testing and then you get to decide if you want to proceed, but you can't even take this first step unless you have all of your family medical history. I have two adult daughters and am in the process of determining if testing will be appropriate for me. If I am positive, then my daughters will have to make their own decisions but they will be fully informed should that decision needs to be made. Hope this makes sense.

Caryn

Racy

Nissanz1, thank you for your reply. I do understand how your wife feels, especially taking into account the information of her mastectomy. The prospect of her secret getting out could provoke a high level of anxiety for her. She is depending on you to keep her confidence and could feel devastated and lose trust in you if you breached her confidence. I'm saying this because that's how I would feel.



I think you have made a sound assessment of where your daughter is at with this situation and the information she has. It is good that she is being vigilent.



If you feel that her doctor might be more vigilent in his care if your wife's situation were known, would your wife be willing to speak to the doctor in confidence to give him the information, or even write him a letter? I know there is a tiny risk with this that he could inadvertently mention it to your daughter but it is unlikely that would happen.




exbrnxgrl, your information is also helpful. But what if the daughter has made the decision not to see a counsellor regardless? What if the doctor had the information from the mother and cared for the daughter as if she were BRCA positive? How does a doctor care for a high risk patient who declines testing for the gene? (I realise she may not always have the current doctor). Nissanz1, perhaps you could share exbrnxgrl's information with your wife and see if this changes her view.



Is there a way that you could speak with your daughter with the assurance that the information (without mastectomy) would be kept a family secret? Knowing your daughter and your family relationship is this possible?



This is a question of two competing ethical values, and which of the two is the higher order value. Most would probably argue rightly that your daughter's health is the primary concern, but can this be satisfied without breaching your wife's confidence?

exbrnxgrl

Seeing a counselor does not mean you agree to be tested. A counselor simply evaluates your family history, a complete family history, including types of cancer in the family ,age at onset of disease, age at death, racial and ethnic heritage. Some groups, such as Ashkenzi Jews, are at higher risk. Then if all of info fits a profile for those who may have the BRACA gene, it is offered to you. You don't have to take it and your counselor will certainly discuss this as well. I probably don't empathize quite so muchswitch the secrecy aspect as my family, friends, and school community all know. I have been embraced by love, kindness and generosity that I could never have imagined and I never have to spend a minute worrying about how to keep it under wraps. If I want to regain normalcy in my life, cancer will have to be part of my new normal.

Caryn

PS: as a mother I could never imagine my desire for privacy trumping a serious medical issue that could effect my daughters.

Nissanz1

Thanks for your replies, again.

As far as the trust issue, Racy you are right its an issue. In fact, when she was first diagnosed, i had no clue she felt she wanted to be private about this, and i told a number of our friends, because i needed help with the kids. She didnt talk to me for 2 months because of that. A lot of time had to go by before she got over that. I dont want to go thru that again. 

I thought about the idea of having my wife talk to my daughters doc, but as you said, at some point what if she switches docs, and what if that happens when we are not around any more. So its a problem. I also have a feeling that my wife wont talk to her doc. Period.

Another thought i had was to talk to my wifes doc and ask him to mention it to her. Problem with that is that she will know immediately that i spoke with him.

Since my wife refuses to have an intelligent conversation with me about this and just shuts down and walks away when i try to bring it up, i thought also about writing my thoughts down in a letter, and just giving it to her on my way out the door to work, just tell her i am begging her to read it.

I would even lie for my wife, which i feel very uncomfortable doing, ever, but i would do it. All i want to say to my kid is we had an incident 22 years ago, it was very small and caught very early and nothing happened since. The lump was taken out, and no further surgery or treatment. This way she would know the history and my wife would be spared her knowing the details. But i cant tell my wife fthis because she wont listen.

My wife is one of the smartest, most intelligent women i have ever known in my 60 years. It just amazes me how totally irrational and "Ostrich-like" she is regarding this.

Obviously, a major dilemma, i am afraid there is no easy answer. 

Nissanz1

xbmx -  your comment about being a mother - i agree, thats what makes it even more confusing to me. On any other issue, my wife would run through fire for our kids, she would give up her own life. On this issue it seems not to be the case.

I truly beleive that as intelligent as she is, she has convinced herself that knowing the grandparets history is enough to protect our daughter. 

exbrnxgrl

Would showing what is needed to determine whether dd is even a candidate for testing help? She needs to know that risk factors from first degree relatives, mothers and sisters, play a fair weightier role in determining if one should be tested or not.

Caryn

Nissanz1

As i said, i am thinking of trying to talk to her thru writing and handing her a letter, that is one of the points i want to make. Thank you.

financegirl

My mother died of this disease almost 40 yrs ago (at 42 y/o) and I was dx almost a year ago at the age of 56.  My cancer was extremely aggressive, I've since finished treatment and I was BRCA tested.  In addition to my mother, two months before I was dx, my aunt (mother's sister now 81) also was diagnosed.  I sent out emails to my family explaining I was being genetically tested and the consensus was that if I got a positive result, many said they didn't want to know. 

My sister has a now 21 y/o daughter and her husband was angry that I'd even think about telling her now which I would have respected.  I tested negative so I did pass that on to everyone.  I think more than anything, my sister, her daughter and my female cousins said they were not willing to make any hard decisions right now if my results came back positive which is fine but that's the difference - I think knowledge is powerful but that's me.

exbrnxgrl

Yes, knowledge is power! Even if you test positive, you are told exactly what the implications of that are and then you decide what action to take or not.

Caryn

Racy

Nissanz1, I think the letter is worth a try. You could include some of the information and suggestions here. Pick a good time to give your wife the letter when things are good between you and she's not stressed. You sound very sensible so I'm sure you know how to write the letter. Don't forget to include that you love your wife.

Ginger48

Nissanz- I personally like the approach of telling your daughter about the small cancer without the full explanation of the surgery. She will have the info she needs to be safe. My daughters would be very upset if I hid that history from them. They do not want to test now but have the knowledge that they need to be monitoring closely. Your daughter needs that info too. Having grandparents history only is not good enough. The letter is a good idea. You can give her time to process it and not just react emotionally. Good luck.

steelrose

This is an interesting and important thread. My father was diagnosed with bc in the 1990's, no BCRA test for him back then either. I had no idea that a man could pass along these genes to his daughter! I was much more concerned about heart disease, which has killed three generations on my Mom's side, including my Mom at age 50. So I was very diligent about eating right, not smoking, and exercising regularly to keep my heart strong. But without BCRA testing, and little knowledge of my bc danger, I went without mammograms and was diagnosed at age 45, Stage IV bc. I have no proof that this bc was passed on from my Dad, only a strong suspicion. But I honestly didn't plan on a mammogram until 50... that's how sadly naive I was. 

Nissanz... your post touched me on a couple of different levels. Like your wife I have been somewhat secretive about my diagnosis, mainly because I don't want to be viewed differently, especially in work situations. And like Racy, I understand and empathize with your wife... bc is traumatizing. Secrecy, paranoia, depression, anxiety... none of it is abnormal as far as I'm concerned. It seems almost like your wife doesn't want to open up this chapter of her life again, and who can blame her? She'd just like it to disappear. But there are other people involved here... your 29 year old daughter, and any children she may have. I don't have kids so I wasn't tested for the BCRA gene. But if I had been armed with that knowledge myself, I may not be writing this from a Stage IV perspective. I do hope that you can convince your wife to tell your daughter herself... I think it may help your wife as much as it helps your daughter to open up and tell the truth about what she went through. And your daughter will have the knowledge and awareness to protect herself so that she may enjoy a long and healthy life.

Wishing everyone the best!

Rose. 

racheljoy

Hi all,

I need to chime in from a daughter's perspective here. I've read all of your comments and definitely respect what people have written about privacy, but if this information was kept from me, I would have been outraged. 

Your daughter deserves the right to her health and all of the information about her health. It's good that her doctors know about her grandparents' medical history, but I would think the medical history of her parents' is even more important. 

If you know that your wife is worried about this information getting around to other people, then why not tell your daughter that, too? I think she will already be upset when she finds out that this secret was kept from her for so long. It's important to let her know why it was hidden; hopefully some of the anger she may feel will be replaced by a sort of understanding and respect for her mother's wishes. 

You're in a tough position here between your wife and your daughter. But really...this is a serious issue and I think you need to take the initiative, for your daughter's sake. Health is not a matter that should be taken lightly. Your daughter deserves all of the information she can get.

I hope no one is offended or upset by my opinion! 

exbrnxgrl

Steelrose,

If it's any comfort to you, most cases of bc arise spontaneously, with no genetic connection at all even with a first degree relative involved. Yes, it might have been nice to know but there is a high likelihood that there was not a genetic connection.

Caryn

steelrose

Caryn...

Thank you for your reassurance! But I do feel strongly that children should be aware that men can carry these genes too, and pass them along to both sons and daughters. When I was diagnosed and they found out about my Dad's history, they wanted to test me. But because I have no children or siblings, the issue was dropped. Awareness is important, and you are absolutely right... knowledge is power!!!! We are making strides and I hope we continue to do so for the sake of future generations... 

Ginger48

Steel rose- I agree. My mom was diagnosed a few weeks before me. She was 80 at the time. Her BRCA test was being held up and my dr did not want to wait so I got tested. When she was tested it was negative. Mine was positive and it came from my dad's side. He died of prostate cancer a few years earlier If mom had been tested first they would not have tested me. My treatment plan changed dramatically because of my test and I shudder to think that I would have been walking around with the Precancerous cells found in my pathology from my BMX. Daughters deserve to know their family history.

Stormynyte

I think child's health outweighs wife's privacy. As hard as it would be to do, I would have to tell her one way or the other.

steelrose

Ginger...

I'm so glad that they caught it early, and I wish you the best! The BRCA testing can be an amazing preventative tool in this fight.

Nissanz1

Well, i tried to have another discussion today, but it blew up. She put her hands on her ears, and started screaming the minute i brough tit up, and then she walked out. All she says is that her life is screwed up and all i do when i bring it up is remind her . She obviously has a problem and has never dealt with this, since 22 years ago, when it first happened. I've alway known that. And she wont even talk about remotely considering counseling.

As a last resort i wrote her a letter and included some things i found on the internet that show why my kid must know, (since she wouldn't talk about it) . She threw it in the garbage wihtout opening it.

I don't think i have any choice but to go against her wishes and have the conversation with my kid myself. If i end up divorced because of it, then so be it. This is so depressing. And stupid