Screening for BRCA (Breast Cancer Gene)
Archived Q&A and Reviews
Bad Genetic News, Tell Daughters or Not?
I am in my early 40s with two teenage daughters and have recently been diagnosed with an aggressive form of breast cancer. As part of my treatment, my doctor recommended that I be tested for BRCA1 (the breast cancer gene). I did not think that there was any possibility that I could have this since I don't have a family history of breast cancer (however, I don't have many female relatives, and some of the ones I do have died early of other causes). Anyway, to my complete shock I did test positive.
My question is how to broach this subject with my daughters. My older child asked me point blank what effect my illness would have on her future health. I answered her vaguely, but will at some point have to be more specific (I did not have the test results when she originally asked). My impulse is to shield them from this since they are already reeling, but on the other hand I am not comfortable lying. Obviously this is something that they will need to be told at some point since it is an important part of their medical history, and I am worried that not being honest with them now will have future consequences when they are told the truth. So I am looking for advice from anyone who has faced this question.
I would tell them. We have a similar situation and the kids know about it, and they are younger than yours (but we are not in the throes of fighting illness right now).
Do you want them to hear about it from you, or someone else? It's a good opportunity to talk about genetics, treatment, medical advances, strategies for dealing with genetic issues. No reason to panic about some future event that may or may not happen; plenty of reason to be well informed and ready.
Another idea, because they DO need to know at some point so they are tested and followed closely by a medical team, is to put it in your will, and in their father's will. That way the information is there. similar situation
Although I haven't dealt with this situation directly myself, I would argue for telling your daughters the truth, especially since they've asked about it already. I have a good friend whose mother died of breast cancer when we where in college, and because of the knowledge she gained from that experience, she's been hyper-vigilant about screenings herself - and because of that vigilance recently caught her own breast cancer early and had it successfully treated. You and your daughters are going through a lot right now, but knowing the facts may make them more confident rather than less, and will save you from having to worry about hiding information from them.
Wishing all the best for your treatment and recovery
Your post really choked me up. What an amazing mother you are! You're going through all of this, and your main concern is what to tell your kids! They are so blessed to have you, tell them that!
No, kidding, I know you won't do that (but you should). I also wouldn't tell them any dooming info. The truth is science is just figuring all this out. The idea of genetics is still being tweaked. What causes/cures cancer is changing daily. Why worry them for something that may be old news by the time it may or may not affect them? If your oldest is asking, I would say ''Honey, doctors/scientists/surgeons are still trying to figure all of that out. Here's what I've learned about the best ways to protect yourself...'' And maybe pass on info she can be in control over (deodorant, under wire bras, etc, that have proven to be a leading cause). She can't change her DNA no matter if it's written in stone or not. When she's older she'll understand that. I wouldn't give her info that she has to hold onto helplessly. Just positive constructive info that she can empower herself with. now go take care of YOU
I think if they feel like they have some control over the situation, the news about the genes will not fall so heavily. So, I suggest that you tell them now that since you have cancer, they are at increased risk because they are you daughters, and it would be a good idea to start a cancer prevention program. The usual things are: get exercise, eat well, reduce exposure to toxins. Here is more info: http://www.drmostovoy.com/What_Can_You_Do_to_Prevent_Breast_Cancer.htm Then, I think it is good idea to get into specifics about the breast cancer gene before the oldest leaves home.
Sorry you are dealing with this. Anon
You have to tell your daughters the truth--now. That allows them the fair chance to consider all their options knowing they have the gene. It has become more and more common these days for women who have the gene to take proactive measures rather than risk cancer. Your daughters would be denied that possible option if they are not informed. You answered your own question really. Just tell them. anon
I am so sorry that you got such terrible news about your health. You must be very worried.
I think that you should tell your daughters as soon as possible. They asked you and this is information that they need to know. I like to have information as soon as possible so that I can figure out how to address it in my own time frame. Knowledge is power. If you know the worst then you can prepare for it. I think that keeping people in the dark (unless it is clear that they want to stay there) is condescending. My dad refused to tell us what stage his cancer was because he didn't want us to worry. He had the information so we didn't need it. It sucked. Now his wife is withholding information from him and treating him like a pet. He's a smart man and should have all available information.
My opinion is that telling your daughters is treating them with respect. They are going to find out at some point. Just bite the bullet and get it over with. So sorry this is happening to you
I just finished a biography written by a woman in a family of women dying young (40s) from cancer, What we have : a memoir / Amy Boesky. She grew up knowing her genetic history and spent her childhood and early adulthood counting down her biological clock, feeling stress as to when she needed to find a mate and have kids so that she could have her ovaries and breasts removed after babies. She birthed two girls and decided not to tell them of their genetic lineage, wanting them to grow up carefree. As the book ends, the girls are still quite young. I haven't walked your path, but have a friend who is walking it. I think I would tell teenaged daughters as matter-of-factly as possible. Or talk to my genetic counselor about it. From the book, it sounds like the rule of thumb was (is?) that if a woman has her ovaries and breasts removed at an age ten years before her ancestors got sick, she has a strong chance of no cancer. And that the genetic lottery is still there, your daughter may not carry the gene. heart is with you
First off, I'm sorry that you are going through this, and hope for the best outcome for you. Secondly: Tell them, tell them, tell them. Honestly, if they have access to the internet, they probably already know that they could be at risk. As teenagers, they are old enough to take in this information, even if they are already dealing with their mom being ill. I was 31 when my mom was diagnosed, and I will always appreciate her full candor in terms of what it would mean for my sister and I. Your daughters deserve to know the truth of the situation. Hoping for the best for you
First of all, get re-tested. Labs do make mistakes, too (I work in one). Then talk to a good genetic counselor. Find out if your heterozygous or homozygous for the mutation (likely the former), and what is actually known about the mutation you have. There are tons of mutations in BRCA1. Not all of them are high risk mutations. Really understand what kind of mutation you have and what's known about the risk increase. Use google/PubMed to find out more. Lastly, remember that it only increases risk and other factors are involved too. Your cancer may not be caused by the mutation even though you have it. Also for your daughters, find out how many carriers of that mutation never develop breast cancer. That might be a good statistic to know too.
I can't really speak about the sharing, it's a very personal decision if you just talk to them and say what's up and that you're trying to find out more or if you wait until you have something definitive to say to them. I think they should know if you have a high-risk mutation after all because they could have it too (50% likely if you're heterozygous) and might want to get tested (benefit is you would go to more preventative visits and spot a possible cancer earlier if you know you're a carrier).
Anyway, good luck in your battle against cancer - hang in there!! Scientist Mom
I've similarly turned up positive for the BRCA2 gene. I did the screening because my mother had the mutation - she was screened while undergoing treatment for cancer.
Your and my kids have an even chance on not having the mutation.
I think you should be honest and tell the kids that family history is one risk factor. (And that holds whether or not you have a specific gene mutation.)
But I would hold off on disclosing your BRCA1 mutation to them until they're in their mid-20s or so. There's nothing to act on before then. For women, it may influence time of first pregnancy - generally the earlier the better, and gives more time later on to decide what to do about potential prevention (i.e. preventative mastectomy.) But otherwise, be honest about family history but don't disclose more than what is prudently needed until later on.
Good luck with everything. BRCA2 positive
ABSOLUTELY you should tell your daughters. As teens they are old enough to handle this information, and it is imperative they know their family's medical history as they live their lives. My daughters' paternal grandmother died at age 40 of breast cancer, so they have a good chance of having the BRCA1 gene, and we are going to advise them to be tested when they're older, though it will be their choice. They will need to share that information with their own doctors as they go through life, and that knowledge will allow their physicians to watch for any signs of disease and perhaps test more often than woman who do not carry the gene (or are unaware that they do). You might save your daughters' lives, by keeping them informed and being completely honest with them. They can handle it. sk8ma
I am so sorry to hear about your illness. I am a breast cancer survivor myself ( 3+ years and going!).First and foremost you need to concentrate on your own treatment and surviving hardships of going through surgeries and treatments, chemo, radiation and then slowly taking steps to recovery from all devastating effects on your health. From my own experience the best advise I can give is just take one day at a time.
As they say every time we board a plain, ''Place the mask on yourself first and then help those around you who are unable to assist themselves''. Your survival is the first priority right now for you and your young girls. As for genetic tests, it is sad that yours turned out to be positive but you have information you can work with for the benefit of yourself and your children.
Fortunately for me I tested negative for BRCA. However mother of one of my daughter's best friend was tested positive after her breast cancer came back after 12 years remission. Her daughter also tested positive. At the age 23 she did double-mastectomy and reconstructive surgery right after. Yes, it is sad. But she has much much better chances to be cancer free and live a long and happy live. She is such a brave young girl and I admire her for willingness to share her painful experience with other people who might face the same choices. She and her mom with their story went on the local LA news multiple times. She did online blog about her experience. Here is the link: tickingtimebombsblog.com/category/brca-genes/ You probably heard that Angelina Jolie did the same recently.
Your daughters need to be tested as well and try get as much information as you can on the choices. There is no need to hide it. You would need to have an open discussion with your daughters but later, at the right time.. Do not worry about it right now. Get well yourself first. with love and hugs, your fellow breast cancer survivor.. survivor
Don't consider lying. They do need to know, but I think you need some time to absorb this for yourself and consider how they should be informed. You can safely say at the moment that you are still investigating.
I had some bad (and inaccurate) medical news about my breasts in my teens. It's important that your children understand that what we know now medically may change as they become women.
--If they have a good personal rapport with their doctor, or a counselor, you might want to call him or her for advice.
--There are almost certainly online breast cancer support groups whose members have faced the same question with their own kids.
--But probably one of the best resources for how to break news like this is a genetic counselor. They do this for a living. Here's an organization I found that may be a good place to start: http://www.nsgc.org/ and of course a wikipedia link about genetic counseling: http://en.wikipedia.org/wiki/Genetic_counseling
Good luck with all the above. Lola
tell, she wouldn't ask if she wasn't ready for the news. anon
Dear worried parent, First let me say that my heart goes out to you. I can't imagine how hard it must be to be facing this diagnosis and worrying about your daughters' futures. While I have not faced this question myself, my mother was BRCA1 positive so I thought I would share my story with the hope that it might help in some way.
My mother only learned of her BRCA1 positive status after having breast cancer twice (age 50 and 55) and when she was already dying of a rare uterine cancer (at age 60) that is also associated with the BRCA1 mutation. When she got tested for BRCA1 she knew it was too late to help her but did it with the hope that it could help other family members. We were all devastated to learn that my sister also has the BRCA1 mutation (I tested negative), but we also see this information as a great gift from our mom. Happily, my sister continues to be healthy and undergoes surveillance twice a year for breast cancer. Unfortunately, there is no way to accurately screen for ovarian cancer and it is usually diagnosed at a very advanced stage. Therefore, following recommendations for BRCA1 carriers, my sister plans have a preventative surgery to remove her ovaries sometime in her early 40's when she is finished having children.
Instead of seeing this BCRA1 status as "bad" news I would like to encourage you to try to see it as empowering information-for you and your daughters. Not only can this information now help guide your medical care but if, God forbid, your daughters turn out to be BRCA1 positive, this information could help them prevent cancer in the future.
You didn't say exactly how old your teenage children are but our situation is quite different in that both my sister and I were in our 30's when we learned of our mother's BCRA1 status. There is no easy answer as to when to tell them of their potential risk-it is such a delicate and personal decision. One thing to consider is that there is no medical benefit to them knowing their BRCA1 status now since their risk would not go up until their 20's anyway. This is why it is usually not recommended to test for BRCA1 under the age of 18. If you haven't already done so, I think it might be really helpful to discuss these questions with a genetic counselor who specializes in BRCA mutations. I had a wonderful experience with the Stanford genetic counselor Alex Lebensohn and would also highly recommend Dr. Allison Kurian also at Stanford if you are looking for an Oncologist who specializes in breast cancer and BRCA1 (or even if you just want a second opinion). Dr. Kurian is a true expert in the field and developed an online interactive "Decision Tool" for women with BRCA mutations that is also very helpful: http://brcatool.stanford.edu/brca.html (note-you may need to try different browsers since I found it doesn't work on all of mine).
I know my story is different from yours but hope that it helps in some way. My thoughts are with you and your family. Rachel
Hello, I'm chiming in late on this question with my own thoughts. I'm not in your situation, but my mom has ovarian cancer that appears to run in our family. Having our genetic information is SO important and SO empowering. A positive BRCA test is not a verdict on your daughters' future, it gives them the power to take more control over their health and their destiny.
Know, too, that your daughter(s) may test negative and then be released from anxiety that they may be feeling about their own risk.
Personal story: If my mom had known that her aunt died from ovarian cancer, perhaps she would have caught her own cancer before stage 4. Now, because she has stage 4 ovarian cancer, her chance of surviving 5 years is very low. With Stage 1, her chances would have been over 90%. There is no reliable early screening for ovarian cancer so genetic knowledge is POWER! I remember when my kids were asking about the ''birds and the bees,'' I applied the rule that if they were asking, then it was time for me to give them an honest answer. Maybe that rule would make sense for your daughters now?
Wishing you health and healing, ovca daughter
I can't let pass the suggestion that your daughters could take charge of their health by avoiding things ''proven to be a leading cause'' of breast cancer, such as deodorant or underwire bras. I was diagnosed with breast cancer last year. I have finished chemotherapy and am halfway through radiation. I have done a lot of reading, gone to workshops, participated in a support group, and have grilled my various doctors about all aspects of my diagnosis and treatment. There is NO single thing ''proven'' to cause breast cancer. Even having the BRCA gene doesn't mean someone will inevitablty develop it. As the mother of a teenage daughter myself, I would be frank about your genetic status, particularly since one of your daughters asked a specific question about her own health. But please, don't burden them with worries about their underwear choices. I'm so sorry about your diagnosis -- my treatment has gone smoothly so far, and I would be happy to be a source of support should you feel you need it. I wish you all the best! inwoodave
My mother died of breast cancer at 45. She was diagnosed at 41. Three years later they isolated the gene, and I always knew I would get tested. I wanted to have a child first, but when I finally did do the test, at 37, I was BRAC2 positive, as was my sister. We both underwent preventative double mastectomies and salpingo-oophorectomies.
In my 20s I chose a gyn from the high risk cancer center at UCSF women's health-- a tremendous resource. The physicians are researchers and up to the minute on information and procedures and they followed me very closely. At the very least, get your daughters into a program like this. I had a CA-125 test for ovarian cancer every year, as well as a twice yearly ultrasound, since ovarian cancer is harder to detect.
I don't want to scare you--your daughters are young, but I met women at the Carol Franc Buck center at UCSF who were in their 20s with breast cancer. Tell them. They don't need to even have the test now--but they can take action regarding their health in other ways.
You can contact the moderator if you'd like to talk to me. --Lucky
I'm really sorry you are dealing with this, and that you also have this gene and thus this worry for your children. I think you should tell them, so that they can protect themselves. There might be things they'd do differently, ways they might try to cope, that they might want to try, and sooner rather than later. For instance, my stepsister's mother died at 35 from aggressive breast cancer, my sister responded by going fanatically organic and has not had any issues, at least so far, and is closing on 60.
A counterexample, done in anger (not out of concern, as you are doing!) is the following. My aunt got cancer and did not tell my mother, and when my mother found out she was very upset. In response my mother would not tell me (no, I had nothing to do with my aunt not telling her) what kind of cancer it was, for a long time (ok,there are issues here, agreed!). Eventually I learned it was ovarian cancer, which puts me at higher risk for both that and breast cancer, both of which require extra vigilance. I was very angry not to know sooner, to be able to try to protect myself the best I could, sooner. I think they would want to know so that they can also look out for themselves, so that together you and they can do the best you all can to protect them. It sounds terribly hard and stressful, they are lucky you are taking such good care of them through all this!! Take care! anon
I'm so sorry you are going through this. I was lucky - I got tested and learned I had the BRCA1 mutation 15 years ago, not long after the test became available. I had prophylactic surgeries in my forties, when my daughters were 11 and 8. I told them the surgery was so I would not get sick like grandma (who died of breast cancer). In their late teens I told them about the genetic mutation and that when they were older they would talk to a genetic counselor and decide if they wanted to get tested. I think they've put that information off to the side, and do not think about it much - (I do remind them every so often that they need to be even more careful than others about healthy eating and sunscreen). But they are now in their twenties and will need to get counseling soon. I think it's much easier now that Angelina Jolie has gone public. You've received a lot of advice. I want to recommend two great resources: FORCE: www.facingourrisk.org -- an advocacy and support organization for those with BRCA. You may already know about the UCSF Cancer Risk Program (415) 885-7779. The genetic counselors there are the best people to advise you and your family about what to tell your daughters and when. leslie