When to Tell Daughters About a Genetic Breast Cancer Risk

I was so glad to see this article, but as a BRCA mutation carrier who inherited the mutation from her father -- and who has a daughter AND a son -- I wish the article were called, "When to Tell CHILDREN About a Genetic Mutation." Men have breasts and get breast cancer -- my father died of it. And the medical establishment's ignorance of the connection between male breast cancer and BRCA mutations meant that I was diagnosed, at 34, with extensive locally advanced breast cancer rather than a small tumor.

BRCA mutations confer a higher risk of other cancers, too, that affect both men and women. As important as it is to think about how girls with developing breasts are affected by the idea of a potential mutation, I think that the emphasis on breast cancer has led to a feminization of the issue of BRCA mutation risk. This is potentially a life and death issue for mutation carriers who go unaware of their risk.

There's one problem I see here and it's not the article. It is, as always, the money. Otherwise I can understand why a parent would want to let their child know of any potentially dangerous mutations that might be passed down. The only caveat I would say is to find a good genetic counselor, one who can explain the risks and that biology is not always destiny.

I admit that I am not totally familiar with the latest thinking around these tests and treatments but I'm pretty sure girls and young women are not yet being formally encouraged to get double mastectomies because of potential genetic risk factors. I gasped out loud at the young women who said she wanted to get tested and potentially have a mastectomy "as soon as possible." This is essentially unremarked upon by the article's author.

Not to be crass, I'm curious if there is any thought given to nailing down life insurance before doing these tests - when I applied for life insurance after my first child, the application implied that testing positive for BRCA gene would exclude me from getting life insurance. Knowledge is power, certainly, and I'm sure most of us would rather know our risks than not, but life insurance providers are not the same as health insurance in that the former are allowed to discriminate based on genetic testing. I've avoided the 23andMe test until I understand this better.

I did not test for BRCA, but my children are still at elevated risk bec. I had the disease. They saw me go through the operations so no way not to talk about it. We talk about what can be done to stay safe.

I want to comment on the poster below who asks 'Can this become a self-fulfilling prochecy.' I find that to be deeply offensive. Both my Mom and Dad had cancer. While I try to do as much as I can in terms of mental attitude, exercise, diet, etc., some of it IS genetic. In that case preventive surgery can be considered and screenings can be life-saving.

Given the advances in detection and treatment over the last 20 years it seems a bit premature for a 20 year old to have a preventative double mastectomy.

I am concerned that this article does not mention the importance of decision-making regarding fertility and preventive oophorectomy. Young women need to understand the mortality risk posed by ovarian cancer among women with BRCA mutations. Fewer women with mutations develop this cancer - lifetime probability is estimated at 40 - 60% in women with BRCA1 mutations, as against up to 70% for breast cancer - but it is far deadlier than breast cancer. Most ovarian cancers are diagnosed at stage 3 or 4, when rates of recurrence are extremely high with even the best treatment.

Young women are increasingly postponing child bearing until they have settled into their professional lives and found a life partner; a woman with a BRCA mutation needs to understand that oophorectomy is recommended by age 40 at the latest. I was fortunate to have a family and be diagnosed with BRCA-related ovarian cancer at 65; decisions on my career path and life choices would undoubtedly have been different had I known about my genetic status at 20.

The vast majority of young adults, teens and children that I have counseled that are at risk for genetic cancer risk inheritance have decided to delay testing until test results change medical management. I believe that having their questions, concerns and fears discussed in a clear and honest way helps them to feel like they are active, informed and responsible participants in their health care. It gives them a sense of empowerment so that having testing before needed is no longer a big focus.
Remember that when testing has no benefit in childhood, there is more potential harm in performing unnecessary testing.
Genetic counselors are experts in both genetic medical and psychosocial aspects of genetic risk management and risk reduction as well as psychological wellness.
The single most important way to benefit a family coping with genetic risk is to find an excellent genetic counselor who will support the family and each relatives wholistic wellness.

It's a complicated issue and so much depends on the child's level of maturity. It also depends on the specifics of the family situation.

We had to tell our daughter about her increased risk of melanoma when she was in elementary school - her father had been successfully treated for Malignant Melanoma when she was a toddler and her pediatrician recommended she start having regular mole checks when she was 7 years old. It was also part of the "why do I have to wear a hat and sunscreen on the playground?" conversation.

I have tested positive for Lynch Syndrome - meaning that I am at high risk for colon cancer. We had to have that conversation with her when she was 11 and I was found to have colon polyps and endometrial polyps at the same time. I was in and out of doctors' offices, undergoing invasive testing and procedures for months. She wanted to know what was going on and we weren't going to lie to her.

We treat it very matter of factly. Going to the dermatologist is like going to the dentist. It's what you do to stay healthy. Colonoscopies are miserable, but can save your life - when your doctor says it's time to start having them, do it. We have found that talking about medical issues in a fact-based, undramatic way makes it easier when dealing with a highly dramatic adolescent.

I find interesting that these children are allowed to undergo genetic testing. It is my understanding, in my state, that patients have to be 21 to make the decision themselves. There is no mention of the age of consent in this thoughtful article. I wonder how that varies from state to state, and how that influences decision making.

Great article. This is such a complicated issue that warrants serious attention. I can't imagine being weighed down with that fear at such a young age. Does it become a self fulfilling prophecy? There is so much women can do to prevent breast cancer. I hope this is part of the dialogue -- diet, exercise, reducing the use of estrogen based products and aluminum deodorants. New studies suggest upping vitamin D and iodine. On the emotional side-- learning to nurture yourself as many woman with breast cancer struggle with this issue. They are so used to taking care of the world around them but not themselves. And double mastectomies are incredibly risky. Implants come with many complications and health risks. Sadly, so many see this as the answer without full awareness of what implants can do to the immune system as well as the emotional trauma of losing part of one's femininity. Heart breaking for all women and their daughters going through this. I hope you keep going with this topic. Thank you!!

I've read several articles recently about "the breast cancer gene mutation" and am bothered that Harris continues that ignorant fallacy. My family has transmitted another genetic defect - CHEK2 -- that was not discovered until I had breast cancer for the second time - in both breasts this time. As I was being wheeled into surgery for a double mastectomy, the surgeon stopped the cart and told me she had just gotten the genetic report. Unfortunately, in addition to other relatives of my generation and those before me who had breast cancer, my daughter is a carrier, our son is not. But she and I now undergo the protocols that keep us safer: colonoscopies every three years and - for her - an annual routine of an MRI at 6 mo and a diagnostic mammogram at 12 months unless/until she has a double mastectomy. CHEK 2 also increases the chances that men have prostate cancer and breast cancer.

You want to tell your sons and daughters about serious risks when they are young. A college student who was late with an assignment came to my office to explain why. Her daughter, who was in her early twenties, was dying of breast cancer. The daughter had overheard her mom talking about breast self-exams and subsequently examined her own breasts. She found a lump and was diagnosed in the latter stages of breast cancer. Following that the family had genetic testing and it turns out that the gene was on the father's side and no one realized it because the women who had breast cancer were distant relatives. We have to explain difficult concepts to young people. We need to do it in a way that does not overwhelm them with negativity or fear.

Could you do a follow up article on how and where to get the testing? In this new age of pernicious-no-health-care, how can one be informed, yet retain privacy such that health care and treatment options are not precluded?

My child may have a BRCA mutation. She's not been tested because we're fearful that if she does carry the mutation, she may be unable to get coverage. We felt that way before Obamacare, we were more optimistic when the ACA was enacted, and now we're fearful that a genetic defect will be an uncovered preexisting condition, again.

The anxiety may end up being worse than the truth, but who knows?

A provocative article with much food for thought and discussion.

Excellent article and thoughtful analysis of a difficult topic. Thank you Jill Harris for starting this important conversation.

Knowledge is power.
Tell them, starting when they are very young.
The relief you will and the empowerment you will grant them will amaze you.

This is an excellent article, but as a BRIP1 mutation carrier who has had surgical intervention, I think that making the discussion solely about BRCA does the conversation a disservice - BRCA is A breast cancer gene, not THE gene. It is also an ovarian cancer gene.
There are other mutations, some of which are more common and others that are more lethal. There are many others who benefit from the content of this article if it weren't targeted to a specific mutation or included more kinds and a broader scope of discussion. I, for one, would be interested in how the discussion shifts when a higher risk for ovarian cancer is implicated. There is no "mammogram" for ovarian cancer and early removal of the ovaries or of just the fallopian tubes means that biological reproduction without further medical assistance is not possible.

I also cannot imagine NOT telling my girls (ages 2 and 5) as soon as they are 18, if not sooner, so they can decide if they want the testing for themselves. Their life decisions, including if and when to have children, are far too intertwined with knowing. Depriving them of even having the choice to make these decisions to spare temporary anxiety seems cruel. If they don't want to know, they don't have to get the test.

The irony of BRCA is that we have known about the mutation and its devastating consequences for more than 20 years, but there has been essentially no research aimed at stopping defective BRCA genes from leading to cancer. In addition, too few people realize that BRCA mutations can also lead to pancreatic and prostate cancers, as well as malignant melanoma for which no preventive options exist. (A physician myself, I have survived two BRCA cancers; my father, grandfather and uncle have not been as fortunate.) HeritX is a nonprofit organization that has taken on the mission of accelerating the development of approaches for defeating the BRCA mutation before it becomes cancer. We owe it to our children to focus on a safe prevention for cancer so that they no longer have to fear the agonizing decisions about genetic testing and removing healthy organs the article describes.
Irina Bock, MD

Ms. Harris has done an outstanding job with this sensitive and thought provoking article about an extremely difficult subject.

This is an interesting article with a lot of food for thought! We are each individuals and no one-size response fits all. One area which deserves space in this conversation is the fact that our cancer risk factors are also very influenced by what are known as our "environmental exposures". The study of epigenetics shows that we are not the sum total of our DNA. I am the daughter of a Breast Cancer survivor who does not carry this gene. However we all live in a day and age where the cancer risk for women is a 1 in 3 probability of a cancer diagnosis in our lifetime; 1 in 8 probability for breast cancer specifically. Because of that, I want to manage my exposures and help support my body so as to give it a greater likelihood NOT to develop cancer. (And, by the way, the statistical odds for men are slightly worse with cancer 1 in 2 probability of diagnosis for cancer during their lifetime and 1 in 6 will be diagnosed with prostate cancer.) We could all do well with managing our risks through our lifestyles as best we can. That means eating well, using products without known carcinogens and endocrine disruptors and managing our stress. I founded www.madesafe.org to help people find products made with ingredients that don't contain these kind of potentially carcinogenic and/or toxic ingredients. Most people think the government does this -- but they don't.

Information, education and prevention practices are also a critical part of this important conversation.

Sons are also affected by the presence of BRCA and should be tested. They are at increased risk for many types of Cancer (not as elevated as women, but significant.)
I was diagnosed with Stage II Breast Cancer in my late forties. At the time I had been reading about and considering genetic testing, but the Cancer beat me to it. Suspecting the strong likelihood that I had BRCA (because of family history) I chose to have a double mastectomy. My confirmed BRCA2 status has informed my subsequent treatment, medical, and lifestyle decisions.
I would whole-heartedly encourage young BRCA women to consider vigilant and aggressive screening to put off the choice of mastectomy for as long as possible. Live in hope, not fear. Stay well.

Sons can also carry the breast cancer gene mutation. Daughters AND sons should be advised about their chances of inheriting this from their parents.

Sons can also develop breast cancer - it is not as common in males as it is for females, but it does happen.

Sons, as well as daughters, should know this information about their parents, so they can decide if and when they also want to be tested - prior to marriage, prior to starting a family.

Both sons and daughters need to be educated about this.

A very thoughtful article that carefully explains the different sides of this very tricky question. Once again, science is challenging our values & concepts of morality. I think in this case, telling your child hinges on knowing your child & (maybe) having an idea of how she would process this information
I could see some girls turning this into something that empowers them to take control & plan. I could see other girls crumbling a little bit every day from this knowledge. A tough one. Thank you to the author for such a well-considered exploration.

It is possible that these sorts of serious discussions enhance self-esteem, but that this individual subject (breast cancer risk) is not the main factor. Are children of parents who discuss all sorts of serious issues with younger children doing them a favor? Some of that may be a play.

Breast cancer screening has changed dramatically over the past decade: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact... . BRCA 1 and 2 are not the only markers. The genetics are increasingly detailed. We do not know what prophylactic recommendations will entail in 20 years.

There is a strong history of breast cancer in my wife's family. It was stunning when she recently discovered that she had none of the major genetic markers (she is over 20 years out). Other markers may surface in future decades. She went through testing for our children, who were having daughters of their own, as a guide to whether our older son should be tested further. None of this was feasible for most of my medical career (I retired in early 2007.).

Beyond intellectual discussions of risk, how soon should a child be tested for those genetic factors? That still depends on parental decisions. Why should a child worry for years over something that may be approached entirely differently when they reach adulthood? At this moment it is hard to expect precise guidelines that would last. That does not mean conversations about these and other serious life-matters should not take place.

Amazing sensitive and informative article Jill!! A hard personal decision indeed.

1. My stepfather's first wife died of breast cancer in her 60's as I remember. They were the corner butcher/grocers and we knew them well.
2. Their daughter got breast cancer, say, about 50. She lived about 10 years the cured breast cancer having spread to her bones anyway
3. Their granddaughter got breast cancer age 35, died in chemo.
4. We've lost touch with the great granddaughter.....
BTW, all three women, our good friends, were smokers and drinkers.

I am the parent of sons. I have the BRCA gene, inherited from my father, and I underwent prophylactic surgery almost 15 years ago. Most articles about the BRCA genes, including this one, seem to lose sight of the fact that males are equally likely to inherit the gene and can also get breast cancer. The discussions of when and what to tell offspring merit study and attention regardless of the child's gender. Of course, health is the priority issue but it is important for young adults to know that you can be denied life insurance for having a positive serious genetic mutation.

If I was in the teen's place I would want to know and be tested. Some people like to remain uninformed because they cannot handle life. It is those same people who have health issues (later in life) because they could not (or were not taught) how to handle it. P.S. However, I would never get a big, ugly tattoo across my back.

What an interesting article.. Contrasting and nuanced points of view on a difficult subject in a thoughtful manner. I reached a clear conclusion on how & when, theoretically, i would handle things if i were placed in the difficult predicament described here, but I guess given some of the complexities described here, different people will reach different conclusions on when and how they would communicate about the facts to their daughter (or son). To me, this touching and informative piece is an example of why, beyond it's important coverage of politics and the arts, the NYT is so great...

1. Being a carrier does NOT mean you will get cancer.

2. Surgical removal of the breasts does NOT completely prevent the occurrence of breast cancer. There is still a risk of cancer arising in the remaining tissue.

3. Any surgeon performing surgery like that on a 20-year-old should be getting counseling him- or herself. It's way too early.

This is a wonderful piece and has prompted a broad spectrum of readers' different opinions and reactions, which has been very interesting to see. I think that this is proof positive that there is not a single, or simple, decision to make regarding when/how to inform kids and other family members about the results of genetic tests, or what to do when you yourself find out you are BRCA positive. What IS certain is that all of these decisions need to be carefully considered. Ideally, testing would be done in a setting where there can then be counseling about what to do, or not, next. Unfortunately, commercial entities like Ancestry.com and 23&Me don't provide this very crucial piece of the puzzle. And it will only get more complex when we learn more and more about the genetics of a huge range of diseases. Like all new technologies, the capacity to obtain information or perform procedures runs far ahead of our ability to know, with certainty, what to do with it.

Children should know as soon as they are adults so they can plan, particularly for BRCA1 mutation due to very high risk of ovarian cancer, which is more deadly and nearly impossible to detect. Removal of ovaries or tubes in a person with BRCA1 and 2 is the recommendation, not just removing the breasts. The risk is so incredibly high for these mutations, and there is indication that in later generations the age of cancer onset is getting younger. This happened in my family. We've lost moms and sisters and daughters from this mutation - if only we knew sooner.

If the current administration really does roll back the ACA's protections for pre-existing conditions, there are also financial elements of this situation to consider. Identifying a genetic condition specifically rather than routine screening for it - though much less efficient - could mean the difference between being able to afford health insurance and not. Having children tested for genetic conditions earlier than is absolutely necessary could mean a lifetime without insurance for them.

Excellent and important piece. I'm not sure if I would tell my children. It's a loaded deck to carry for a lifetime.

It wasn't until my daughter was diagnosed at 31 with triple negative breast cancer that we both learned we were positive for the BRCA2 mutation. She died in 2015, and made me promise to help raise awareness about these mutations, which occur in 1 out of 40 people of Ashkenazi Jewish heritage and 1 in 400-500 in the general population. Losing my daughter was devastating, just as knowing her suffering and death might have been prevented had I been encouraged to test. But I had no known family history of the most common BRCA-related cancers - my mother had died of gall bladder cancer in 1991. She was adopted, but I had found her biological family and knew her maternal side had virtually no cancer. It wasn't until I did some more investigating that I learned her paternal side carries the mutation. Needless to say, I favor population-wide testing just as Mary Claire King, the discoverer of the BRCA mutation does. At the very least, those who test positive can do increased surveillance if they don't want surgery. Cancer is not something you play Russian roulette with, if you know your risk is high. Someday, our daughters will not have to mutilate their bodies to escape the scourge of cancer. Research is happening now to achieve this. At the very least, consult a genetic counselor to learn your risk and options.

This report is why non-medical journalists should NOT be discussing this subject with the general public:

“She said she would get tested as soon as she could and if she was positive, she was going to have a double mastectomy.”

Why? Because this reporter chose to simply leave the 14 year and her mother with the unspoken caveats that having the BRCA gene suggests a greater possibility of risk -NOT the PROBABILITY of having the disease.

Oncologists and others have strongly opposed the rush to mutilate the body out of fear. Fact is that certain genetic inheritances predispose some to a higher risk than others.

It is one thing to advise a teen that she may have the genes which may develop into breast cancer; it is quite another not to explain the difference between risk and probability, not to mention the risks of such major surgery which does NOT prevent cancer in and of itself.

It is not that one tells a thing, but what they tell, and how they tell another. If what is told causes undue fear and the rush to do something which may well be far more harmful than beneficial. BRCA also gives the risk of ovarian cancer.

We each have a fifty percent risk of not waking up from a sleep, or of falling, or being hit by a car during the course of a day. Do we enclose ourselves and our daughters n a bubble in consequence of this fact?

As FDR once noted: The only thing we have to fear is fear itself. My advice is not to let fear dictate your responses to breast cancer.

Amazing article-very thoughtful and informative article! Thank you Jill for sharing. As a women who found at age 20 and knew about the gene from a very young age, I was very anxious to find out what my results would be. I always believe knowledge is power and if you feel your child can handle finding this out- it's always better. Now being on the other side- having just gone under for a preventative mastectomy, I feel like a weight has been lifted and feel lucky to have known what my fate was (in this case BRCA 2 Positive) and have the power to change it. Thank you Jill for shedding light on a topic that deserves to be discussed more!

This topic needs to be brought to the attention of all, everyone!! People need to be more aware, educated and know it is socially ok to converse on this subject matter...what is wrong with our country not bringing this up more in routine checkups, doctor conversations and friends/family discussions?? Preventive medicine can save a life here people. Basically not getting the genetic test for BRCA you opt out to monitor carefully every 6 months and the choice to have preventive surgery...therefore risk the chance of when (not if) you get cancer one day, undoubtedly a shock/surprise when one receives this news. People with direct relatives that have been affected by cancer should know more on this subject, please. I am BRCA 2 positive. Just found out at age 31. Single mom, raising two little girls. Double mastectomy is happening at the end of July. Bio women in my family have battled breast cancer, ovarian and pancreatic. My bio aunt tested positive for BRCA 2 and underwent her preventive surgeries this past Fall. Her daughters tested negative. I have been completely straight forward with my daughters and will continue to do so as well. I hope they choose to test at 18 to take appropriate monitoring from there if they were to test positive. Thank you for this article!! RAISE AWARENESS!! Would you rather sit on a train knowing what is coming or would you rather take matters into your own hands and live?

I can't imagine being in the position of a parent who has to decide when to inform a daughter that she may carry the gene. I do think putting off a double mastectomy until one has reached physical and emotional maturity makes sense, and perhaps longer as medical advances may provide better options to women in the future. Thank you, Jill Werman Harris for this enlightening article.

Wow! Such an informative article, thank you for writing it. It is such a personal decision on when one should test themselves for BRCA that the process is hardly spoken about. We need more awareness like this article about BRCA.

When there is something you can do with the information, I think it's better to have that information sooner rather than later. A much less dangerous gene with a much less invasive treatment runs in my husband's family, hemochromatosis, and I've made sure all my kids know about it.

Even if someone with the BRCA genes chooses not to have surgery, they can let their doctors know about it and have a more frequent testing schedule for the cancer, making it likely to catch it early if it appears. And if the person doesn't want that uncertainty, I think prophylactic surgery makes good sense for the high risk genes.

The difficult choices come when there is no treatment, as for Huntingtons, or if there is no test for it, like major depression. Those are much more difficult conversations. When do I talk about the history of suicide in the family? If I do, will it give the child permission to suicide? Do I want to know I'm going to have a protracted death like Huntington's delivers?

But what about boys,and men? Doesn't the brca gene put them at risk too?

I have a lot of qualms about about the spreading enthusiasm for BRCA testing -- and prophylactic surgery, which is often assumed to be the natural course of action if one tests positive. The genetics of cancer risk isn't like the genetics of eye color. Yes BRCA mutations are associated with increased risk of breast (and other) cancers -- but so are a lot of other factors. (You don't hear anyone recommending prophylactic mastectomy for, let's say, smokers -- a population at significantly increased risk of ER-positive breast cancer.) Major surgery comes with its own risks and long-term repercussions, and unfortunately it's not a magic procedure that makes you cancer-proof. Any discussion of genetic test results with teens (or anyone, for that matter) needs to be very comprehensive, and should cover all the facets of cancer risk as well as all the problems and shortfalls associated with surgery. Just saying, "You might have inherited a 'breast cancer gene' " is not a good approach.

Boys should know too because of their increased personal risks and the probability of passing it on. Men with a BRCA gene mutation have a higher risk of developing breast cancer, prostate cancer and skin cancer.

I think there is too little publicity on that point.

A very thoughtful article. The problem with not having a discussion, say with a daughter in her teens, is that keeping the information of carrying the gene secret doesn't mean she isn't worried. Being able to ask her mother questions, and express her own fears, is probably a bigger positive, and while there is no way to wrest total control of the threat, it offers alternatives.

I had breast cancer at 46 and carry BRCA2. The first paragraph of this article is exactly why I'm not talking about this with my 15 year old daughter yet. Double mastectomy in your teens? Good heavens.
My sister also carries the gene mutation, has never got cancer, still has her boobs. The mutation indicates increased likelihood but does not mean you'll get it.
The surgery is disfiguring no matter how good your surgeon. There is a life-risk balance to keep in mind here. If I had it to do again I'd not have got them lopped off in advance, I'd just make sure I went to a different doctor who could diagnose it earlier.

Thank-you Jill for your usual thoroughly researched and informative article.
No information is, in my opinion, always the more terrifying state of mind. Knowing there is a course of action available and that it is not so exotic or unusual in our day and age should be reassuring. When a child knows that her close relative has had breast cancer and that there is a possibility that she or he might get it, surely knowing that there is a course of action available must be comforting.

This is such an extraordinarily important article. Do we share information of this sort with young people? It's hard enough for adults to process the future. Thank you to the New York Times for illuminating the struggle for so many of us. More needs to be done within genetics to help men and women as they have frightening information about the future.