Thank you Ms. Stallings. I encourage my African American friends to get tested for BRCA as well as go to the skin doctor for annual skin cancer screenings. Both breast/ovarian cancer and melanoma are more deadly in the African American community often because they are not caught early enough to treat. Here, BRCA1 and 2 would also catch pancreatic cancer genes which is also more common percentage wise in the African American community than others.
I am going to share this article far and wide. Thanks again Ms. Stallings!
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@NCPinATL
Thank you for raising the issue of skin cancer too.
This is seriously underreported. Does anyone remember that Bob Marley died as a result of melanoma? I do.
1
Many African Americans believe they cannot get skin cancer, or in some cases, any cancer. The results of that misconception are catastrophic. Get tested.
5
I was diagnosed with breast cancer in February and my doctor ordered the BRCA gene test. My insurance company twice denied payment for the test which was $6000. After several months my insurance company finally paid for most of the test. Luckily I’m negative for the BRCA gene, but I really didn’t need the added stress of fighting with the insurance company.
I did learn a valuable lesson to make sure that everything is pre-approved by insurance and in-network before proceeding. This experience actually saved me when my breast surgeon moved to a practice that was out-of-network for my insurance. My doctor said that the new practice would accept my insurance. I realized that surgery with out-of-network doctor would be very expensive. I promptly found a new doctor that was in-network. I’m doing great and I’m almost finished with my treatment.
21
I am an Ashkenazi male and my sister was diagnosed with breast cancer and BRCA1. My brothers and I were all tested since we have several daughters between us. I tested positive so my daughter is also getting tested as will my son. Unfortunately there aren't any dependable tests for pancreatic cancer, but I am keeping an eye on my health the best I can. Early detection is critical for both men and women and I appreciate stories like this that will get that information out to the public.
5
Genetic testing should join other screens as part of every person's medical record. It is ironic that in October, Breast Cancer Awareness Month, that one in six black men will develop prostate cancer in his lifetime. They die at a higher rate than whites, not surprisingly. Yet, I have never seen any ribbons, any special month, or any foundation dealing with that.
Any new medical system needs to address:
Having large numbers of people screened.
Making sure those who test positive are followed or treated.
Having the costs covered.
Thank you to Mr. Knowles and Ms. Stallings. Both of you have performed a great service.
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@Mike S. September is prostate cancer awareness month and has a blue ribbon. In fact many cancers have other color ribbons and months but breast cancer due to its affect on young women and affecting 1 of 7 of all women does receive disproportionate attention.
Genetic testing is being expanded but still costs hundreds of dollars per test; given that most people will not be found to carry a cancer-related mutation, there is low return on investment for generalized testing. As the cost of genetic screening goes down, we may eventually see broad utilization of testing.
7
Do better with the headline!!
What percentage of African-American Men die from breast cancer?
My dad had breast cancer and did not have BRCA1/2 and neither do I; we are mostly Ashkenazi.
This country is very backward in its view of what is medically necessary and it creates a lot of needless worry and heartache. I think it all comes down to money.
2
Men and women have equal chances to carry BRCA mutations. These mutations increase risk for breast, ovarian, prostate, and sometimes pancreatic cancer or melanoma.
BRCA-associated cancer risk has been called Hereditary Breast Ovarian Cancer (HBOC). This makes it seem a concern for women only. But there has been a suggestion that the name be changed to "King Syndrome," to be more inclusive. See: https://www.medscape.com/viewarticle/915217
I am brac1 positive and have lost my mother, grandmother, aunt, and cousin all to breast or ovarian cancers. My sister is a breast cancer survivor who got triple negate breast cancer at age 42. I was able to get tested for this mutation and had the preventative surgeries but after reading this article it makes me wonder if it is was only because I am white. Disease is disease and this gene had devastated our family.It is different for African Americans and I will do as much as I can to educate my genetic counselors and physicians about this situation as well as the general public. This is maddening that because of the color of your skin biases such as this exist. All life is important. Thank you for publishing this article and brining light to this matter.
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For $250 the company Color tested a family member who had had breast cancer for mutations in BRCA1 and 2, and about a dozen other cancer genes.
2
A type of breast cancer more typically found in younger women of color called “inflamitory” breast cancer struck my 61 year old white sister in law this year. Long story short, we’d never heard of the tell tale symptoms - rashes or other changes in skin texture versus a lump in the breast. This type of cancer may not show up on a mammogram. It’s fast moving and deadly with very low 5 year survival rates. I fear the reason we’d not known the symptoms is that this cancer mostly impacts women of color.
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Despite the celebrity factor, the relative occurrence of male breast cancer is virtually nil. As such, men shouldn’t be claiming attention for a horrific women’s disease or burdening the limited resources available to them.
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I must ask, did you bother to read the article? The vast majority of it regarded women of color, not men. At this point, and even more as it progresses, genetic testing should become as commonplace as checking blood pressure and for cavities. “Limited resources” are not truly limited, only the financial resources to afford them.
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Having read this, I am not sure of what the recommendation is for BRCA testing is based upon. Are the criteria for having it done clearer now? Is it being done more often as a general screening test in the absence of knowledge of relatives with the mutation or breast or prostate cancers?
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@cheryl BRCA screening would typically not be done as a general screening test. That's because only about 1 in 400 people in the US have a BRCA mutation (0.25%). Thus, for a randomly selected person *with no risk factors*, the chances of having a BRCA mutation are much, much smaller than the background probability of developing breast (about 1 in 8 women) or prostate (about 1 in 9 men) cancer; for such individuals, there really isn't any reason to test. If the mutations were more common, of course, that calculus would change! It might also change if the cost of testing came down substantially; right now, though, you're looking at often thousands of dollars.
BRCA screening tends to be recommended for individuals whose personal or family history suggests a higher than typical chance that a mutation is present. For instance, if you've got first-degree relatives who have had breast cancer, you're considered high risk; the BRCA testing recommendation comes in if one of those relatives got cancer before age 45. A family history of ovarian or pancreatic cancer is another factor that should trigger a testing recommendation. This page provides a list of the situations in which BRCA testing would be recommended:
https://ww5.komen.org/BreastCancer/GeneMutationsampGeneticTesting.html
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@Leslie
Thank you.
2
Now we have at least three reasons to be grateful to Mr. Knowles: Beyonce, Solange, and his willingness to talk publicly about having breast cancer.
As this article makes clear, health care in the black community (and other minority communities) is not up to par.
It's also clear that we need better responses to BRCA mutations. Physical mutilation should not be necessary. The science may lag because the primary victims are female, but I hope we can make progress.
I lost a sister to breast cancer; my mother is a breast cancer survivor. As science progresses, I hope that prevention and cures become better.
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As the article says, the mutations are found in every population.
Why is only one group being told to be tested?
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@Jonathan Katz Because that group is not being told.
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@Jonathan Katz It's a lot more complicated than any particular group "being told to be tested." In fact, currently there isn't any group for whom BRCA testing is recommended as a screening; even Ashkenazi Jewish women, who have probably the highest currently known BRCA mutation rates, aren't being told to test in the absence of a cancer history.
Having said that, this is why we need better research on all human populations. It may turn out that the BRCA (or other oncogene) incidence rate in some populations is high enough to justify screening for mutations in the absence of any personal/family cancer history. Alternatively, it may eventually be so cheap to test that the threshold for testing drops substantially. (For example, consider PKU, a genetically based metabolic disorder. We test everyone at birth - that heel stick test - without asking about family history or background (and despite the disorder being rare) because the test itself is cheap and minimally invasive, and the intervention needed in those who test positive is life-changing. Just an example of the cost-benefit calculations that are done when deciding whether to recommend or even require population-level screening for a condition.)
7
I'm the daughter of a BRCA1+ woman who survived stage 4 ovarian cancer and stage 1 breast cancer before we even know about her BRCA mutation. She passed away 6 years but not from cancer. My grandmother died of "a woman's disease" in England in the 1950's and my great-aunt was a breast cancer survivor in the 1970's. I have the BRCA1 mutation and have had the prophylactic procedures. In just 3 generations, the science has come a long way but a lot remains to be done to help all communities get the testing and care they need. I met Erika a few years ago at a local event on BRCA and the African American community. I was impressed by her dedication then and now. Erika - please continue to get your message out. You are a vital part of this issue
20
It's inadequate healthcare folks. But if Beyonce or her dad would like to get involved more power to them.
7
I'm grateful to have had the opportunity for free genetic screening offered by 23andme several years ago as a part of their effort to include more people with African American heritage in their genetic data pool, so I've known my BRCA status for years despite no major risk factors (I also know whether I carry gene variants which increase risk for Alzheimer's, etc.). I realize they are a for-profit company which benefits financially from increasing their customer base and therefore study subject pool (customers must opt in), but they were right to make an effort to address the problematic dearth of AA genetic study participants. Without a diverse population represented in the research data, the conclusions drawn from it are compromised and, as a result, so too are the healthcare best practices often based on those narrow conclusions.
As the links between genetic markers and disease are better understood, this kind of genetic screening for at-risk groups should become a standard part of primary/preventive care and therefore covered as such by insurers (i.e. low-to-no out-of-pocket cost). Even $80 after insurance is a big hurdle for many when weighed against immediate needs, and has no justification when you can purchase this info directly from a consumer genetics company for about $150. This information saves lives, preserves quality of life, and avoids $100s-of-thousands down the line on cancer treatments.
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@TMBM I hate to be the bearer of bad news, but the 23andme testing only looks for three BRCA mutations - two in BRCA1 and one in BRCA2 - which happen to be the first three identified in Ashkenazi Jewish women. Problem is, there are a few dozen BRCA mutations that are currently known to confer increased cancer risks. I know this because I, too, had a negative BRCA result from 23andme, but as it happens, I have one of the 30-plus pathogenic mutations that 23andme does *not* test for. The only way to know for certain whether you have a BRCA mutation is via clinical testing.
I do agree, though, that it's good that 23andme is collecting what information they are on multiple populations that are historically underserved by the medical community!
9
This is fascinating, and will (hopefully) become truly helpful. As the last living member of my birth family, my mother had breast cancer in her thirties. This was during WWII. She had radical mesectomies, which may or may not have been necessary. However, she had multiple recurrences. Fortunately, all were begnign. She was over 80 years old when the last tumor was removed. I drove her to the hospital at 6:00am, and drove her home about 1:00pm. As most people are aware, this is known as "day surgery", which is a quite a statement about America's broken health care system. This tumor was the size of a peach pit, and she did not even take an aspirin afterwards. On the contrary, she made us lunch when we got home from the hospital. A beautiful and truly brilliant woman; strong in so many ways. In addition to the cancerous tumors and masectomies, she endured what no one should: The death of her husband (90 years old), the death of her first-born son (61 years old), and her daughter (60 years old); all in the space of 7 years. She died peacefully in 2010, and was well over 96 years old. My entire birth family died in a single decade. Please know I am neither complaining, nor feeling sorry for myself. On the contrary, I am extremely grateful.
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@Easy Goer
She made you lunch?! What a woman! I'm impressed at how she triumphed over those early mastectomies, which were brutal back then.
5
If BRCA2 is implicated in prostate cancer, shouldn't men be routinely tested for it as well? My husband's father had it and my husband got it at age 57. He recommended that his tow brothers get tested immediately. Thy both had it and were ages 59 and 61. Should they all now be tested so that they can be more carefully evaluated for pancreatic cancer and melanomas?
5
@ExPatMX With a family history like yours, I would say that BRCA2 testing might be a good idea; however, the mutation is rare enough, and its impact on prostate cancer is small enough, that it wouldn't make sense to test all men. Basically, with BRCA mutations, you only want to test people whose family history suggests that there might be such a mutation. Perhaps when the cost is no longer thousands of dollars, these tests will become more viable for large scale screening (and note that insurance companies will generally only pay for the testing if there's a good clinical reason to suspect the person might have a mutation).
As far as the additional cancer risks go - keep in mind that there isn't any scientifically validated protocol for pancreatic cancer screening, unfortunately. For melanoma...well, here's what happened with me, a BRCA2 carrier. For a couple of years, I had my skin checked every 6 months; when no changes appeared, I was switched to annual checks, which is what would be recommended for someone of my background and history of sun exposure anyway. Basically, at this point, there's no hard and fast melanoma screening guideline for BRCA carriers; we don't know enough about how much BRCA increases melanoma risk for there to be a standard recommendation for additional melanoma screening.
2
The real question here is, why does it cost thousands of dollars to begin with? The technology is readily available, and mostly automated.
@Jim Testing can be done by companies such as Invitae or Ambry for roughly $300 out of pocket *if* one does not qualify for genetic testing based on personal history/family history. Myriad is also a company that does genetic testing and still charges thousands.
The mainstream (meaning white-dominated) medical establishment doesn't really care about black patients and, like most American white people, prefers not to think about black people unless they need them for something. I say this as a white person who has observed just this in very large numbers of white people.
16
Wow so wrong. You're speaking only for yourself.
9
My wife was caught up with the BRCA test in 2000. Both daughters were tested. It is very important to get checked and follow it up
4
Cancer patients should do whatever they deem best for themselves.
That said, the decision of the author's mother to have her ovaries removed due to BRCA mutations, makes far more sense biologically than the author's decision to have preemptive mastectomies.
In addition to being possible cancer sites, the ovaries are the source of estrogen which drives breast cancer growth. Removing the breasts does nothing to decrease the risk of ovarian cancer.
6
Triple negative or basal-like tumors are the most common breast cancer subtypes associated with BRCA mutations and are typically not estrogen and progesterone mediated. Hence the recommendation for double mastectomies to reduce risk.
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@Ambient Kestrel Actually, the mastectomies are an important part of prevention, because many tumors associated with BRCA1 mutations in particular are triple-negative, meaning that an oophorectomy would have zero effect on their development.
Also, having a prophylactic mastectomy often allows patients to have estrogen replacement therapy after having the oophorectomy, which is really important if you're following the guidelines (ovaries yanked by age 40 or when childbearing is complete if that's earlier). I'm not talking about menopausal symptoms, either - heart disease and osteoporosis risks will rise substantially after the oophorectomy, especially when you consider that many women having the preventive surgeries can expect to live another 40 or more years.
4
@Andrea Slight clarification - in fact, BRCA2-associated cancers are most often hormone-sensitive (though mine wasn't!). BRCA1-associated cancers have a greater propensity than non-mutation associated cancers (and BRCA2 tumors) to be triple-negative, but TNBC is still less common than hormone-sensitive cancer even among BRCA1 carriers. I agree that the greater propensity for BRCA1 carriers in particular to develop TNBC needs to be taken into account when it comes to screening and prophylaxis recommendations, though!
1
As a daughter of a breast cancer victim , I heartily agree with the testing for the BRCA1/2 gene test.
Early detection, along with surgery, chemotherapy and radiation saved my life and I am grateful for the opportunity to let others know how important this testing can be.....
37
I’m an Ashkenazi Jew with a mother who had breast cancer in her early 40s. I had to have a huge argument with my doctor to get her to order a BRCA test.
54
You need a new doctor.
30
@Gabrielle Pallas - I am curious about the nature of the argument, whether it had to do with cost or with some kind of risk/benefit calculation. I have a specific reason for asking. I do not know how Swedish Universal Health Care handles that particular kind of screening but will try to find out. My Gmail @
Only-NeverInSweden.blogspot.com
9
I lost my black African American mother to breast cancer.
I lost my black African American father to prostate cancer.
I am dealing with prostate cancer.
At every educational socioeconomic level African Americans are medically separate and unequal.
I have volunteered to participate in clinical trials treatment studies that use genetic testing. For my own benefit and my family and friends.
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@Blackmamba - I wish you a swift recovery, I'm sorry that you have to face that. My understanding is that it's very treatable, and it's because people like you are willing to participate in research. I wish you all the best.
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@Blackmamba - I am sorry to read that you are dealing with prostate cancer. I have been a translator and editor for leading Swedish researchers in the field of clinical cancer epidemiology so I am quite familiar with the many paths the disease can take or to be more exact with the many paths that recovery after treatment can take. The major researcher for whom I work has kept me busy with manuscripts and research proposals focused on the fact that there is an ever increasing percentage of cancer patients who with treatment become designated as cancer survivors so world wide the need for understanding the less desirable effects of treatment grows and grows.
By chance, we recently had a visit from a Swedish friend who had prostate cancer surgery and is well and unaffected by post-operative effects, what I call an n = 1 anecdote.
I hope as does Susan Moniz from my old home town that treatment will go well for you.
And here is an over too good to refuse: If you send me your address I will order Thomas Chatterton Williams 2d book, out yesterday: Portrait in Black and White - Unlearning Race and send it to you. My copy comes tomorrow, the 17th
You are correct about at every level African Americans are...As you well know, I write often here that Sub-Saharan Africans do much better here, especially mothers to be, thanks to SE Universal Health Care.
You are always in my mind.
Larry
Only-NeverInSweden.blogspot.com
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@Suzanne Moniz
Thank you.
I have been dealing with prostrate cancer for 10+ years.
I was told 10 years ago that if I did nothing I would be gone in 3-5 years. And if I did everything that they recommended there was a 50% chance I would be around 5-8 years.
They are only doctors practicing medicine. Even within types every cancer is unique.
8
Note in the interests of acccuracy that the author writes:
"...research SUGGESTS that the rate of BRCA mutations is higher among BLACK women than it is for WHITE.
I put BLACK and WHITE in capital letters for this reason. American medical researchers use US Census Bureau designations as if, for example, there is a pure black race and a pure white race. There are no such things.
Kamela Harris provide a timely example. She was referred to at the debate as a black woman but she emphasized in an answer to a question that her mother was born in India and that after divorce when KH was 5 y old, her Indian mother brought her up.
The background for this comment is in part this paper Taking race out of human genetics Yudell, Dorothy Roberts, DeSalle, Sarah Tishkoff Science 2016 and my own familiarity with the fact that at least some Swedish epidemiologists question American use of "race" in medicine - Sweden does not classify people by "race"
I also submit this because an important book by NY Times columnist Thomas Chatterton Williams was published yesterday: Self-Portait in Black and White - Unlearning Race
Universal Health Care as practiced in Sweden would definitely help women seen as black in America.
Only-NeverInSweden.blogspot.com
Citizen US SE
18
@Larry Lundgren
Thank you for acknowledging this. There is biological basis for black people. A fiction created to generate a large slave workforce. Many "black" people are most of European ancestry. Why are we not seeing the same diseases in "black" Africans. The answer is the horrific treatment of black people living in America.
7
No question BRCA1/2 gene mutations are critical for women, greatly raising the risk of breast and other not-uncommon cancers. For men the evidence is less compelling. The lifetime risk of male breast cancer is 1 in 833 (0.12%): BRCA2 raises the risk to about 8 in 1000, a high increase but still a tiny total risk (0.8%). Therefore, the US Preventive Services Task Force’s advice for women applies with greater force to men: Testing for BRCA1/2 mutations should be performed only when an individual has personal or family history that suggests an inherited cancer susceptibility. As for prostate cancer, BRCA2 does modestly raise the risk, but perhaps more important it increases the likelihood the cancer will be aggressive. This could be important to know in treatment, but if you (like me) are predisposed to PSA testing, knowing one’s BRCA2 status prospectively offers no special benefit.
6
@Joe
On an anecdotal side, testing might have helped my husband's family. His father and all three sons had prostate cancer. The youngest son was 57 and the oldest was 61. Knowing their BRCA2 status might help the son to be more proactive on prostate testing and the daughters to be tested for breast cancer.
2
I absolutely do not want to make light of this incredibly important story and it’s call to awareness and action, but I just really need confirmation that someone has checked in with Beyoncé and that she’s doing what needs to be done so that she will, in fact, live forever?
I also sincerely hope that Matthew Knowles recovers and thank him for going public with his diagnosis. He will save a lot of lives.
17
@Lauren Do you remember the brouhaha when Angelina Jolie talked about what she did about her cancer risk? Mr Knowles is talking about it to the media, and I think we can take it as given that his daughters know without having journalists ask them (their media people, most likely) to make sure.
20