Hi Reddit! We are here from Facing Our Risk of Cancer Empowered (FORCE) and the National Society of Genetic Counselors. We work with people who are at increased risk of breast, ovarian, and related cancers due to inherited mutations in genes such as BRCA1, BRCA2, PALB2 and others. FORCE provides expert-reviewed information on current risk management guidelines and targeted treatments for these hereditary cancers. We work to assure that everyone affected by hereditary cancer has access to genetic counseling, testing and risk management. We are concerned about gaps in coverage and disparities in cancer risk management, including ethnic disparities, access to care for people with mutations who have not had cancer, and coverage of genetic counseling and testing for men.
Here’s a bit about those of us answering your questions today:
Lisa Rezende, PhD Vice President for Education at FORCE: I develop educational materials for people facing hereditary breast, ovarian, and related cancers. FORCE is dedicated to improving the lives of people facing hereditary cancer.
Leigha Senter, MS, LGC: I am a genetic counselor and a cancer expert from the National Society of Genetic Counselors. Genetic counselors help people understand and adapt to the medical and, psychological aspects of diseases that run in families, and NSGC serves as an integral resource for people interested in learning more about genetic counseling. In honor of Breast Cancer Awareness Month, I can discuss:
- how genetic counselors assess risk of breast cancer in a family, and the implications of family history on cancer risk
- hereditary types of breast cancer
how you can find a genetic counselor if you’re interested in cancer genetic testing
I am also happy to answer questions about ensuring access to appropriate care for everyone including people of all ethnic backgrounds regardless of gender and health status.
If you would like more information about FORCE and how we help people facing hereditary cancer please see www.facingourrisk.org. If you are concerned that the cancer in your family might be hereditary, please see our “Should I get genetic testing?” page.
We’ll be back at 1 pm EST (10 am PST, 6 pm UTC) to answer your questions, ask us anything!
What are your opinions on overtreatment for breast cancer ? How do we prevent needless treatment based on the access to risk managment and the possibly significant side effects of it ?
It's not something we can ignore.
This is Lisa from FORCE. We encourage all people to learn the national guidelines for cancer risk management and cancer treatment. The National Comprehensive Cancer Network (NCCN) looks to current medical research to regularly updates their evidence-based treatment, screening, and risk management guidelines. FORCE keeps an updated page with NCCN guidelines for hereditary breast and ovarian cancer. NCCN also publishes patient versions of the guidelines that describes current treatment recommendations based on cancer type and stage. Treatment recommendations are based on many factors including cancer type, stage, presence of inherited mutations, and results of other genetic tests that can be used to help determine if the patient will benefit from treatment.
This is Lisa from FORCE. We work people facing hereditary breast cancer, I will limit my comments to this type of risk. We get many questions about diet and maintain expert-reviewed resources on our website that looks at the role of Diet and Nutrition in hereditary cancer risk, and address cancer headlines on diet and other lifestyle factors as part of our XRAYS: Making Sense of Cancer Headlines Program
How can we improve care to minority populations? From my understanding survival rate in people of African ancestry is particularly low, and that this is due to several factors. What strategies can help address this disparity?
Here is a brief summary of the issue from a recent Nature Medicine article:
Three decades ago, African-American women and American women of European descent experienced similar rates of death from breast cancer. Since then, mortality rates among the two groups have diverged. The most recent numbers from the US National Cancer Institute indicate that the mortality rate from breast cancer among African-American women is about 28 per 100,000, as compared to 20 per 100,000 among US women of European descent. This difference might partially stem from the fact that new treatments do not always work against the most aggressive breast cancer subtypes, which are more common in the former group than in the latter. But this disparity in cancer-treatment options does not necessarily explain all of the difference between the current mortality rates.
This is Lisa from FORCE:
At FORCE we are very interested in this issue. We applaud continued research that is working to get to the reasons behind these disparities.
Advocacy groups have a role in helping address these disparities through awareness, education, and work to address disparities and gaps.
In terms of awareness, we have brought these efforts to the attention of our community by providing patient-friendly reviews of current research including: *Recent NIH funding to understand breast cancer genetics in the African American community *How the family's country of origin impacts breast cancer rates and mortality in Hispanic women *New research on ethnic disparities in BRCA testing
We also work to educate the entire hereditary breast and ovarian cancer community as to the current national guidelines for cancer risk management and provide expert-reviewed information on paying for care.
In many cases, access to care is a huge issue. One of our current advocacy actions is to work towards assuring private insurance as well as Medicare and Medicaid cover the recommended cancer risk management services.
Is genetic counseling something you would recommend for everyone? I know very little about the medical history of my biological father's family and am concerned there may be a genetic risk that I'm not aware of. Are the associated gene mutations rare enough that I'm ok playing the odds with self-checks and mammograms at 40?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. This is a great question. So many people find themselves in similar situations. You are correct that these hereditary cancer syndromes are rare and most people people are not in this highest risk category. However, sometimes meeting with a genetic counselor can be helpful so that you can sort out the information that you do have and make sure that general population cancer screening guidelines are appropriate for you. You can find a genetic counselor in your area at www.nsgc.org.
First off, I wanted to thank you and everyone in your field for the work you do.
Reading through your site, it seems that this sort of testing is focused more on women. As a male with a large family history of cancer (brain, breast, and lung ) is testing something that should be considered?
Secondly, is there a certain age that testing should be done around for the most indicative of results, and just how accurate are your results ?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Thanks for asking. Both men and women can have mutations in genes like BRCA1 and BRCA2. While the cancer risks that are associated with mutations in these genes are higher for women in affected families, these mutations can impact cancer risks for men, as well. Men with BRCA1/2 gene mutations can have increased risks of breast cancer and prostate cancer as well as melanoma and pancreatic cancer in some families. As such, you may wish to consider genetic counseling to determine if genetic testing might help clarify risks for you and your family. There's no specific age when this is most informative but genetic testing for most hereditary cancer syndromes is not recommended for minors (there are rare exceptions). And lastly, genetic testing for hereditary cancer syndromes is complex but there are many reliable options. Your genetic counselor can ensure that the technology used is the current standard and help you understand and interpret the result.
Studies seem to show that taking birth control pills slightly increases the risk of breast cancer and decreases the risk of ovarian cancer. Do genetic counselors make recommendations about taking/not taking the pill for prevention? What if a person is at risk for both cancers?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Thanks for asking this question that so many others also ask us. You are right - there is a definite need to weigh risks and benefits in this situation and with the help of the rest of the healthcare team, a genetic counselor can aid in describing the cancer risks and how they can be positively or negatively impacted by interventions like birth control pills. Women with increased risks of developing breast cancer and ovarian cancer have several options for risk modification/management so we spend time helping her understand her risks so that she may make decisions that feel comfortable for her. Ultimately, we provide her with questions to ask her physicians about what option might be the best fit and what the possible side effects of each intervention might be. Sometimes, decisions about risk management change over time, too, so we encourage women at high risk to revisit the discussion often with their care team.
What are your thoughts on the potential role of animal products, specifically dairy products, and their contribution to the growth of tumours?
This is Lisa from FORCE. We serve individual and families facing hereditary cancers, usually stemming from an inherited genetic mutation in BRCA1, BRCA2, PTEN, PALB2, TP53, or other gene associated with increased cancer risk. While we encourage health lifestyle choices in our community, it is not clear from current research how much diet affects hereditary cancer risk.
Not sure if this is the right place for this question but: regarding research, how much of al the money raised ACTUALLY goes to breast cancer research funding?
Hi this is Lisa from FORCE. We are one of many different cancer advocacy groups. Each has a different mission, and as such, a different percentage of money going to their various efforts. I can only speak to FORCE's work.
Our mission is to improve the lives of individuals and families facing hereditary breast, ovarian, and related cancers. We work to support research and we conduct patient-centered outcomes research through our ABOUT Patient-powered Research Network. But we also have support programs such as Peer Navigation that provides one-to-one support and expert-reviewed resources to people facing hereditary cancer, an annual conference where patients can hear directly from experts in hereditary cancer, meet others affected by hereditary cancer, and learn about participating in research, a media awareness program called XRAYS that helps patients understand breast cancer news, and an active advocacy program that works to assure gaps in research and access to care are addressed on a national level. Our 2015 Annual Report details our fundraising, percentage of money to programs, and success.
What are your thoughts regarding popular genetic testing products such as 23andMe? Currently, the American version of 23andMe (and related products) do not provide information about BRCA genes but you can easily find many third party (and often unvetted) products that will let you upload your data and tell you if you are a carrier. Are there concerns that these sites are not reputable and/or that patients may have a false sense of security from results? Even if patients use a reputable genetics testing service, should they see a medical professional for help interpreting and understanding the results and the limits of what it can tell us?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. This is an interesting question. 23 and Me offers a test we refer to as "direct to consumer testing" and just like with any test, it's a good idea to think about what you hope to learn from the test and to be realistic about what you may/may not learn and 23andMe does a good job of describing the kinds of reports that they generate. The 3rd party services that "analyze" your raw data, are a bit trickier to vet. In general, making sense of your genetic data and putting it into context for your health is a complex process that involves taking into account other factors (like environment and lifestyle) in addition to genetics information. A genetics care provider can definitely help with explaining the results and the test's limitations. Here's a link to some information about DTC genetic testing on the NSGC website that provides a framework to help you decide if testing like this is right for you: http://aboutgeneticcounselors.com/Genetic-Testing/What-is-At-Home-Genetic-Testing
What are your thoughts on the recently release study by the New England Journal of Medicine that states that mammograms really don't seem to be as effective as they are perceived, and seem to be encouraging needless procedures (chemo, radiation) and surgeries? A look at the data has indicated that as mammograms have gotten more details and advanced in their scanning they are creating a paradigm in the medical culture that instantly goes in for the kill as soon as the tiniest pair of cells is found...
How can we better use genetic counseling and family history to help people be more aware of their own health and wellness, but also taking a more temperate and holistic approach to managing cancer or the appearance of cancer-like symptoms in the body?
My mother was diagnosed with breast cancer in June. I know specifically that there was a fibroid about 11 mm in size removed. There were no other signs of cancerous cells in her body and other wise, her health was just fine. A mammogram revealed the lump. She chose to have surgery to just remove the lump and then go on. Doctors did not see any other spreading at all in her body during the surgery or from biopsies. However, she was immediately thrust into, you have to do chemo for 6 months and then radiation. Why? I found out several years ago that her mother had breast cancer back in the late 60s...they removed the lump and she went on with life, living to the age of 96. My mother is 74. My brother and I are convinced that she was guilted into going through the procedures. Her health has declined dramatically since she started the chemo. She can't control her bowels (when she is not constipated), is constantly sick, in a depression, and it has completely made her helpless....all because her physicians go "well, if you don't do it, it might come back."
Sorry didn't mean to rant. I just feel like we are still living in the stone ages when it comes to cancer treatment. We need more progressive and innovative techniques to be allowed for testing instead of relying on feeding toxic poison via IV into a person or throwing more radiation than it took to turn Bruce Banner into the Hulk for a tumor that is not there any more.
Hi Lisa from FORCE. I am sorry to hear about your mother's diagnosis. We encourage everybody to talk to their health care providers about their personal and family history of cancer to determine the course of screening and treatment that is right form them. We also encourage patients to be familiar with national guidelines that are based on the latest scientific evidence. The National Comprehensive Cancer Network publishes regularly updated patient guidelines to help patients have informed conversations with their health care provider and share in decision making.
A long, long time ago... decades, in fact, I read an interesting book called "The Breast" and it detailed the fact, AT THAT TIME, that the treatment choices for breast cancers were lumpectomies or mastectomies of varying severity. (Of course, chemo, radiation and hormones were used, too, but surgically, lumps or amputation were the biggest choices.)
AT THAT TIME, 5 year survival rates were equivalent, suggesting that the 1800's era mastectomies were unnecessary mutilation with much more severe consequences, including edema from alterations to the lymphatic system.
I've always wondered.... why are we still doing this barbaric stuff if the outcomes for less radical (pardon the pun) treatments are similar?
Are we still doing this? (Two friends recently had mastectomies... one a single breast and the other both though only one was cancerous.)
Second, with the growth of immunotherapies and targeted treatments, will we soon see the end of this business of amputation?
And last, overdiagnosis of breast cancer would slant the data to suggest that treatments were more effective than they really are, since you might be treating cancers that don't really exist. What improvements have been made or are on the horizon to assure that normal variations in breast tissue, including precancerous symptoms that will be held in check by normally functioning immune systems, aren't over and mis-diagnosed. (As they say, if you ask a surgeon what you need, he'll tell you surgery. )
(Note: I have no qualifications of a medical nature. Did lose a spouse to colon cancer, and hate cancer like a cat hates a squirrel. Not quite as much as I hate seeing friends get un-needed or ill advised surgery. Would appreciate your insights. Thanks for doing the AMA.)
(edit: can't find the original book i read, but here's some interesting info:
Hi- this is Lisa from FORCE. We work with people at very high risk (60-80%) lifetime risk for breast cancer. Breast cancer survivors with inherited mutations in BRCA1 and BRCA2 are at increased risk for a second breast cancer diagnosis. Mastectomy is one option outlined in national guidelines for women with these mutations. There are other risk management options as well including more frequent screening and risk-reducing medications.
FORCE advocates for continued research into better, nonsurgical, risk-management options for people facing hereditary cancer.
What are your opinions on how much diet and stress are linked to cancer? Have you also looked at links between digestion and cancer? aka people who regularly eat food combinations that are difficult to digest may be at a higher risk of cancer? Have you found links between eating excessive amounts of protein and cancer?
This is Lisa from FORCE. We work people facing hereditary cancer due to inherited genetic mutations in BRCA1, BRCA2, or other genes associated with increased cancer risk. I will limit my comments to the effects on hereditary cancer risk. Right now this remains an active area of research. We maintain expert-reviewed resources on our website that looks at the role of Diet and Nutrition in hereditary cancer risk, and our media awareness program called XRAYS regularly reviews media reports of research on the role of diet in breast cancer risk.
I found out back in July that I am positive for the BRCA1 genetic mutation and I'm having a mixed emotions on how I'm dealing with the news. I just always knew in the back of my mind that I had this gene because breast cancer was so dominant on my maternal side. However, it wasn't until I received my official results that it kind of hit me. My own maternal grandmother passed in her late 40s of breast cancer, all her sisters battled with it, her younger brother passed from childhood cancer, and my own mother went through preventative measures over 10 years ago. As far as we know, I am the only grandchild or cousin who has acquired the gene.
When I received the news, because the mutation is so aggressive, I was advised that I go through with a bilateral prophylactic mastectomy around age 30 and a bilateral salpingo-oophorectomy around age 35. By undergoing these procedures, I can avoid cancer before age 50 and passing early like my grandmother.
As a 25-year old female who is unmarried and currently without children, I am having a hard time not feeling that tick-tock of my internal female clock. Hearing that I essentially have 10 years to have my own children, and only five years if I wish to breast feed, has been hard.
I find it hard to talk about these issues with my boyfriend, friends, and even my mother because I feel very singled out in this situation. I know I'm not alone, but I'm wondering if there are any resources for individuals looking for support in dealing with this.
This is Lisa from FORCE. I am so sorry to hear about your test results . FORCE has many resources for individuals facing cancer risk. Please check out our free Peer Navigation Program which matches people with mutations to trained volunteers who have walked a similar journey. The program provides one-to-one support and expert reviewed resources. We also have over 50 Local Support Groups across the country. Finally, our Annual Conference will be held June 8-10th, 2017 in Orlando. This is an amazing opportunity to meet others with mutations in BRCA1, BRCA2, and other genes that increase cancer risk and hear directly from experts in hereditary cancer.
Are there any warning signs (aside from lumps) associated with cancer in some cases? Such as pain?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. While diagnosis of breast cancer is not the expertise of a genetic counselor, there are some reputable websites with good information and always contact your healthcare provider with concerns. Check out: http://www.cdc.gov/cancer/breast/basic_info/symptoms.htm https://www.cancer.gov/types/breast
If my wife has a rare form of breast cancer, is my son at a higher risk of breast, or any kind, of cancer?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. It's possible that your son could have an increased cancer risk but a comprehensive risk assessment with a look at both sides of your son's family can help clarify that. A genetic counselor will ask you questions about the cancers on both sides of the family to include the types of cancer present and at what ages each were diagnosed. He/she will also ask about the people in the family that have not had cancer and about health issues in general. If you need help finding a genetic counselor in your area, you can visit: www. nsgc.org. Thanks for asking!
I am a cancer survivor who was diagnosed in April and completed primary treatment in September when I finished six weeks of radiation. As I'm under 40 I have ten years of Tamoxifen to look forward to, and am not looking forward to being terrified with every follow-up mammogram, but what can you do. I hate the "pink warrior" culture and have not been enjoying October (though I appreciate that many survivors and family members of cancer patients find great strength in it). I feel strongly that we're all more than "aware" of breast cancer now, and it's time to move to focusing on treatment and accessibility. There's a huge 5K in my hometown that raises money for a mammography "scholarship" fund at the women's hospital so that women who would not otherwise be able to afford it can get this early detection test. I wish we were seeing more of this and less "awareness," particularly when the biggest organization driving the awareness bus gives comparably little to research and support.
How do you, as medical professionals, feel about the "pinkwashing" of breast cancer? Do you think it's done a valuable service, that its time is past, something in between, something else entirely? What, if anything, do you feel we should be focusing this attention on? Do you have thoughts on how we can collectively pivot away from "awareness" to action?
This is Lisa from FORCE. I am sorry to hear about your diagnosis. We hear this comment from many people and it speaks to how big the breast cancer world is and how much work there is to be done. For those who wish to get involved beyond awareness, FORCE offers several opportunities including our Research advocacy training program which trains patients to be more involved in research advocacy, our ABOUT Patient-powered Research Network which is looking at the research questions that will help patients make the best decisions about their health care, and our Peer Navigator Program which trains volunteers to offer one-to-one support and provide expert-reviewed resources to people facing hereditary cancer.
I'm 29 and was diagnosed with DCIS at 27. I've had multiple lumpectomies and prophylactic chemotherapy (last year) but I've decided that as a well informed healthcare provider I want to suspend treatment. My mother had DCIS at 28 wish small lumpectomy and was Dx at 48 with stage 3 lobular carcinoma requiring bilateral mastectomy. I am with someone now that is thinking toward the future and the child discussion came up, along with my health. Is it feasible to suspend all treatment of DCIS as is now recommended for pregnancy/breastfeeding in the next 5 years, or should I actually "do" something about it?
For what it's worth I had genetic testing and I was BRCA 1&2 negative and showed only a mutation in a Rad50 gene like my mother.
Thank you for answering these questions!
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. This is a great question and really underscores the complexity of decision-making for women like yourself. From a genetics standpoint, it sounds like you've had risk assessment already and have your genetic test results in hand. I would have an ongoing and candid discussion with your oncologists (surgical/medical) and your ob/gyn about the pro's and con's that come with your options. These providers know your history and are equipped to help you make these decisions. And it never hurts to get a second opinion. Best of luck.
Thanks so much for doing this!
I was wondering if you had any information on receiving genetic testing for those like myself who are pretty much broke and out of the health care system. I lost my mother to stage four breast cancer a few years ago and every female on my maternal side has dealt with the big BC in one way or another (aunt had stage two, grandmother, etc). I've kind of just assumed that I probably have some form of the BRAC gene floating in my DNA mush but it's always been more of a financial concern rather than fearing the results. Are there any non profits that I can contact to assist in this matter?
This is Lisa from FORCE. We have information on getting help paying for genetic services as well as a list of financial assistance programs. For people who know they have a mutation in BRCA1, BRCA2, or other gene that increases cancer risk, we also have information on Paying for Cancer Screening and Prevention.
What is the current expert opinion on recommended age of first mammogram for a woman with no known risk factors? How does that age change with the risk factors you study?
Hello - Leigha Senter, Genetic counselor and NSGC cancer genetics expert here. There are differing opinions published about this. The National Comprehensive Cancer Network (NCCN) recommends that women initiate annual mammography at age 40 for women at average risk. https://www.nccn.org/professionals/physician_gls/pdf/breast-screening.pdf. For women with elevated risks based on a hereditary cancer syndrome, the NCCN, has different guidelines aimed at early detection and risk reduction. For instance, women with BRCA1/2 gene mutations are recommended to have annual breast MRI from ages 25-29 and at age 30 this is adjusted to include annual mammography in addition to MRI. The recommendations are evaluated and updated at least annually. Good question!
The Chief British Medical Officer, adviser to the UK government is advocating women to reconsider drinking alcohol at all, especially if they have a family history of cancer. I've looked at what the experts are saying. The evidence seems overwhelming. Alcohol is a major contributor to cancer. Why is Britain the only country doing this, and why isn't there a greater push here?
Surely with the extortionate costs of medical care that educating people on how to reduce their risks should be the highest priority. Screening is great and all, but surely when it gets to that point it's already too late for a lot of women?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Thanks for raising this question. It prompted me to look at document you're referring to, of which I was previously unaware. (can be found here for those interested: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/489795/summary.pdf) There are many studies on the impact that alcohol consumption has on disease and most have showed an increase in breast cancer with increased consumption. This increase was not reportedly the same in the hereditary cancer syndrome population (see a 2010 paper by Dennis et al. in the journal Breast). I think we are slowly but surely moving into a "prevention first" discussion and lifestyle modifications like this are an appropriate part. Thanks for sharing the UK bulletin!
What are the earliest signs of ovarian cancer? My aunt has a tumor almost the size of her ovaries, but rarely complains of pain, but gets fatigued very easily now. Is it benign? Cancerous? She's getting it checked on Friday.
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. While diagnosis of ovarian cancer is not the expertise of a genetic counselor, there are some reputable websites with good information and always contact your healthcare provider with concerns - it's good that your aunt has an appointment. Check out: https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq
Aside from the well known gene mutations that indicate a higher risk of breast cancer (BRCA1/2), what other genes are being studied? My wife was recently diagnosed with triple negative at 40 years old, but was not BRCA1/2 positive. There isn't a strong line of breast cancer in her family -- are there other genes coming into play that you're seeing through your testing?
Also what are your thoughts on testing like 23andme for BRCA mutations -- is that a reliable test, or is it like buying Jerky from a gas station (You never know what you're going to get)?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. This is a great question and the answer to is evolving rapidly. While mutations in BRCA1/2 are the most common causes of hereditary breast cancer, there are other more recently described hereditary causes of breast and other cancers, as well. A large 2015 study by Couch et al. in the Journal of Clinical Oncology showed that approximately 4% of women with triple negative breast cancer had a mutation in a different gene associated with some degree of elevated cancer risk. (https://www.ncbi.nlm.nih.gov/pubmed/25452441) This additional testing is complex but may be something that your wife would like to discuss with her healthcare providers and her genetic counselor. Best wishes to your wife in fighting her cancer!
I've read several reports that conclude that birth control pills increase the risk of breast cancer. Do you also acknowledge this link, and should women avoid birth control pills if they wish to minimize their risk of breast cancer?
Also, why does it seem like this link is not discussed much?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Thanks for asking this question, which is similar to another we received so I'll answer similarly here. You are right - data have suggested in some studies that some birth control pills can increase breast cancer risk and there are also studies that suggest that birth control pills decrease ovarian cancer risk. As such, there is a definite need to weigh risks and benefits in when considering using birth control pills. A comprehensive risk assessment to determine baseline cancer risk is a reasonable first step so that any increase or decrease in risk is estimated accordingly. With the help of the rest of the healthcare team, a genetic counselor can aid in describing the cancer risks and how they can be positively or negatively impacted by interventions like birth control pills. Ultimately, we encourage women to ask questions of her physicians about the pros and cons of any risk modifying option so that she can find the best fit.
What is the best advice you would give to a breast cancer patient who has completed treatment (Radiotherapy only)?
This is Lisa from FORCE. Many cancer treatment centers work with you health care to develop appropriate survivorship plans that include followup care guidelines, screening recommendations, and other information. We encourage patients to have these conversations with their health care providers.
Can guys get breast cancer? If so what are the percentages like?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Men can get breast cancer. It's far less common in men than women with most men in the general population having a 0.1% of developing the disease. Men with BRCA gene mutations can have a 6-9% chance of developing breast cancers, though, which is one of the reasons why it's important for men to think about their cancer family history, too. There was another Breast cancer AMA this week about breast cancer risk in men - check it out! Thanks for your question.
I was tested and shown to have the PALB2 gene mutation. So far, all that has been recommended to me is to either have a double mastectomy, or to alternate between mammograms and MRIs every six months. I have an appointment with a specialist to talk to me about the double mastectomy surgery and what it involves, but I had hoped to get advice on lifestyle modification at some point. Is this customary with a genetic counselor, or do they usually have someone advise you on diet and exercise?
I've read about how being overweight, being sedentary, and drinking alcohol all increase your chances of getting breast cancer, and I had hoped to get some confirmation on these things as well as a bit more direction as to what I should be doing until I'm ready to have surgery. For instance:
Should I quit drinking altogether?
Do I need to lose down to my recommended BMI, or is being out of the obese range what matters?
Should I eat a low fat diet? Is there anything in particular I need to avoid?
Is cardio important?
These are the things I wonder and would like to hear about from a breast cancer professional.
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. Thanks for this very important question - it sounds like you've given this a lot of thought. We know that there are many things that impact cancer risk. We know far less, however, about how all of these things that impact risk work together or against each other. A mutation in a gene like PALB2 or BRCA1/2 is likely one of the bigger contributors to personal breast cancer risk when compared to something like diet, etc. You may have options presented to you that modify risk in other ways (you mentioned surgery but there are medications that have been shown to reduce risk, as well). You may find it helpful to meet with a genetic counselor and a dietitian since some modifications may affect your risk for other disease (heart disease and diabetes for instance), as well. If you're interested, you can find a genetic counselor at www.nsgc.org
If female family members are genetically at-risk for breast cancer, are male members of the family at-risk as well?
Thank you for all your work, save the b00bies!
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. It's so important for us to include the male members of the family in this discussion but this can impact their risk, too. Men in families with BRCA1/2 gene mutations have an estimated 6-9% chance of developing breast cancer and are recommended by the National Comprehensive Cancer Network to have breast cancer screening. https://www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf It's possible that risk of male breast cancer is increased in other hereditary breast cancer predisposition syndromes, as well, but the data is limited. Thanks for asking!
How did you come up with the name, FORCE?
This is Lisa from FORCE: FORCE stands for Facing Our Risk of Cancer Empowered. The FORCE community is people and families affected by hereditary breast, ovarian, and related cancer. People from families affected by hereditary cancer face different decisions about cancer risk management and treatment than people at average risk of cancer. FORCE gives provides expert-reviewed information and support to help people facing this high risk of cancer.
What do you guys think about the huge problems of overdiagnosis and overtreatment caused by non-targeted screening, such as all women over 50, rather than specifically targeting those who are genetically predisposed to higher risk?
More generally, what do you guys think about the lack of scientific consensus that early detection and diagnosis on average provide a benefit?
This is Lisa from FORCE. We see a lot of confusion in our community about different breast cancer screening guidelines and the risks and benefits of early detection. We work with families facing hereditary breast and ovarian cancer, so our primary concern is assuring access to the screening recommended by national guidelines for people with increased breast cancer risk. We have written on our concern about the different guidelines hindering access to care and leaving significant gaps (such as screening for men at increased risk of breast cancer). You can read about our advocacy work on breast cancer screening: *Cancer Screening Guideline Loopholes and Confusion Jeopardize Coverage of Services: Part II of Access to Care Series *http://www.facingourrisk.org/get-involved/HBOC-community/BRCA-HBOC-blogs/FORCE/uncategorized/mammogram-update-latest-screening-guidelines-finalized-but-not-implemented/
In a recent article on new research that tries to tailor breast cancer screening based on risk factors and breast density we noted the different guidelines put forth by different groups. We have seen that this lack of consensus can confuse patients.
My grandmother had ovarian cancer and my mom just found out she has breast cancer. My great grandmother on my fathers maternal side had breast cancer and this is the only history. My doctor recommends I get genetic testing done. What are my risks as a male?
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. I'm sorry to hear of your mother's recent diagnosis and I'm glad you've asked the question. I'm assuming it was her mother that had ovarian cancer and if this is the case, genetic counseling and consideration of genetic testing could be informative for your family. In general, however, we typically recommend starting genetic testing in a family with a person who has had breast or ovarian cancer (like your mother) because that is the most informative approach in trying to determine if the cancers in the family are hereditary. If your mother has a mutation, you could be tested for the same mutation and interpretation of your test result would be clearer. At that time, both sides of your family will be evaluated so that your risk assessment is comprehensive and thorough. If you'd like to meet with a genetic counselor and don't know where to find one in your area, try: www.nsgc.org
I did the 23andMe testing. I chose to download the raw data and use external programs to analyze the data looking for the genetic link to Hypertrophic Cardiomyopathy as my mother has this and there is a genetic component. By doing the analysis, I found I have BRCA1 and BRCA2 gene mutations. The only family history I know of for breast cancer is my grandmothers sister. I have had watched off and on in my breasts over the years but nothing overly concerning. What should I do with this information? I am 34 years old with 2 young children. Both children were breastfed. One for 18 months and one for over 2 years. I am nervous and scared to have this information but also have no idea what I should do. Genetic counselor? OB? Any help would be greatly appreciated.
This is Lisa from FORCE. I would highly recommend finding a genetic counselor to discuss the your results from the external program. It is important to note that not all changes in BRCA1 or BRCA2 detected with these programs are mutations that increase cancer risk (sometimes called pathogenic or deleterious mutations). A genetic counselor can look at the information you have, as well as your personal and family history of cancer and discuss the appropriate tests to see if you are at increased risk of breast cancer. You can find a genetic counselor through the National Society of Genetic Counselors website
I have no family history of breast or ovarian cancer, but my paternal grandmother died of vaginal cancer. In addition to breast self exams, what can I do to check for ovarian cancer? Is there a higher risk for all gynaecological cancers if there's one other type in the family?
This is Lisa from FORCE. A genetic counselor is the best person to consult if you are concerned that the cancer in your family might be hereditary. You can find a genetic counselor in your area using at National Society of Genetic Counselors website
What do you believe the role of exercise to be in the risk of developing breast cancer, and what amounts do you recommend?
This is Lisa from FORCE. We work with people at facing hereditary breast cancer so I will limit my comments to women at high risk. We encourage healthy lifestyle choices because of the multiple health benefits. The role of exercise in managing cancer risk for women at high risk is still an active area of research. We reviewed the most recent evidence Aerobic exercise lowers estrogen levels in premenopausal women at high risk for breast cancer. While this shows some effect, our expert reviewer points out "This was the most crucial limitation of the study—investigators looked at estrogen levels, yet changes in estrogen levels may not result in any change in breast cancer risk."
How important are self-exams? The information out there seems to be mixed.
Hello! Leigha Senter here – Genetic counselor and NSGC cancer genetics expert. The National Comprehensive Cancer Network now promotes "breast awareness" rather than strict routine breast self examination. This means that women should be familiar with their breasts and promptly report changes to their healthcare providers. Thanks for asking!
Hello. I don't know if there's anything you can say to this but figured I'd ask.
My mother was diagnosed with breast cancer last April. Since then she's undergone surgery, had lymph nodes removed, chemo, and is starting radiation. However it appears the cancer metastasized to her ovaries. We've been told there's no cure now. Apparently her cancer is rare (15%) and slow growing.
Is there anything we should be looking into? What about her son (myself) or my sister? What about my daughter?
We live in Canada as a final note; not sure if anything you offer is only limited to the USA.
This is Lisa from FORCE. I am so sorry to hear about your mother's diagnosis. To better understand treatment guidelines, we recommend looking at the National Comprehensive Cancer Network patient guidelines. If you are concerned that the cancer in your family might be genetic, please see our Should I Get Genetic Testing? page for signs of hereditary cancer and information on finding a genetic counselor. FORCE is based in the US, so our advocacy work is focused on the US health care system, but our resources are available to all.
Literally 25,000 cancer research papers have been published since the last update listed on your webpage (8/12/2016). When do you envision AI will be employed to assist in "regularly updating" risk management guidelines?
Edit: NP domain for cross-post
This is Lisa from FORCE. Great question! While many cancer research papers are published every day, not all are relevant to the hereditary cancer community and even fewer change clinical management guidelines.
FORCE draws upon the expertise of our Scientific and Medical Advisory Board and current evidence-based cancer risk management guidelines from the National Comprehensive Cancer Network (NCCN) to help us education patients on the latest evidence-based recommendations.
Edited to note: We note the date updated on each individual page, not for the entire site. New content is added nearly every day.
What are your thoughts on how diet plays a role in cancer?
This is Lisa from FORCE. We work people facing hereditary breast cancer, I will limit my comments to this type of risk. In these cases, the inherited risk from mutations in BRCA1, BRCA2 or some other genes is greater than risk from the diet. We get many questions about diet and maintain expert-reviewed resources on our website that looks at the role of Diet and Nutrition in hereditary cancer risk, and address cancer headlines on diet and other lifestyle factors as part of our [XRAYS: Making Sense of Cancer Headlines Program](This is Lisa from FORCE. We work people facing hereditary breast cancer, I will limit my comments to this type of risk. We get many questions about diet and maintain expert-reviewed resources on our website that looks at the role of Diet and Nutrition in hereditary cancer risk, and address cancer headlines on diet and other lifestyle factors as part of our XRAYS: Making Sense of Cancer Headlines Program
Why is there so much fundraising and awareness campaigns for breast cancer when so little is spoken about the other cancers like prostate that has 180,000 new new cases every year?
This is Lisa from FORCE. We serve individuals and families affected by hereditary breast, ovarian, and related cancers. The predominant cancers in our community are breast and ovarian, but men with mutations in BRCA1 and BRCA2 are at increased risk of prostate cancer, and often get prostate cancer that is more aggressive and is diagnosed at a younger age. Please see our recent article HBOC Week Special: Inherited Mutations in BRCA1/2 and Related Genes More Common Than Expected in Men with Advanced Prostate Cancer for more information.
Lisa from FORCE. Our mission is to improve the lives of people affected by hereditary breast, ovarian and related cancers. We have information on our site on hereditary breast, ovarian, pancreatic, and prostate cancers. It is important to note that women with inherited BRCA1 or BRCA2 mutations face a 60-80% lifetime risk of breast cancer and men with inherited BRCA1 and BRCA2 mutations face an up to 6% lifetime breast cancer risk.
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