A painful reminder that men can get breast cancer too

A 28-year-old British man died Friday from breast cancer. He was diagnosed with breast cancer at age 24 and is reported to be the youngest male victim of this disease in Britain. Nickey Avery's death is a painful reminder that men also get breast cancer.

The breast cancer ribbon is pink, a feminine color. Both the ribbon and much of the public discussion of breast cancer seemingly excludes men. But it shouldn't. Men need to be aware that they are also at risk for breast cancer. And men in families with known BRCA mutations need to be especially aware of this danger as these men are at greater risk for breast cancer than men in the average population.

We dedicated an entire chapter of Positive Results to men with BRCA mutations and the cancer risks faced by such men. As we discuss in greater detail in Positive Results, BRCA-positive men are at greater risk for developing breast cancer than are men in the general population. And men with BRCA2 mutations face the highest risk.

A new study on the breast cancer risk of BRCA2-positive men in the Journal of Medical Genetics reinforces the risk estimates found in earlier studies. Specifically, this new study found that breast cancer risk for men withBRCA2 mutations is 7.1 percent to age 70 and 8.4 percent to age 80. While these numbers are relatively modest when compared with the breast cancer risk of aBRCA2-positive woman (whose breast cancer risk is from 45 to 87 percent by age 70), they are actually not much below the average woman's risk of breast cancer and are certainly in the range that should require men to pay attention to their bodies and think about surveillance and early detection. As with breast cancer in women, early detection of breast cancer in men can save lives. Having a family history of male breast cancer is a very compelling reason to undergo BRCA testing, but remember that there are also several other known genetic causes of male breast cancer so for those who test negative, additional medical investigation is important.

Fortunately, Positive Results seems to be having a positive impact on the men in at least one BRCA2family. Joi recently attended a FORCE meeting that included several BRCA2-positive cousins, several of whom had already battled breast cancer. One of these women assumed that she had inherited her mutation through her father, although he would not test for the mutation. Positive Results has the stories of a BRCA-positive father and daughter as well as the story of a BRCA2-positive man who has had breast cancer. The father talks not only about his mother's and daughter's battles with breast cancer but also about his experience as the only man in a breast cancer screening clinic. This woman highlighted these stories and sent the book to her father. These stories changed his mind not only about genetic testing but also about surveillance. He agreed to be tested and not surprisingly tested positive for the family BRCA2mutation. Then he went a step further and enrolled in a high risk screening program. Like Steve, who is profiled in the book, this man is overcoming his discomfort with being the "only man in a breast cancer screening clinic" and being proactive about protecting his health.

Dr. Gordon notes that male patients are often uncomfortable at first thinking about breast cancer, as it is so ingrained in our collective psyches as a female disease. The hard facts are that men are often diagnosed at more advanced stages of breast cancer, despite the exam and detection being easier, because they ignore the signs, since "that lump can't be anything". Clinical and self examination are the mainstay of screening, though mammograms are helpful if the man's particular build allows for them to fit in a mammogram machine. Yes, the wives often suppress a little smile and think "ah ha, finally, the guys get to know what we put up with!" I stress the importance of becoming part of a breast care center and reassure them that there will be plenty of men in the waiting room, though the other men might not actually be patients it will not be uncomfortable to be sitting there. I also make sure to let them know that even if they get a mammogram, no one will ever make them wear pantyhose. So to all the men who are BRCA mutation carriers or at other genetic risk, man up and take care of yourselves!

Memories

This post is dedicated to my paternal grandmother, who passed away a year ago.

I am lucky.  My grandmother was part of my life until a few days before I turned forty-five. I did not expect that my grandmother would live forever but I had never known her to be sick so her death was a shock. At the age of 95 she still enjoyed life to the fullest. She traveled, played bridge, lived alone, drove, cooked for friends and family, went to church, and visited ailing friends in the hospital or nursing home. She was also a die hard St. Louis Cardinals fan.  She rarely missed a televised game and she went to spring training in Florida many, many years.

My grandmother was an incredible woman. She loved to travel, crochet, knit, and do needlepoint.  And she loved to play games, especially card games.  I don't ever remember a time when she would refuse to get down on the floor with my children and play any game they requested.  Family holidays always included game playing marathons.
 
As a child I would spend weeks with her in the summers.  My grandfather passed away when I was five and my memories of him are fuzzy.  But my memories of my grandmother include both the memories of a child and the memories of an adult. After I graduated from law school I went on vacation with my grandmother, one of my father's cousins, and an aunt. We drove from Missouri to South Carolina, where my aunt and uncle were building a house. Along the way we did not pass by any opportunity to shop and I still have many of the purchases we made on that trip. I would find something that I would need for my new apartment and my grandmother would decide that she needed the same thing.

Many of my childhood memories center around ceramics. She was a ceramics teacher and the basement of her house was her studio, complete with two kilns, a wall of paint jars and all manner of things both painted and unpainted. She made decorations for every holiday and many of my gifts were dolls, or other things she painted. She also did china painting, creating delicate lifelike flowers on the surfaces of china plates, cups, saucers, teapots, vases, and pitchers. Her artistic talent unfortunately did not flow down my line of the family. Although I spent many hours painting ceramic objects of all sorts in her studio, the only ones worth keeping are those that involved her steady hand and keen eye.

My grandmother's life is certainly one worth emulating.  She worked hard and played hard.  She was dedicated to her children, her family, and her church.  She cared deeply for others.  She enjoyed every minute of the life she had.  Several weeks before she died, my grandmother and her sister went with my parents and several other relatives on a tour of the Missouri wine country (yes, Missouri does have a wine country).  They were having lunch at a winery when a group of young men in their twenties approached and asked my grandmother how old she was.  When she told them she was 95 they asked if they could take a picture with her.  They told her that they loved that she was out drinking wine and having a good time and they wanted to show the picture to their mothers.  I remember her laughing when she retold this story.

My grandmother was doing much the same thing on the day she died.  She had gone to lunch with her two daughters and they had planned a walk after lunch around the botanical gardens.  Shortly after they left the restaurant my grandmother fell, hitting the back of her head hard on the pavement.  She lost consciousness immediately and died a few hours later of the bleeding caused by the impact.  Her death was hard on me and on everyone else in her family because it was so unexpected.  But it certainly was easier for her.  She never suffered ill health or the slow debilitating decline either mentally or physically that happens to many people as they age.  This, I think, is a true blessing even though it is never easy to lose the ones we love, whether they are taken from us prematurely by disease or whether they have lived full lives.

I aspire to be like my grandmother: vibrant, healthy, happy, and enjoying life and family until the day I drop.  And I don't intend to let my BRCA mutation interfere with that goal.

Kickin' Cancer 2010

As we all know, there is a huge need for increased ovarian cancer awareness and increased funding for ovarian cancer research. I am thrilled to be leading “Team FORCE” to raise money to help FORCE and the Lynne Cohen Foundation achieve these goals.

What is the Lynne Cohen Foundation?

"The Lynne Cohen Foundation is dedicated to providing state-of-the-art, comprehensive patient care for women and families at increased risk of ovarian and breast cancer through the Lynne Cohen Preventive Care Programs; supporting research aimed at finding an ovarian cancer early detection test; and to supporting and enabling highly-focused, multi-institutional research which will lead to effective prevention strategies and interventions to improve the quality of life and survival rates of women with ovarian and breast cancer."

What are we going to do?

We have created "Team FORCE" for the 2010 KICKIN' Cancer 5K walk/run on Sunday, September 19, 2010 in Brentwood, California. All money raised by Team FORCE will go to the following:

1. Fifty percent will go to FORCE to fund ovarian cancer related activities and materials.

2. Fifty percent will to go fund genetic testing for the under served/uninsured at the Lynne Cohen Preventive Care Clinic for Women's Cancers at USC/Norris Cancer Center in Los Angeles.

How do you join Team FORCE?

Go to the KICKIN' Cancer website to register for our team. Click on the "Register Here" button and follow the instructions. Click on "Join a Team" and in the drop down menu select "Team FORCE."

BE SURE TO ENTER THE DISCOUNT CODE "force" AT THE TIME OF REGISTRATION.

This will do two things. First, you will receive a $5 discount on your registration. Second, the Lynne Cohen Foundation will use this discount code to track the moneys raised by the FORCE team that will be distributed to FORCE and to the genetic testing fund at the Lynne Cohen Preventive Care Clinic for Women's Cancers at USC/Norris Cancer Center.

What if I cannot come to the event?

We hope you come out on September 19th to support our FORCE team and the Lynne Cohen Foundation. The day promises to be a fun one that engages the whole family. Bring your kids for the Kiddie Fun Run. But if you cannot join us physically you can still support this great cause by (1) donating to one of our participants, (2) donating to our team here, or (3) by being a virtual runner.

If you have any questions about Team FORCE, Kickin' Cancer or how to register contact Joi at Joi@facingourrisk.org.

Adios Ovaries

The countdown is on. Surgery to remove my ovaries and plunge me into instant menopause is scheduled for August 5th. To say that I am not looking forward to this is an understatement. I am not looking forward to surgery. I am not looking forward to the recovery. I am not looking forward to getting totally out of shape and fighting my way back to my current level of fitness. And I am NOT looking forward to menopause.

My fear of menopause is tinged with a level of irony. My first period arrived on my 12th birthday. I was appalled that I would need to endure this nuisance monthly for the next 30 to 40 years. Now, while I do not relish my monthly period, I am more appalled by the stage of life that the lack of this event portends. There is no way around it. Menopause means dealing with the issues of aging.

Dr. Karen Hurley at the FORCE conference a few weeks ago talked about why preventive surgery decisions for those of us at high risk are so emotionally charged. She said that for many of us this is the first time that we must face our own mortality. I think she is right. For me, as for many of us, removing my ovaries is much more than giving up fertility, although that is clearly an important aspect of the issue. Rather, it involves squarely facing issues of aging and acknowledging our mortality. We must begin worry about our bone and heart health because the estrogen that has protected us for the first half of our life will be gone.

And then there are those lovely menopause symptoms to look forward to: hot flashes, night sweats, sleep disturbances, sexual functioning issues, mood swings and others. (My husband's biggest fear is that I will become a raging *itch with no libido.) Of course we may not have all of these symptoms and the severity of the issue differs from woman to woman, but few make this transition without a few bumps in the road.

My BRCA mutation comes from my mother's side of the family. None of the women on this side of the family have gone through natural menopause, at least not in the past four generations, which is as far back as our collective memory goes. My mother's early menopause was caused by her breast cancer treatment when she was forty-three. All of the other women on this side of the family had total hysterectomies, which included removing their ovaries, in their thirties or forties.

All of these women have dealt with osteoporosis, which leads me to worry a great deal about my bones. By the time she was in her sixties, my great aunt's spine had degenerated to the point that she was in constant pain. Fortunately drugs available now can prevent bone loss and can actually increase bone density. These drugs were not available to my grandmother and her sister.

The key to keeping bones healthy is to know your bone mineral density and to intervene with these bone building drugs before the damage becomes severe. This means that post menopausal women (and older men) need to have regular bone mineral density tests to monitor bone health. For most people, the bone mineral density test involves a radiological scan of the lower spine and a separate scan of the hip. It is painless and takes only a few minutes. The reason the spine and hip are used for these scan is that people with osteoporosis have a higher likelihood of breaking these bones and because these bones are a good indicator of what is going on with the rest of the bones in the body.

I went this week for my first bone mineral density test because I will be entering menopause in few short weeks. I have to admit that thus far in my life I have not been good about taking calcium supplements and I am allergic to dairy products so I was a bit worried that I would not be starting from a good baseline point.

After the scan, the technician gave me a copy of the report that she sent to my doctor. The report contains bone mineral density scores for a number of locations on the bones of each scan. These numbers are then averaged into an overall score known as a T-score. Because peak bone mineral density occurs around age thirty, the T-score compares your bone mineral density with that of the average thirty year old. Here is a reference for the meaning of the T-score:

• A T-score between +1 and -1 is normal bone density.
  

• A T-score between -1 and -2.5 indicates low bone density or osteopenia.

• A T-score of -2.5 or lower is a diagnosis of osteoporosis.

Fortunately all of my bone mineral density scores were above 0, which puts me squarely in the normal range, and the overall T-score for my spine was actually greater than 1, which means my spine is a bit of an overachiever for my age. What I hope is that this means I won't start getting shorter any time soon!


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Fish oil supplements and breast cancer prevention-continued

I do support my patients taking omega 3 fish oil supplementation, though I caution that there is no proof that it is effective for breast cancer prevention. In addition, no one knows what "dose" is appropriate. If you can calculate based on the supplement you have the equivalent of 1/2 serving of fish a day that is reasonable. Most supplements are mercury free, but it is always important to verify.

I had a clinical trial open a few years ago 'treating' women at high risk with fish oil supplements. It was a rather involved study requiring multiple blood tests and a procedure known as ductal lavage (where a tiny catheter is placed in the nipple to extract fluid). We couldn't get women to join the study because they thought, "Gee, I'll just take the fish oil and not go through all that riga-ma-roll!" Of course that is understandable, but the problem is the medical community cannot prove benefit to any intervention, no matter how 'low tech' like a supplement, without individuals being willing to sacrifice their time and energy for an unproven benefit. Its certainly easy to see why healthy at risk women would be less motivated than perhaps a woman with cancer.

In this study reviewed by Joi, there is one group for whom use of fish oil was associated with an increase in breast cancer risk, that is the group of women who reported having recent coronary artery disease. This is surprising as one of the main beneficial properties to fish oil is the anti-inflammatory effect, and there is substantial evidence that fish oil is protective against athero-sclerotic heart disease. Perhaps having had a heart attack leads to different inflammatory markers in the blood that the fish oil has an negative interaction with. Or that finding will not hold up with future investigation. Most importantly you must remember the nature of this study- it was a prospective survey collecting many health and dietary characteristics on healthy women without cancer which was then repeated years later and matched with the state registry for breast cancer cases. It provided reinforcement that the study I was trying to do a few years ago is really needed- we have to give fish oil in a controlled environment (with a placebo) and find a minimally invasive way to look at breast biomarkers that can serve as indicators that the fish oil is reducing inflammation or cell growth without having to wait 20 years to see who develops breast cancer and who does not.

This post sent from Tel Aviv, Israel where I am enjoying a fish oil rich diet and lots of vitamin D for a week!

Fish Oil May Reduce Breast Cancer Risk

OK, as we mention in Chapter 6 of Positive Results, the headlines on which foods and supplements modify breast cancer risk change almost weekly.  If you have been watching the headlines this week you know that fish oil is the latest fad in the news.  This wave of publicity is the result of a study published in the current issue of Cancer Epidemiology Biomarkers & Prevention from the Specialty Supplement and Breast Cancer Risk in VITamins And Lifestyle (VITAL) Cohort.  You can find the article here.

Fish oil was only one several supplements studies in the VITAL trial.  It was, however, the only one that showed any correlation with potentially reduced breast cancer risk.  Specifically, the study showed a modest but statistically significant reduction in breast cancer risk among postmenopausal women (ALL women not specifically high-risk women) who reported taking fish oil supplements.  This study did not follow the amount or type of supplement taken.

So what does this mean for me?

The study authors were careful to say that their conclusion about the potential for fish oil to reduce breast cancer risk in the general population needs further study.  They have also said that the current research does not warrant a broad recommendation that women of any age start taking fish oil supplements just to reduce breast cancer risk.  You can find a related articles from Medpage Today and WebMD explaining the report here and here.

Many men and women take fish oil supplements because of their anti inflammatory properties including their potential to reduce heart disease risk.  The National Institutes of Health information page on fish oil supplements, including the conditions for which there is evidence of beneficial effect and the safety of such supplements can be found here.

If you are taking fish oil supplements for other reasons, you may be getting an added breast cancer risk reduction benefit.  But there is not sufficient evidence of fish oil's ability to prevent breast cancer to justify relying on it for breast cancer prevention, especially if you are at high risk for breast cancer due to a BRCA mutation, other genetic mutation, or family or personal history.

This study nonetheless will spur further research into the use of fish oil supplements for breast cancer prevention, which we think is a good thing. 

Passing it on

One of the questions we were asked at the FORCE conference was why we did not devote more time/space in Positive Results to the issue of preimplantation genetic testing, known as PGD.  The honest answer is space.  We had a word limit for our manuscript and we we had a lot of critical information to cover.  While we do discuss the mechanics of PGD in Chapter 4, there is more that can be said about this important issue. 

What is PGD?

PGD is a reproductive technology used to identify genetic abnormalities in embryos created through in vitro fertilization (IVF).  The embryos with genetic abnormalities such as BRCA mutations can be discarded and not implanted into the mother thereby virtually guaranteeing that the child born will not carry the identified family genetic mutation.  The likelihood that the baby will be mutation free is 98 percent.

One thing that became clear from our conversations with a variety of women at the conference is that there are lots of strong feelings on this subject.  Some women clearly feel that they want this ugly mutation to stop with them and not be passed on to the next generation.  If they have the power to do that, then they will, provided the cost is within their budget.  Other women feel that they/their mother/their cherished grandmother would not have been born if a prior generation had made such a selection.  They believe that despite the mutation the world is a better place because these women were in it and they do not believe one should tinker with nature.

Fortunately, this is an individual decision and there is no Orwellian big brother dictating our actions.  But as with most decisions, reality does play a role.  Even for couples who favor not passing on a BRCA mutation to their children, the expense and inconvenience of the procedure may be a deterrent.

PGD is expensive.

On average, PGD costs about $3,000 on top of the cost of IVF, which can cost $10,000 to $20,000 per cycle.  In the United States this cost is rarely covered by insurance, thereby putting use of this technology out of reach for many.

In countries with public health systems, the cost of IVF and PGD may be totally covered.  I had a conversation with a woman from Britain at the FORCE conference who said that her BRCA-positive daughters had been offered PGD as part of their family planning.

Considerations are different for women who are facing the end of their fertility because they have been diagnosed with cancer or because they are previvors who have not yet found a partner but who are reaching the age when they must consider prophylactic oophorectomy (removal of the ovaries) to prevent cancer.  For these women, preserving fertility likely means fertility treatments to stimulate egg production, harvesting eggs, and freezing eggs or embryos conceived through IVF.  These procedures can preserve a woman's fertility for a later date, including preserving fertility for after chemotherapy.  Women's Health magazine has an article this month on preserving fertility in the face of a breast cancer diagnosis.  You can find it here.  For these women, the incremental cost of PGD on top of IVF costs is not likely to be a barrier to using the technology.  And for BRCA-positive women who have already been diagnosed with cancer, the impetus to prevent this disaster from befalling their future children is high.


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Share Your Story

The producers of the Oscar Award winning documentary The Cove are currently working on a new film that explores the way people make decisions across the globe. They are looking to find someone who is making decisions about whether have genetic testing for hereditary breast and ovarian cancer risk, the BRCA test, including whether or not to undergo testing and the effect genetic testing may have on their future decisions.  Ideally, they would like to find someone who is at the beginning of this decision-making journey and exploring the pros and cons of their decisions.  The film would follow the individual's decision-making process and follow them moving forward.  However, they would be open to finding someone at any stage of the journey -- including those struggling with surveillance, prevention, ans surgery options -- who has an interesting story.

Please send your stories, questions or comments to eastpleasantpictures@gmail.com. 

Joining FORCEs with the Lynne Cohen Foundation

My May 19, 2010 blog was about the need for increased ovarian cancer awareness and increased funding for ovarian cancer research.  I am happy to announce that FORCE will be teaming up with the Lynne Cohen Foundation to help achieve these goals.

What is the Lynne Cohen Foundation?

“The Lynne Cohen Foundation is dedicated to providing state-of-the-art, comprehensive patient care for women and families at increased risk of ovarian and breast cancer through the Lynne Cohen Preventive Care Programs; supporting research aimed at finding an ovarian cancer early detection test; and to supporting and enabling highly-focused, multi-institutional research which will lead to effective prevention strategies and interventions to improve the quality of life and survival rates of women with ovarian and breast cancer.”

What are we going to do?

We are going to create a FORCE team to join the 2010 KICKIN’ Cancer walk/run on Sunday, September 19, 2010 in Brentwood, California.   All money raised by the FORCE team will go to the following:

1.     Fifty percent will go to FORCE to fund ovarian cancer related activities and materials.
2.     Fifty percent will to go fund genetic testing for the underserved/uninsured at the Lynne Cohen Preventive Care Clinic for Women’s Cancers at USC/Norris Cancer Center in Los Angeles.

How do you join Team FORCE?

We have created a FORCE team.  Go to the KICKIN’ Cancer website and register for the team.  Click on the "Register Here" button then select "Join a team" and select "Team FORCE"  from the drop down menu.

BE SURE TO ENTER THE DISCOUNT CODE “force” AT THE TIME OF REGISTRATION.

This will do two things.  First, you will receive a $5 discount on your registration.  Second, the Lynne Cohen Foundation will use this discount code to track the moneys raised by the FORCE team that will be distributed to FORCE and to the genetic testing fund at the Lynne Cohen Preventive Care Clinic for Women’s Cancers at USC/Norris Cancer Center.

What if I don’t live near Los Angeles?

We hope you come out on September 19th to support our FORCE team and the Lynne Cohen Foundation.  The day promises to be a fun one that engages the whole family.  Bring your kids for the Kiddie Fun Run.  But if you cannot join us physically you can still support this great cause by either donating to one of our participants or by being a virtual runner.