Dr. Ora Gordon discusses preventing breast cancer on CBS

A new report released this week concludes that there are lifestyle changes women can take to reduce breast cancer risk.  As readers of Positive Results know, we devoted an entire chapter to this important topic and we welcome further research in this area, which is as of yet far from clear.

Here is a short summary of the conclusions reached in the Institute of Medicine Report released this week:

"—Yes: Hormone therapy combining estrogen and progestin, excess weight after menopause, alcohol consumption and radiation from too many medical tests, especially during childhood. The panel doesn't say how much radiation is too much, but says two or three abdominal CT scans give as much as atomic bomb survivors received. Mammograms use minuscule amounts and should not be avoided. Oral contraceptives slightly raise breast cancer risk while taken, although cancer rates are very low in the age groups that use them.

—No: Hair dyes and the kind of radiation from cellphones, microwaves and electronic gadgets. 

—Probable: Smoking.

 —Possible: Secondhand smoke, nighttime shift work and exposure to benzene and a couple other chemicals through jobs or from breathing car fumes or pumping gas. It is "biologically plausible" that BPA and certain other plastics ingredients might affect estrogen, which fuels most breast cancers, but evidence is mostly in animals and lab tests — not enough to judge whether they harm people, the panel concluded."

Dr. Ora Gordon commented on the study in a CBS interview this week: Studies Show Women Can Control Many Breast Cancer Risk Factors « CBS Philly.



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Dr. Ora Gordon on CNN with Dr. Drew

Here is the link to Dr. Gordon's CNN interview on Dr. Drew, which aired yesterday: http://www.cnn.com/video/#/video/bestoftv/2011/12/06/exp-drew-breast-cancerr-hln.cnn


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Dr. Gordon on HLN Tonight!

The news that Giuliana Rancic is planning bilateral mastectomies has brought the issue of preventive mastectomies back to the forefront of the news.  This evening on HLN Dr. Ora Gordon and BRCA-positive friend Wendy K. will be on with Dr. Drew at 9 p.m. and midnight EST and 6 p.m. and 9 p.m. PST discussing this!

I don't know how much of the BRCA perspective will survive the editing room floor but my fingers are crossed!

Joi


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Yes Dorothy, Ovarian Cancer can start in the fallopian tubes

As we discussed in Positive Results, researchers are finding an increasing number of BRCA-related ovarian cancers starting the lining of the fallopian tubes at the time of preventive surgery in BRCA-positive women.  Here is the story of one such woman, who shares the intimate details of her surgery, pathology and diagnosis to help inform others about this risk:



Click here to see all of her story.


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Secretary Sebelius statement for 2011 National Breast Cancer Awareness Month

The following statement was released on September 30th by Health and Human Services Secretary Kathleen Sebelius:

"For more than 25 years, National Breast Cancer Awareness Month has been a time to reaffirm our commitment to fighting breast cancer and to remind ourselves of the importance of prevention and early detection. Breast cancer remains one of the most frequently diagnosed cancers among American women and despite remarkable advances in treatment and prevention, it remains the second leading cause of cancer death. This year alone, it is estimated that more than 230,000 U.S. women will be diagnosed with breast cancer and nearly 40,000 will die of the disease.

Regular mammography screening can help lower breast cancer mortality by finding breast cancer early, when the chance of successful treatment is best. If 90 percent of women 40 and older received breast cancer screening, 3,700 lives would be saved each year. Costs, even moderate co-pays, deter many patients from receiving these important screenings. Under the Affordable Care Act, women’s preventive health care – such as mammograms and screenings for cervical cancer – is covered with no co-pays or other out-of-pocket costs.

In addition to regular mammography screening, there are steps that women can take that may help reduce their risk of developing breast cancer. Women should talk with their doctor about their personal risk for breast cancer, when to start having mammograms, and how often to have them. Women should also try to maintain a healthy weight, exercise regularly, and reduce their intake of alcohol. If a woman is found to be at increased risk of breast cancer because of her medical history or a known high-risk gene mutation, she should talk with her doctor to decide what her best options are to reduce breast cancer risk might be. With the release of new Women’s Preventive Services Guidelines, a well-woman visit is available to women to have an opportunity to discuss her health care needs with her medical provider—at no additional cost to her.

The Affordable Care Act is also helping women who are going or have gone through costly breast cancer treatment. Beginning in 2014, it will be illegal for insurance companies to discriminate against anyone with a pre-existing condition. In the past, insurance companies could deny coverage to women due to pre-existing conditions such as breast cancer, and if coverage was attained, insurance companies set lifetime and annual limits on what the companies would spend for benefits. We have done away with lifetime limits, offering women the peace of mind that their health insurance will be available when women need it most. We are also phasing out the use of annual dollar limits over the next three years until 2014 when the Affordable Care Act bans them for most plans.

These changes are making real differences in the lives of American women and families. Prevention, coupled with continued research, will help save more lives and improve the quality of life for all of us touched by breast cancer."




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National HBOC Week!

It is National Hereditary Breast and Ovarian Cancer Week!

Check out this important video:




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Dr. Gordon on NPR's Talk of the Nation

In case you missed Dr. Gordon on NPR's Talk of the Nation last week you can read or listen to the interview here.  The subject was prevention and new treatments for cancer.


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Dr. Gordon on NPR's Talk of the Nation Today!

Dr. Ora Karp Gordon will be on NPR's Talk of the Nation TODAY!! Check your local NPR listing for the broadcast time in your area!


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BRCA Ovarian Cancer patients have better survival

Early studies showed that BRCA carriers had better odds of surviving ovarian cancer than do women without these mutations. The National Cancer Institute has how done a large meta-analysis of the existing studies to date which confirms this survival benefit. Women with BRCA2 mutations have the highest odds of surviving ovarian cancer although BRCA1 carriers have better odds than women without mutations. The following video explains this new study and future research in this area.



Click here to view the video.


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Come see us on May 24 at the Cancer Support Community

Just a reminder, if you live near Los Angeles your next opportunity to come see us is May 24th at the Cancer Support Community Benjamin Center.

Our topic:

High Risk Breast and Ovarian Cancer Update

 with Ora K. Gordon, MD and Joi Morris

authors of Positive Results Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer

We look forward to seeing you there!

Joi and Ora

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Pay it forward

"Pay it forward."

These are words I hear often from women involved with FORCE: Facing Our Risk of Cancer Empowered. Women find our organization at a time when they are in desperate need of support and information, often after being diagnosed with breast or ovarian cancer or after learning they or someone they love has a mutation on a BRCA gene.  Once they have survived surveillance, surgeries, and often chemo, the women of LA FORCE want to pay it forward and help other women travelling this fear fraught road.

Five years ago I was one of those women living in fear. My mother and I learned that we both have BRCA mutations and that her breast cancer was hereditary. We also learned that I needed to make drastic decisions in order to avoid also becoming a cancer statistic.

I turned to FORCE and the women I met were utterly amazing. They spent hours with me on the phone and in person, providing perspective, sharing their family stories, and most importantly, baring their breasts for me so that I could see up close and in person their breast reconstruction. Once I decided to have prophylactic mastectomies they supported me through the entire process, visiting me in the hospital and spending more hours supporting me during recovery. They even took me to the annual FORCE Conference in Florida, carrying my suitcase because I was only weeks post surgery and unable to lift anything heavier than my small purse. I became an Outreach Coordinator for FORCE because I wanted to pay it forward and help other women the way I had been helped.

I hear the same thing from women in our LA FORCE group regularly. We have become a network of women (and men) helping others down the scary path of negotiating hereditary breast and ovarian cancer (HBOC). The Los Angeles FORCE Outreach group was started 6 years ago by two sisters who found themselves facing life-changing decisions after learning that they carry mutations on the BRCA1 gene. FORCE is a national organization but these women wanted to reach out directly to other women in Los Angeles to create a one-on-one support group. Since that time LA FORCE has touched the lives of hundreds of women.

While this is the essence of FORCE it truly is so much more. FORCE:

• Provides a caring and experienced support system that helps people deal with cancer risks, decision-making, privacy issues, insurance issues, psychosocial issues, and family dynamics
• Empowers affected families to make informed decisions by making the latest “cutting edge” medical research accessible and understandable. With additional funding we could reach more people through community education events with health professionals in our community.
• Links individuals and families with medical resources and clinical trials specifically for hereditary cancer.
• Actively advocates for increased research and resources specific to hereditary breast and ovarian cancer; resources that are critical to finding effective prevention, detection, and treatments.
• Provides outreach and educational materials to the medical community and other community organizations.


No other organization does what FORCE does. FORCE is the only national nonprofit organization dedicated to helping families with HBOC. And it fulfills its mission on a shoestring budget.  No other nonprofit does so much with so little.

How can you help FORCE?

Two ways: 

1. If you live in Southern California you can create a video tribute to FORCE and enter it in the ABC Channel 7 Pay it Forward competition.  Seven nonprofits will each earn $7,000 and will be featured on ABC7.  Deadline for entry is Thursday May 12, 2011.  FORCE is so chronically underfunded that we rely almost exclusively on volunteers to complete our mission.  $7,000 could help us launch two to three more outreach groups in Southern California.  In addition to our groups in Los Angeles, Orange County and San Diego we would like to bring FORCE outreach to the West San Fernando Valley, to the Burbank/Pasadena area and to Riverside.  We have volunteers to help run these groups.  What we don't currently have is the money to get them started, to start and maintain their web pages, to print and distribute literature to these groups and to doctors in their area, to purchase the small tabletop displays for these groups to go out into the community and do their work representing FORCE at breast cancer walks and other community events, and to set up and maintain Constant Contact accounts for these groups to communicate with their members.

2. Visit the FORCE website and donate directly.

With a group like FORCE every dollar counts.  Please do what you can to help out today.



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Happy Mother's Day

"Mom? Where is the whisk?"

"Mom? Where is the pancake pan?"

"Mom? Where is the pancake recipe?"

"Mom? How can I tell if the pancake batter is too thick?"

"Mom? How do I turn it over?"

These are the sounds of my children making me breakfast on Mother's day. They want me out of the kitchen so they can accomplish their task unassisted but they have many questions. I of course will dutifully eat whatever they produce, regardless of whether it falls apart in the flipping or whether it ends up burned and I will likely do the kitchen cleanup at the end. But it is a lovely tradition our family has had since my sons were little. Even if I am awake hours before they arise I stay in my bedroom and allow them to bring me breakfast in bed.

Mother's Day is a day to celebrate our mothers and should be a day filled with joy and family celebrations. Unfortunately, when a BRCA mutation lurks in a family many of the mothers who should be celebrated have been taken from their families by breast or ovarian cancer. The loss of these mothers leaves a hole in these families and turns this day of joy into a day of sadness and remembrance. The FORCE Blog has stories and perspectives of mothers and daughters whose lives have been changed due to hereditary breast and ovarian cancer (HBOC). HBOC affects generations of women and families. If you are one of our regular subscribers it is no doubt touched your family.

I am lucky. Although my mother had breast cancer at age 43, she is a long-term survivor and still a central figure in our family. I don't know what I would do without her as she always hops on a plane and comes to rescue me in my time of need: the birth of my children, illnesses that have knocked me off my feet, recovery from surgery, and stepping in to fill my role on those rare occasions when I need to travel.

Thank you Mom, for everything!

What is your family's story?  Please share your stories and comments here or send us an email.  May should be filled with stories in tribute to our mothers.  Become a guest blogger and join us in paying tribute to all the mothers whose stories need to be told.

Happy Mother's Day!!!





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A lost generation

Well worth watching, and considering:



This video was created for the AARP U@50 video contest and placed second. It has had more than 15,000,000 views on YouTube since it was posted three years ago. You can view the video here.


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How to hear the news

Where were you when you learned about your BRCA mutation?  Were you nestled safely inside the office of a genetic counselor who could answer your every question with your husband by your side or did you receive a telephone call with the results while you were driving a car? Perhaps you were at work when the call came with the news:  "you tested positive."

Does does it matter where and how we are told about genetic test results? And does the answer to that question differ depending on whether the results are negative rather than positive?

Earlier this week I read a blog that started me thinking about these issues because the woman had been told her negative test results by email when she was at work:

I received an email from Dr. Stoutenburg Wednesday which read, “I just received your BRCA 1 and 2 results. I am sure that you are eager for the result. No mutation was detected. Thus, this cancer was not caused by an inherited abnormality in either of these genes. This is a good thing! We don’t need to consider preventative mastectomies and don’t need to consider testing other family members.”

She was clearly relieved by this news and the fact that it came by in the middle of her work day thrilled her.  She was happy to get that electronic missive.  But what if the news had been different? In the book Pretty Is What Changes, author Jessica Queller describes  how she responded when the bad news of a negative test result that was sprung on her via a phone call at work. She describes shock, anxiety, distraction, bewilderment and denial.  Following the phone call that advised her of the positive test results she received the written report, which she shoved into a drawer and ignored for several months.  At the time, she had no idea about the level of risks associated with testing positive, despite the fact that her mother had both breast and ovarian cancer.  The doctor who tested her did no genetic counseling prior to her test and likewise did nothing to explain the results when he communicated them on the phone.  She was on her own.  Fortunately she is a smart woman who figured much out through her own research and she was smart enough to go in search of doctors who could provide better guidance than the one who performed her test.

I received my results on the phone also but my experience was vastly different as I was tested by a doctor with whom I a had a long relationship and I had hours of counseling prior to even deciding to be tested.  I know now that the best way to communicate genetic test results is by a genetic counselor and in person but at the time, if I had known that my doctor had the results and that he would not tell them to me over the phone I would have been dismayed.

Great book review from a doctor in Lituania

Positive Results is available in many countries and we have blog readers from around the world. The following is a review of our book by a medical geneticist in Lituania on his blog, www.cancer-genetics.com from earlier this month:

Positive book for all with positive results 

An amazing book written by BRCA2 positive cancer survivor and clinical geneticist: “Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer”,which is now in my hands and hungry eyes. 

This is very informative and up-to-date single reference for all (women and men) who are at increased genetic risk due to BRCA1/2 mutations, as well as clinicians dealing with these patients. 

This source I’ll definitely now include in my recommendations for high risk women, along with FORCE and a free gift of Liv Breast Self-Exam Kit kindly provided by Association for Hereditary Cancer (PVAS).

Thanks so much Dr. Janavičius for all you do for the hereditary cancer community and for finding and recommending our book!



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Are we ready for a nuclear accident?

The news out of Japan this week is that the government is getting serious about enforcing its 12 mile evacuation zone around the crippled Fukushima nuclear power plant.  Reporters who have ventured into the zone report that the landscape to be surreal and like time standing still.  80,000 people have been displaced and have no idea when they will be able to return to their homes.  At a minimum it will be another nine months.  But it may be years, if ever.  25 years after Chernobyl, the evacuation zone is still home to nothing more than ghost towns.

Scary.

But what would happen if a US nuclear power plant experienced a disaster similar to that still unfolding in Japan?  This CNN video shows that a disaster near New York would impact millions of people:



View CNN video here.

What are your thoughts about nuclear power now?


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Kickin' Cancer 2011

Last year I celebrated my recovery from preventive surgery to remove my ovaries with a 5K run in the 9th Annual KICKIN’ CANCER! 5K Walk/Run & Women's Healthcare Expo to raise funds and awareness for the early detection and prevention of both ovarian and breast cancer. Last year, our team, Team FORCE raised more than $9,000 for genetic testing and ovarian cancer research.  This year we are getting an earlier start on the 10th Annual Kickin' Cancer Walk/Run.  Our team is now officially launched and we want YOU to join us, regardless of whether you live in Southern California.

One of my first blogs was about the desperate need for increased funding for ovarian cancer research, especially research dollars for early detection of the disease so that it will not continue to claim so many lives. Millions of dollars have been raised for breast cancer research over the past three decades because women, multitudes of women, have joined arms and walked to support this important cause. Progress is being made in breast cancer battle, less so with ovarian cancer.

I have been involved with FORCE, Facing Our Risk of Cancer Empowered, for the past several years. FORCE is a national organization that supports and advocates for women like me, women at high risk for both breast and ovarian cancer. FORCE is a truly wonderful organization that is making a difference in the lives of high-risk women and men (yes, men do get breast cancer too and do carry mutations on BRCA genes). FORCE is partnering with the sponsor of KICKIN’ CANCER, the Lynne Cohen Foundation, to raise money for this important cause and I am the captain of “Team FORCE.”

In addition to funding important research into ovarian cancer early detection and cures, the Lynne Cohen Foundation recognizes that saving lives now means providing genetic testing services and breast and ovarian cancer screening services to women now. Unfortunately, not all women have health insurance that will pay for these services. In response to this need, the Lynne Cohen Foundation has established a network of preventive care clinics at major cancer centers around the country. These preventive care clinics are for women at high risk for breast and ovarian cancer, including women with BRCA mutations, women previously diagnosed with breast or ovarian cancer, relatives of women diagnosed with breast or ovarian cancer, women diagnosed with precancerous conditions that raise future risk of disease, and Ashkenazi Jewish women. One of these preventive care clinics is the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center here in Los Angeles. Women who participate in this clinic receive breast and gynecologic exams and screening; genetic counseling; lifestyle counseling; education about breast and ovarian cancer; and access to the latest early detection and prevention trials for women’s cancers. Genetic testing for BRCA mutations may be appropriate for many of these women but because of the high cost of genetic testing, funds are not always available for this service.

One of the goals of Team FORCE is to make sure that no woman who needs genetic testing for breast and ovarian cancer risk is denied access to this lifesaving information because of cost. For this reason, half of the funds raised by Team FORCE will go to the Lynne Cohen Foundation Preventive Care Clinic for Women’s Cancer’s at USC/Norris Cancer Center to endow a genetic testing fund. The other half of the money raised by Team FORCE will go to FORCE to support ovarian cancer research and awareness.

Did you know:

• Ovarian cancer is the deadliest gynecologic cancer, striking more than 22,000 women in the United States and killing more than 15,000 each year.

• Invasive breast cancer strikes more than 200,000 women in the United States, killing approximately 40,000 each year.

• 20,000 women each year are diagnosed with hereditary breast or ovarian cancer.

Identifying high-risk women makes it possible to screen for the disease and to take preventive action. Currently, the Lynne Cohen Foundation has more than 3,000 diverse women registered in its high-risk preventive care programs nationwide. These unique programs provide women with a comprehensive approach to preventive care, individual risk assessment, and access to the latest clinical/research trials. Data from these programs is collected in the Lynne Cohen Data Registry for collaborative, multi-institutional research.

I believe that this collaboration between FORCE and the Lynne Cohen Foundation is important and well worth the effort. I am particularly proud of the fact that the Foundation has raised more than $6 million to support research and preventive care for the early detection and prevention of ovarian and breast cancer since 1998.

Here is how you can help:

1. Join Team FORCE and come out on September 18th and walk (or run) with me! To join visit www.kickincancer.com, select “Register Here,” select “Join a Team” then from the drop down menu at the bottom of the box select “Team FORCE.” OR click on "Join Our Team" from the Team FORCE page.  Be sure to enter the discount code “force” on the individual registration page and you will receive a $5 discount on registration for the event.

OR

2. Sponsor me or another participant on TEAM FORCE! To donate online, visit the Team FORCE page, pick a team member and you can donate to them from their individual page. Checks made payable to KICKIN’ CANCER! can be mailed to P.O. Box 7128, Santa Monica, CA 90406-7128. Please include the name of the Team FORCE member in the memo line of your check. Donations are tax deductible as provided by law.

OR

3. Become a virtual runner.  You can join our team as a virtual runner, raise money for our team, and show your support for the cause no matter where you are in the country.  You can run a 5K with your friends wherever you are and send us the photos to post on our LA FORCE page!


Thank you for considering this request for support. If you have any questions about the Lynne Cohen Foundation, please visit www.lynnecohenfoundation.org, call 877.OVARY.11, or email info@lcfocr.org. For information about FORCE please visit www.facingourrisk.org.


Thank you for supporting women's cancer research!

Sincerely,
Joi



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Why go to the FORCE Conference?

Check out this moving video from last year's Joining FORCEs Conference on why you should consider going this year. Take is from us (we have been!) there is nothing anywhere else that matches this conference for the breadth of information for high-risk women and men, the access to the top experts from around the world AND the ability to connect with other women in your shoes. If you can do it, you should go!  To register, click here.

2011 Joining FORCEs Conference

June 23-25, 2011

Orlando, Florida

Dr. Gordon tackles tough questions

This past Sunday was the LA screening of Joanna Rudnick's film In the Family at the Disney Studios in Burbank.  The screening was followed by a panel discussion with Joanna, Dr. Ora Gordon and Anya Prince, JD, a genetic discrimination expert with the Cancer Legal Resource Center.

This screening was attended by nearly 100 people, most of whom had not seen the movie before.  The film -- a moving documentary about a BRCA-positive woman who struggles with managing her risk while encountering a variety of women (and men) struggling with risk or cancer -- generated lots of questions for our very able panel.  The toughest questions went to Dr. Gordon, who handled them with her usual expertise, grace and occasional humor.  I have seen Dr. Gordon speak and field questions in the past and am continually awed by the breadth of her knowledge and her compassion in dealing with individuals facing difficult choices.

I want to share with you a few of the questions that came out of Sunday's post-screening discussion:

• How does preimplantation genetic diagnosis -- genetic testing of an in vitro embryo -- affect the embryo or the child?
• What is the average age of ovarian cancer diagnosis for BRCA1 carriers?
• Is having annual mammograms since age 35 sufficient for surveillance if you have not been tested for a BRCA mutation?
• Is there a way to find out if someone who died 25 years ago was a BRCA mutation carrier?
• How can I get my older brother to test?
• What percentage of ovarian cancer cases are the result of BRCA mutations?
• Aside from surveillance such as MRIs, mammograms and CA-125, what can someone do to try to prevent cancer aside from surgery?
• When do you recommend BART testing?
• If my family has a BRCA2 mutation but I test negative, what's my cancer risk?
• Do the chance of developing cancer increase or decrease with age both for BRCA-positive women and non-BRCA women?
• Does pregnancy increase or decrease the risk of breast or ovarian cancer?

These questions are similar to the questions Dr. Gordon is asked virtually every time she speaks to a group and are among the questions she answers every day for her patients. These questions, and many others like them are part of the reason why we wrote Positive Results.  Positive Results answers all of these questions, and many, many more.  At one point in the evening Dr. Gordon said in response to a question "Read our book!"  And while that elicited laughter because of her tone, it is true.  Positive Results was written to be a comprehensive resource, it has an excellent index to make accessing the information in its pages easy and convenient.  Use it and not only will it will answer many of your questions, you will be much better prepared when you meet with your doctor.

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How

We love the poem "How" from Martha Haley, which she read in the film In the Family (this is an abbreviation):

How can I fight you, when you insist on sneaking up on me?
How can I hide from you, for everywhere I go you try to find me?
How can I see myself as a "woman" when you insist upon disfiguring me?
How can I look at my daughter, sister and friend and wonder are you going to hurt them also.
How can I walk straight, when you try to ripple through my bones?

I can because even though you sneak up on me, I know your there, that's why the fight isn't over.
And I can still see myself as a woman, "Because" it's not what you have done that defines my "Womanhood."
I am a "Woman" by God's Creation only and no one can take that away.
...because there's one thing you can't take from me and that's the ability to be a "Survivor."

The full poem and a photo of Martha can be found here.  More information about Martha's work to support and educate the black community about the risks for breast cancer can be found here.

Dr. Oz agrees

In one of my first blogs I mused over the radiation exposure from new airport screening devices, specifically backscatter scanners, which use x-rays to "see" under our clothing to determine if we are carrying anything dangerous.  My blog was written before the broad roll out of this technology, which resulted in waves of objections based on privacy concerns as well as concerns over the radiation exposure caused by the scans.  Privacy rights groups have sued to stop what they call excessive invasion of privacy caused by these scans.  Congress has begun hearings to address the issues of both privacy and health risks from radiation exposure.  From a technological standpoint, the privacy issue is the easier one to address.  Experts believe that software can be developed so that what the monitors show is not the individual's actual body but an avatar of a generic body with any problem points identified for further search.  Even once this is done the radiation exposure will still be an issue for many of us, especially as unlike medical devices that use radiation, the FDA does not monitor or test these devises for safety.

In the wake of the Japanese nuclear disaster the amount of radiation involved in airport scanners seems miniscule.  And it is.  But that does not mean that it is totally harmless.  A variety of medical experts have questioned the safety of these devices, although it is safe to say the experts on not in agreement on this one.  Dr. Oz has chimed in with a position in line with the one I expressed in my previous blog.  Namely, Dr. Oz thinks:

[T]he health risk posed by these scanners is very minor, although populations that are more sensitive to radiation may want to opt for the pat-down instead. These include travelers over 65 (the body's cells are less able to repair DNA damage as you age), women with BRCA-1 or BRCA-2 gene mutations, cancer patients, pregnant women, and children. (emphasis added)

Radiation expert Dr. David Brenner of Columbia University made what I think is the most clear case for the risk:

"A good analogy ... is that it's like a lottery. You buy a ticket, and the chances of winning are minuscule -- but that doesn't mean no one will win the lottery."

"So we won't know who it is who gets these radiation-induced cancers, but it's going to be someone."

The risk that these scanners may cause cancer may be so low as to be unimportant to some people, like those making the decisions to use them. But if you are the one who gets cancer, the perspective is entirely different.

I don't want it to be me.

Radiation anyone?

Beachgoers near San Diego with the San Onofre
power plant in the background

News coverage of the potential risks of radiation exposure is omnipresent these days thanks mostly to the ongoing nuclear disaster in Japan.  For those of us who are not nuclear or radiation experts (and yes, that includes me), sorting through the news reports to determine what is hype versus what is real risk for us and our families is far more difficult.  I admit that I know just enough about the dangers of radiation exposure to be frightened by most any news report. Perhaps that comes from growing up in the shadow of the cold war.  Today disaster preparedness at my children's schools involves preparing for an earthquake.  When I was a child we prepared for a different disaster, potential nuclear war, by knowing the  route to the nearest fallout shelter.  After witnessing the Japanese earthquake that has turned into a nuclear disaster perhaps we should prepare for both.  Especially if, like me, we live on or near an earthquake fault line and also near a nuclear reactor.

Interestingly, the Federal Emergency Management Agency's Ready.gov website has zero information on preparing for a nuclear meltdown disaster such as Japan is currently experiencing even though there are more than 100 operating commercial nuclear power reactors in the United States.  Political pressure is on  now though to get the government to examine the safety of our nuclear power supply in the event of a natural disaster such as Japan's earthquake and tsunami, nowhere more so than in California, with its multiple earthquake fault lines and two operating nuclear power plants.  As reported in today's Los Angeles Times:

An open letter to my breasts

The following is a guest blog from my friend Jackie:

Five years ago, I hated you. I couldn’t wait to get rid of you and never, ever look back. You had betrayed me. You betrayed my whole family.

I stood there, exposing you for who you were, as the doctor ran a marker over you and explained where he’d cut right into you, taking you off my body. The lump you created would be sent to pathology and the remaining tissue, instead of destroying it (and how I wanted you destroyed), would be donated to research, and maybe even help someone else on the same path one day, betrayed by her own breasts.

I remember glancing at you with disgust that day, you looked so pathetic. You too-closely resembled tube socks filled with sand after breastfeeding two babies. I couldn’t help but think back to the days before kids when I really loved you and actually considered you one of my better physical assets. Now, not only were you ugly, you were trying to tear me down.

I’m so sorry. Because of my anger and fear, I never even said goodbye. I was so caught up in the chaos of the situation -- one minute, I was having blood drawn to see if I carried the same genetic mutation my mom had... the next, I was having an MRI just to be safe. It was only two weeks later, five years ago on this very date, I was being wheeled into surgery to have you replaced with a less realistic replica. With two kids and a husband to fight for, I never even had the chance to stop and mourn your loss.

And a great loss, you were. Because it was you who nourished my boys, working to provide them with what they needed every three hours, even while the rest of me dosed off. It was you who taught me some tough lessons about men, that even though some may have been interested in you, it didn’t mean they were truly interested in me. I can hardly remember a time before you, you were like the one constant that grew up with me -- literally -- and even got bigger when I’d gain weight, smaller when I’d lose it again. You were fun to dress up and take on the town -- you even got me to the front of the line once or twice.

But you’re gone now.

I don’t mean to hurt your feelings but I really don’t think of you the other 364 days of the year. Because not only did losing you also rid me of the fear that I would lose the breast cancer battle in my 30‘s, like my mom did, I was also given a new appreciation for life -- and myself. It’s true, I sometimes look at my body, what I call the human pin cushion, with frustration and disappointment (I am a girl, you know), but sacrificing you has given me more than it could ever take away. I’m empowered to make tough decisions, confident that I’m strong enough to handle almost anything and actually feel more womanly than ever before -- something I think all women should have in their lives.

But after five years apart, I will admit that your replacement still doesn’t (and probably never will) feel as close to me as you did. But they’re perky, allow me to explore new clothing styles and have promised me that I’ll never, ever require duct tape to keep them from flopping around while working out.

If I never write you again, please understand. It’s not that I don’t love and appreciate all you’ve done for me, but it’s time to move on to a new chapter of my story, one that involves love, laughter, health and happiness -- something I could never have achieved without my experience with you.

From the bottom of my heart, I thank you for that.

From The Silver Whining.  To see more of Jackie's story click here.

 

The tipping point

I am a fan of Malcom Gladwell's book The Tipping Point: How Little Things Can Make a Big Difference.  Several years ago I saw him speak at UCLA and both the book and the talk made me realize the small thinks in my life that have formed tipping points for future bigger events.  

One of those things was a walk with my friend Susan in 2005.  Susan was diagnosed with breast cancer in 2003 and the young age of 38.  We met when our oldest sons entered kindergarten together many years ago and have been friends since.  Our homes are a few blocks apart and we often walk to the beach in the mornings after taking the kids to school.  Back in 2005, we also often walked together to pick the kids up from elementary school.  On one stereotypically beautiful sunny warm Southern California day we met up on our way to pick up the kids from school.  I had just come from an appointment with my gynecologist where he had again encouraged me to consider testing for the BRCA genes.  I was deeply troubled by the potential consequences of testing in terms of handling the knowledge and the possibility that preventive surgery might be necessary so I turned to my friend for her advice.

Susan and I share many things in common: we both have two sons, similar in age and our older boys have been in the same class many years; and both of our mothers were diagnosed with breast cancer in their early 40s.  Unlike my mom, however, who is a long term survivor, Susan's mom did not survive her encounter with the disease.  When Susan was diagnosed with cancer her children were roughly three and six and her diagnosis plunged her into fear of leaving her children motherless.  She nonetheless bravely battled through surgery, chemo, and radiation and two years later was again the picture of health.

I told her about my conversation with my doctor as we walked to school and about his recommendation that I test for the BRCA genes.  I told her about my conflicting emotions about testing and asked what she would do were she me.  Her response was unequivocal.  She said she absolutely would have done genetic testing before her breast cancer diagnosis if it had been presented to her as an option.  She would have given anything to have been able to do something to prevent her disease or at least to have some forewarning of it.

"Do it." she said.

My memory of this conversation is more clear than is Susan's, perhaps because the conversation was a tipping point in my thinking I think BRCA testing.  I didn't test immediately but this conversation tipped me from "How can I do this?" to "I CAN do this!" I have handled the truth and become empowered by it and now I advocate on behalf of other women similarly situated.

I am strong:

• I have removed my breasts to reduce my breast cancer risk; 
• I have reconstructed by breasts to look and feel whole again; 
• I have removed my ovaries and fallopian tubes to reduce my ovarian cancer risk; 
• I am managing surgical menopause with humor if not always grace; 
• I have become an outreach coordinator for FORCE, Facing Our Risk of Cancer Empowered; 
• I have talked to hundreds of women in person and on the phone in an effort comfort, educate, and empower them and I have been told by some of them that I have been the tipping point in their lives;
• I have become an author: I teamed up with Dr. Ora Gordon to write Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer because there was no book out there for women like me.

I would have done none of this had it not been for Susan.

Thank goodness for friends.

"Life is partly what we make it, 

and partly what it is made by the friends whom we choose." 

 ~ Tehyi Hsie

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Women CAN Handle the Truth–About Cancer OR Alzheimer’s

Joi is again featured on the Ms. Magazine Blog:

The BRCA genes were discovered in 1994 and 1995, but when you visited your doctor anytime from 1995 through the early 2000s, chances are that she or he did not recommend that you test for a mutation on the genes that would indicate an increased chance of developing ovarian or breast cancers. Why not? Because the paternalistic feeling of much of the medical community was that women who might be carriers of mutations couldn’t handle knowing their risk.

In fact, in 1998, an esteemed panel of experts convened a conference at Stanford University to decide what to do with the newfound ability to test for these genes. Their conclusion? Genetic testing for BRCA1 and BRCA2:

… is not appropriate for widespread clinical use or population screening, but may be beneficial in some circumstances–for example, in families experiencing multiple cases of cancer. Testing would raise fewer problems if definitive preventive interventions were available for those with the mutations, and if society better protected people with genetic risk of cancer.

Some doctors went so far as to test women for BRCA mutations but then refused to tell them the results because they thought the knowledge would be harmful. Other experts at that time concluded: “There are no known methods for preventing breast or ovarian cancer that would be particularly important to women with versions of these genes.” Essentially, doctors were throwing up their hands and saying they didn’t have any good options, so foreknowledge could be a dangerous thing.

Fortunately, times have changed. Medical experts now agree that genetic testing for BRCA genetic mutations can save lives, and that interventions are available. And the feared psychological harms have not materialized. Numerous studies of at-risk women have been conducted over the past decade and the consensus is: Women can handle the truth! Studies of individuals receiving such genetic information suggest that those who do not carry “at-risk” genotypes derive psychological benefits, while those identified as at risk show no adverse effects, according to a 2009 study in the British Journal of Psychiatry.

Does this mean there are no psychological impacts from genetic testing and discovering you are at genetically high risk for cancer? No. Learning you are at high risk for cancer causes stress, no doubt. The women profiled in the book Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer candidly discuss the emotional toll of knowing about a BRCA mutation. But they also show how this knowledge can be empowering by allowing them to escape the cancers that have stricken other members of their family. Read more


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Los Angeles In the Family screening

Please join us for a very special screening of

In The Family

with filmmaker Joanna Rudnick, who is expecting her first child

Presented by

FORCE: Facing Our Risk of Cancer Empowered

DATE: March 27, 2011

TIME: 3:30 p.m. to 6:30 p.m.

LOCATION: Disney Studios

Burbank, CA

$10 suggested donation

RSVP to Linee or Joi for a map and directions

The screening will be followed by a panel discussion including:

Joanna Rudnick, In the Family filmmaker

Ora Karp Gordon, M.D., M.S.

Director, GenRISK Adult Genetics Program

Medical Genetics Institute

Cedars-Sinai Medical Center

Director, Cancer Genetics

Disney Family Foundation Cancer Center

Providence St. Joseph Hospital

Associate Professor of Medicine

Geffen School of Medicine at UCLA

and

Anya Prince, J.D., attorney with the Cancer Legal Resource Center

specializing in genetic discrimination issues

In the Family is a documentary film about predicting breast and ovarian cancer, the consequences of knowing, and the women who live with the risk. Beginning with her story of testing positive for the familial breast cancer mutation (BRCA), Filmmaker Joanna Rudnick chronicles the lives of several women currently undergoing the process of genetic testing -- following them from their decision to seek testing, through the testing process, and in the aftermath when they are coming to terms with the information they receive. These stories of the first generation of women to live with the knowledge that they are predisposed to a life-threatening disease will teach us what it means to survive a diagnosis of high risk without being consumed or defined by it. They will help us to understand the psychological, legal, ethical, cultural and social complexities of genetic testing for a mutation, which affects the entire family, for which there is no cure, and wherein the only treatments currently available involve enormous quality-of-life sacrifices.

Info about breast cancer in men

Men with BRCA mutations, especially men with BRCA2 mutations are at significantly increased risk for breast cancer when compared with other men.  Because only one percent of all breast cancers occur in men, it is often thought of as a woman's disease, perhaps even more so because the breast cancer logo is pink.

But men do get breast cancer and the disease can be particularly devastating for men because it is often diagnosed at a later stage.  Early diagnosis requires men to be aware of changes on their chests and can lead to successful treatment for breast cancer.  A number of organizations are seeking to raise awareness of the potential for men to develop breast cancer and to provide information to me about this disease, including His Breast Cancer Awareness.

Another great organization with support and information specifically for men is the John W. Nick Foundation which sponsors the MaleBreastCancer.org website.  As their logo says "men get breast cancer too!"  If your family has a known BRCA mutation, the men you love should be directed to these sites and should speak with a certified genetic counselor or medical geneticist about their risk.

Why go to the FORCE Annual conference?

The Joining FORCEs conference is an annual forum on hereditary breast and ovarian cancer. We welcome anyone concerned about hereditary cancer: cancer survivors, high-risk individuals, those with a BRCA mutation or family history of cancer, and health care providers who treat high-risk patients.

This year the Joining FORCEs 2011 conference will be held June 23-25, 2011 in Orlando, FL at the Hyatt Regency Grand Cypress. Please consider going. It will be the best and most informative three days you could possibly spend.

Silver linings

We often focus on the negative effects of surgical menopause to reduce ovarian cancer risk: the hot flashes,  the sexual side effects, dry skin etc.  But today I thought I would put together a list of the positive side of removing my ovaries.  Here is my list of the things that are great about no longer having ovaries:

1. No more fear of ovarian cancer.
2. No more periods, period.
3. No more anxiety from ovulation cysts that show up on my screening ultrasounds that result in repeated trips to the doctor and sleepless nights.
4. No more cyclical bloating and weight gain.
5. No more PMS.
6. No more yeast infections (so far!).

I was hoping to come up with a list of ten, but so far this is all that comes to mind.  Please add to the list with your own.  We spend so much time focusing on the negative that I think an attitude of gratitude can be found by a little focus on the positive.

Joi

This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.

Happy anniversary Positive Results!

Today is the one year anniversary of the release of Positive Results!

A lot has happened in the the past year and we would like to take this opportunity to give both a quick review of the highlights of the year and to say a heartfelt thank you to all who have supported us, all who have purchased Positive Results, all who have recommended it to their friends and doctors, all who have sent us emails of appreciation, all who have written reviews, and all who have joined us on Facebook and on this blog.

Highlights from the past year include several studies that assess the risk of breast cancer after prophylactic mastectomy in BRCA-positive women, including:

• A March 2010 study in the Annals of Surgery, which concludes that prophylactic mastectomy "is highly effective in preventing invasive breast cancer in BRCA1/2 mutation carriers. Since the remaining risk is less than 0.2%/woman-year, continued surveillance of the asymptomatic carriers is not warranted."
• In contrast to this finding was a Danish study published in January 2011 the journal Clinical Genetics, which finds that post mastectomy breast cancer risk in BRCA carriers might be higher than previously thought and further surveillance of carriers after mastectomy might be needed.  We blogged about this study here.
• However, the largest study to date, published in September in the Journal of the American Medical Association found that prophylactic mastectomy was highly effective at reducing future breast cancer risk and in fact none of the women in this study who had prophylactic mastectomies went on to develop breast cancer.  We blogged about this study here and here and in fact our September 1, 2010 blog about this study remains our most popular blog post ever.

Other highlights from this past year include:

• April 2010: 
• Library Journal published a glowing review of Positive Results concluding: "VERDICT Morris's story and that of other women and men highlight the difficult choices involved. Full of practical advice, this book will be a boon to those at risk for breast cancer as well as their caregivers."
• San Francisco Book Review published a review that concluded: "Women with breast or ovarian cancer, their doctors and caregivers, and each and every single one of their family and friends — should all read this book."
  
• April 2010: A study about risk reducing bilateral salpino oophorectomy was published in the journal Gynecologic Oncology, which found this procedure may frequently leave behind small amounts of fallopian tube tissue, although what that means for future fallopian tube/ovarian cancer risk is unclear.  We blogged about this study here.
  
• June 2010: Dr. Gordon spoke at a session at the 5th Annual Joining FORCEs Conference.
  
• August 2010: Joi had surgery to remove her ovaries and her post Adios Ovaries remains one of our most popular posts.  She has done seven posts about her surgery, recovery and surgical menopause to share her story with others.
  
• September 2010: The creation of National Hereditary Breast and Ovarian Cancer Week and National Previvor Day.
  
• October 2010: 
• Dr. Gordon appeared on CNN in conjunction with Breast Cancer Awareness month.
• Dr. Gordon spoke about genetic discrimination at the 10th Annual Women's Health Conference in Pasadena, California.
• February 2011: Ms. Magazine published an article by Joi about genetic testing on their Ms. Magazine Blog.

In addition, a number of studies have been published about hormone replacement therapy and breast cancer risk.  None of these studies, however, have been in BRCA-positive women and therefore have done little to advance the knowledge base for managing surgical menopause and breast cancer risk for these women.

We look forward to sharing another eventful year with you.

Joi & Ora

Metastatic hereditary breast cancer research

For those of you who have been to a FORCE LA Outreach meeting you have heard me talk about the importance of participating in research studies so that we will have better answers in the future for those facing hereditary breast and ovarian cancer.  I feel strongly that our daughters and granddaughters will only have the information we need if we participate in research studies.

Metastatic breast cancer is a devastating disease and has taken the lives of too many women I know in the past few years.  40,000 women a year die of metastatic breast cancer each year.

For me, one of the names included in the mind-numbing statistic is Julie Ann Carpenter, a beautiful and vibrant woman my age to whom Positive Results is dedicated because she believed that information is power and because she desperately wished she had known about BRCA before breast cancer came knocking at her door. I remember the day she sat on the sofa in my living room and said "I have mets." I was shocked. We had just finished a workout and Julie looked to be the picture of health. She certainly did everything in her power to beat the disease, trying a succession of treatments, including experimental treatments as part of clinical trials. Some of these treatments bought her many months apparently disease free and looking as healthy as she did the day she told me her cancer was metastatic. In some cases she had more than a year of good health and time with her family and friends. Nonetheless, this relentless disease eventually took her life.

Researchers believe that BRCA and other hereditary metastatic breast cancers may respond differently to treatment than other breast cancers. The first step in determining the course of future research is to survey women with hereditary metastatic breast cancer about their treatment and response to treatment.  FORCE is participating in this research and so should you.  If you or someone you know has metastatic hereditary breast cancer please ask them to complete the survey at the following link.  It will only take a few minutes.  

https://www.surveymonkey.com/s/BTZQSJV

Creating a safe space to talk about cancer risk

Sue Friedman, founder of FORCE, Facing Our Risk of Cancer Empowered, talks about surviving breast cancer, and how it led her to create a resource for at risk women to learn, ask questions and share their stories. After learning about her BRCA status, she became appalled at the preponderance of misinformation and at the lack of support available for those with hereditary cancer or hereditary cancer risk. Sue took action so that no one would have to face these risks and fears alone.

FORCE's mission is to provide support, education and advocacy for families facing hereditary breast and ovarian cancer. The annual Joining FORCEs Conference is June 23-25, 2011 in Orlando, Florida.

Video courtesy of What's Your Calling?
Interview & Camera by Rachel Pikelny / Editing by Neco Turkienicz / Produced by Rachel Pikelny

Breast cancer after prophylactic mastectomy?

“You have breast cancer” are the last words any woman wants to hear. But women facing hereditary breast and ovarian cancer risk who opt for prophylactic mastectomies hope never to hear these words. Avoiding breast cancer is why these women take dramatic action to reduce risk. So when a new study comes out that may indicate that residual breast cancer risk is higher than previously thought, alarm bells start sounding in the high-risk community. The journal Clinical Genetics did publish such a study recently. This study, entitled Breast cancer after bilateral risk-reducing mastectomy is based on research out of Denmark involving 307 BRCA-positive women, 96 of whom chose to have prophylactic bilateral mastectomies to reduce their risk.

On one level, the study’s finding are concerning. Three of the 96 women developed breast cancer 2 years, 5 years, and 7 years after prophylactic mastectomy respectively. All of these women were BRCA1 positive and all of the cancers were triple negative. These numbers led the researchers to alarming conclusion that the breast cancer risk after preventive mastectomy for BRCA-positive women is roughly 10 percent, almost the same level of risk as the average risk women.

It is easy to panic when confronted with this conclusion but a closer look at the study, its assumptions, and other studies of breast cancer risk after prophylactic mastectomy are necessary to gain some perspective on the issue. It is dangerous to focus exclusively on any one study, especially when it has a relatively small sample size.

We are in early days for the results of studies that estimate the residual breast cancer risk of BRCA-positive women after prophylactic mastectomies with only a handful of studies having been published thus far. The largest study to date involving 2482 BRCA-positive women analyzed the effect of both prophylactic mastectomy and prophylactic bilateral salpino oophorectomy on future cancer risk.  This study, entitled Association of Risk-Reducing Surgery in BRCA1 and BRCA2 Mutation Carriers With Cancer Risk and Mortality, was published in the Journal of the American Medical association September 1, 2010 and we blogged about it in our post Beyond the headlines: Prophylactic surgery reduces cancer risk and saves lives. Interestingly, in this study 247 women chose to have prophylactic mastectomies and none of them developed breast cancer, which resulted in the conclusion that prophylactic mastectomies are highly effective at reducing breast cancer risk in BRCA1 and BRCA2-positive women. BUT the study made no attempt to statistically quantify the remaining breast cancer risk because such a calculation was not possible given no breast cancer events in the preventive mastectomy group.

A 2004 U.S. study had results more similar to the Danish study. It involved 483 BRCA-positive women 105 of whom chose prophylactic mastectomies. Two women in this study developed breast cancer after preventive mastectomies, one was diagnosed with breast cancer in her lymph nodes less than 2 years after her preventive mastectomies and the other was diagnosed with breast cancer 9 years later in what was described as "significant residual right breast tissue" that had been left after the prophylactic mastectomies.

Statistical analysis of risk reduction in these studies is complex business involving a discipline called biostatistics.  In calculating the final residual risk number the statistical analysis involves a number of assumptions and complex calculations involving the raw data. Changes in any of the assumptions will change the end result and may account for why the Danish study resulted in a seemingly large residual risk analysis.  We leave the statistical analysis to the mathematicians but raise this as one thing to consider when confronted with a study conclusion that seems alarming.

Unfortunately, more years of follow-up and more published studies are needed before the experts will have a good handle on the amount of breast cancer risk that remains after preventive mastectomies.

What lessons can be learned from the research so far?

While the conclusion from this new Danish study should probably be taken with a grain of salt, it nonetheless raises issues that women should discuss with their doctors and one thing is clear: prophylactic mastectomy does not totally eliminate breast cancer risk.

Another thing that comes through from the studies to date is the suggestion that the residual risk is directly affected by the amount of breast tissue left by the breast surgeon performing the surgery. In the 2004 U.S. study, both of the post-mastectomy breast cancers occurred after subcutaneous mastectomies, which generally leave behind a greater amount of breast tissue than does a simple mastectomy. In the Danish study all three of the women who developed cancer had simple mastectomies but the study authors nonetheless placed most of the blame on breast tissue that should have been removed. One of the three breast cancers occurred two years after the mastectomies and was already metastatic with a small tumor in the residual breast tissue that the breast surgeon had not removed in the axilla (under the arm). The study authors speculated that because of the presentation it was likely that the cancer either had been present at the time of the prophylactic mastectomies but was not found by the pathologist or that it subsequently developed in the breast tissue under the arm that had not been removed. The study authors concluded that “inadequate surgery” was the probable cause of the other two post-mastectomy cancers.

On the other hand, the 2010 JAMA study authors noted that their “observation of no prospectively identified breast cancer cases may be due to biases in prior retrospective studies or to improved surgical techniques.” Further studies will hopefully determine whether surgical technique and/or skill of the breast surgeon play a role in residual risk. The studies to date suggest that maximum risk reduction likely comes from high-risk women being treated by highly-skilled specialists who remove the maximum amount of breast tissue. If this proves to be true, women considering prophylactic mastectomies may need to choose their breast surgeon even more carefully than they choose their reconstructive surgeon.



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