Thursday, September 30, 2010

Ms. Magazine Blog on HBOC Week

The Ms. Magazine Blog published an article by Joi about HBOC Week today:

Did You Know It's Hereditary Breast and Ovarian Cancer Week?

Our thanks to Ms. Magazine for helping spread the word!

Wednesday, September 29, 2010

Previvor Day

Today is the first National Previvor Day.  I am a previvor so it must be my day right?  Wrong.  This day is not for me, or even about me.  If you read my last blog you know that this day is, in my opinion, for saving lives.  The life you save may belong to your daughter's soccer coach, or your son's freind's mother.  Or perhaps your child's fifth grade teacher.

We are mid way through National Hereditary Breast and Ovarian Cancer Week and despite the hundreds of press releases sent out by FORCE, Facing Our Risk Of Cancer Empowered, our national day in the sun had yet to garner any national media coverage.  And it is not for lack of effort on my part.  I have hounded more editors and producers in the past two weeks than at any time in my life.  They may not cover it, but there are many more media outlets out there who know about HBOC week.

So if the mainstream media is not covering HBOC Week and Previvor Day what do we do?  We continue to do what we have always done, talk to our friends and tell them about  our experiences.  Doing so is the start of conversations that will lead to women we care about becoming more informed and considering their breast and ovarian cancer risk.  One of the conversations I had some time ago went something like this:

"I heard you wrote a book."

"Yes, but is is not a lighthearted romp; it is a book about hereditary breast and ovarian cancer."

"My mom died of ovarian cancer.  But I have always chosen to stick my head in the sand, I just don't want to know my risk."

Now I have to admit that at this point the conversation became decidedly awkward.  I am a big advocate of genetic testing and of taking preventive action to preserve health.  But I am also a big believer that everyone must choose their own path in life and that what might be right for me might not be right for someone else.  I chose to tell this acquaintance the truth:

"My mother had breast cancer and I spent a lot of years avoiding genetic testing because I was not sure I was ready to deal with the information.  Now I am really happy I did but you have to do what is right for you.  If you have any questions I am happy to talk with you any time."

That was the end of the conversation.  I don't know if she has ever cracked the cover of Positive Results, although there is a copy where she works so I know it is available to her.  We have not talked about this issue in any of our more recent encounters.  But that is fine, she knows the information is available to her.

The bottom line is that we are increasing awareness one woman at a time.  I consider that a good start.  Next year, maybe more.

Monday, September 27, 2010

National Hereditary Breast & Ovarian Cancer Week is here!

This week is the first ever National Hereditary Breast and Ovarian Cancer (HBOC) Week.  Why have you not heard?  Likely because Congress did not act to declare this week National HBOC week until September 15th, which did give much time for getting out the word.  Nonetheless, FORCE, Facing Our Risk of Cancer Empowered, has made heroic efforts to let everyone know about this important event through their Raise Your Voice campaign. 

Why do we need HBOC Week?  Every month is an awareness month for something, indeed September is already turning teal for Ovarian Cancer Awareness Month and October is awash in pink for Breast Cancer Awareness Month.  Why do we need more awareness of these diseases?  Isn't this enough? 

For me and for thousands of women like me, the answer is no, it is not enough.  And this is not because we seek to be honored or feel any swell of pride from this national recognition.  Rather it is because we are sick and tired of watching our friends and relatives battle and often die of these diseases when they could have been prevented through the gift of genetic knowledge.  I have watched as breast cancer relentlessly claimed the life of a friend who had never heard the term BRCA until after her breast cancer was terminal.  Even then she did not give up hope, she battled bravely and hard for nearly four years, but in the end, it was the lack of knowledge of her genetic condition that took her life.  Had she known that her mother's breast cancer could also be her fate she could have started surveillance earlier.  Had she known at the time of her first breast cancer diagnosis that her cancer was the aggressive hereditary form of the disease she could have attacked it with chemotherapy rather than just a lumpectomy and radiation.  It was not until the cancer had spread to her vital organs that any doctor ever mentioned genetic testing or the BRCA genes to her.  The medical profession failed her on many levels:  no doctor ever looked at her family history and mentioned genetic testing to her; no breast specialist or oncologist ever mentioned genetic testing to her when she was diagnosed with breast cancer in her early 40s; no doctor ever mentioned to her that triple negative breast cancer in a young women with a family history of breast cancer is more likely to be genetically linked and need more aggressive treatment.  Had she had the gift of knowledge at any of these junctures she might still be here today, walking with me on the beach as we often used to do.  But she didn't.  When she did find out she had a BRCA mutation and learned that mastectomy prevents additional cancers in BRCA-positive women, she consulted surgeons about removing her breasts.  Instead of reassurance, she was told that it was like "shutting the barn door after the horses have already been let out."  Her breast cancer was in her vital organs; removing her breasts would not preserve her life.

So HBOC week is not for me, nor for the few thousand women and men who already know they are carriers of BRCA mutations that put them at high risk.  HBOC week is for the hundreds of thousands of women and men who do not know they are at high risk.  It is for the hundreds of thousands of women whose doctors will never look at their family history and start a discussion about genetic testing.  Those of us who do know need to shout from the rooftops, not for ourselves, but for those whose lives can only be saved by knowing they are at risk.

HBOC Week is opportunity knocking.  It is time that we all raise our voices.

Tuesday, September 21, 2010

1 a Minute

1 a Minute is docudrama that follows a woman's journey through breast cancer. At each stage of her journey, the celebrity stars of the film (survivors from around the world; or those affected closely by it), jump in and recount their experiences at that point in time.  The film also includes breast cancer experts and our own Dr. Ora Gordon is among them discussing hereditary breast cancer and genetic testing.  1 a Minute will be shown at theaters nationwide on one night, October 6, 2010 to raise money for a cure with all proceeds going to Susan G. Komen for the Cure.  The evening promises to be a memorable one.  Check it out.

Monday, September 20, 2010

Maximizing Your Breast Cancer Screening: What Women Should Know

There are a variety of screening tools available for women for screening for breast cancer. Dr. Ora Gordon will provide a free Community Education Lecture sponsored by the Wasserman Breast Cancer Risk Reduction Program at Cedars-Sinai Medical Center.

Dr. Gordon will provide vital information to help clarify what are the appropriate screening recommendations for you.

Thalians Auditorium
8730 Alden Drive
Los Angeles, CA 90048
Free Parking Lot P2 (entrance on George Burns

For more information or reservations call (310) 423-9373.

Sunday, September 19, 2010

Kickin' into high gear for Kickin' Cancer

At 9 a.m. the starting shot sounded and 2,000 bodies pressed forward.  Those at the front of the pack were off to a fast start on this sunny and mild day in Los Angeles.  Those of us in the middle of the pack were off to a decidedly slower but no less enthusiastic start as the music blared and the crowd cheered.

Today was the 9th annual Lynne Cohen Foundation Kickin' Cancer 5K run/walk and the entirety of Team FORCE, me included, was in the middle of the pack where it took at least a minute and quite possibly several minutes to even cross the starting line.  It has been more than 20 years since I have run in such an event with so many runners.  The last time I ran this type of event I was 20 years younger and running 6 days  a week.  This time I am not only older, which clearly has changed my running immeasurably, but I am also a mere 6 weeks post-op and not fully back into shape.  For the first 4 weeks after my BSO and hysterectomy my only exercise was walking, slowly at first then gradually increasing to a normal pace and for longer periods of time.  Two weeks ago I began adding a little very slow jogging to my walks, starting with only half a mile or so at the end of a walk.  Just more than a week ago I realized that if I was actually going to attempt running (jogging actually) this 5K then I was going need to kick my workouts into high gear so to speak.  In the past 9 days I have either run or been to the gym 7 times with three runs that were at least three miles.  These runs were not nearly as easy as I had hoped but I did know that I could compete the course, provided I didn't start too fast and run out of steam.


Team FORCE had 21 members and raised more than $8,500 to support FORCE and the Lynne Cohen Foundation in their work to enable under served women to have access to genetic testing and to find a cure for ovarian cancer.  My FORCE sister Robin graciously agreed to run with me and the rest of Team FORCE was composed of walkers.  Robin and I got off to a slow start because of our location in the middle of the crowd but within the first half mile we found a comfortable pace and the crowed thinned.  Robin only ran with me so that I would not be running alone, as she said she has not run in "a long, long time" (she only bikes).  It became clear to me within the first mile, however, that Robin is in far better aerobic shape than am I.  At the half way point I was breathing hard and having difficulty with our ongoing conversation, although the pace was still comfortable.  Robin seemed to have not broken a sweat and was not breathing hard at all.  When I told her it was clear that even though she claimed to no longer be a runner, she was in far better shape than I am she graciously reminded me that it has been 10 months since her most recent surgery, whereas it has only been 6 weeks for me. 

We did complete the 3.2 mile course without stopping (I did slow down a bit in the 3rd mile) and crossed the finish line in under 30 minutes.  Neither of us knows how long it took us to cross the start line after the official start of the race but we are assuming it was about 2 minutes, thereby making our time about 28ish minutes.  Considering my age, my recent surgery, and my lack of "training," I am quite proud of that time.  Next year, maybe I will do better.  But for today, I could not be happier with my own efforts and more importantly, with the outstanding fund raising work done by Team FORCE for this important cause!

Wednesday, September 15, 2010

National Hereditary Breast & Ovarian Cancer Week and National Previvor Day

On Wednesday, September 15, 2010, in a unanimous show of support, the House of Representatives voted in favor of a House Resolution sponsored by Rep. Debbie Wasserman Schultz (a BRCA2 positive breast cancer survivor) to designate the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of the month as National Previvor Day.

The following are the beginning of  Rep. Debbie Wasserman Schultz's remarks on the House Floor just prior to the vote today:

Madame Speaker, I rise today to offer House Resolution 1522, expressing support for designation of the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of September as National Previvor Day. Of all the cancers that affect women, roughly 10 percent of cases are caused by genetic factors. Though this percentage is relatively small, the risk for this group is huge. Women with hereditary risk factors for breast cancer carry an 85 percent lifetime risk of developing the disease. For ovarian cancer, most women have a 1.5 percent life-time chance of developing the disease. But for those with hereditary risk factors, that chance can be as high as 50 percent. As I learned almost three years ago, I am one of those women. Together with my colleagues and the inspirational organizations including Facing Our Risk of Cancer Empowered (FORCE), Bright Pink, and the Young Survival Coalition, this resolution gives a voice to these women and brings awareness ...
 The full text of the resolution can be found here.

Thank you Representative Wasserman Schultz for caring so much about our community and about preventing these cancers in women through raising awareness.

Monday, September 13, 2010

Emerging Breast Imaging Technologies and Radiation Risk

A recent New York Times headline read:

Radiation, Risks Are Focus of Breast Screening Studies

The topic of the article was the risk for future cancer cause by radiation exposure from new breast cancer screening techniques, specifically, breast-specific gamma imaging (BSGI) and positron emission mammography (PEM).  These radiation risks are discussed in a recent study in the journal Radiology.

Dr. R. Edward Hendrick of the University of Colorado is a breast imaging specialist and the author of this new study.  His conclusion:  radiation from breast imaging techniques can cause radiation induced breast cancers BUT the number of excess breast cancer cases differs significantly based on the screening technique and the woman's age at screening.  For example, regular or digital mammography in 80-year-old women might cause at most one additional breast cancer per 1 million women screened; a very low risk.  Annual mammography obviously involves repeated small radiation doses and therefore an increase in radiation-associated risk.  Dr. Hendrick estimates annual mammography for 40 years beginning at age 40 might cause between 20 and 25 additional breast cancers per 100,000 women, again a small risk considering the lives saved by detecting early breast cancers through this screening method.

Dr. Hendrick then goes on to estimate the excess cancer risk of two new breast cancer screening technologies, positron emission mammography (PEM) and breast-specific gamma imaging (BSGI).  Both of these imaging techniques involve injecting a radioactive substance into the bloodstream and the imaging involves tracing the accumulation and/or metabolism of the radioactive substance in the breast tissue (details of both techniques are contained in Chapter 9 of Positive Results).  Dr. Hendrick estimates the risk of a radiation induced breast cancer is significantly greater for both of these techniques than for annual mammography, regardless of whether it is film or digital (digital mammography has a lower radiation dose than film mammography).  In fact, he estimates that the radiation induced risk from a single PEM or BSGI exam equals the risk of 40 years of annual mammography.  Additionally, mammography only exposes breast tissue to radiation whereas both BSGI and PEM expose all body tissues to the radiation because the radioactive substances travel through the blood stream, thereby potentially creating radiation-induced cancer risk in other tissues as well.

Many genes function to protect our cells and DNA from radiation injury.  Changes or mutations in several of these genes (ATM and CHEK2 are two examples) are common in the population, with as many as 1% of women carrying variations in these genes.  Both are part of a group of genes known as "DNA repair" genes and have been associated with increased susceptibility to radiation injury and radiation related cancers.  Current medical practice does not routinely test for these genes in the general population.  Nonetheless, the future medical practice could involve such testing, which could help determine those individuals who are most at risk from radiation based tests and those who really have no additional risk.   Better understanding of the interplay of our genetics with medical tests and treatment is the goal of "personalized medicine."  But practical decisions such as whether annual mammography is of benefit to any given woman given her genetic makeup is still in the future because, although a few of these genes can currently be tested, these genetic tests are expensive and the medical community lacks a clear consensus about who should be tested and how the information should affect decisions about mammography and other radiation based screening tests.

Dr. Hendrick's study is based on average-risk women, not women at high risk for breast cancer due to BRCA mutations or other hereditary factors.  Women with BRCA mutations may well be even more susceptible to radiation induced breast cancer, which has resulted in much discussion about the use of mammography in very young BRCA-positive women.  As we discussed in Positive Results, thus far only one study, published last year in the Journal of the National Cancer Institute (JNCI), has sought to quantify this additional risk through mathematical modeling.  The JNCI study found that for BRCA-positive women, more lives would be saved by early breast cancer detection than would be lost through radiation-induced cancers beginning annual mammography at age 35.  Under the age of 35, the net benefit of annual mammography was less clear.  Yet BRCA-positive women do develop breast cancer under age 35, and therefore require screening. Current  protocols recommend annual mammography AND breast MRI beginning at age 25.

So what is a BRCA-positive woman to do?  As we discussed in Positive Results, we believe the answer should be a pragmatic one.  The biggest reason why mammography is less effective at detecting cancer in young women is that they tend to have dense breasts, but not all young women have breasts that preclude effective screening.  Thus, all young BRCA-positive women should be screened with MRI, which is not affected by breast density, beginning at age 25 or ten years younger than the youngest breast cancer in the family.  A baseline mammogram should be done when screening begins and the decision on when annual mammography should continue for women under 30 should depend on the professional opinion of the breast experts.  By age thirty, most experts believe the benefits of mammography in BRCA-positive women outweigh the risks.

But what about breast screening with PEM or BSGI?  We discussed both PEM and BSGI in Chapter 9 of Positive Results and our feeling about the use of these techniques in high-risk women is that they are not appropriate for annual screening because of the significant radiation exposure.  This is not to say that a single PEM or BSGI might never be appropriate in a high-risk woman, but their use will likely be for specific circumstances when a breast lesion needs to be characterized and other techniques are inadequate.  Routine use of BSGI or PEM in BRCA-positive women is unlikely unless the radiation dose can be brought to a level that is comparable to mammography.

Studies quantifying the radiation risk of these new imaging techniques were limited at the time Positive Results went to press.  We welcome new studies such as the one done by Dr. Hendrick that help quantify the risk from the radiation exposure of different breast imaging modalities, especially studies that look at radiation-induced risk in BRCA-positive and other high-risk women who must begin breast cancer screening at younger ages than women in the general population.

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Friday, September 10, 2010

My genes, not Myriad's

I wrote an opinion piece on the patent case involving the BRCA patents that was published today in the Santa Monica Daily Press. It begins:

A company in Utah owns my genes, or at least they owned bits of them until recently when the United States District Court for the Southern District of New York invalidated patents issued to Myriad Genetics for the breast cancer genes, known as BRCA1 and BRCA2. I have a BRCA2 mutation and have long wondered how it was that Myriad could own two small slices of the chromosomes that reside in every cell in my body. After all, Myriad didn't "invent" my DNA; that was the exclusive job of my parents, who created the unique DNA sequence that is mine.

My mother had breast cancer when she was 43 and her grandmother also had breast cancer. When I wanted to test for the breast cancer genes my only option was to send my blood and my money to Myriad because their exclusive patent precludes other companies from testing for these genes.

The District Court's decision is only the opening skirmish in what is likely to be a protracted battle over gene patents. Myriad has appealed, and experts believe this is an issue that will be decided by the U.S. Supreme Court. But the decision is nonetheless a watershed moment with implications that reach far beyond the BRCA genes, because approximately 20 percent of the human genome has been patented. Several thousand companies own different slices of my DNA.

Myriad and others argue that without the promise of patent protection companies will not invest the money needed to make new genetic discoveries. While this argument has some merit it ignores the fact that millions of public dollars also went into the discovery of the BRCA genes. The fruit of this public investment in gene research should be publicly available.

In contrast to the BRCA genes and other privately patented genes, the vast majority of gene sequences were discovered through the Human Genome Research Project and are publicly available through a database on the Internet, which facilitates collaboration and research to find cures for complex diseases like cancer. Multitudes of companies as well as public institutions do fund and collaborate on research on these non-patented genes.

The era of truly personalized medicine is at hand, when genetic information can be used to customize medical recommendations for both prevention of and treatment of diseases. But first we need to know the genetic code stored in our DNA. The National Human Genome Research Project is speeding toward its goal of a commercially available analysis of an individual's entire genome for less than $1,000. Yet even when technologically feasible, no company will be able to actually provide a full genome sequence. All of the DNA slices covered by patents will be excluded. Although I paid Myriad to find out that I have a BRCA2 mutation, as a practical matter neither I or anyone else will pay several thousand different companies for the information stored in the various other slices of DNA that are subject to patents. A full genome sequence for $1,000 would be useful to me and to my doctor, especially if it could shed light on my risk for the heart disease in my family. The future of personalized medicine could be strangled by the patent system. What an absurdity.
Read more.

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Monday, September 6, 2010

Teal Toes

September is ovarian cancer awareness month! As I have blogged about before, I believe that September should be bathed in teal (the ovarian cancer color) the way October is bathed in pink for breast cancer. One of the things I am doing this year is joining Teal Toes. Teal Toes' mission is to raise ovarian cancer awareness by getting women to paint their toenails teal.

Yes, this photo is of my toenails, painted teal. Now, I must say that were it not for Teal Toes, this is not a color I would naturally choose. But I have found that teal toes do exactly what they are intended to do. They are a conversation starter. In the past week I have had on average one person a day comment on my brightly colored toes and it has given me an opportunity to talk about teal being the ovarian cancer color, September being ovarian cancer awareness month, my passion for this cause because of my genetic high risk, and, with some people, how ovarian cancer is a silent but deadly killer.

Please join Teal Toes on Facebook and get out and start raising ovarian cancer awareness!

Happy Labor Day!

Wednesday, September 1, 2010

Beyond the headlines: Prophylactic surgery reduces cancer risk and saves lives

If I opt to remove my healthy ovaries and/or breasts, how much am I reducing my cancer risk? This is one of the questions those of us who are BRCA positive ask our doctors if we are contemplating preventive surgery to remove our breasts or ovaries. Our doctors tell us yes, we were reducing our risk: prophylactic mastectomy reduces breast cancer risk by 95 percent to 99 percent and that prophylactic bilateral salpingo-oophoectomy reduces ovarian cancer risk by approximately 90 percent. But until today, there were no studies that showed that these drastic measures would actually extend our lives. Today's issue of the Journal of the American Medical Association includes an important new study on the benefits of prophylactic mastectomy and prophylactic salpingo-oophorectomy for BRCA-positive women.

What makes this study unique is that it is a large, multi-center study that not only looked at the effectiveness of these prevention techniques overall for women with BRCA mutations but also sorted the data to look separately at the effectiveness of preventive surgeries for women with BRCA1 mutations versus BRCA2 mutations. The study also sorted the data to look at women who had already been diagnosed with breast cancer at the time of prophylactic oophorectomy versus those who had never had a cancer diagnosis. This data is important because many women still come to genetic testing only after a breast cancer diagnosis and these women need to know that what effect removing their ovaries will have on their risk for another breast cancer as well as their risk for ovarian cancer. Finally, the study looked not only at the risk of developing cancer, but also the risk of dying from breast cancer, ovarian cancer, or from any other cause.

So far, the headlines focus only on the overall findings of the study that these preventive surgeries do reduce both breast and ovarian cancer risk in the women who choose them as well as reducing our overall risk of death. This is indeed good news for those of us facing and making the though decisions to remove our body parts in hopes for a longer, cancer-free life. But those of us with BRCA mutations need and want the details of the study. JAMA has made the full text of the study available online free (at least for now). You can find it here.

Some of the study findings are striking, which probably accounts for why nearly every major news outlet has done a story on this in the past 24 hours. CNN reported: "Study: Breast, ovary removal cuts cancer risk in high-risk women." ABC Evening News on Tuesday August 31st titled its story: "Removing Ovaries and Breasts to Cut Cancer" and profiled FORCE Outreach Coordinator Lisa Schlager and her gut wrenching decisions to have preventive surgeries as part of its coverage. NPR's All Things Considered had more extensive coverage. It profiled a woman who made the tough decision to have preventive surgery, interviewed one of the researchers on the study, and talked with Dr. Ken Offit, chief of the Clinical Genetics Service at Memorial Sloan-Kettering Cancer Center about the importance of the study. The All Things considered stories can be found here and here.

The study found that preventive mastectomy is highly effective for preventing breast cancer and in fact none of the women in the study who had preventive mastectomies went on to develop breast cancer during the three years of follow-up. While this is indeed good news for the thousands of BRCA-positive women who, like me, have made the painful choice to give up their breasts for a cancer-free future, what I really want to know is whether my breast cancer risk will remain low for the rest of my life. Other studies seem to indicate that the answer will be yes, but the women in the PROSE study, from whom the data for this study was compiled, and other women, will need to be followed for many more years to get additional reassurance on this answer.

Another striking finding is that none of the women with BRCA2 mutations who have had both preventive mastectomies and preventive oophorectomies went on to develop cancer, but this good news is tempered by the fact that the study only included fifty-six such women. This highlights the fact that these preventive surgery decisions are difficult and many women with BRCA mutations are not opting for surgery, at least not immediately. Only ten percent of the women in the study opted for preventive mastectomies although 38 percent had prophylactic bilateral oophorectomies. Additionally, and perhaps more significantly, none of the BRCA2-positive women who had oophorectomies went on to develop primary peritoneal cancer. This was a larger group of women because some women chose oophorectomies but chose to keep their breasts.

The study confirmed what had been reported in multiple earlier studies about the breast cancer risk reduction from premeopausal oophorectomy. Namely, oophorectomy prior to age 50 reduces breast cancer risk for both BRCA1 and BRCA2 women, although perhaps to a different extent. Oophorectomy after the age of fifty did not result in any change in breast cancer risk although it remained highly effective at reducing future ovarian cancer risk. This study found that premenopausal ooporectomy conferred a 64 percent reduction in breast cancer risk for BRCA2 carriers but only a 37 percent risk reduction for BRCA1 carriers. The study authors speculate that this may be due to the fact that many BRCA1 breast cancers are estrogen negative but clearly more research is needed on this issue.

The ovarian cancer risk reduction for BRCA1 is also not as high as for BRCA2 carriers, although it is still excellent. Whereas none of the BRCA2 carriers who chose preventive oophorectomy developed primary peritoneal cancer, BRCA1 carriers who had preventive surgery had an 86 percent reduction in ovarian cancer risk with approximately 1 percent of such women developing peritoneal cancer following preventive oophorectomy (ten BRCA1-positive women developed peritoneal cancer after surgery). This may be due to the fact that BRCA1 carriers have a higher overall risk of ovarian cancer or may be due to the molecular features of BRCA1 ovarian cancers that are not yet understood.

The finding regarding risk reduction for women who have already been diagnosed with breast cancer are significant. Unfortunately, removing the ovaries after breast cancer does not reduce the risk of another breast cancer for these women. But these women receive the same ovarian cancer risk reduction as women who have not had a breast cancer diagnosis.

An issue that needs more research is the ideal timing of when a woman should have an oophorectomy. Because ovarian cancer is difficult to detect at a stage when it will not be fatal, many doctors recommend that BRCA-positive women remove their ovaries as soon as they are done having children. But very early surgical menopause, especially under age 45 without supplemental hormones, may cause other health risks. The study authors noted that:
Precise estimates of risk reduction following risk reducing salpingo-oophorectomy are needed to balance the increasingly recognized health risks caused by premature menopause.
Specifically, as we discussed in Positive Results, the decision of when to remove the ovaries comes down to a cost-benefit analysis. We and our doctors must weigh the risks of breast and ovarian cancer caused by our BRCA mutation if we keep our ovaries versus the risks of premature menopause, especially under the age of 45. We need to know if hormone replacement will negate any portion of the risk reduction benefit of these surgeries. The study authors note the need for further research on this issue but do note that research to date does not show any increase in breast cancer risk with hormone use in BRCA-positive young women. We also need to know that removing our ovaries at a young age does not increase our risk of death from other causes because studies in the general population do show an increased risk of all cause death in women who remove their ovaries under the age of 45, especially if they do not have replacement hormones up to at least age 45. Ovarian cancer risk in BRCA1-positive women under the age of 45 is significant enough that doctors strongly recommend removing the ovaries as soon as childbearing is complete. This new study confirms that these women are making the right decision.

The study also confirms that women like me who also choose prophylactic mastectomies are reducing our future breast and ovarian cancer risk to the lowest possible level and are undoubtedly extending our lives, regardless of whether we are BRCA1 or BRCA2. Finally, for those women who are considering BRCA testing but worry that knowing their risk will be a burden, this study should provide reassurance that if you do test positive for a BRCA mutation, there are steps you can take to protect your life from these cancers.

Women who are considering genetic testing or who have tested positive for BRCA mutations need to more than the headlines. They need to understand the complexities of breast and ovarian cancer risk conferred by BRCA mutations and all the options that are available to protect their lives, as well as the consequences of those options. This is the reason we wrote Positive Results.

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