Flight attendant forced to remove prosthetic breast

Mythbusters: Inheriting breast cancer risk from dad

Truth or myth?

"You don't need to worry about the breast and ovarian cancer on your dad's side of the family.  You can't inherit breast cancer from your dad."

Myth, 100% myth.

There are lots of breast cancer myths out there but this is one of the ones that drives us most crazy, not only because this is untrue but also because these words often come from the mouths of those people we trust most, our doctors.  The following is a true story of what happened to one women whose doctors told her she could not inherit breast cancer risk from her dad:

I looked at my dad's gaunt face as we walked, holding hands, through the doors of a well-known New York City hospital devoted to cancer care. Just a few days earlier I had to make the dreaded call to tell him that I was diagnosed with the same disease that took his mother’s life in 1963. He was only nineteen when his mom died of metastatic breast cancer at the age of forty-five, and he had vowed to never again step into the building that held so many deeply painful memories.

When I discovered a tender lump in my left breast just after my thirty-sixth birthday, I was a bit surprised but didn’t think I had reason to be alarmed. Although I knew my father’s family history, which included not only his mother dying of breast cancer at an early age but also an aunt with breast cancer and a grandmother with ovarian cancer, it was my understanding from several doctors and a college human biology course that women inherit breast cancer risk from their mothers (and that breast cancer doesn’t cause pain). Counting on that to be true, I figured I had either bruised my breast or had some sort of benign cyst. After all, I was young and healthy, and my mom’s side of the family was cancer free.

The lump did not go away. After three months, during which my anxiety level kept rising, I went to see my gynecologist. She reviewed my family history, performed a breast exam, and confirmed that she did feel a lump. She told me that it didn’t feel like cancer to her. She also said that because no one on my mom’s side of the family had breast cancer, I needn’t be particularly concerned. She reassured me that it was “probably nothing” but gave me a prescription for a breast ultrasound and mammogram just in case.

Although I trusted her, the lump had been there for a few months, and I had a terrific fear somewhere in the depths of my mind that something was really wrong. “Probably nothing” was not resonating for me. I decided to have an ultrasound of my breast (it was too sore for a mammogram) as soon as I left her office. The radiologist told me that the ultrasound showed calcifications and recommended we probe further. All alone, scared out of my mind, and several large core needle sticks later, the biopsy confirmed my most dreaded suspicion: I had breast cancer.

I was devastated. I cried a few times but for the most part, went into numb shock. I was determined to make the very best decisions to protect my life. Fortunately, I live in New York near one of the top cancer centers in the world. I went there with my father to meet with the best breast surgeon I could find.

I presented my pathology report to the quirky, brilliant surgeon with amazing hands. Her nurse practitioner took my medical history, which included all the breast and ovarian cancer on my dad’s side of the family as well as my Ashkenazi Jewish heritage. None of this information seemed to faze my surgeon, who recommended a quadrantectomy (essentially she was going to remove a quarter of my breast) and thought my husband’s suggestion that I have a mastectomy was “unnecessary and radical.” I felt powerless but I was relieved to hear that I would still be able to keep about three-quarters of my breast. I was eager to get the cancer out of my body. 

My post-surgery pathology report showed my cancer was high grade, poorly differentiated, triple negative, and 75 percent invasive. Translation: very aggressive and very dangerous. My breast surgeon recommended four months of chemotherapy followed by radiation therapy. She never mentioned genetic counseling, genetic testing, or the possibility that my cancer might have been caused by a faulty BRCA gene.
My dad returned to his home on the West Coast a week after my surgery and told my story to a medical oncologist friend who was then CEO of the cancer center in San Diego where Dad serves as trustee. This doctor told him that I needed to be tested for BRCA mutations, because although the medical community had long believed that breast cancer was passed from mother to daughter, Dr. Mary-Claire King’s discovery of the BRCA1 gene had proven that men can be carriers who pass the gene along too. 

Armed with this information, my father flew back to New York, and together we met with a Certified Genetic Counselor. I tested positive for the BRCA1 mutation named 185delAG, one of the Jewish founder mutations. So did my dad. 

Although I had already been diagnosed with cancer, the implications of being BRCA positive were enormous. My risk of recurrence was huge and I had a significant chance of developing a “second primary” (a new breast cancer). After getting second and third opinions from breast oncologists and meeting again with the Clinical Genetics Department, all interspersed with frequent tears and soul searching, I decided to have prophylactic bilateral mastectomies with immediate implant reconstruction. For me, this risk-reduction surgery was the only option. After my experience with cancer and chemotherapy, I knew I would live in fear of finding another cancer, especially since my risk was so high. 

Once we realized the immense risks posed by carrying a BRCA mutation, we wanted to know why I had not been referred to genetic counseling earlier. Dad and I went back to the head of the Clinical Genetics Department at the cancer center where I had been treated. 
“My daughter came here at age thirty-six with breast cancer, as an Ashkenazi Jewish woman, with a profound history of breast and ovarian cancer on her father’s side of the family. Your hospital’s guidelines and the National Comprehensive Cancer Network guidelines both call for genetic counseling in a case like this. Why wasn’t she recommended for genetic counseling and testing?” My father asked.

The answer he received was unfortunate and coldly political. “In this hospital a referral to the Clinical Genetics Department is made at the surgeon’s discretion. Your daughter’s surgeon has never referred a single patient to our department.”

If my family history had been correctly identified and if I had received genetic counseling before my first surgery there is no doubt in my mind that I would have chosen bilateral mastectomies rather than a quadrantectomy. My doctors, by failing to discuss the BRCA genes with me or to refer me for genetic counseling, prevented me from making a truly informed decision prior to my first surgery. The unnecessary quadrantectomy was incredibly painful and also greatly compromised my subsequent reconstructive results at the time of my mastectomies.

I am a survivor who has been able to make some tough decisions. The knowledge I have about my mutation has enabled me, I hope, to made decisions that will now allow me to live a long, full, and meaningful life.

But what about other young women just like me? How many with a telltale family history have a false sense of security because, like me, they’ve been told “cancer doesn’t hurt” or “women don’t get cancer from their fathers.” How many women are living with a life-threatening mutation without the benefit of good surveillance and/or risk-reducing actions because they’re unaware they should consult with a certified genetics counselor and potentially be tested for a BRCA mutation? Sadly, not all physicians can give good advice on genetic issues.  That means individual patients—both men and women—must become informed about their inherited medical history on both sides of the family, and make their own educated decisions about what’s right for them.

Reprinted with permission from Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer


This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License.

Triple negative breast cancer in the Bahamas

The following blog is from the Triple Negative Breast Cancer Blog:

by Steve K.

Some months ago a young reporter, Candia Dames, at The Nassau Guardian, the island’s oldest (1844) and most respected newspaper, reported on the fact that scientists had discovered an African BRCA Founder’s Mutation much like the Ashkenazi BRCA Founder’s Mutation I have. I wrote Candia and arranged to meet her July 29th at their headquarters in Nassau. I brought her a copy of the book Positive Results that my daughter and I had written passages in.

I told her that I felt it is important to get the word out that men can inherit the BRCA mutation and pass it on to their children. Turns out Candia lost her mother to breast cancer when she was 24. We had an extraordinarily intense 30 minute meeting and she “gets it.” She had told me in advance, that her time with me would be very short because she was leaving for two week holiday that night. Surprisingly, as we finished talking, she asked me “how would you like to be on TV tonight?”

I agreed and literally 5 minutes later a cameraman came out and shot Candia interviewing me. I think the interview was about 20 minutes long (I think they cut it to 5 minutes-I wasn’t able to view it..my hotel did not carry the channel…unfortunately, to date, I have been unable to get a copy of the interview. I will put it on the blog if I ever get one). I then introduced Candia to my friend who is very ill and it turns out his son was very much in love with her sister. Nassau is a small place..Lots of cousins marrying cousins over the centuries just like Ashkenazi Jews. Good breeding grounds for BRCA.

I am attaching the article Candia crafted in a remarkably short period of time…There is a minor error at the end, third paragraph from the end  misquoting me-I had said that fathers can pass the mutation on to their sons and/or daughters who in turn can pass it along to their children. But, overall I think she did an excellent job..and folks got the message that dads can carry this mutation and pass it along.

http://www.thenassauguardian.com/nationalreview/breast-cancer

The next morning I was having breakfast at the hotel and I had a copy of the paper on the table..A waitress came over to me and said “hey, that’s you, right?” and she called her friend over who said “I saw you on TV last night and I am glad I did because I am going to speak to my Daddy…His mother and two aunts and Grammy all had breast cancer early and they all gone..keep talkin’, man..this is important..for my daddy and maybe, me”

The waitress said it so genuinely…even if she is the only one to take action, I feel it was worth the effort…My advocacy work, in this country, feels so right and it was so heartening to have a reporter think the information was important enough to put it TV and on page one of the newspaper. But my satisfaction at getting the information out was tempered drastically by the following incident-
Fast forward a couple of months to last weekend at the ASCO Breast Symposium in National Harbor, MD. I was walking through the exhibit hall and I hear someone yelling “hey, Steve”…I turn and it is my friend’s surgeon from the Bahamas. He is an exceptionally nice young man…my guess is late 30’s…hey, that’s young to me…I will be 67 in a few months. I told him that I wanted to go back to the Bahamas and raise awareness and try to get more women counseled and tested for the new BRCA1 African mutation…”no, please don’t do that..” “Why?” “If a Bahamian insurance company finds out that a young woman has the BRCA1 mutation they will drop her coverage and her family, too…as a “pre-existing condition.”

In 2008, our Congress passed the GINA law which helps protect folks here with their health insurance..not so for life insurance…but at least for health there are some protections…albeit not perfect. But no such law exists in the Bahamas and if a young woman wants to test and the insurance company knows her status she can forget about getting her surgery paid for. Of course all genetic mutations are pre-existing…and the insurance companies use the fact that they are to deny women coverage.

The doctor told me that he treats his patients “as if they are positive”…”wow, what if they are not positive?”…”yes, I know, but what is the alternative?” I am afraid I did not have an answer for him. All I know is that teenagers and women in their 20’s, 30’s are being diagnosed with aggressive triple-negative-breast-cancer and it simply breaks my heart that these young women can’t test…can’t have prophylactic risk-reducing breast or gynecologic surgeries that will be covered by insurance..Lives are being lost because of these Neanderthal insurance policies..I think we can assume that there are no previvors doing risk-reducing surgeries and getting the procedures paid for as is the case in the U.S. A Bahamian BRCA1+ woman is denied coverage if the insurance company knows she has the mutation. If the insurance company doesn’t know the woman has to wait until she has breast or ovarian cancer until she has insurance coverage. There is no way a woman, at high-risk, in the Bahamas can try to test and then protect herself if she wants the surgery covered by insurance.  I would say that 99% of the women in the Bahamas would not be able to pay for the surgeries on their own. My daughter faced odds that meant that she faced an approx. 85% risk of getting breast cancer in her lifetime and a separate 45% risk of getting ovarian cancer in their lifetime.  These odds are tragically sad and the policy of “pre-existing” condition denial in the Bahamas is truly pathetic and unjust in my view.
As suggested by my dear friend’s surgeon, I am going to try to join the small, but growing, effort for new legislation in the Bahamas. It seems, according to the surgeon, that the Bahamian insurance companies take things to another pernicious level by not only denying the woman but also refusing coverage for her family. Hopefully, over the next several years we can get the laws to change. In the meantime, my heart aches. So, the waitress, above who wanted her daddy to test better tell him to do it surreptitiously..And if he and she, G-d forbid, have the BRCA1 mutation, what do they do with the information? Increase surveillance, at a high-risk clinic, would be the answer in the U.S. but what about the Bahamas? As I think about I guess it is important for the BRCA information to be made public in the Bahamas. On a practical basis, for sure there are Bahamian legislators who have been touched by early-onset breast or ovarian cancer in their families and they will, most likely, be the ones to champion the legislation. At least that is my dream and I am going to do my best to have the legislation changed.

As an aside, what is obvious to me, out of all this is that contrary to many racist beliefs held in this country that white is superior to black or brown the Human Genome Project of a few years ago has shown that we are all people, almost identical, most of the times, DNA-wise. Eighty percent of BRCA1+ women in the U.S. who have breast cancer have triple-negative breast cancer and the overwhelming majority of Bahamian women who carry the African BRCA1 founders mutation, I am told, also have triple-negative breast cancer. Folks with different histories winding up with a BRCA1 mutation and triple-negative breast cancer. We are one.

all the best,
Steve

The contoversy over thermography

October has become "all things about breast cancer, all the time" and while a lot of the information that makes headlines in October are helpful, informative, and potentially lifesaving, some of the information out there is decidedly "none of the above."  In our last post we talked about the variety of breast cancer screening options available today, many of which are still experimental.  With this post we focus on one technique in particular that we find problematic because it is highly touted on the internet without scientific data to support its use as an effective screening technique.  This technique is called thermography, although it does go by other names, including infrared mammography and computerized thermal imaging.

We focus on thermography here because of a recent article in the Huffington Post touting its benefits.  Dr. Christiane Northrup's article is well written and persuasive and judging by the comments legions of women are currently following her advice to give up their yearly mammograms in favor of thermography.  But we sincerely hope than none of the fans of Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer are among those making what we consider a dangerous step away from mammography and breast MRI.   

Why?  Because thermography, although studied seriously since the 1970s, has not been proven sufficiently effective at finding cancer to replace either mammography or MRI.  Dr. Northrup's article is not science, it is fluff and advertising for a technique that may actually cause harm.  Fortunately, we were not the only ones who noticed Dr. Northrup's slick sounding article.  A breast cancer surgeon and science blogger has blogged in detail about the falsity of virtually every assertion in Dr. Northrup's article in his blog The Huffington Post promotes breast cancer quackery again, which we urge you to read, both because it is entertaining and because it methodically reviews the hype and the science of thermography.

October serves as a reminder to schedule your breast cancer screening

October began turning pink for breast cancer awareness more than 25 years ago. A lot has changed in that time. October is now not only about awareness of this disease. It is about raising money to find/fund a cure or in the words of Dr. Susan Love, not to find a cure but to find the causes so that we can prevent breast cancer in the first place. October is also for reminding women to schedule their breast cancer screening because early detection saves lives. We are all in favor of the reminder to women to schedule their breast screening. But what kind of screening? There is increasing confusion about when women should begin screening and what type of screening they should have.

Part of the confusion comes from the change in screening mammography recommendations from the United States Preventive Services Task Force (USPSTF) in November 2009. The USPSTF no longer recommends regular screening mammograms for average-risk women between the ages of forty and forty-nine. Much of the confusion over these new guidelines stems from an assumption that they advise against mammography in all average-risk women in their forties, which is not the case. Rather, the USPSTF urges women who have risk factors for breast cancer, including a first-degree relative with breast cancer or a personal history of abnormal breast changes, to continue to work with their doctors and do appropriate mammography screening, even in their forties.

The mammography controversy is not a new one, despite the headlines of the past year touting it as such.  If you are interested in a detailed and thorough review of the research and the politics behind mammography screening recommendations check out Understanding the Mammography Controversy: Science, Politics, and Breast Cancer Screening by Madelon L. Finkle. Nonetheless, various groups including the American College of Radiology, the American Cancer Society, and Susan G. Komen for the Cure still recommend that women in their forties have annual screening mammograms to check for breast cancer.  The American College of Radiology points to a recent Swedish study that find the death rate in women ages 40 to 49 is reduced by one-third by use of screening mammography.

Another part of the confusion comes from the plethora of other breast screening modalities available, which range from the well established to the experimental to the unproven. We devoted an entire chapter of Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer to all of the various breast cancer screening techniques and the scientific studies that support or do not support their efficacy in either high-risk or average-risk women.  Specifically, we discuss:

• Mammography (both film and digital)
  
• MRI
• Ultrasound
• Digital Breast Tomosynthesis
• Breast CT
• Cone Beam Breast Computed Tomography
• Automated 3D Breast Ultrasound
• PET/PEM scans
• Molecular Breast Imaging (MBI)
• Breast Specific Gamma Imaging (BSGI)
• Elastography
• Ductal Lavage
• Halo Breast Pap
• Thermography
  

We discussed PEM and BSGI again in a recent post in light of a new study on the increased risk for future breast cancers caused by the radiation exposure of these new techniques.

Despite the controversy about when to begin mammography, it remains the mainstay of breast cancer screening because it is an inexpensive, effective tool for detecting early-stage breast cancer.  Is it perfect?  No.  It can miss some cancers, especially in young high-risk women, which is why adding MRI to the screening protocol is recommended for high-risk women.  Just a reminder, Dr. Gordon's breast screening recommendations for high-risk women are:

• Breast surveillance beginning at age twenty-five or ten years earlier than the youngest breast cancer in family (but no earlier than age twenty).
• Baseline digital mammogram at first surveillance to assess breast density and for MRI comparison.
• Annual MRI.
• Additional mammograms under age thirty-five if determined to be clinically useful.  Annual mammograms (in addition to annual MRI on an alternating six-month schedule) beginning no later than age 35.
  
• Clinical breast exams every four months.
• If high-risk surveillance is recommended due to moderate to high childhood radiation exposure (such as for childhood cancer treatment) surveillance should begin either at age twenty-five or eight years after the end of treatment, whichever is later.

Wednesday:  The controversy over thermography.

Video on the JAMA report

Here is a video on the Jounal of the American Medical Association Study from September 1, 2010 that you might not have seen:



We discussed this research in our prior blog: Beyond the headlines: Prophylactic surgery reduces risk and saves lives.

Faces of Metastatic Breast Cancer

For every view of this video TODAY Genetech will donate $1 for metastatic breast cancer research. A few minutes of your time, what an easy way to give.

NFL goes pink

 I went to a parent meeting at my son's school Monday evening and when I arrived home I found my husband and both of my sons firmly planted in front of Monday Night Football.

"Look Mom," said my younger son, "they all have pink breast cancer ribbons on their helmets."

"And the referees have pink whistles and pink ribbons on their hats," added my older son.

Although they continued to point out pink cleats and other pink items in the game they did not catch them all, which include:


» Game balls with pink ribbon decals used for every down
» Players wearing pink cleats, wristbands, gloves, chin straps, sideline caps, helmet decals, eye shield decals, captains' patches, sideline towels and quarterback towels
» Pink coins used for the coin toss
» Pink sideline caps for coaches and sideline personnel and pink ribbon pins for coaches and team executives
» Officials wearing caps with pink ribbons, pink wristbands and pins and using pink whistles
» On-field pink ribbon stencils and A Crucial Catch wall banners
» Pink goal-post padding in end zones

It was true, that bastion of male machoness has gone pink this month.  Both the players and the referees are supporting breast cancer awareness and cause marketing by wearing pink ribbons and making donations to breast cancer organizations.  Nationally the NFL has adopted the American Cancer Society as its pink charity although specific teams have adopted various breast cancer organizations.  A quick rundown of the NFL's Pink October activites can be found here.

Dr. Gordon/Positive Results on CNN

Shop for the Cure

 When I wake up in the morning I head to the kitchen to make coffee.  Now that October is here I could do a complete kitchen overhaul with pink appliances.  I could buy a pink Kitchen Aid mixer, a pink coffee maker, a Brita Pink Water Pitcher, a pink blender, a pink food processor, and a pink ice cream maker and a portion of the purchase price would go to support finding a cure for breast cancer.  I also could stock the refrigerator and the pantry with  pink ribbon yogurt, bottled water, juice, bagels, tea and even breakfast cereal while supporting breast cancer.  In fact my local grocery story has eight pages of product ads linked to breast cancer this week.

I could buy a new pink vacuum for my morning cleaning.

After getting the kids off to school I often head to the gym, where I now have a new pair of pink workout gloves adorned with the cute little pink ribbon for breast cancer.  My local Sport Chalet has pink ribbon balance balls, free weights, and yoga mats for my workouts at home.

Back from my workout I hop into the shower.  I could dry my hair with a new pink hair dryer, then do some styling with pink hot curlers or a pink straightener, depending on my chosen style.  Of course I shouldn't forget my pink ribbon lipstick before I head out for the day.

In the office I need to use my pink breast cancer Sharpie and pink ribbon pens with my pink Post-it notes.  I should definitely use a pink ribbon calculator, pink ribbon file folders,  and pink ribbon pencils in my pink ribbon electric sharpener.  Of course I already have a pink neoprene case for my laptop.

Stepping outside I can don my breast cancer awareness sunglasses on my way to pick up the kids from school or when going out to shop for even more pink ribbon products, including bathroom tissue for the cure, although fortunately that is not pink.

Next blog:  Where do all the pink dollars go?   Stay tuned for more information on where all the money goes.  In the meantime, you can do much of your breast cancer shopping on Amazon without ever leaving home.
 

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!

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.

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.

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.

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.

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

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

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

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!

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.

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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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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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!

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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Recovery Journal - Part III: On the road again

I am now in Missouri with my younger son visiting my family. This is a trip we make every summer. My parents live on Lake of the Ozarks in Southern Missouri. Lake of the Ozarks is the largest man-made, non-flood control lake in the United States. It is 90 miles long with 1,100 miles of shoreline and is a major resort and vacation destination. This is not where I grew up, although my parents have lived here for more than twenty years. It is a fantastic place to visit in the summer and their house is high on a bluff overlooking the main channel of the lake with a spectacular view. I took the photo here from their deck this morning. There are dozens of golf courses, a large outlet mall for shopping, dozens of miniature golf courses, a water park, and every other type of amusement you would expect to find in a resort community. And of course all of the activities in and on the water. Behind the house on the rocky hillside my brother has planted a garden with cucumbers, watermelon, tomatoes, and pumpkins. My son went out yesterday morning and harvested his first watermelon.

I must be feeling better as I headed for the shopping mall the first day after we arrived. I have been out walking every morning. Lake of the Ozarks is located in South Central Missouri in what are called the Ozark Mountains. I live in California and we spend a week every summer in Yosemite National Park in the Sierra Nevada Mountains. By comparison, the Ozark Mountains are really only hills, but they are a beautiful place to walk in the mornings and the hills make for a good workout. They are short but steep and forty-five minutes of walking here is a good workout. My parent's house backs onto several acres of heavily wooded area. I see deer every morning, and this time of the year often I see fawns that still have their spots out their moms. Now as I write I am sitting on my parents deck enjoying the view of the lake.

Yesterday marked three weeks since my laparoscopic bilateral salpingo oophorectomy (BSO) and laparoscopically assisted vaginal hysterectomy (LAVH). For the most part I feel totally normal and able to do my normal daily activities, although I do get tired in the late afternoons some days. Overall, the recovery from this surgery was significantly easier than the recovery from bilateral mastectomies with breast reconstruction. Had I not run a low fever (or as my doctor reminded me, an elevated temperature, not a fever) between days four and ten, I expect I would have felt better more quickly.

My oldest son came home from camp sick on day 11 of my recovery, which was my first day without a fever. Although my husband made heroic efforts to care for both of us I nonetheless had no choice but to be on my feet helping care for my son. Three days later, when my older son rounded the recovery corner my younger son returned from camp and also promptly got sick. At that point, almost two weeks after surgery, I found that most of the abdominal swelling was gone. I was able to wear my normal clothes. I felt pretty good and had minimal pain, but I did not have a lot of stamina. I was pretty much where my surgeon had predicted I would be. He had said: "Expect to get half as much done, in twice as much time, and to run out of energy and need to nap," He was right, I was not setting any speed records, everything took longer, and I needed to rest. Often I didn't actually need a nap; I just needed to be horizontal for a period of time.

The good news is that the third week was a huge turning point. Each day I felt stronger and more normal and I have gradually given up the afternoon rest. In just the past three days the bleeding has tapered off significantly. At this point I don't have any pain, just an achy feeling in my lower right pelvis if I am on my feet for a lengthy period of time. Now I just need to gradually return to a normal exercise routine and get ready for the Kickin' Cancer run/walk on September 19th!


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The Power of Support

Saturday was the summer meeting for the FORCE Outreach Group in Los Angeles. This meeting reminded me how important it is for us to get together. There is a power in meeting in person with other women who are facing or have faced the same challenges. And because many of us who are BRCA positive don't know many others in our "regular" lives who share the same high risk for breast and ovarian cancer, these meetings are often the only place we feel truly comfortable talking about our challenges, fears, and plans.

I remember the first FORCE meeting I attended three and a half years ago. I had been lurking on the online FORCE message boards but had not posted much. I was hesitant to go to a meeting where I would not know anyone. But a woman I had met was going and convinced me to go also. The meeting was in a restaurant and was primarily social; we had drinks, dinner and introduced ourselves. After dinner a group of women stationed themselves in the ladies room for "show and tell." Women who had already had mastectomies and breast reconstruction showed their reconstructed breasts to women who were considering taking this bold and proactive step. That meeting was the first time I saw breasts that had been reconstructed with transplanted tissue, including both DIEP and GAP reconstruction. At the time of this meeting I had already had mastectomies and had started my implant reconstruction. I wished that I had found FORCE and attended a meeting before I had my mastectomies. I might still have made the same choice, but I would have been far better informed and I would have met women who had made different decisions. I am a firm believer in doing all of your homework and there is no place better than a FORCE meeting for doing a little in person homework.

Our LA Outreach meetings have changed over the past three years. We no longer meet in restaurants. We meet in homes or in other meeting spaces, which makes conversation easier and the meetings are more intimate. We do have speakers from time to time but most often we are resources for each other. Today's meeting was at The Wellness Community of West Los Angeles, which has a wonderful large meeting space. One of the things I particularly like about our meetings is that there are a group of women who have been coming to our meetings for years and I enjoy seeing them and keeping up with what is happening in their lives. We also always have women who are new the BRCA and high risk world and it is wonderful to see how women connect with others who can answer their questions or who are in similar situations. And of course the show and tell is a consistent element of all meetings. Today, as with many of our meetings, women were pleasantly surprised by this element of the meeting. Many women remember their mother's and/or grandmother's mastectomies from years ago, when such procedures were truly disfiguring. But with newer techniques, including skin sparing and nipple sparing mastectomies, today's mastectomies are not your mother's mastectomy. Many of the results are truly beautiful. Women today spoke of their reconstruction, especially if they used tissue from other parts of their bodies, as allowing them the "mommy makeover" that they wanted after multiple pregnancies and breastfeeding. This, along with their substantially reduced breast cancer risk made them happy with their decision to undergo preventive mastectomies.

And yet other women, sometimes even after a breast cancer diagnosis, have decided to continue to pursue a program of surveillance. We discussed surveillance options, their weaknesses and strengths. It is good for women to have the opportunity to talk about their surveillance and how the stress of surveillance is affecting their lives. It is good for young women to be able to talk about their hope to breastfeed their future babies before they need to consider surgical prevention. These young women are at a time in their lives when their friends are concerned with getting married and having babies, not with mammograms or MRIs. Meetings allow these women to connect with other women sharing the same high-risk concerns help them to feel less isolated.

But this meeting was somewhat muted for some of us because one of our group is suffering from multiple complications from breast reconstruction surgery. Our dear friend Teri, whose blog is Teri's Blip in the Universe, has blogged about her battle with blood clots that developed after her second breast reconstruction surgery. We all undergo these preventive surgery with the hope that we are taking proactive steps to prevent cancer and protect our lives. We all know that surgery comes with risks but we also know that those risks are low and we hope that complications will not happen to us. Teri's story, which she is graciously sharing with the world shows that even with preparation, excellent doctors, and good follow-up care, complications can happen. As a high-risk family we are all praying for Teri's speedy and full recovery. And we were thinking of her at our meeting today.


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FDA may limit treatment options for advanced breast cancer

I am at high risk for breast and ovarian cancer. So when I see headlines that a breast cancer organization and an ovarian cancer organization are teaming up on something, I take notice because I can be pretty sure that it will affect either me or someone I love.

This week, the Ovarian Cancer National Alliance and Susan G. Komen for the Cure teamed up to lobby the Food & Drug Administration (FDA) and members of congress about the blockbuster cancer drug Avastin. Avastin is approved by the FDA to treat advanced metastatic breast cancer as well as colorectal cancer, lung cancer, and others.

The reason for this united front is that the FDA is considering rescinding its approval of Avastin for treatment of advanced breast cancer. If the approval is removed, use of Avastin for advanced breast cancer will be considered "off label." Use of Avastin for ovarian cancer treatment is already "off label" because Avastin has not been approved for treatment for ovarian cancer. Nonetheless, according to the Ovarian Cancer National Alliance, Avastin use is beneficial to some ovarian cancer patients.

Avastin is a very expensive drug, costing approximately $8,000 per month, and a decision to remove Avastin from the list of drugs approved for use in advanced breast cancer will undoubtedly mean that insurers including Medicare will decline to pay for Avastin treatment for women with either breast or ovarian cancer thereby making the treatment out of reach for many due to cost.

And the cost really is the crux of the issue. According to a report today in The Washington Post:

The debate over Avastin, prescribed to about 17,500 women with breast cancer a year, has become entangled in the politically explosive struggle over medical spending and effectiveness that flared during the battle over health-care reform: How should the government balance protecting patients and controlling costs without restricting access to cutting-edge, and often costly, treatments?

The cost of the drug is not supposed to factor into the FDA's decision to approve a drug for a give treatment. Nonetheless, experts acknowledge that it is hard not to consider the cost of the drug when considering Avastin. The bottom line should be the numbers, such as the number of months that a given treatment can keep the disease from advancing and whether the treatment reduces the risk of mortality over a given period of time. These numbers should be the basis of FDA drug approval. Early studies did show Avastin delayed tumor growth for an average of five months, but more recent studies suggest that Avastin's ability to delay tumor growth for advanced breast cancer may be modest, only one to three months. The FDA committee that recommended that Avastin's approval be rescinded determined that the risks from the drug, which include blood clots, digestive bleeding (including a hole in the stomach or intestine), and a long list of others, outweigh the modest life extending benefits from the drug. But patient advocate groups note that these numbers are averages and for some women, Avastin does make a difference in their life and their care. It seems to me that if this drug is beneficial to a group of patients it should be available to them and covered by their insurance. The difficulty is determining for whom this drug may be helpful and for whom it is a waste of money with potential deadly side effects. Having watched friends battle metastatic breast cancer, I know that options and hope are critical to these women.

As a consumer, it is hard to know what the right answer is but one this is clear, the FDA's decision on September 17th will be but the opening skirmish in the battle to control health care costs and treatment options.