Dr. Gordon in Action

 On Saturday afternoon at the Joining FORCEs convention a packed room came to hear Dr. Ora Gordon, from Cedar-Sinai Health Center in Los Angeles, and Dr. Karen Hurley from Memorial Sloan Kettering Cancer Center in New York, speak about making decisions about managing hereditary risk for breast and ovarian cancer.  Many had brought along a copy of Positive Results and others said that their copies at home have been highlighted and marked with post-it notes.  All wanted to meet Dr. Gordon and see her in action.  Although I have not seen the surveys rating the speakers, I suspect none were disappointed.

Dr. Gordon has a friendly and clear way of sorting through the complex data that is risk analysis for high-risk women.  But beyond sorting through the maze of complex numbers, she discussed a recently published study she has done focusing on why high-risk women make decisions about surveillance and surgery.  Her study shows that beyond understanding the numbers, and we all strive to do that, the single most important factor leading a woman to choose prophylactic mastectomies is having a mother who has had breast cancer.  It seems that the decision to undergo preventive surgery is, at its heart, as much an emotional one as an analytical one.

This emotional journey toward decision-making is Dr. Hurley’s specialty and she spoke to us about the emotional journey of making decisions about chemoprevention, surveillance and surgery options.  She helped us understand the basis of good decisions and when and how to seek help.  She helped us understand how to engage our internal and external support networks and how to filter the well-meaning but perhaps unhelpful input from family and friends.

Thank you Dr. Gordon and Dr. Hurley for all you do to help our community.

A thank you to our readers

“That book!” exclaimed a woman sitting behind me. “I am here because of that book! I can’t tell you how great it is. It has changed my life.”

She is speaking of Positive Results and she is at a session at the 5th Annual Joining FORCEs conference on Making Decisions to hear my co-author, Dr. Ora Gordon, speak.

This sentiment has been replayed in dozens of conversations over our three days at the Joining FORCEs conference in Orlando. Women have told us how reading Positive Results has been transformative and empowering for them. They have told us how it has helped them feel less alone; how it has helped them understand their risk and their decisions; how they have sent copies of it to friends, family and even their doctors so that these people in their lives will better understand their high risk for hereditary breast and ovarian cancer and their emotional journey.

We have been touched by each of these conversations. Helping women at risk of breast and ovarian cancer (and ALL women are), especially those in the high-risk community, was our goal and we are truly honored to know that our hard work has been helpful.

Thank you for reading and thank you for sharing your experiences.

Up in the air

I am writing this blog from 35,000 feet (although clearly it will not be posted until I land and arrive at my hotel). We are on our way to the 5th Annual Joining FORCEs Conference in Orlando, Florida where this year Dr. Gordon will be a speaker.

Three years ago I went to the 2nd Annual Joining FORCEs Conference. That experience taught me a lot about the spirit of FORCE. I had had my exchange surgery only a couple of weeks before that conference and when I set off for Florida I was allowed to lift nothing heavier than five pounds. Needless to say, my suitcase weighed a lot more. I had wanted to go to the conference but did not know how I could manage travelling alone so soon after surgery. Two wonderful women came to my rescue, Linee and Freddy, who made sure I was on the same flights and who made sure I never carried my own suitcase or anything heavier than my small purse the whole trip. Their generosity and can do attitude made the trip not only possible but also a true pleasure for me.

Attending my first FORCE conference was transformative for me, as it is for many. Before the conference, FORCE was for me an informative website with well-organized information to help with decision making and a message board where I could interact with other faceless women with BRCA mutations who were struggling as I was with integrating risk and decision-making into their lives.

At the Joining FORCEs Conference the faceless took on faces and the abstract organization took on life and personality. I met women from all over the country and indeed all over the world who had converged on Florida to learn as much as possible about hereditary breast and ovarian cancer. And learn we did.

The Joining FORCEs Conference draws the top doctors and researchers in the field of hereditary breast and ovarian cancer. One of the most special things about the conference is the ability to not only learn from these specialists at their lectures but also to talk to them face-to-face in the hallways and at the roundtable breakfast on the second morning. This year’s conference will again be a transformative experience and has drawn top experts from around the globe. We know many of you will be at the conference this year and we look forward to meeting you. Please find us in the hallways or at breakfast and introduce yourself.

I remember sitting in a session at that first conference and listening to Barbara Pfeiffer talk about how to become more involved with FORCE. At that point I was unsure what my role might be with this organization, but I knew that it was a cause that deserved my efforts because of the difference it made in my life and the difference it was making in the lives of so many others. More than three years later I still feel the same way. This organization make a difference in the lives of many and it continues to deserve to be nourished by those who know the difference it makes in those lives.

Help FORCE win $250,000!

Many of you know that I am a big fan of FORCE, Facing Our Risk of Cancer Empowered, the organization dedicated to helping women and families like me who are at high risk for breast or ovarian cancer. FORCE’s mission statement is:

“To provide unbiased information and resources regarding hereditary breast and ovarian cancer. To provide support to families and individuals affected by hereditary breast and ovarian cancer. To raise awareness of hereditary breast and ovarian cancer. To advocate for the community affected by hereditary breast and ovarian cancer. To promote research specific to hereditary breast and ovarian cancer. To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer. “

FORCE is an amazing organization. For those of you who have read Positive Results, you know that the women I met through FORCE helped me realize that preventive surgery, while drastic, was an entirely reasonable way to deal with being at high risk for breast and ovarian cancer.

Three years ago I joined Linee Zajic as an additional outreach coordinator in Los Angeles. Linee and her sister had launched the local Los Angeles group a few years earlier and they met every few months at a local restaurant. I had attended a few of these meetings but had thought that they would be more intimate if they occurred in a home, so I called Linee and offered to host the next meeting at my house. We had fifteen women in my living room for that first meeting three years ago. Our meetings have grown and now we routinely have between 35 and 50 people, both men and women, attend. The strength, power and camaraderie of this group is an amazing thing to behold, although quite frankly we are outgrowing the space available in my home.

One of the amazing things about FORCE is that it is able to do so much with so little money. FORCE is an all volunteer organization with only a couple of paid part-time staff. Yet it puts on a first class conference (happening this week in fact!) each year and reaches millions of people through its website, informational brochures provided to physicians, and direct one-on-one contact, and support for important research for our community.

I always feel good about my donations to FORCE. I know that not a dime of what I send them wasted.

And now, the important part:

We have an opportunity to help FORCE raise substantial funds to allow it to move forward with its critical mission AND IT WILL NOT COST YOU A DIME!

Here is the deal:

Chase bank has a community giving program where they will donate a total of $5 million to 200 charities. The process of deciding which charities are the most worthy will be totally democratic. And the voting takes place from now through July 12, 2010 on FACEBOOK.

Here are the steps you need to take:

1. Log in to your FaceBook account (or create one if you have not yet joined!)
2. Go to the Chase Community Giving page and search for Facing Our Risk of Cancer Empowered. Or even better, get there quickly by clicking here.
3. Click on the green VOTE NOW tab at the top of the page.
4. Let all of your friends know you have voted by sharing on your page and sending them messages encouraging them to vote too.

Remember this is a word of mouth campaign, the reward for FORCE is big and to cost to you is mere moments of your time.

Thank you! And if you are coming to the conference please look for us!

Joi

Unaswered questions

I spoke a couple of weeks ago at a women's conference. During the question and answer period after my talk I was asked a question that might very well be the one of the most frequently asked questions whenever we speak. And it is certainly one that Dr. Gordon fields constantly.

"Could the test be wrong?"

Women who test positive often ask this question as they want reassurance that the tough choices that they face are really necessary.

But this was actually not the question I was asked. The woman who asked me if her test result could be wrong had tested negative. Yet she had several markers that increased her risk of being BRCA positive, including the fact that she has had breast cancer twice, once in each of her breasts. What she wanted to know was if the test could have wrongly identified her as negative. This test has little chance of being "wrong" because Myriad has stringent quality control standards. But this is not the end of the issue.

This story is a good reminder of the need for good genetic counseling, and for the need to follow up with your genetic counselor if your circumstances change. This woman, who for the purposes of this story I will call Ava, had seen a genetic counselor after her first breast cancer, which is when she tested negative. But she had not been back after her second breast cancer diagnosis. In the intervening years Myriad has developed the BRACanalysis Large Rearrangement Test, known as BART, which identifies mutations on the genes that are large rearrangements of sections of the DNA. These are mutations that are not identified by Myriad's standard test. This additional test might reveal a mutation that could not have been identified at the time of the earlier testing.

The other thing to remember is that the BRCA genes are not the cause of all breast cancer or even the cause of all hereditary breast cancer. Only about 10 percent of breast cancers can be attributed to the BRCA genes. And only about half of hereditary breast cancer is due to these two genes. We do not yet know the genetic cause of these other hereditary breast cancers. Research continues to seek new genetic links to breast cancer and someday soon we hope to know more. In the meantime, if you have tested negative for a BRCA mutation but have a strong family history of breast and/or ovarian cancer, stay in touch with your genetic counselor at least once a year to ask if there are any new developments that might be important for you.

Family Time

I have not had much time to post this week, nor will I for a while. My kids are busy with end of the school year and beginning of summer activities. I have two sons. One is a musician and the other a musician and an athlete. My younger son's little league team had had an incredible year and they are now in a district-wide tournament of champions that will start this Saturday. He will also be on an all-star team that will begin its post-season play just after the tournament of champions. Lots of baseball in my house. My older son has a series of spring concerts this week and both boys have music recitals next weekend. My parents have come into town to see their grandchildren but mostly to get in on the concerts, recitals, and some baseball games. It seems there is something every night right now.

This time of year is also busy for the release of new research studies. Last week was the annual meeting of the American Society of Clinical Oncology (ASCO). There were a number of interesting new studies for both breast cancer and ovarian cancer presented at ASCO this year. We will delve into these new studies in the next few weeks.

In the meantime, enjoy your summer!

Joi

Join us at the Joining FORCEs conference!

The Annual Joining FORCEs conference is coming up June 24-26, 2010 in Orlando Florida.  We will both be there and Ora will be speaking at a session on Saturday.  Her topic is "How do I decide? Making decisions surrounding hereditary cancer."  We will both be available to sign books at the roundtable and networking breakfast on Saturday.

There are a number of reasons why you should make every effort to attend this conference:

• It is the largest gathering of high risk women (and men) anywhere!
• It is the only place where you can have total face-to-face access with the top researchers in the field of hereditary breast and ovarian cancer.  You can ask your questions not only to Dr. Gordon but also to Dr. Stephen Narod, Dr. Judy Garber, Dr. Noah Kauff and others!
• The largest "show and tell" on the planet!  If you are considering mastectomy and reconstruction and find the array of choices mystifying, this is your chance to not only talk to a number of the top reconstructive surgeons in the country, it is your chance to talk to and see the results of countless numbers of women who have had every type of surgery imaginable.  
• Find out about the very latest research.  Top researchers from around the world not only attend but often talk about studies and research that has not yet even been published.
• Learn about standard of care and cutting edge options for managing risk.

You can find out more about the conference here.

There is still time to register!  We hope to see you there!

Joi & Ora

The beginning of the journey

Four years ago this week my mother went to have her blood drawn for her BRCA test. To be honest, we wanted the test done because she was so young at the age of her breast cancer diagnosis but we did not really expect a positive result. I guess we were looking for reassurance that her cancer was not something that would put me at risk. Or at least that is what I was looking for at the time.

My parents live in a beautiful resort community on Lake of the Ozarks and the nearest major cancer center is 90 miles away.  This is where my mother went for her genetic testing.  She had her blood drawn and made an appointment for mid-July to receive her results. As this time approached, we spoke by phone. Mom said how she wished I could be there with her when she received the test results and I agreed. Mom and I are close and I really did want to be there with her for this news. But I live in California and Mom is in Missouri. I was planning to take my kids to see their grandparents a few weeks later and an additional trip was just not practical.

One Sunday morning a few days before Mom was slated to learn her results the phone rang. My husband had just left for the gym and I was headed to the shower. When I picked up the phone all I heard were my mother's sobs; she was unable to speak. My father has had multiple heart surgeries and my mind raced to a horrible conclusion: something had happened to my father. My conclusion was wrong but the reality was equally horrible, my brother had been admitted to the hospital that morning and was not expected to make it to the evening.

"I'm on my way," I said.

I called the gym and had my husband paged; then called someone to help with the kids for the next several days; then booked the first flight from Los Angeles to Kansas City. Four hours later I was packed and on an airplane to Missouri. Fortunately, by the time I landed my brother was stable and his prognosis much improved.

I spend the next few days doing the vigil outside the ICU with my parents. As my brother improved, my father deteriorated. The first day or so we blamed his discomfort on stress but by the third day it was clear that despite his objections, he needed to go to the doctor. The day my brother was released from the ICU we convinced him to go. His doctor sent him immediately to the ER for tests because he had had a heart procedure only a few weeks before. A battery of tests revealed that his heart was fine. But his pain was unrelenting and the search for the cause continued.  By the end of the day, the doctors suspected that the problem was his gall bladder, although further tests would be conducted to confirm the next day. The next day, however, was the day my mother was due to make the long drive to the cancer center to receive her BRCA test results.

Mom and I sat in the hallway of the local hospital while my father was having a CAT scan of his abdomen.

"I wish you could go with me," she said.

"I wish I could be there, but someone needs to be here to stay with Dad," I said. By that time my father's pain level was so high that he could barely speak and one of us had to make sure the nursing staff brought him pain medication regularly. Leaving him alone to go with my mother was not an option. And my brother was in a different hospital more than an hour away.

She left before my father returned from his CAT scan and I sat alone in the brightly lit hallway of the hospital feeling guilty for not going with her. She should not have to hear this news alone.

By this point, although we did not really expect a positive BRCA test result, we had vocalized the fact that two other things had gone wrong that week and assuming the old wives tale was correct about bad things happening in sets of three, the news could well be bad. The analysis was not particularly logical, but we were feeling rather downtrodden at the time.

Mom promised to call me immediately after her appointment, then she was going to the other hospital to see my brother before returning home. I promised to call her as soon as we had the results of my father's tests. I called her before she reached her appointment to tell her Dad had multiple large gallstones but the doctors had said they could not operate because Dad was still on blood thinners from his most recent heart operation. The doctors would come up with a plan of action and talk with us later in the evening.

Two hours later my cell phone rang.

"Hello, Mom?"

"The test was positive for BRCA2."

Mom sounded shaken and I felt terrible. She should not have had to hear this news alone.

"I'm so sorry Mom."

"I can't think about this now," she said. "I am going to see your brother and I will call you when I am on the way home."

Later that night, we sat in Mom's living room and talked for hours. We had so many things to research and, quite frankly, the BRCA mutation in our family was the least immediate of the three. It has turned out, however, to be the most long lasting of the medical crises of July 2006. My father and my brother have both had full recoveries. Mom is doing well, although she has endured multiple surgeries to try to preempt any future cancer diagnosis. As for me, I tested positive for Mom's BRCA2 mutation a few weeks later and have had prophylactic mastectomies.  And I am nearing making a decision about my ovaries.

More on that later,
Joi


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