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BY KATHY LATOUR | DECEMBER 13, 2010
One of my goals for this year's SABCS was to get a sense of where we are from those who have been coming to this meeting for a number of years.
The result was somewhat predictable in that the physicians see more progress than the advocate/survivors – except perhaps for those survivors who have benefited from one or more of the findings in the treatment area over the past 10 years.
Overall, the physicians see progress in diagnostics and treatment - two areas summed up by Debu Tripathy, MD, professor of medicine and co-leader of the Women's Cancer Program at the University of Southern California Norris Comprehensive Cancer Center, and John Pippen, MD, a medical oncologist at Baylor Sammons Cancer Center in Dallas.
Tripathy, who is also editor-in-chief of CURE, has not missed a meeting since 1989 when he began attending as a fellow.
"Many things have happened that have made an impact," he says. "There has been progress, definitely more than in the preceding 20 years. In the last few years, we have two drugs for prevention that have been approved and better imaging techniques - neither perfect but progress. We have shown that preventive surgery helps women with the BRCA1 and 2 mutations. We have approved new treatments in the adjuvant setting that improved outcomes: taxanes, dose-dense therapy and Herceptin for HER2-positive cancers. These have lowered the risk of recurrence to only 10 to 15 percent - half of what it used to be. 0ur biggest challenge is still metastatic cancer."
John Pippen, who has been attending for 15 years, points to molecular information as the greatest breakthrough.
"The last two or three years, I have come away feeling much more positive. The era of molecular medicine means being able to look at a tumor ahead of time to maximize the effectiveness of treatment. This minimizes toxicity and cost."
On the other side, Susan Love, MD, was pessimistic about the meeting, wishing more of the research looked at the causes of the disease and how to stop it.
"We are stuck in trying to make the treatments the best we can instead of finding the cause and stopping it," she says.
Love's sentiment was voiced by many of the advocates, who are asking for information about prevention for the next generation when their daughters may face the risk of developing breast cancer.
But as Dr. Tripathy points out, it's at SABCS where all the disciplines come together to learn from each other in hopes of going home with new ideas about ways to end this disease.
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BY KATHY LATOUR | DECEMBER 12, 2010
One of my favorite things about covering advocacy at the San Antonio Breast Cancer Symposium is that I get to see old friends.
Many of you will remember Brenda Hutchison from 2007's and 2008's profiles. Brenda was diagnosed in 2003 with HER2-positive breast cancer at age 44 and has traveled the difficult path of brain mets, which one-third of HER2 patients experience.
At the beginning she did standard chemo. Then when brain mets showed up in 2007 she began Tykerb and Xeloda and got a total response, and by October of that year her scans were clear. Over the next 18 months, it was a matter of the brain spots going to sleep, being dormant and then waking up. Each time there was IMRT stereotactic targeted radiation to zap them with.
The year 2008 brought old spots back to life and a new regimen, and when we met at SABCS in 2008 her new scans had just come back; no cancer was visible.
Each year Brenda has attended SABCS on behalf of the HER2 Support Group. Her voice and journey have become a strong message for other HER2-positive women.
At Thursday's Hot Topics session, Brenda slipped into the chair next to me, and we had one of those wonderful moments of reconnection. In that one moment, I knew we were making progress in treating women with metastatic breast cancer because Brenda was well and happy. She later filled me in the latest chapter of her life.
This year Brenda was stable until April when her tumor markers went up and scans showed a new spot on her adrenal gland and a node in the chest area. Radiation took care of the mediastinal chest spot, and she switched from one aromatase inhibitor to another. Her oncologist said it was time to look for another systemic therapy.
Luckily her timing could not have been better because since early this year a new drug, T-DM1, has been in clinical trials for women with HER2-positive breast cancer. T-DM1 is actually what is being called a super version of Herceptin because it combines Herceptin (the T is for trastuzumab) with a new compound DM1. Results of trials released at SABCS confirmed that this was the drug for her.
Because the drug has not been approved by the FDA, Brenda began the very tedious work of trying to be accepted for compassionate use of T-DM1. That effort has become a full-time job for the past few months as she jumps through the hoops required for admission, but she is hoping she will be accepted soon, in part because of some very positive discussions at SABCS. In fact, she is well-known now among the researchers at SABCS as "the woman from Austin."
Despite the energy it has taken to make the compassionate use happen, Brenda's energy is good. She and her husband continue to travel, going to Europe last winter, and she continues to work as much as her disability will allow.
And she remains a beacon of hope to other women who need inspiration and proof that life can be lived fully no matter the diagnosis.
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BY KATHY LATOUR | DECEMBER 10, 2010
When choosing Alamo Breast Cancer Foundation patient advocates to profile this year, I looked for women with different stories to tell, such as Kat Werner's BRCA background and New Zealand's Moana Papa, whose passion is helping the indigenous women in her country.
Tomorrow you will read about Sueann Mark, PhD, a sexologist in San Francisco, who began specializing in the sexuality issues of cancer patients after her own diagnosis at 34. Then you will read about Rochelle Schoretz, who founded Sharsheret, the national organization for young Jewish women with breast cancer.
After writing up the day's profile and interviewing Sueann, I attended the Alamo Breast Cancer Foundation Hot Topics session when mentor physicians go through the days' presentations and summarize the high points. I glanced around the room during the discussion and was amazed at the number of young women. At past SABCS meetings, it didn't seem there were this many.
After the Hot Topics session, I attended a survivorship panel focusing on young women with breast cancer that was moderated by Olympic gold medal winner Scott Hamilton, who was diagnosed with testicular cancer in 1997.
I give you this blow by blow of my day to take you to that moment when I was digesting all the information as I headed back to the hotel at the end of the day. First I realized that I had chosen mostly young women to profile. As I considered this, I felt something tugging at my subconscious.
Rochelle was diagnosed at 28. My daughter Kirtley is 25. It stopped me in my tracks. When I was diagnosed in 1986 at age 37, Kirtley was a year old. What kept me awake at night was the fear I would not live to raise her. As the years passed, the fear subsided. Then in 1991, five years to the week after I was diagnosed, my mother was diagnosed with metastatic breast cancer. She died six months later. Kirtley was 6.
Her death and the growing awareness of genetic predisposition to breast cancer brought my focus once again to Kirtley. Would I live to see my daughter get breast cancer? The fear I had felt in the past for her was about losing me. This fear was for her life, and I connected for the first time with my anger at this disease and the snail's pace we have made in understanding why women get breast cancer. Because Kirtley was only 6 when my mother died, it was easy to put my fear for her on the back burner. It came up again when I was diagnosed with DCIS in my other breast in 2007. I had decided to be tested for the BRCA genes when Kirtley graduated from college, feeling she needed to be 21 to make a decision on what to do if I tested positive. My ductal carcinoma in situ (DCIS) diagnosis caused me to move that date up a year. Luckily I was negative for both genes. But, as the genetic counselor pointed out, we are part of a familial cluster of some kind; it just hasn't been found. That was three years ago, and again I was able to put my concern for Kirtley on the back burner.
Now the reality of my daughter's risk is again hitting me. I know that young women are still at much lower risk for breast cancer, but that does little to lessen my concern. Luckily I have a daughter who is taking good care of her health. She now has her own gynecologist in New York who took her history and then immediately asked her if I had been tested.
I am also going to suggest to Kirtley that she join the Love/Avon Army of Women – and look at the possible studies that are giving us more information about every aspect of breast cancer, including undiagnosed women and prevention. Dr. Susan Love talked about the army this evening and noted that more than 44,000 women have joined clinical trials through the army I also suggest all of you join.
(You can view our interview with Dr. Love on prevention and Army of Women here).
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BY KATHY LATOUR | DECEMBER 9, 2010
The first slide from every presenter at the San Antonio Breast Cancer Symposium indicates whether they have any conflict of interest, which translated into English means whether they are getting paid by a pharmaceutical company or anyone else for anything.
Last night at the symptom management educational session, which was packed, the speaker's slide said something to the effect that her topic, lymphedema and weight lifting, did not involve a drug and therefore was of no interest to anyone, so she had no conflict of interest. In other words, there would be no profit involved in what she did, except maybe for a few scattered personal trainers and the gyms where they work.
I think I might be getting jaded around the edges. I look at the presentations here and see lots of really complicated topics involving the use of drugs in every conceivable way. But in the midst of all these presentations, where are the researchers who are looking at prevention and the mechanisms that make a cell go haywire in the first place? Where are the studies on the issues that make it possible to live with, through and in spite of breast cancer? These are issues such as depression, pain, sexuality, fatigue and fear. Barbara Anderson's work showed clearly that stress reduction reduced recurrence by 20 percent. If that was a drug, it would be international headlines.
I don't want to malign research because I know it's critical, but can we make room for some of the other issues that are so critical to women living through breast cancer? Yesterday in Project LEAD, the opening speaker used a statistic to show how far we have come by noting that there were around 12,300 papers on breast cancer published in 2009 compared to more than 24,000 in 2010. I thought that sounded amazing until the next speaker from the National Breast Cancer Coalition asked whether that was a positive or a negative. Are we rewarding the right thing? Should papers and patents (read money) be the goal?
As a former academic, I know firsthand the importance placed on publishing. It is the standard by which teachers are measured. The same is true for researchers. They get funds, their institutions get publicity, and women, sometimes, get the results.
Let's celebrate those researchers and make room for studies on quality of life and survivorship.
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BY KATHY LATOUR | DECEMBER 8, 2010
This morning I joined the patient advocates of the Alamo Breast Cancer Foundation for Project LEAD.
Project LEAD is the National Breast Cancer Coalition's premier science training program for breast cancer advocates. The LEAD courses teach survivors what they need to know to serve effectively in a wide range of endeavors, from serving on education panels in their own communnity to helping determine where the Department of Defense awards research funds for breast cancer.
I took part in Project LEAD in the mid-'90s in Los Angeles where, for three days, around 40 survivors heard top scientists talk about studies, how they were set up and what to look for in basic science. I'll never forget meeting Mary-Claire King, PhD, the researcher whose work lead to the identification of the BRCA genetic mutations in breast cancer.
I never saw myself as someone who could do science, particularly after changing my college major when I broke everything in the freshman chemistry lab. Those Bunsen burners were complicated.
But I remember hanging on every word during that intense weekend in Los Angeles. It was great information, and I knew when I left that I could understand the basics, and that I would keep up with the studies from then on. Over the years, NBCC has added advanced LEAD classes, which is what the group this morning was taking. Many had already completed two or three of the LEAD options now available including the basic workshop, the LEAD Institute, a LEAD course on quality care, one on clinical trials and even one for global advocates. The attendees today were ready for the in depth discussion about how a primary breast cancer has one set of mutations but may have others when it metastasizes, meaning different treatment is needed – and once again pointing out the challenges of killing something that mutates as it moves.
Advocates heard a panel discussion with leaders in quality care, followed by NBCC President Fran Visco, who presented plans for Breast Cancer Deadline 2020, outlining how the project will identify the most important questions.
Far from passive, the advocates peppered all the speakers with questions during the question and answer session.
It made clear the complicated issues of breast cancer and the challenge of ending this epidemic once and for all.
But when I hear these women speak I am filled with hope. These advocates are a stellar group: committed to their constituents and the issues they face.
If you haven't heard of Project Lead, I encourage you to find out about the next workshop and sign up. You won't be sorry.
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