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BY KATHY LATOUR | MARCH 7, 2012
Getting breast cancer at 37 was pretty terrible. I had a 1-year-old daughter who was the light of my life, and I guarantee that if you talk to any mother who is diagnosed with breast cancer, it's all about the children.
At first it was about me living long enough to raise her. I wanted her to be old enough to remember me. Then five years after I was diagnosed, my 72-year-old mother was diagnosed with a really nasty breast cancer.
At about that time, we started to hear about a breast cancer gene. I don't know when the reality hit me that my cancer might be genetic, but when I added 2 and 2 and came to the very frightening conclusion that, if I did have a gene, I could have passed it on to my daughter, I got very angry. Not my daughter.
When another gene was identified it was still too soon for me to consider being tested. She was only 7, and there was little I could do at that point. Then when she was a teenager, my brother was diagnosed with prostate cancer at 48. Then at 57, I was diagnosed with a second breast cancer in the other breast. It was time.
I tested negative, but the report said I was in a familial cluster or something like that. I asked my genetic counselor what it meant, and she said that there was something going on, they just didn't know what it was, and I would need to be alert for new tests and other ways to look at genetics.
Great news. As I lived my life after that, I kept up with what was going on and my daughter kept getting older. She graduated from college, got a job (hooray!) and had health insurance. On her first visit to the gynecologist, she filled out all the paperwork and the doctor had barely said hello before asking if I had been tested for the gene.
When she called me asking if I had been tested, I told her yes and that I was negative. Now it was up to her doctor to say what I hoped she would -- and she did. She would have to be her own advocate and keep abreast of information about genetics for her own health as well as getting mammograms early and do breast self-exam monthly starting now.
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BY KATHY LATOUR | FEBRUARY 3, 2012
First a recap. For the past four days we have been bombarded with information about the decision by Susan G. Komen for the Cure to remove funding from 18 Planned Parenthood sites, using the reasoning that they don't fund any organization under investigation. Well, within about 12hours it became clear that the decision came straight from the office of Karen Handel the new Komen Vice President of Policy and a former Georgia office holder and gubernatorial candidate who is anti-abortion and has even gone so far as to say she is anti-Planned Parenthood.
Now there is enough evidence to confirm that the decision to stop funding organizations under investigation was made in December specifically to stop funding Planned Parenthood, and again it was Handel that drove the decision. Komen has been down the Planned Parenthood path a number of times in the past decade and had made what everyone thought was a final decision–-it would be funded. But that was before someone recommended Karen Handel as the best person for the job of Vice President of Policy.
That person is known in the ranks of Komen as someone who mixes a particularly powerful batch of Kool-Aid that Nancy Brinker has become addicted to.
So where are we? Komen stands by its decision, but now Nancy Brinker goes on television to say it's a policy change to give money to direct service organizations, not pass through groups, which means they want to give the money to the groups that do the mammograms and Planned Parenthood evidently doesn't do that, they must send women out and then pay for it from Komen funds. So why the switch?
Personally, I think Nancy considered what their decision would mean for poor women in Dallas who go to Parkland Hospital, which, I am fairly sure gets Komen funds for its screening program and has been under investigation for two years – and found guilty, by the way, in areas that don't pertain to screening. And no one thought about this before? Komen is in a mess and this is where the broken hearts come in.
At the first headline, I blew it off. Komen has been a target before, a lot. They are big, they raise a lot of money, and the well over 100 affiliates raise money through the Race for the Cure, 75 percent of which is kept local for their own screening, education and treatment needs. This money reaches the very poorest of the poor and the women who work tirelessly for Komen affiliates make a real and tangible difference in the lives of these women. These are the salt of the earth of the American heartland where women are proud to take care of each other and dedicate thousands of hours a year to do just that.
Speaking around the country at Komen events, I have met hundreds of Komen volunteers and I would be proud to call any of them a friend. I have never asked anyone if she was a Democrat or Republican or if she was for or against abortion.
With the 25 percent the national foundation receives they fund numerous other projects including basic research, and as a 25-year and 7-year survivor, and a woman who lost her mother to breast cancer, I count on research to be sure my daughter doesn't have to face this disease, and if she does, she lives through it.
I have been president of the board of two nonprofits funded by Komen, one, the Bridge Network, provides direct support to women diagnosed with breast cancer who have no insurance. The other was Gilda's Club North Texas, now Cancer Support Community. These programs would have had a much harder time without Komen.
But what has really broken my heart this week is talking to the women who built the foundation, some of whom spent upwards of 20 years committed to this cause. The woman who created the policy office at Komen, a survivor herself, spent endless hours in the halls of Congress during her 10-year tenure, which ended in 2008. She worked both sides of the aisle to overcome any idea that Komen was politically driven. She also convinced the leaders of our country that this organization was about more than pink ribbons, it was about the power of the vote. She organized advocacy groups before we understood what advocacy was about. For 10 years she grew the office, only to watch the newest occupant, who has been with Komen nine months, bring it down in two days.
These were strong women who wouldn't take no for an answer, just the way Nancy Brinker wouldn't when she started the organization as a promise to her sister. There are some of the "old guard" left, women who took Komen to the heights in the nonprofit world to make it what it was on Monday of this week: An organization committed to ending breast cancer that was built on integrity and very decidedly non political – because breast cancer doesn't care what you believe, it is an equal opportunity killer. There is no place for politics at Komen.
There are many of us who fear that Komen will not be able to recover from this in part because of the way it has been handled. If I had been Karen Handel, I would have offered my resignation immediately, and I was hoping she would have the honor to do that. Then I saw the retweet she posted, "Just like pro-abortion group to turn cancer orgs decision into a political bomb to throw. Cry me a freaking river" and feared the worse. This woman has no grace, no courage and an ego that doesn't care if she brings down in nine months what it took others 30 years to build.
Resign Karen. You owe it to a lot of people.
1:27 p.m. Nancy Brinker has made a statement that includes the following
"We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligiblity to apply for future grants," Nancy G. Brinker, the agency's ambassador, said in a statement.
So Handel is still there and to shut down the firestorm, PP can apply. This does not mean they will be funded.
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BY KATHY LATOUR | NOVEMBER 21, 2011
This weekend I was surrounded by 40 powerful women, all mothers, all breast cancer survivors. We gathered in Atlanta, the home base of Kids II,a Georgia-based company that makes infant toys and educational products. Since 2007, Kids II has identified eight Pink Power Moms annually from around the country, women who have made a difference since their diagnosis. Kids II honors the women by supporting the nonprofit of her choice.
These women were nominated because they have created solutions where they saw need in their communities. One mom decided there needed to be waiting rooms for the children, another decided to create a program for young women and another created Breastfriends, which teaches friends and family how to support a person with cancer.
What is wonderful about these initiatives is that they are locally grown and supported and reflect the energy of women.
The programs are as varied as the women, who come from more than 20 states. You can read about each one and her mission on the Kids II website.
I was particularly impressed with the organization created by Mary Ann Wasil Nilan. She was initially diagnosed in 2004 and founded the Get in Touch Foundation to educate young girls about breast cancer and encourage breast self exams. She created an interactive tool called the Daisy Wheel that is aimed at girls in grades 5 to 12 to encourage BSE. Since launching the Daisy Wheel earlier this year, it has been downloaded globally. Nilan, the mother of three, was named the Pink Power Super Mom by Kids II this year, an honor that brought with it a $20,000 check for her endeavor. Nilan brought her daughter with her for the weekend, as many of us did, and it was hard to know that she is also dealing with a recurrence this year in her spine and bones. But, it has yet to slow her down.
In all these women, many of whom are metastatic, comes the power for change. And that is strong stuff.
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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 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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