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Elizabeth Edwards, Her Oncologist & SABCS

Sunday, December 12, 2010

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There is more than a little irony that the death of Elizabeth Edwards coincided with the beginning of the most prestigious breast cancer symposium in the world. “The death of Elizabeth Edwards underscores why we’re here,” said one of the first speakers at the 33rd Annual San Antonio Breast Cancer Symposium (SABCS). “We are winning the battle on breast cancer!” Tell that to Elizabeth Edwards’ family, I thought. I don’t think they would agree with that, and after sitting through five days of this symposium, I’m not sure I agree with that statement either.

I was fortunate enough to have crossed paths with Elizabeth Edwards a couple of years ago when I asked her to write an essay for my book, “The Breast Cancer Sisterhood: A Guide to Practical Information & Answers to Your Most Intimate Questions.” <PREVIEWEND> I identified with her on many levels: we were the same age, daughters of military pilots who, as Elizabeth said, “Gave us the ability to reach out to others and make life-changing connections.” We were diagnosed and began treatment about the same time and were professional women who’d been married to powerful men who’d let us down. To say Elizabeth Edwards was “amazing” would be an understatement.

At the SABCS, I interviewed Dr. Lisa Carey, Elizabeth Edwards’ oncologist for the last five years. “She uniformly demonstrated grace under the worst of circumstances and a remarkable desire to use her misfortune to help others,” Dr. Carey said. “Like many people, I was often surprised and always impressed by her resilience, which was as evident in private as it was in public.”

“One of the first things Elizabeth did as a newly diagnosed breast cancer patient was to participate in a clinical trial in which tumors were collected so that scientists could try to understand why some cancers respond to treatment, while others do not,” Dr. Carey said. “Her life was marked by many such acts of selflessness, but I mention this one in particular because only through this kind of partnership between patients and researchers will we finally end cancer.”

There wasn’t as much good news at this symposium as I’d hoped for, plus there was a significant lack of psychosocial research that addressed areas like depression and sexuality. Here are some of the understandable bits and pieces I’ve managed to cobble together from a small sampling of five days of nonstop presentations. Keep in mind I’m just a layperson with chemo brain, so forgive me for the things I’ve missed and/or misunderstood:

• Duration of survivorship with metastatic disease is increasing.
• A new cytotoxic, Eribulin, is on the scene.
Biomarkers may predict how well drugs work in patients and compare different drugs to each other more quickly.
Stress reduction may reduce recurrence by 20%.
PARP Inhibitors may be a new way to target & repair damaged DNA in BRCA1 and 2.
Circulating tumor cells can be a useful tool in metastatic breast cancer.
Re-biopsy should be a part of metastatic evaluation so you know what you’re treating.
HER2 has an increasing number of treatment options which have the potential to become too complicated and expensive for patients.
• Obese women and those with positive lymph nodes have higher risk of recurrence.
• One third of estrogen positive early breast cancers returns.
• Many oncologists view genetic testing as a hassle.
• 70% of doctors don’t understand genetic testing implications for the patient’s family members.
• Best outcome for women carrying BRCA genes is a mastectomy at age 25 and oophrectomy at 40.
“Beam me home, Scotty!” Breast cancer tumors may send out signals that attracts growth mechanisms.
• We don’t know the difference between cure and dormancy.
• 65-70 percent of American women with metastatic breast cancer will spread to the bone.
• Avastin costs $90,000 a year, per patient, and does little to stop early or locally advanced breast cancer.
• Women with breast cancer need to pray and hope they’re one of the genetically lucky ones who’s cancer doesn’t metastasize.

Over the course of the San Antonio Breast Cancer Symposium, I’ve been hoping to hear something in plain English that would tell me where the war on breast cancer stands, hoping to hear that Elizabeth’s death and the deaths of everyone else has not been in vain. Elizabeth Edwards was more than a sister in our fight against breast cancer. She was the face of hope for everyone who’s experienced a devastating loss or a serious illness. In many respects, we lost part of our hope when she died, but like Elizabeth, I think most of us are resilient. We must embody some of her courage and move forward, regardless of what the statistics say, or maybe because of what the statistics say. I am going to leave you with some advice Elizabeth gave to me:

“Cancer doesn’t have us. We have cancer. Cancer doesn’t own us. We own us. We decide how we are going to face this disease, how we are going to live each day. Inspired by my marvelous family, by the doctors, the nurses, the technicians, the caregivers, and most of all by my brothers and sisters in this struggle, I decide that today I am alive, and I decide not to waste today worrying about tomorrow.”

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Previous Comments
Anonymous commented on 13-Dec-2010 05:07 PM
Brenda, You are so lucky to have the opportunity to meet so many people, including Elizabeth. I am lucky because I get to hear about these things now through blogs like yours. I was really hit hard by her death for so many reasons. I, too, had to post about it today. I didn't like some of the points you brought away from the cancer symposium, like the one that says one third of estrogen positive cancers recur, mine was estrogen positive. Also, hearing that so many oncologists feel genetic testing is a hassle, what is up with that?? Hassle for who? And that 70% of doctors don't understand the implications such testing has for families. Again, unacceptable. It seems as if it was pretty pessimistic, am I wrong? I'm all for prayer and hope, but I'd like more scientific advances and movement that bring us closer to a cure and better treatments. Thanks for sharing and being the eyes and ears for the rest of us at these events.
Anonymous commented on 13-Dec-2010 09:52 PM
Brenda U'r just like us useing these laymans terms. Doctors see thing there way as we have the last say; or do we realy know which witch is whitch. It's just like this disease to change it's direction on us. NOTHING in life is everlasting. Even pain. Six so short years for our dear sister Elizabeth may she rest now in peace.
Anonymous commented on 14-Dec-2010 04:21 AM
It is wonderful to read your post today as you blog from the coal-face as it were :-) So fascinated by the fact that you spoke with Elizabeth's oncologist too and could report back to us.

I am really interested in your comment that there was "significant lack of psychosocial research that addressed areas like depression and sexuality". Kathy Latour also noted that although presentations on breast cancer screening, treatment and translational medicine abounded at SABCS, where were the quality of life studies? Where were the clinical trials on survivorship?

I thought we had progressed more - or is it just us advocates and bloggers who are addressing this issue?

Anonymous commented on 14-Dec-2010 07:56 AM
Brenda this is a great post and I appreciate your being able to bring us the news in a way that we (the actual people they are talking about at the conference) can actually understand. With that said I remain underwhelmed at our progress in combatting this disease. Your last point.. "Women with breast cancer need to pray and hope they’re one of the genetically lucky ones who’s cancer doesn’t metastasize." just drives home the fact that for many of us, including Elizabeth Edwards, a breast cancer diagnosis is not the chronic disease that the cancer industry would like us to believe. Ramping up the fight to achieve some REAL AND MEANINGFUL results cannot come fast enough for my money. I am looking forward to hearing what the National Breast Cancer Coalitions 2011 symposium on metastatic breast cancer will bring us.
Anonymous commented on 14-Dec-2010 11:44 AM
Did an oncologist read your blog before you posted it? I just want to make sure your information is accurrate. I found it kind of sarcastic and scary at the same time.
I just finished 10 months of cancer and radiation treatments along with a double mastectomy. I have Invasive Lobular Breast Cancer stage 3 b. I am taking Arimidex and I am obese. According to what I read on your blog I don't have much of a future to look forward to. :(
Anonymous commented on 14-Dec-2010 02:40 PM
Thanks for the insightful summary of the symposium, Brenda. It is wonderful that you have taken such an information/medical jargon-packed event and boiled it down for us in simple terms.

I agree that doctors need to look at the whole person; it's not all about chemo. However, I remain optimistic about developments.

My oncologist, Dr. George Sledge, who spoke at the conference and is the president of the American Association of American Oncolgy, just told me there are about 100 breast cancer drugs in the pipeline. And they are finding things that are less toxic so we can live healthier lives.

As someone with metastatic disease, this is important because that means I will have options until they find a cure. In the meantime, I will continue to take care of myself in body, mind and spirit; and try to spread hope and inspiration. I agree it gets frustrating that a cure is not at hand sooner, but it is getting better. I believe hope is a powerful drug, even more powerful than chemo.
Anonymous commented on 14-Dec-2010 07:37 PM
Dear Anonymous,
I share your fears and concerns about all of us with breast cancer. Cancer is an insidious disease that seems to raise more questions than we have answers. Please know that each one of my bulleted points were "direct quotes" from oncologists and top cancer researchers from around the world. I did not add, detract or embellish any of them, plus I found them scary as well & the "Beam me up Scotty" comment didn't sit well with me either. As far as being obese, I would hope your oncologist would have talked to you about the link between diet, exercise and the risk of recurrence, as well as an increased risk for heart disease, diabetes and other cancers. You might want to do some research on your own as well as check out an older blog of mine called "Are You Gaining Weight or Gaining Estrogen?"

The purpose of is to inform and empower women who have, or have had, breast cancer. I can't promise you will always like what I write, but it is evidence-based, not just my opinion. It is my hope you will take this information and use it as tools and weapons with which to fight your cancer. In addition to surgery, chemo, radiation and adjuvant therapy like Arimidex, our lifestyle plays an important role. You have more power than you know, and when you act on that power and make choices that are in your best interest, it will give you more hope and a better frame of mind, which in turn, positively affects your immune system. You have choices to make. I hope you make them good ones. XOXOXO, Brenda
Anonymous commented on 14-Dec-2010 08:44 PM
I was stunned and profoundly sad when I heard Elizabeth Edwards died. She really lived and died with grace in such a public venue. Don't you know that must have been so difficult?

Attending the SABCS was not a new experience for me, but this time, I had a "dog in the fight," so I think I heard & reported things & lingo that the usual oncologist/research attendees though commonplace. Up until recently, medical conferences have only been attended by doctors, researchers and the few members of the medical press. As time goes on, there's bound to be more people like me who attend these events & I'm wondering if patient advocates, who blog and are social media savvy, will have any affect on the way researchers choose areas of study. I can only hope that the influx of new advocate voices will give rise to the pursuit of research in areas that are truly viable and well thought out in some kind of coordinated effort, & not just to get grant money or get published. StandUp2Cancer's mission is to bring researchers, studying the same thing, from different parts of the world, together in an attempt to reduce duplication of efforts and facilitate brainstorming in more productive areas. Next year, I hope we can get a coordinated group of patient advocates together, each of whom, will cover a specific area, thereby giving more in depth reporting on each area. Brenda
Anonymous commented on 14-Dec-2010 09:36 PM
Sometimes I think of cancer as the best undercover spy: You won't know it's there unless it wants you to. Even though Elizabeth only lived six years after being diagnosed, we need to know that our breast cancer is different from one another & our outcomes are different. Let's not forget how powerful our mind/body connection is. We each have every reason to hope we will live to be old women, or as my oncologist jokingly says, gets hit by a bus. XOXOXO, Brenda
Anonymous commented on 14-Dec-2010 09:55 PM
You've hit on something so important! Patient advocates view survivorship in a more holistic way than do the medical side of cancer. We are more concerned with proactive things we can do to lessen our risk of recurrence, draw strength from our mind/body connection, want answers to sexual dysfunction issues, and we always seek quality of life. Researchers and oncologists look at "survivorship" as living 2.5 months longer by taking one drug instead of another. For them, I think survivorship is more about quantitative, measurable statistics where patient advocates see the people behind the numbers. Someday I hope WE have the opportunity to teach THEM what true survivorship is. XOXOXO, Brenda
Anonymous commented on 16-Dec-2010 10:00 AM
Check out qigong—Chinese mind/body exercises as an adjunct to traditional treatment.

Employing the mind/body connection helped me immensely in my successful battles with four bouts of supposedly terminal bone lymphoma cancer in the early nineties. I practiced standing post meditation, one of the most powerful forms of qigong--as an adjunct to chemotherapy, which is how it should always be used.

Qigong kept me strong in many ways: it calmed my mind--taking me out of the fight-or-flight syndrome, which pumps adrenal hormones into the system that could interfere with healing. The deep abdominal breathing pumped my lymphatic system—a vital component of the immune system. In addition, qigong energized and strengthened my body at a time when I couldn't do Western exercise such as weight-lifting or jogging--the chemo was too fatiguing. And it empowered my will and reinforced it every day with regular practice. In other words, I contributed to the healing process, instead of just depending solely on the chemo and the doctors. Clear 14 years and still practicing!

Anonymous commented on 16-Dec-2010 10:38 AM
As a breast cancer survivor ,I can never assume that it will never come back.Elizabeth Edwards was the perfect example.Even though her disease was more advanced,the cancer cells can stay dormant for many years and resurface at some point.My oncologist says that after 20 years, one can assume that they are cured.That's an awfull long time to live with that kind of fear! I truly believe that stress has a lot do do with the initial diagnosis and recurrence.When we are under stress our body cannot fight off the cancerous cells.
Anonymous commented on 16-Dec-2010 10:57 AM
That was a fantastic summary of the event. There has been some great progress this year and much more to come in the future! Right now the Cancer Support Community - Breast Cancer Registry is making great headway in identifying the social and emotional needs of men and women with breast cancer throughout their journey. Some preliminary findings will be released in just a few months. It will be interesting to see how the findings impact next years symposium as well as the support offered across the board. Building on the comment about winning against breast cancer: together, we can and will win the battle against breast cancer!
Anonymous commented on 17-Dec-2010 01:23 PM
Brenda, this was a great summary of the symposium. Thanks so much for this! I would love to go and report, as well. Would love to be one of those who can go to give in-depth reporting in each area as you described. I am so glad I got to meet you at the LBC retreat. I had no idea you had a blog until after the retreat! Hope I have the chance to know you better in the future. :) God bless you and hope you have a very merry Christmas!
Anonymous commented on 17-Dec-2010 05:23 PM
Anna R,
Thank you for brings the 2011 NBCC to my attention. I think it's probably a must for every breast cancer advocate. Let's make our voices heard on Capital Hill.
Anonymous commented on 17-Dec-2010 05:27 PM
Dearest Tammy, Hope is, indeed, a powerful weapon in the fight against breast cancer. How fortunate you are to have Dr George Sledge as your oncologist. I hear him about the 100 new drugs in the pipeline. They can't get here soon enough, can they? XOXOXO, Brenda
Anonymous commented on 17-Dec-2010 05:35 PM
Bob, I love your comments about QiGong and the mind/body connections and am reading through your blog. Since I am run down and have a cold, etc, your post comes at a great time. With each breath, I will envision not just any renegade cancer cells, but whatever bug I've picked up, as being washed out to sea. Great, great post! Thank you! Brenda
Anonymous commented on 18-Dec-2010 04:33 PM
Beckye, Isn't it wonderful how we cross paths with so many interesting people in the cancer community? People who share not only our fears and hope, but our values and can cut to the chase about what matters most in life. I was glad to meet you as well and hope to see you again, next year. XOXOXO, Brenda
Anonymous commented on 18-Dec-2010 04:39 PM
Hi Lauren, So glad you mentioned the Cancer Support Community - Breast Cancer Registry. I hope everyone takes the time to stop by and check it out and answer simple questions that can contribute to the emotional and social needs of breast cancer survivors. Best, Brenda
Anonymous commented on 18-Dec-2010 04:43 PM
Ani, I think if we live to be 100, we'll always wonder if "it" will recur. The mind/body connection is so important. Some days I have a handle on it, and other days, I don't. We can only just keep doing our best. XOXOXO, Brenda
Anonymous commented on 18-Dec-2010 04:44 PM
I found myself devastated by her death . . .a tough one to have lost . . . a woman I greatly admired - on so many levels . . .
I sat through the SA meetings twice, and was amazed at what came together on our subject in our fair city, but it was so far above my head that it "hurt!"
Hope you have a wonderful holiday, and look forward to seeing you soon………
Anonymous commented on 18-Dec-2010 04:46 PM
I want you to know how very much I enjoy your blog. Your words continue to inspire me!
I have not faced the battle with cancer directly, but rather indirectly through my mother's battle with breast cancer. You remind me of how fortunate I am. I find myself placing countless words of your wisdom under my hat. I feel more prepared should I find myself face to face with this demon.
Hope you can make it on Saturday(casual).
Your Friend,
Anonymous commented on 18-Dec-2010 04:49 PM
Our "fair city" and the breast cancer community owes you so much. Personally, you have been my survivor's role model, reassuring me that I, too, can be a survivor. Thank you for your friendship and advice. I love you, sweet lady. Brenda
Anonymous commented on 18-Dec-2010 04:55 PM
Katsy, Through your mother, you've faced your share of this breast cancer battle, along with facing other tough fights families shouldn't have to endure. As a result, you radiate an innate sense of wisdom and courage. I'm honored to know you, sweet friend. Brenda
Anonymous commented on 18-Dec-2010 04:56 PM
My dear Brenda,

Once again, I just want you to know how I appreciate receiving your newsletter. I've
dealt with breast cancer by just following and/or listening to my doctor. Somehow,
I've not taken over as far as caring for myself on my own. I just followed my doctor all
the way through my ordeal. I guess I just don't want to even think about it, really.

Regarding Ms. Edwards, I was so furious and upset that her death really brought me
to tears. I ended up cussing her husband and the mistress for contributing to the
early demise of Ms. Edwards. Basically, my oncologist often reminded me to stay
away from stressful situations because cancer gnaws on you when you're depressed
and/or stressed out. I believe the stress from knowing the affair really brought her
down. Oh, please tell me this isn't so.

I place the book you recommended on my Christmas wish list so I am looking
forward to getting this book for Christmas.

Merry Christmas and may you have a very blessed 2011. May God continue to bless
you with good health and much happiness so you can continue the good that you do.


Anonymous commented on 19-Dec-2010 01:24 PM
Dear Betty,
It's often difficult to find our voice when we have a serious illness. Everything is so frightening and overwhelming, that it's easier to put ourselves on autopilot and leave the navigating to our physicians. While that coping mechanism works to some extent, I fear if we don't step up and take the reigns, we rob our physical and emotional selves of much of our own healing power.

By empowering ourselves and making conscious decisions to eat better, exercise and avoid as much stress as possible, we take some of the helplessness and fear away because we're no longer simply bystanders. We're no longer victims, but active survivors and warriors.

Experts on surviving, whether it's surviving a whacko with a knife, or something like cancer, tell us not to let "them" take us to another location. We should fight the would-be rapist from taking us into the woods and fight any renegade cancer cells so they don't take us to metastasis. We are captains of our own ship. Steer it in a good direction.

Let me know what you think of the book.

Have a Merry Christmas!
Anonymous commented on 19-Dec-2010 11:06 PM
Brenda, thanks so much for passing along the info for the Breast Cancer Registry! I'd never heard of it. I'll pass this along. <3

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