Two Views of Breast Cancer

The New York Times ran an excellent review of two new books on breast cancer: Pink Ribbon Blues, by sociologist Gayle A. Sulik and Promise Me, by Nancy G. Brinker. Pink Ribbon critiques the social cost of issues such as Pinktober and the concept of the overly chipper cancer patient. Promise Me is Brinker's memoir about her sister, Susan G. Komen, and the organization Brinker started in her memory. It's a no-holds-barred review that acknowledges the reality and legitimacy of breast cancer crankiness and the very real questions many have about Komen.

And while we're talking books, take a look at Barbara Ehrenreich's Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America. I love Ehrenreich and I love that she gives people permission to be cranky. It came out a couple of years ago, so you might be able to get it easily at your public library.

Review of Triple-Negative

The New England Journal of Medicine published an excellent article overview of triple-negative breast cancer--when it started, how it differs from other cancers, typical patterns of metastases, prognosis....

Online Discussion on Triple-Negative

I just discovered this excellent 2009 discussion on Medscape, "Triple-Negative: Current Approaches and New Frontiers." It's a blue ribbon panel of experts: Eric P. Winer, MD; Lisa A. Carey, MD; George W. Sledge, Jr, MD; and Elizabeth S. Frank, EDM. Some good information--a nice overview of triple-negative.

Don't Define Me By My Cancer

People who have lived through cancer just want to get on with their lives—head into the future like everybody else, free of cancer, free of its memory. That’s why the labels others affix to us can make us especially testy.

Take, for example, the label survivor. Please. It look me a while after diagnosis to understand why this word annoyed those who have survived. Finally, when I started to be lumped into that category, I got it. The word defines us by our disease. And how can we move past this diagnosis if we are forever labeled according to it?

Some women prefer the word thriver, and I get that. It is active—it shows we are fully engaged in life. It’s a positive, affirming word. Surviver, by contrast, means we exist. We didn’t die. Not dying is a good thing—an extremely good thing— but it is not the only thing. If it is, then we are not really living, are we?

Still, I need no label. I am Pat. I had breast cancer and I, thank God, got over it.

What do we call survivors of heart attacks? I call them Hank and Herb and Mike. What do we call survivors of strokes? I call them Jean and Gary. Cancer need not be in a category of its own—the big scary disease. Those of us who have weathered its storms want to move beyond it. We're wives, mothers, daughters, grandmothers, aunts, sisters, friends, lovers. We're proud of these roles and find these labels wonderful--they make us fit in, feel a part of the world, of society, of our families, our communities.

Survivor sets us apart, and we’re tired of being special in a cancer sort of way.

We're also writers, doctors, teachers, editors, students, artists, photographers, computer specialists, managers, volunteers, and tote a laundry list of other accomplishments. We have worked to earn these labels and encourage you to see us for what we have done, not what was done to us.

Then there is the issue of our courageous battle. I had several people tell me that I was so courageous while I went through treatment. My reaction was usually a highly articulate, “huh?” It is not courage to put one foot in front of another and just do what you need to do, usually while terrified and confused.

Some of us do it with less complaint than others, but that is not courage. It is just good luck—a positive attitude, perhaps a better diagnosis, smoother response to treatment, or a support system that keeps us grounded.

To me, courage refers to soldiers in Afghanistan, or the person who jumps into a raging river to save a woman whose boat has capsized, or politicians voting for what they know is right but might not get them reelected.

And, frankly, it applies more to our caregivers—like my husband, who never let me say, “I have cancer,” correcting me to “You had cancer.” Or the parents of children with cancer who have to fight for proper care and deal with the financial hit while supporting a confused and sick child. Or the children watching their mother lose her hair and reminding her how beautiful she is and how much they love her, all the while hiding their own fear.

The problem with calling cancer patients courageous, again, is that it sets us apart from everybody else. We are the Person with Cancer. How scary. How tragic.

Does an obituary say a person died of a courageous battle with heart disease? Why not? Why is cancer elevated to such a stage?

And why does it bother us?

It’s a problem because when you are constantly told you need courage to get through this journey, it makes the road seem that much rougher, the climb that much steeper, the destination that much less clear.

All we want is to be normal again. To be just a person who once got sick but hopes not to get sick again. As someone who is moving on, leaving cancer far behind, kicking dust in its nasty old face.

Read more about living past a diagnosis of TNBC in my book, Surviving Triple-Negative Breast Cancer.

Please consider a donation to Positives About Negative to keep this site going.  This work is entirely supported by readers.  Just click on the Donate button in the right of the page.  Thank you!

Updates from the San Antonio Breast Cancer Symposium

Cure Magazine is offering daily updates from the 2010 San Antonio Breast Cancer Symposium December 8-12. Sign up on the magazine's website, where you can also see highlights of last year's program.

Think Pink, Live Green

Breastcancer.org has launched a new column dealing with environmental influences on breast cancer. In her introduction, Dr. Marisa Weiss writes:

Everything is on the table: what we eat, drink, breathe, take, and use from the kitchen, pantry, cleaning shelf, and medicine chest; how we handle stress, sleep at night, make reproductive choices, treat ourselves, and interact with others. All of these factors affect how our outside environment affects the inside environment within our bodies.

Sound like a big job? In fact, it’s going to take a movement, called Think Pink, Live Green, which is based in science, grounded in medicine, and will be delivered in clear terms with easy-to-follow strategies. We’re certainly not starting from scratch. Think Pink, Live Green represents the results of a research project I’ve been working on for two years with Dr. Joan Ruderman of Harvard Medical School, identifying emerging environmental factors that can potentially contribute to the risk of breast cancer.

The first educational program of Think Pink, Live Green is this expert column on Breastcancer.org, with effective and practical information and tips on things like choosing the safest sunscreens and cosmetics, buying organic at the grocery store, and what cleaning and household products are safe to use. We know far from everything – but we know enough to have serious concerns about using various products and making different lifestyle choices.

For more, go to breastcancer.org.

Exercise cuts BC risk for postmenopausal women

Exercise once again tops the list of what women can do to help reduce their risk of breast cancer. The higher the activity, the better, with five hours a week of moderate physical activity such as brisk walking cutting breast cancer risk for postmenopausal women, according to the ongoing Nurses Health Study. The research was based on surveys of 95,396 postmenopausal women who were interviewed every two to four years since 1986. The results were the same regardless of receptor status (hormone-positive or hormone-negative), body mass index (BMI) and hormone replacement therapy (HRT). The study was published in the October 25, 2010 issue of the Archives of Internal Medicine.

Watch TNBC Special on the Discovery Channel

If you missed the Discovery Channel's special on TNBC that aired last week, you can watch a video here. This is Part 1; once you finish it, you will be directed to three other parts. Or, if you have the necessary software (iTunes will do), check out the podcast here. The 60-minute show will air again Saturday, October 30 and Saturday November 6, at 8 a.m.

Correcting Information About TNBC

I have seen two news stories in the past three days that misrepresent triple-negative breast cancer. One said TNBC does not respond to chemotherapy; the other said that most women die of TNBC within two years. Both are wrong.

Here's what research tells us:

1. The majority of women with triple-negative survive.

2. Risk of death significantly drops three years after diagnosis.

3. Chemotherapy is successful in reducing TNBC tumors and their risk of recurrence.

According to research at Women’s College Hospital in Toronto on 1,601 patients with breast cancer diagnosed between 1987 and 1997, published in 2007:

• The majority of the TNBC women­—57.8 percent—were alive after ten years

• The risk of recurrence significantly dropped after three years

• No recurrences occurred after eight years.

Eric Weiner, M.D., and Erica Mayers, M.D., M.P.H., of Dana Farber say this about chemotherapy and TNBC:

Triple-negative tumors do not respond to endocrine agents or trastuzumab and can only be treated with chemotherapy. Fortunately, increasing evidence suggests that the triple-negative subgroup derives substantial and preferential benefit from chemotherapy. Read more here.

NOS2 Connected to Worse Outcome for ER-

FROM A NEWS RELEASE FROM THE NATIONAL CANCER INSTITUTE: Breast cancers can be divided into different subtypes based on several criteria, including whether or not they express the protein to which the female hormone estrogen binds; that is, the estrogen receptor (ER). Patients with ER-negative breast tumors have a worse outlook than those with ER-positive breast tumors. However, even among ER-negative breast tumors, those characterized as basal-like are the most aggressive and difficult to treat. New therapeutic targets for this subtype of breast cancer are urgently needed. Now, a team of researchers, led by Stefan Ambs, at the National Cancer Institute, Bethesda, report data that suggest that the protein NOS2 could be a good drug target in this context. The data, generated by analysis of human breast cancer samples and cell lines, lead the authors to conclude that high levels of NOS2 are a predictor of survival in patients with ER-negative breast tumors and to suggest that selective NOS2 inhibitors might be of benefit to these individuals. Read the entire article here.

Vegetables Reduce ER- Risk Among African-American Women

African-American women who eat their veggies have a reduced risk of estrogen-negative breast cancer, according to a new study from Boston University. This is good news because estrogen-negative—especially triple-negative‚ disproportionately affects African-American women, who also face higher fatality rates from the disease than white women. Researchers from the Slone Epidemiology Center at Boston University School of Medicine studied 51,928 women for 12 years who participated in the Black Women’s Health Study. Among the women, all of whom were African-American, Hormone receptor cancer (ER-/PR-) cases were 43 percent lower for those women who ate at least two vegetables a day compared to those who ate fewer than four a week. (Really? Fewer than four veggies a week? OK, never mind. I used to eat like that.)

Researchers said cruciferous veggies—cabbage, kale, broccoli, cauliflower, mustard greens—were especially beneficial, as were carrots.

The study used the National Cancer Institute’s Surveillance and Epidemiology End Results (SEER) data. It was published in the American Journal of Epidemiology, published online October 11, 2010.

As I write this, I am drinking the fresh vegetable juice my dear hubby makes me every night—it contains carrots, kale, and cabbage, plus apples and lemon for taste. Such an easy way to get the goodies, especially cruciferous vegetables.

Three new treatments for metastatic TNBC studied

News from the 35^th annual ESMO (European Society of Medical Oncology) Congress in Milan:

• Adding the PARP inhibitor iniparib to chemotherapy added five months to overall survival of patients with metastatic triple-negative breast cancer. What’s even better is that complete or partial response or stable disease was achieved in 55.7 percent of the women, compared with chemotherapy alone. (Complete response: the disease has completely disappeared—no disease is evident on examination, scans or other tests; Partial response: some disease remains in the body, but it has decreased by 30 percent or more in size or number of lesions. Stable disease: the disease has remained unchanged in size and number of lesions.A less than 50 percent decrease or a slight increase in size is generally considered stable disease.) Two phase III studies on iniparib and triple-negative are ongoing. The study was presented by John Pippen, MD, of Texas Oncology, Dallas.

• Adding cetuximab to cisplatin chemotherapy doubled the response rate in women with metastatic triple-negative. Cetuximab targets the epidermal growth factor receptor (EGFR). The results come from a phase II randomized trial of 173 women and included researchers from Spain, Belgium, Austria, Portugal, the UK and Israel. Cetuximab is marketed by Merck under the brand name Erbitux. Merck tried last year to market the drug for lung cancer but failed to win approval.

• Eribulin, a microtubule inhibitor, improved outcomes of all metastatic breast cancer patients, but was most effective against hormone-negative. Estrogen receptor/progesterone receptor negative patients receiving eribulin rather than the physician’s standard choice of chemotherapy had a 34 percent decreased risk of death. The results were part of the EMBRACE (Eisai Metastatic Breast Cancer Study Assessing Physician's Choice versus Eribulin E7389) study, a phase III clinical trial.

Healthcare reform good news for cancer patients

Cure Today has an excellent article on healthcare reform and its effects on cancer patients. One paragraph sums it up.

Health care reform stands to affect almost all people with cancer, both those who lack insurance and those who already have it. Some will be affected profoundly, as they will be spared from financial ruin because of their treatment. The bill also addresses cancer screenings, out-of-pocket expenses, clinical trials, the Medicare “doughnut hole,” and even creates new taxes on cancer-unfriendly industries—such as tanning salons—to help pay for it. Opinions vary on reform, from those who think it goes too far, to those who think it didn’t go far enough. But patient advocates say the changes will generally be good news for anyone with cancer.

Patients with TNBC Fare Better If They Have the BRCA Mutation

Here’s a shocker—having TNBC plus the BRCA mutation is actually better than not having the mutation. That’s certainly contrary to contemporary wisdom. Here’s the story:

• Of 77 women with triple-negative breast cancer treated at the M.D. Anderson Cancer Center, 15 had BRCA mutations—12 with BRCA1 and three with BRCA2.

• All were treated between 1987 and 2006.

• The five-year relapse-free rate for patients with the mutation was 86.2 percent. For patients without the mutation, it was 51.7 percent.

• The five-year overall survival rate for patients with the mutation was 73.3 percent. For patients without the mutation, it was 52.8 percent.

Many of the patients did not know they had the mutation because they had not done genetic testing.

Ana M. Gonzalez-Angulo, M.D., associate professor in MD Anderson's Departments of Breast Medical Oncology and Systems Biology presented the findings in advance of the 2010 Breast Cancer Symposium. A news release from M.D. Anderson provides additional perspective.

Insulin Growth Factor Receptor Tied To Better Odds for TNBC; May Lead to New Drugs

From a news release from the American Association for Cancer Research:

DENVER — Patients with triple-negative breast cancer, one of the hardest subtypes to treat, may have a unique biomarker that would enable them to receive more targeted therapy, according to data presented at the Fourth AACR International Conference on Molecular Diagnostics in Cancer Therapeutic Development.

Triple-negative breast cancers are breast cancers that have tested negative for estrogen receptors, progesterone receptors and HER2. Because of this biology, these cancers do not respond to endocrine therapies or trastuzumab.

“In other subsets of breast cancer, you can use these drugs with some success. However, triple-negative breast cancers currently lack therapeutic targets and are managed with conventional chemotherapy,” said Agnieszka K. Witkiewicz, M.D., an associate professor of pathology at Thomas Jefferson University Hospital in Philadelphia.

Witkiewicz examined 97 patients with triple-negative breast cancer, of whom 73 were white and 24 were African-American. Insulin-like growth factor 1 receptor (IGF-1R) protein expression was evaluated by immunohistochemistry and IGF-1R gene copy number was assessed by chromogenic in situ hybridization.

They found that IGF-1R was overexpressed in 25 percent of the cases. The IGF-1R protein overexpression correlated with gene amplification.

Moreover, low expression of the receptor was associated with greater risk of lymph node metastasis and high expression showed borderline association with lower tumor size. Among patients younger than 55 years, IGF-1R overexpression was associated with longer survival.

Since IGF-1R blockade has been a successful therapeutic approach in sarcomas, Witkiewicz suggested that there may be potential to target this receptor in this breast cancer subtype as well.

“For now, we know that it is there and we know it is a marker of better prognosis,” said Witkiewicz. “The next step is to learn if triple-negative breast cancer patients benefit from targeting IGF-1R.

Docs: Listen to yourselves

A doctor once tried to convince me to take tamoxifen, saying that, even though I was hormone-negative, it would keep hormone-positive from forming. That might be true, I said, so shouldn’t all women be on the drug? They probably should, he said. Aurghhhh. The clincher to his argument, though, came after I objected to the potential side effects of the drug, including uterine cancer. No big deal, he said. “You’re postmenopausal, so you’ll start bleeding and we can catch it, then take your uterus out, and you’ll go back on the drug.”

Oh, is that all? Whatever could have been my objection to such a simple process? Deal with cancer again, go through surgery, take forever to recover. And then get on with my life forever changed again. No big deal. I did it once, why not just plan to do it again sometime down the road?

This is wrong on so many levels that, four years after the fact, I am still sputtering.

First, of course, is that his medical advice was weak. Research shows that tamoxifen does little for hormone-negative and that it can, in fact, increase the risk of hormone-negative forming. In cases like mine, with a weakly positive reading for progesterone, it might have done a few ounces of good, but the risks far outweighed the benefits, in my mind.

But the science here is not the biggest issue. What continues to roil me royally is his callous lack of understanding of how cancer feels to the patient.

I was reminded of this incident recently when a friend was worried about a mammogram that showed small spots on the breast that had been affected by triple-negative breast cancer three years before. The doctor told her she expected good news from the biopsy. The doctor clarified this with: “Good news does include if it's cancer it is in the same breast and we can just take care of it with a mastectomy."

Again, no big deal, just major surgery and the trauma of another cancer diagnosis.

The spots were benign and she was physically fine, but the experience left her tired and depressed.

So docs, before you speak to your patients about the possibility of cancer recurring remember:

• Cancer is a life-altering experience for the patient and her loved ones. We don’t just deal with it and pick up our lives where we left off. We are forever terrified of its return. We fight to go back to being just us, not the Person with Cancer. And, once we have faced the disease that might be our killer, we can never look at cancer—any kind, any stage, any prognosis—with anything short of terror.

If a patient successfully fought off an armed intruder would you shrug off the possibility of another intrusion with “Oh, if it happens again, you’ll just knock him off the deck again and go on with your life.” Cancer to us is that armed intruder and, even if we think we can win, we are not up to another fight. And, by the way, we’re not sure we would win.

• Cancer treatment is traumatic and leaves lasting effects. We forever carry the physical and mental scars of surgery, radiation, and chemotherapy: exhaustion, pain, dark memories of dark days. Surgery hurts, chemotherapy makes you sick in multiple ways, radiation leaves neuropathy that, to some women is as painful as surgery. My lumpectomy incision still hurts, my underarm is painful from lymph node removal, I remain worried about the effects of chemo on my heart, and I was tired for more than a year after all of this. And I had it fairly easy. Some women lose their fingernails, others dip into a deep depression, many cannot work through treatment and lose their jobs.

Oncologists, radiologists, surgeons, cancer nurses, and all healthcare professionals: Remember that these are real and very worried people in front of you and that they cling to everything you say. So watch your words. Don’ shrug off a cancer recurrence as though it were a trip to the mall. Always ask yourself, “How would I want to be treated if I were my patient?”

We’re people, not tumors. You treat the tumor, but you’re talking to the person. And, boy are we listening.

Two-time TNBC Survivor Honored

NEW YORK, Sept. 14 /PRNewswire/ -- Everlast, the premier fight sports and fitness brand in the world, today announced Kim Brylow as the winner of their global 'What Do You Fight For?' philanthropic social movement and contest. For her brave story of twice fighting and overcoming triple negative breast cancer, Kim will receive $5,000, which she is donating to the Triple Negative Breast Cancer Foundation, and a VIP trip for her and one guest to the Sergio Mora - Shane Mosley fight at the Staples Center in Los Angeles, CA. on September 18th.

The contest, which ran in conjunction with Everlast's 100 year anniversary, received more than four-hundred entrants who shared the motivations that drive their fight in life. Entries were voted on by the public through a platform on the Everlast page on Facebook. Brylow, a 43-year old mother of one, inspired thousands of voters through her fight and survival with two separate bouts of triple negative breast cancer.

"Kim's story of strength and determination is at the heart of our 'What Do You Fight For?' campaign," said Everlast President Adam Geisler. "If she is able to affect just one individual and empower them to be better, to do better, then we have achieved our goal."

On the eve of celebrating 1-year of being cancer free, Brylow has turned her fight to help those who face a similar challenge. In turn, she has committed to donate 100% of the $5,000 grand prize to the Triple Negative Breast Cancer Foundation, who is dedicated to supporting research so that effective detection, diagnosis, prevention and treatment of triple negative breast cancer can be pursued and achieved.

In honor of Brylow's story, former WBC Champion Sergio Mora is going to dedicate Saturday nights fight against Shane Mosley to her and also wear a pink ribbon patch on his trunks to honor her and those affected by breast cancer.

"As somebody who fights for a living, I understand the dedication and strength it takes to overcome a difficult opponent," explains Sergio Mora, former WBC Light Middleweight Champion. "Though no opponent I will ever face as a fighter compares to the fight against cancer, Kim's strength to overcome and fight to help others inspires me and dedicating Saturday's fight to her is my way of saying thanks."

Everlast's long standing partnership with Teddy Atlas and the Dr. Theodore A. Atlas Foundation was the inspiration behind 'What Do You Fight For?'. For each contest entry received, Everlast pledged $1 to support the foundations mission of improving the lives of those in need in our communities. With the support of countless athletes and celebrities like Sergio Mora and Mario Lopez, Randy Couture, Andre Berto, Gray Maynard, Miguel Cotto, and Teddy Atlas, who joined the fight to inspire others by sharing their personal motivations, Everlast was able to make a $10,000 donation to the Dr. Theodore A. Atlas Foundation.

For information or to pledge your support, please visit Everlast.com, Dr. Theodore A. Atlas Foundation or Triple Negative Breast Cancer Foundation.

Genetic Connection to TNBC is Complex, Researchers Say

We know that triple-negative breast cancer is connected to the mutation of the BRCA gene. What we don’t know is why do some women with the BRCA1 mutation get breast cancer while others don’t.

Research in the journal Nature Genetics, published online this week, helps explain the genetic links to TNBC.

Those women who have the BRCA mutation and get TNBC are likely to also likely to have other genetic variants, specifically rs8170 and rs48-8611, all on chromosome 19p13.

Researchers studied 1,193 women with BRCA1 mutations diagnosed with cancer before the age of 40 and compared their genetic composition to a control group of 1900 women without breast cancer. They ten replicated their results with a new sample of 2,974 women with breast cancer and the BRCA1 mutation and 3012 without breast cancer. The results were the same.

The research

Antoniou AC, Wang X, Fredericksen ZS et al. A locus on 19p13 modifies risk of breast cancer in BRCA1 mutation carriers and is associated with hormone receptor–negative breast cancer in the general population. Nature Genetics, September 19 2010 (published online)

Linda Tauber, 45, September 11, 2010

I never actually met Linda Tauber, but briefly corresponded with her husband John when her triple-negative breast cancer did not respond to chemotherapy. Her husband wrote a loving goodbye to her on Caring Bridge. And, from reading Linda’s own posts, she lived a full—although far too short—life. Her obituary in the St. Petersburg Times encourages friends to donate to the Susan G. Komen for the Cure 3-Day for the Cure in Linda's memory.

I wish I’d had a chance to meet Linda. She sounds like a beautiful woman in all ways. Let's hope that current research on TNBC ultimately yields successful treatment and prevention for this mean disease.

Research Hints At Source of TNBC

Triple-negative breast cancer may begin, not in stem cells as previously thought, but in cells called intermediaries or progenitors. Research by British scientists published today in the journal Cell Stem Cell may provide new insight into what causes this disease, which is not fueled by hormones. The study—laboratory research on mice—may lead to therapies targeted at faulty cell signals. Medical News Today did a thorough article on the research, quoting head researcher Matt Smalley, from the Breakthrough Breast Cancer Research Centre at The Institute of Cancer Research, London:

These results represent a major advance in our understanding of breast cancer. It means we can now look very closely at where the disease forms and which genes are involved in that process. This knowledge will greatly improve the chance of finding effective new targeted treatments for breast cancer patients in the future.

Source: "BRCA1 Basal-like Breast Cancers Originate from Luminal Epithelial Progenitors and Not from Basal Stem Cells" Gemma Molyneux, Felipe C. Geyer, Fiona-Ann Magnay, Afshan McCarthy, Howard Kendrick, Rachael Natrajan, Alan MacKay, Anita Grigoriadis, Andrew Tutt, Alan Ashworth, Jorge S. Reis-Filho, Matthew J. Smalley
Cell Stem Cell, Volume 7, Issue 3, 403-417, 3 September 2010. 10.1016/j.stem.2010.07.010