Friday, April 29, 2011

Low Vitamin D Levels Again Associated with TNBC

Low vitamin D levels have a direct correlation with triple-negative breast cancer, according to research presented at the American Society of Breast Surgeons meeting in Washington, D.C. Researchers looked at prognostic factors for 155 women treated for breast cancer between January 2009 and September 2010 at the University of Rochester Medical Center. According to a news release from URMC:

A growing number of physicians are already monitoring cancer patients and healthy people for vitamin D. Last fall the Institute of Medicine announced new daily recommended intakes of vitamin D for nearly all adults and children in the United States and Canada. Although the IOM did not specifically address vitamin D and cancer, it reported that 600 IUs daily meets the needs of most people. Higher amounts are often prescribed to cancer patients; sometimes a weekly dose of 50,000 IU is necessary to treat severely deficient people.

Thursday, April 28, 2011

Ask the Expert About TNBC

Every April, Living Beyond Breast Cancer sponsors an Ask the Expert forum on triple-negative breast cancer. Check it out.

Triple-Negative Breast Cancer: Fear of Recurrence

Living Beyond Breast Cancer and the Triple-Negative Breast Cancer Foundation sponsored an excellent teleconference Tuesday April 26, 2011 on fear of recurrence—the first of its kind, and badly needed. They will ultimately post a transcript and podcast.
The presenter was Hester Hill Schnipper, LICSW, BCD, OSW-C,
chief, Oncology Social Work, Beth Israel Deaconess Medical Center.
Adjunct Professor, Simmons College School of Social Work
. She is author of Woman to Woman: A Handbook for Women Newly Diagnosed with Breast Cancer and After Breast Cancer: A Common-Sense Guide to Life After Treatment.
More important, she has dealt with two bouts of breast cancer, both hormone positive.
My notes from the conference.
•Women after any kind of breast cancer are scared. Women treated with TNBC often have triple worries. How much worse is it? How do statistics play our? How much should I worry?
• Statistics are pretty meaningless for any one woman—they have to do with a large group of women. How a disease affects an individual is an individual thing.
• It is important to live as though cancer is not going to return.
• Worries can be worse if feel we do not have any safety net, as women with ER+ have with hormonal therapy.
• With TNBC, the risk of recurrence is worst for first five years.
• Local recurrence—in the breast—is more easily treatable that if disease has spread throughout the body.
• Women are often asked by friends, “Are you cured?” We cannot answer that.
• After five years, the recurrence risk significantly lower. Women with ER+ have much later recurrences. The treatment is being lengthened for ER+ to 10, even 15 years.
• Women with TNBC don’t need to own that particular worry.
• Dealing with cancer afterward is the hard part. Treatment is so arduous, so draining, we are focused just on getting through. We don’t have the energy to deal with emotional issues.
• Many women are dealing with abandonment issues—caregivers no longer there. Lose their support system, no longer have immediate or daily access. Easy to feel abandoned by the caregivers they saw so often during treatment.
• We face elation mixed with anxiety. Others think, hooray, let’s have a big party. We think, what have I been through, what happened to me?
• Even with lumpectomy, the breast looks different--burned, sore, not the breast we remember having.
• Many have gained weight—five, ten pounds.
• We have a bald head.
• Most women feel comfortable going out without something on their head three months after treatment ends. That means almost nine months without hair.
• Plan for at least as long as duration of your treatment to feel well emotionally and physically. We usually expect to feel better quicker.
* It is generally an upward curve, but you’ll have days when you feel very tired, or very scared, or very sad about what happened.
• A lot of us feel precariously balanced somewhere between health and illness.
• Cancer forces us to step out of our routine. Forces us to think about our lives. Gives us the chance to make changes. Some choose not to. We are likely to think differently, to pay more attention to relationships.
• We don’t feel like our old selves. And most friends don’t get it.
* It is best to stagger follow up appointments with medical oncologist, surgeon, and radiation oncologist, although the temptation is to make all appointments on same day. Know your self, know whether would prefer to stay away from doctor.
• What about primary care physician? If have other problems, what about those specialists, those issues?
• During treatment, your medical oncologist acts like primary care physician. Once done, it’s not clear who to call.
• Plenty of women prefer to call their primary care physicians with concerns. Others call oncologist—big fear, and want to hear immediately if there is something wrong. Studies indicate that women followed by primary care physician do just as well as those followed by oncologist.
• Follow the two-week rule—if something has been bothering you for less than two weeks, wait to call. (Cough, sore back, generally not feeling well.) Give it two weeks, most things go away. If not sleeping well, don’t wait. Meant to be reassuring—most things can wait.
• 30 years ago there was a great deal more follow-up. Chest x-ray, blood markers. Now, unless woman is in a clinical trial, or worried, most doctors don’t follow with scans or xrays.
• Blood tests or markers: A couple of markers indicate cancer activity. Not really accurate. Helpful for stage IV, to see if treatment working.
• ASCO recommends against blood tests—they’re not accurate and don’t make any difference in how well you do. If recurrence is discovered in august with symptoms, you will do just as well as woman whose cancer is discovered in February with a blood test. It does make a difference in anxiety limit. Known women with elevated markers, but no sign of cancer. Anxiety increased. (TNBC, though, can grow quickly, so those with especially aggressive cancer may benefit from earlier detection.)
* Lifestyle modifications—particularly important with TNBC. No pill to take. Some attention to diet, exercise, weight and alcohol may make a difference.
• Diet and weight work together.
• Higher weight connected to first cancer and recurrence.
• This is really hard. Many of us gained weight, many dealing with chemopause. Harder to lose weight. Exercise is important—for mental health, and will tone up the body you have. "I go to the gym almost every morning. I hate it there. But I am dedicated to doing all I can to reduce recurrence and make myself look better."
• A lot out there published about diet, but we still do not know much. A diet to reduce cancer risk is not different than what we know about diet in general.
• What we know increasingly about alcohol—more than one drink a day increases risk. "In the interest in being honest, I have a glass of wine at dinner almost every night. If my cancer came back, I am not going to believe it is because of my wine."
• Moderation in all things. Quality of life is important. Know what enhances our joy in life.
• Do not worry about the impact of stress. It does not influence recurrence, no matter what anybody says. Not going to make your cancer come back.
• It is normal to feel sadness that this has happened, that this has brought concern and worry to those you love.
* Anxiety—that it will it come back: Who will take care of my children.
• Exhaustion—many women stay tired for a long time. And being tired makes us more susceptible to worry.
• Sense of isolation. Consider chat rooms, conferences, retreats. No matter how much others (without cancer) try, they do not understand. Most difficult for young women who are worries about whether they will raise their kids and friends who are thinking of what new car to buy.
• Women fall into two camps—I survived it and am OK. Or, one bad thing happened, what else can happen?
•Inevitably, we lose some friends along the way, but develop new and close newfriends. Difficult if close friend or family member vanished through this. You may decide not worth the time and energy to revive that relationship.
• You may feel crazy—it is inevitable, around time of diagnosis, and after.
Depression vs. anxiety vs. fear
All of us fell depressed. Not all clinical depressed. Comes with the territory.
Courage is like a muscle—you have to use it to make it stronger. Courage is fear that has said its prayers.
Things to help with fear—be as specific as possible. What are you afraid of:Afraid of dying? Afraid of being dead? The dying process? Of pain? Of losing things that make up the pleasures of our day. Doctors have made an enormous improvement in pain control. Trade off—pain drugs make you sleepy. Ask your doctor—what would you do for me if I had unbearable pain?
We may be fearful of being a burden. Find out what kinds of care available. How would family members assist you? What can you set up to make it easier for spouse and family?
Biggest fear is leaving children."In 1993, when I was diagnosed with my first cancer, I was a single mom with 11 yr old with no relationship with her father. I was wracked with fear." Made legal arrangements, talked with people who would care for her and love her. Made me feel better.
•Sadness—it is worth being sad about. Just because feel sad—fearful, moody, short tempered does not mean you are clinically depressed.
• Post traumatic stress disorder. What it might feel like after cancer— angry outbursts, think too much about your crisis. Helps to talk about it, normalize it.
• Two week rule helpful—if have half days and hours, then other days when you feel OK, you’re probably not clinically depressed. Many of symptoms of depression—changes in sleep, appetite, social relationship, abiity to concentrate—are the symptoms of going through cancer treatment. Am I really depressed? Do I need help? Give it some time, if after a few weeks you usually will feel somewhat better.
• If feelings persist and you don’t feel like you are getting better, you may need help. If you feel angry or out of control. Like you’re covered with a heavy, wet, foggy blanket and you feel like you have to push it away.
• Medication can help, conversations also help.
• If you wonder if you need help, you might need it. Find a good therapist who knows something about breast cancer—you want somebody who knows about it and understands—you don’t want to have to educate your therapist. Therapists are people—don’t want one who is scared to death about cancer. if calling around, asking about insurance, opening, etc. Ask what is your experience working with women with BC. Not, but willing to do it. Probably not best.
• Live as though the cancer will never return. Living any other way means cancer is the victor. 

For more information on a cancer-fighting diet, check out my book, Surviving Triple-Negative Breast Cancer.  You can get a free signed copy just by donating $25 to this site.  Click the Donate button on the right to donate through PayPal.   You'll then get an email from me asking how you want your book signed and where you want it sent.  Or you can buy the book directly without a donation.  Thanks!  And hugs.  

Monday, April 25, 2011

Stress increases cancer spread in mice

From a News Release from the UCLA Jonsson Comprehensive Cancer Center

Chronic stress acts as a sort of fertilizer that feeds breast cancer progression, significantly accelerating the spread of the disease in animal models, researchers at UCLA's Jonsson Comprehensive Cancer Center have found.

Researchers discovered that stress is biologically reprogramming the immune cells that are trying to fight the cancer, transforming them from soldiers protecting the body against disease into aiders and abettors. The study found a 30-fold increase in cancer spread throughout the bodies of stressed mice, compared with those that were not stressed.

It has long been thought that stress fuels cancer growth in humans. This study provides a model that not only demonstrates that stress can speed up cancer progression but also details the pathway used to change the biology of immune cells that inadvertently promote the spread of cancer to distant organs, where it is much harder to treat.

The study is published in the Sept. 15 issue of the peer-reviewed journal Cancer Research.

"What we showed for the first time is that chronic stress causes cancer cells to escape from the primary tumor and colonize distant organs," said the study's first author, Erica Sloan, a Jonsson Cancer Center scientist and a researcher with the UCLA Cousins Center for Psychoneuroimmunology. "We not only showed that this happens, but we showed how stress talks to the tumor and helps it to spread."
In addition to documenting the effects of stress on cancer metastasis, the researchers were also able to halt those effects by treating stressed animals with drugs that block the nervous system's reprogramming of the metastasis-promoting immune cells, called macrophages.

Beta blockers, used in this study to shut down the stress pathways in the mice, are currently being examined in several large breast cancer databases for their role in the potential prevention of recurrence and cancer spread, said Dr. Patricia Ganz, director of cancer prevention and control research at the Jonsson Cancer Center. If preliminary findings indicate benefit, early-phase clinical trials are being considered at the Jonsson Cancer Center testing beta blockers as a means of preventing breast cancer recurrence.

Other healthy lifestyle behaviors, such as exercise and stress-reduction techniques, may also influence the biological pathways described in the study.

"We're going to be focusing on younger women, because they may have a multitude of things weighing on them when they're diagnosed with breast cancer. Younger women have more significant life demands and typically are under more stress," Ganz said.

Ganz said her proposed research will focus on "host factors," or things affecting the patient that may be aiding cancer progression and which could help explain why a group of patients with the same type and stage of disease have varying rates of recurrence and cancer spread.

"This study provides evidence for a biological relationship between stress and cancer progression and identifies targets for intervention in the host environment," Ganz said. "Because of this study, we may be able to say to a patient in the future that if you follow this exercise regimen, meditative practice or take this pill every day, it will help prevent recurrence of your cancer. We can now test these potential interventions in the animal model and move those that are effective into the clinic."
In Sloan's study, mice with breast cancer were divided into two groups. One group of mice was confined in a small area for a short period of time every day for two weeks while the other group was not. The breast cancer cells were genetically engineered to include the luciferase gene, which is the molecule that makes a firefly glow. The growth and spread of the cancer in the mice was monitored using sensitive cameras that can pick up the luciferase signal. This allowed Sloan and her team to observe both the development of primary tumors and the spread of cancer throughout the body, said senior study author Steven Cole, an associate professor of hematology–oncology and a Jonsson Cancer Center researcher.

What was interesting, Cole said, was that the primary tumors did not seem to be affected by stress and grew similarly in both groups of mice. However, the stressed animals showed significantly more metastases throughout the body than did the control group. The cancer, in effect, acted differently in the stressed mice.

"This study is not saying that stress causes cancer, but it does show that stress can help support cancer once it has developed," Cole said. "Stress helps the cancer climb over the fence and get out into the big, wide world of the rest of the body."

Cole said Sloan detailed the biology of the stress-induced changes in the cancer cells along every step of the pathway, providing a roadmap by which stress promotes cancer metastasis. Additionally, Sloan proved that using beta blockers in stressed mice prevented the same cancer progression seen in the stressed mice that did not receive medication.

When cancer occurs, the immune system sends out macrophages to try to repair the tissue damage caused by the uncontrolled growth of cancer cells. The macrophages, in an attempt to help, turn on inflammation genes that are part of the normal immune response to injury. However, the cancer cells feed on the growth factors involved in a normal immune response. Blood vessels that are grown to aid healing instead feed the cancer the oxygen and nutrients it needs to grow and spread, and the extracellular matrix, which provides structural support for normal cells, is attacked during the immune response, helping the cancer cells escape from the primary tumor and spread to distant parts of the body.

"Many of the genes that promote cancer metastasis get turned on during the immune response by macrophages," Cole said. "This study shows that stress signaling from the sympathetic nervous system enhances the recruitment of macrophages into the primary tumor and increases their expression of immune-response genes that inadvertently facilitate the escape of cancer cells into other parts of the body."
Sloan showed that the beta blockers prevented the macrophages from hearing the signals sent by the sympathetic nervous system and stopped them from infiltrating the tumor and encouraging cancer spread.

The study was funded by the National Institutes of Health, the U.S. Department of Defense and the Jonsson Cancer Center.

UCLA's Jonsson Comprehensive Cancer Center has more than 240 researchers and clinicians engaged in disease research, prevention, detection, control, treatment and education. One of the nation's largest comprehensive cancer centers, the Jonsson Center is dedicated to promoting research and translating basic science into leading-edge clinical studies. In July 2010, the center was named among the top 10 cancer centers nationwide by U.S. News & World Report, a ranking it has held for 10 of the last 11 years.

ACE inhibitors increase, beta-blockers reduce cancer risk

According to a study published in Breast Cancer Research and Treatment, ACE angiotensin-converting enzyme inhibitors may increase the risk of cancer recurrence, but beta-blockers may reduce it. Used together, they can cumulatively reduce risk. Ace inhibitors are used for everything from reducing blood pressure, treating heart failure, preventing strokes, and moderating kidney damage. Beta-blockers treat abnormal heart rhythms, angina, high blood pressure, and migraine.

This is lab research on mice, so the effects on humans still need to be studied. If beta-blockers are effective in humans, this could lead to an effective treatment for TNBC, according to Patricia Ganz, MD, study researcher and director of cancer prevention and control research at UCLA’s Jonsson Comprehensive Cancer Center. She was interviewed for an article on the research in HemOnc Today.

And the study shows that we should evaluate all our medicines, as our drugs affects our entire bodies.

The research was based on data from the Life After Cancer Epidemiology (LACE) study of 1,779 patients diagnosed with early-stage breast cancer.

Read more about 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!

Source: Ganz, Patricia, Habel, Laurel, Weltzien, Erin, Caan, Bette Cole, Steven, 'Examining the influence of beta blockers and ACE inhibitors on the risk for breast cancer recurrence: results from the LACE cohort', Breast Cancer Research and Treatment , pp. 1-8 (2011).

Sunday, April 24, 2011

Journey Into Spring: Easter

As Christians around the world celebrate Easter, let us offer our hearts and prayers to all those who strive to make the world a more loving, kind, and just place, no matter their religion or beliefs.

Below are some of the prayers we offered in my church on Good Friday. I cannot top them, so I share them below.

Prayers for Authorities

Let us pray for those in authority throughout the world....

For all the peoples of the earth, their leaders, and all who hold office....

For Barack our President, for our Congress and Supreme Court, our local governments and courts, and all civil servants....

For peacemakers, diplomats, and those who strive for peace and the general welfare; for the armed services and all in harms way because of war....

For doctors and nurses, hospitals and hospices; for police and firefighters; for all who protect the weak and serve the common good....

For farmers and corporations, for workers and trade union leaders, reformers and visionaries....

For artists and performers; for poets and writers; for journalists and filmmakers....

That they may receive every godly gift of discernment, compassion, integrity and courage, to build healthy communities and make a lasting peace on earth, let us pray to the Lord.

Prayers for Those who Suffer

Let us pray for all who are suffering and in need....

For the poor and oppressed, the exploited and despairing, the sick and the suffering....

For victims of envy, discrimination and revenge....

For all who live in fear, anguish, rage, and violence....

For all who hunger for food, for work, a home, and a holy purpose in their lives....

For all who face death, the loss of love, the crushing of dreams, the crippling of body or mind, let us pray to the Lord.

For all who long for family, friendship, children, a sense of belonging and being known....

For all in danger and captivity, all who long for peace and freedom and safety....

That we may follow Christ in sharing all human suffering as our own....

Loving God, comfort all who suffer, and teach us to cherish Christ’s image in all people: those who are like us and those who are strange to us. Strengthen our hearts in your service, and fulfill in our works of compassion your Love made flesh, Jesus Christ our Lord. Amen.

Prayers for People of Faith

Let us pray for those whose faith is not our own....

For Jews, Muslims, Hindus, Buddhists, Native Americans, Shintoists, Sikhs, and every people of faith....

For their rabbis, mullahs, priests, lamas, shamans and holy teachers....

For those whose faith is known to God alone....

For all who condemn, persecute or martyr others in the name of religion....

For all who suffer and die for their conscience’s sake....

That as Christ came as a stranger to befriend us, we may learn to welcome those unknown and alien to us, let us pray to the Lord

Saturday, April 16, 2011

Journey Into Spring: Survivors In the Himalayas

A group of cancer survivors from Iowa is on their way to Mount Everest base camp this week, part of a three-week trek that will cover 65 miles and end up at 18,200 feet. The group of 14 ranges in age from 27 to 64 and is led by Richard Deming, MD, medical director of Mercy Cancer Center in Des Moines.

Brian Triplett from Davenport is with the group to blog about the adventure, with some remarkable photos from Dr. Deming.

Way to kick cancer's ascent, folks!

Read more from The Des Moines Register.

Friday, April 15, 2011

Journey Into Spring: Tiptoeing Through the Tulips

My friend, Deb Wiley, posted this amazing photo on her blog, Planting Queen. Deb says the photo reminds her of "what gardening is all about: Joy." I recommend a visit to her blog for more excellent photography and perspective.

Wednesday, April 13, 2011

Journey Into Spring: Aren't We All a Bit Like Venus Now?

The Poem, "Truth in Advertising," by Andrea Cohen seems fitting for those of us who have been through breast surgery. It's all about how Venus de Milo would be some average chick if she had both arms. Garrison Keillor read the poem today on Writer's Almanac.

Tuesday, April 12, 2011

Overview of TNBC Teleconference April 12, 2011

Below are my notes of the teleconference today, "Triple-Negative Breast Cancer: Medical Review," with Lisa Carey, M.D. sponsored by Living Beyond Breast Cancer and the Triple-Negative Breast Cancer Foundation. Ultimately, a transcript and podcast will be available that will offer more comprehensive information. For now, though, this is what I jotted down.

• How research has progressed:

In 2005—TNBC had not even been named yet.

By 2010—several hundred publications in that year alone.

• Prognosis of TNBC is not entirely different from other types, but it is more likely to relapse because it does not respond to typical treatment, such as tamoxifen or an aromatase inhibitor.

• Most cases of TNBC are cured by standard therapy, but there still is room for improvement.

• About a third of breast cancer deaths come from TNBC.

• 70 percent of TNBC tumors are basal like—

Claudin low breast cancer, a new subtype, is also likely to be TNBC.

• It is increasingly clear that TNBC is not one disease, but many.

• The question of who gets breast cancer has gotten complicated lately. If you ask that question broadly, the answer is genetic mutations such as BRCA1 and BRCA2. But only about 5-10 percent of all breast cancers are related to the genetic mutations. The rest are sporatic breast cancers—we do not know what causes them. Reproductive risk factors are “soft factors”—don’t have a big influence. We have to change the question to “What causes specific types of breast cancer?”

• The Carolina Breast Cancer Study (there have been three versions; it’s a large study) looked specifically at groups who weren’t normally studied—African-Americans and young women. Carolina study was set up to oversample these groups. Researchers found that basal-like was overrepresented in young women and African-American. Nearly 1/3 of cases in young African-American women.

• It also looks like some of the risk factors may differ between types. Reproductive risk factors may be different for TNBC cancers—we don’t know how to act on that yet. Makes us less global in our recommendations.

• TNBC carries a comparatively worse risk factor. But risk seems to happen in the first three years and, after about 6,7,8 years, the risk of relapse lower for those with TNBC.

• If cancer comes back, HR+ more likely to come back in bones, TNBC more likely to involve lungs and the brain. Much research is being done now on brain relapses.

• Inherited breast cancer—BRCA1 and BRCA2—women with these have 50-80 percent risk of breast cancer over their lives. Recommend mastectomy and removal of ovaries for these women. If women with BRCA1 mutations gets cancer, 80 percent of time it is TNBC. This is called BRCA-associated breast cancer. Why is there such close associations? If a woman without mutation gets TNBC, what does this tell us? We don’t know yet.

• Chemotherapy is the mainstay across all subtypes. Has a bad rap that is deserved. Can have complications and side effects that we can increasingly manage. But it has less than a 1 percent risk of serious complications. Advances in chemotherapy have clearly made a difference in treatment with TNBC—dense-dose chemo, addition of taxanes. Have made some significant advances in treatment. Chemo quite effective and will be in use for many years, and we will continue to work to reduce side effects.

• It is not true that TNBC not sensitive to drugs. It is sensitive to chemo. Studies on neo-adjuvant chemo (before surgery) showed quite clearly that the response to drugs is greater in TNBC than in other cancers.

Anti-angiogenic treatments are treatments that target the blood vessels. Cancers have a system for creating their own blood supplies. Avastin is an antibody-based therapy that targets the blood supply. One thing that is frustrating for us: When we use drugs like Avastin, they seem to be effective, but there is not a selection strategy as to who should get them and who should not. Studies of women treated with chemo and Avastin found equal benefit between TNBC and other types of cancers. One argument is that this is a targeted drug for TNBC. European trial looked at chemotherapy alone and chemo with Avastin in neoadjuvant setting. Not a strong impact, but TNBC had slightly more of an impact. Lends support to the position that this is a valuable place to research.

• EGFR as a target—EGFR inhibitors. Studies on chemo alone as well as chemo plus treatment for TNBC showed a relatively low response rate—not enough to give to all patients with TNBC.

• Greatest interest recently in a new class of drugs called PARP inhibitors. Connected to BRCA1—one of its roles is repairing cell’s damage to DNA. Without BRCA, cell does not have the system for repairing itself. Has to go to emergency back-up systems. If BRCA working, cancer cells are more likely to be killed. PARP inhibitors work with cells that are less likely to repair themselves.

• No PARP inhibitors approved yet. Interesting study in BRCA-associated cancers. Women given just a PARP inhibitor—without chemo---and the tumor shrunk. Drugs in early development, may be a positive way forward for those with inherited mutations.

• What about women without inherited mutations? (Sporatic cancers.) A study on women with metastatic TNBC who were given iniparib, a PARP inhibitor, which was added to the therapy; it controlled cancers longer; women lived longer. Not replicated in a larger study, however. Disappointing result.

• Lots and lots of these approaches are being pursued. We are likely to sort this out. Many good people spending a lot of time on this.

•Ten different angiogenetic drugs being studied. PARP inhibitors also being studied.

• It is possible we are not going to have a home-run drug for TNBC. It may well be that the way forward is personalized medicine. We are trying to determine what the Achilles heel of that cancer is, and target that. TNBC will be the first type of breast cancer to try that personalized approach.

• Clinical trials are essential—consider enrolling.


Relapse to the brain. Reseachers pay attention to brain metastases because the brain acts differently—it responds to surgery. Most common type to move to brain is Her2-positive. Second is TNBC. With Her2, can move only to brain. TNBC tends to come back in the brain as well as other places at the same time; it may have to be treated differently than Her2-positive cancer. Brain metastases research is a very active field. In the past, there had been a tendency to lump brain metastases together—breast, melanoma, lung. Now, break into different types of cancer and different types of breast cancer. The blood-brain barrier needs to be considered. Research now specifically on PARP inhibitors for TNBC that has metastasized to the brain. There have been advances in standard therapy, such as surgery, for brain metastases.

BRCA testing. Is it worth it? Most, but not all of the time. Testing might be called for in a person with a personal history of more than one cancer, any history of ovarian cancer, or any first-degree relatives with breast cancer. Suggest talking to genetic counselor.

What can do to reduce risk, especially without risk factors. Most of the time, we do not know why one woman gets breast cancer and another one doesn’t. There’s the risk of getting the cancer—research is ongoing on how to peg individual risk. Separate from that is how to reduce the risk of an already-formed cancer from coming back. Know how to prevent from recurring—surgery, chemo, radiation. Beyond that, everything is an investigation. There is reason to think a healthy lifestlye helps across the board. Simply do not know how it affects the risk of relapse.

Are treatments different for women with BRCA mutations and those without? No, at this point both would be treated the same.

CMF: One of our earliest drug regimens that has been effective but is being replaced by more modern regimens. Still being used for women who cannot tolerate newer ones. One study showed that CMF actually better than AC chemo. Not a significant benefit, but would not avoid CMF.

Follow-up Testing: What is the best method in following after treatment? ASCO Guidelines—physical and careful history every three to six months for the first three years; every six to 12 months in years four and five. Breast imaging, usually mammography, but sometimes MRI every year. In most cases, no bone scans or CAT scans, or blood work.

Metaplastic breast cancer as is relates to TNBC. Metaplastic are relatively unusual. (As few as 1 percent of all cases.) It is a specific subtype. Most breast cancers are either ductal or lobular. Others are pathologically different. Metaplastic has a funny appearance. Unusual. Almost always TNBC. Don’t know if there is a specific treatment difference. Acts like other breast cancers. May have more of the claudin low subtype.

If you have cancer in one breast, should you have the other breast removed? Prophylactic mastectomy in general is limited to those with an inherited risk. If have risk factors and are having mastectomy, it makes some sense to remove both breasts at the same time. For women who have sporatic TNBC, the decision between lumpectomy and mastectomy is a personal one. The decision there is not different for women with TNBC as opposed to others.

Monday, April 11, 2011

Reminder: TNBC Teleconference Tomorrow

You can still register for the "Triple-Negative Breast Cancer: Medical Update" teleconference tomorrow, April 11, at noon Eastern time, with Lisa A. Carey, MD. Register through the sponsors, the TNBC Foundation and Living Beyond Breast Cancer.

You CAN Survive Triple-Negative

Triple-negative breast cancer has caught the attention of major researchers throughout the world, which is a great thing—it means that we are learning more and more about how to prevent and treat this illness. The downside of the research popularity is that the media and medical journals have developed depressing and frightening catch phrases for it, such as deadly, particularly aggressive or, my favorite, a lethal triad. People who write these words do not realize that they can terrify the women who read them, hitting like a heavy thud on our hearts. Researchers are trying to define the disease. Patients are trying to beat it.

The aggressive nature of hormone-negative is a comparative measure. That is, these cancers are, in general, more aggressive than hormone-positive cancers—although, in some cases, only slightly more aggressive. And some hormone-negative cancers can actually be less aggressive than some hormone-positive cancers. Scientists work in generalizations, defining how the disease affects women as a group. Individual cases vary and, researchers increasingly say, are as unique as our DNA.

How researchers classify triple-negative, for example, can vary. My own case—negative for estrogen and her2, but weakly positive for progesterone—puts me in a fairly narrow subset. Yet I had two oncologists tell me that they classify weakly positive as a negative, meaning I would be triple-negative. Researchers disagree, usually considering any level of positive as being positive. It is possible, though, that my weakly positive progesterone put me in a less agressive subset that is so small it is seldom researched.

So let’s look at some of the data and what they mean. And rather than simply accepting the gloomy picture that is often presented, let’s approach this in the enterprising spirit of yeah, but….

It is true that hormone-negative breast cancers can be more aggressive than hormone-positive. But the majority of women who get the disease survive.

It is true that most cases of recurrence come within the first three years. But that means that those who hit five years are looking at an excellent prognosis. A better long-term prognosis, in fact, than those with hormone-positive.

It is true that triple-negative is more likely to have spread to the lymph nodes. But many women with TNBC have no positive nodes—and, if they do, they still beat the disease and survive.

I have learned to turn statistics around to improve my perspective. For example, when research says that 30 percent of the women with triple negative died in a particular study, I turn this around and realize that 70 percent of the women survived. And I plan to be one of those women. And if, in another study, a triple-negative woman faces a two-fold increased risk of death compared with hormone-positive, I look at the fact that the difference might be between a 10 percent risk of and a 20 percent risk. And, while those decreased odds are startling and sobering, they still can mean an 80 percent chance of not dying. Even starting with a poorer prognosis, the odds can still be with you.
NOTE: This is an excerpt from my book, Surviving Triple-Negative Breast Cancer. 

You can get a free signed copy just by donating $25 to this site.  Click the Donate button on the right to donate through PayPal.   You'll then get an email from me asking how you want your book signed and where you want it sent.  Thanks!  And hugs.

Monday, April 4, 2011

Linda Hallam: 1951-2011

My friend and colleague Linda Hallam died March 29, 2011. She had been diagnosed with triple-negative breast cancer in July 2010. She is mourned by her husband, sons, siblings, friends, colleagues, and the triple-negative community. Another huge loss. I wrote about her in an earlier post, but words do fail me on this one.

My prayers to Linda's family.

Her obituary, in The New York Times, gives a little sense of this accomplished woman.

Pilot study to look at stress in young women with TNBC

A two-year study at Southern Methodist University will analyze the psychological and social challenges faced by young minorities with triple-negative breast cancer. Researchers will survey up to 60 women recently diagnosed with TNBC or those who test positive for a mutation of the human gene that suppresses tumors, BRCA1.

Below are portions of a news release from SMU. (I have edited out phrases such as an "aggressive form" and, my favorite so far, "this unconventional subtype.")

The study is probing patients' stress, anxiety and concerns about the psychological and social hurdles they face, said Georita M. Frierson , principal investigator. SMU is collaborating on the Triple Negative study with the University of Texas Southwestern Simmons Cancer Center, a National Cancer Institute-designated cancer center.

"We don't know anything about this population psychologically," said Frierson, an expert in behavioral health psychology and an assistant professor in the SMU Department of Psychology. "But based on this study, for any of their concerns we could tailor a psychological intervention to help other women like the women in my pilot. These women will be our pioneers in the psychological area to help their sisters that may have Triple Negative in the future."

For younger, minority women: Different cancer, different challenges

Triple Negative patients face far different challenges than women with traditional hormonal-type breast cancer, whose psychological and social challenges have been widely examined in the published psychological cancer literature, Frierson said. Traditional hormonal-type patients are typically over age 50, in a later career phase, raising their families, and probably have peers who may be struggling with a chronic illness.

In contrast, a Triple Negative patient is young, maybe mid-career, may not have started a family, and her peers are largely healthy and active. Because Triple Negative is a very aggressive cancer, Triple Negative patients can have lower survival rates and higher recurrence rates, and the medical treatment is different from hormonal-type cancer, Frierson said. For example, while chemotherapy can be an effective treatment for the Triple Negative patient, it can lead to short-term menopause, which may or may not be reversible, she said.

Breast cancer is the second leading cause of cancer death among women after lung cancer. In 2010, there were more than 192,300 new breast cancer cases in the United States, with more than 40,000 deaths.

The subtype is called Triple Negative because it tests negative for all three of the hormone receptors that fuel many types of breast cancer: estrogen, progesterone and human epidermal receptor 2. Some traditional breast cancer hormonal treatment therapy drugs, such as Tamoxifen, aren't effective against Triple Negative Breast Cancer.

Results will establish protocol to develop interventions

Health care providers, social workers and others can use the study data to develop programs to reduce and manage stressors in the lives of Triple Negative patients, Frierson said.

"We want to fill a gap that needs to be addressed," she said. "The information from this pilot can help us develop programs and support groups to ease the burden on Triple Negative survivors. When we talk about breast cancer, many people think about the woman in her 50s. But these are young cancer survivors. Really understanding those differences is important."

Health providers who have agreed to refer patients with medical approval by their physicians include: U.T. Southwestern and Parkland Hospital in Dallas; and Moncrief Cancer Institute in Fort Worth. As a partner in the study, The Cooper Institute in Dallas will provide participants with fitness testing. The survey is also online, so a woman outside the Dallas-Fort Worth area can answer a one-time questionnaire and participate in the study.

The survey, which takes 45 minutes to an hour to answer, asks questions about physical activity, diet, nutrition, compliance with doctor appointments, stress levels, body image, quality of life, relationships, friendships, fertility, depression, anxiety, sleep and fatigue.

The research is funded with a two-year, $50,000 grant from The Discovery Foundation, Dallas.

Smoking and Alcohol Use Not Associated with TNBC in Postmenopausal Women

Postmenopausal women who smoke and use alcohol do not face an increased risk of TNBC, according to research using data from the Women's Health Initiative. The study enrolled 148,030 women, 300 of whom had TNBC and 2,479 of whom had estrogen-positive disease. Smoking and alcohol use were both associated with ER+ breast cancer, but not with TNBC. The research was published in Cancer Causes Control in March 2011. Drinking actually slightly reduced the risk of TNBC.

Still, smoking is associated with lung cancer, so it is never a good thing. As for drinking, everything in moderation.

Vitamin D Reduces Risk for ER+, But May Increase ER- Risk

Orlando, Fla. -- In mice models of breast cancer, researchers at the Georgetown Lombardi Comprehensive Cancer Center, a part of Georgetown University Medical Center, found that vitamin D significantly reduced development of estrogen receptor-positive (ER+) breast cancer both in lean and obese mice, but had no beneficial effect in estrogen receptor-negative (ER-) cancer. In fact, obese mice destined to develop ER- breast cancer were clearly worse off than lean ER- mice if they were given vitamin D in their diet.

The researchers, who will present their study at the American Association for Cancer Research (AACR) 102nd Annual Meeting 2011, also found that vitamin D reversed insulin resistance in obese mice, no matter which breast cancer subtype they later developed. In lean mice, however, there was no evidence that vitamin D increased insulin sensitivity.

"Use of vitamin D supplementation is clearly tricky. In the many studies that have been done studying the effect of vitamin D in different cancer types, there is no straight link between use and benefit," says the study's lead investigator, Leena Hilakivi-Clarke, Ph.D., a professor in the Department of Oncology.

For example, in the colon, vitamin D seems to reduce the risk of cancer development, but it may not have any effect on later stage colon cancer. There is also concern that vitamin D may increase the risk of prostate, esophagus and pancreatic cancer. In work she has conducted in endometrial cancer, Hilakivi-Clarke found that although vitamin D was not beneficial in lean mice, in obese animals it reverses both early and advanced stages of the cancer.

"This is not a vitamin that should be taken lightly," she cautions. "People need sufficient amounts because it has beneficial effects for overall health that have nothing to do with preventing cancer. But for those who want to boost their use of vitamin D, it is important that they have their individual levels tested by a physician, and that they discuss their desire to use supplements."

IMPACTS OF VITAMIN D INTAKE IN MICE MODELS (findings in Hilakivi-Clarke lab)

Lean mice Obese mice
ER+ breast cancer Risk reduced Risk reduced
ER- breast cancer Dose dependent benefit No benefit
Insulin resistance No benefit Reversed
Endometrial cancer No benefit Risk reduced


In their ER- breast cancer study, the researchers fed lean mice two doses of vitamin D - 15 or 20 K international units [IU] VD3 - from puberty onset onwards for 24 weeks. They found that the lower dose (15 K IU) of VD3 significantly reduced mammary tumor incidence as well as time for tumors to develop in lean mice, when compared to mice that were fed control diet. A higher dose (25K IU) was used in mice fed the obesity-inducing diet because vitamin D becomes trapped in fatty tissue and thus is reduced in the blood stream, Hilakivi-Clarke says. Obese mice destined to develop ER- cancer that were given vitamin D developed the highest incidence of breast cancer.

In their ER+ breast cancer, only the higher vitamin D dose (20K IU) was used. This dose significantly reduced breast tumor incidence in lean mice, compared to control or obese animals. Additionally, obese mice fed vitamin D developed fewer tumors than obese mice not supplemented with it, says Hilakivi-Clarke.

In both mouse models of breast cancer, obese mice developed insulin resistance, and vitamin D supplementation reversed it. However, vitamin D in lean mice tended to reduce insulin sensitivity in both mouse models, she says.

The researchers are currently studying possible mechanisms by which vitamin D may reverse obesity induced increase in breast cancer and insulin resistance, and preliminary results suggest vitamin D reverses the action of genes which promote inflammation, cell proliferation and survival, and this might involve epigenetic modifications.

Contact: Karen Mallet
Georgetown University Medical Center

Sunday, April 3, 2011

Journey into Spring: Treasured Resources

I am rich with people. They are my renewable, sustainable resources, although I define those terms to mean they renew and sustain me.

This weekend, my husband and I went away for a Weekend with Peeps in Minneapolis and northern Iowa. We did a few museums, wandered around the Upper Mississippi, nosed around the mill district by St. Anthony Falls along the old mills on the Minneapolis riverfront, drove by Lake Harriet, with its gracious homes and trails packed with families, ate at an old firehouse, and ended up in church in Cedar Falls, Iowa.

Most important, though, were the people with whom we shared these experiences—Shawn and Berit, two of my former students who graduated the same year and who make their livings as writers; Mary Kay and Will, design stars who moved to Minneapolis from New York several years ago and who share their expertise with me as I prepare another edition of the magazine textbook I co-authored; Elizabeth, another former student, who is now an Episcopal priest.

We shared talks about everything from magazine design to parenting to religion and politics to Native American art. The kinds of talks you can start in the middle because build on a deep foundation.

I am blessed with interesting people in my life, people I appreciate and respect, people who appreciate and respect me. People with whom hours disappear in thoughtful discussions, laughter, and shared memories.

So we returned home tonight fairly pooped, but thoroughly renewed, beautifully sustained.

Rich with people.