Positives About Negative

What Should I TItle My Book on Triple Negative Breast Cancer?

2012-02-12T19:59:00.000-06:00

Hey, wonderful readers. I need your help. My book on TNBC will be out in the fall, but so far it does not have a winning title. I have added a poll to the right so you can give your opinion on some of the suggestions so far. If you have additional ideas--please! please!--you can add them in the comments below, or shoot me an email. Please do not be shy.

A brief overview of the book:

Nearly 70,000 women a year are diagnosed with triple-negative and other forms of hormone-negative breast cancer, yet no book exists on this disease. Patricia Prijatel fills this void by using a broad array of scientific studies presented in the context of her own experience and through profiles of other women who have faced TNBC.

The Triple-Negative Breast Cancer Book (or whatever) provides research-based information on the characteristics of TNBC, survival statistics, proper treatment, and strategies to reduce the risk of recurrence, including diet and lifestyle changes. It provides a guide to understanding your pathology report and explores possible risk factors for TNBC, including the role of the BRCA genetic mutations, family history, and race. Prijatel provides scientific studies to support her information and to offer suggestions for further reading.

Prijatel's primary message is that TNBC is a disease to take seriously, with proper and occasionally aggressive treatment, but it is not automatically a killer; in fact, most women diagnosed with the disease do survive.

Prijatel's story will make you laugh and cry, but will show the heart of a survivor. And the profiles of 11 women from throughout the United States, who were diagnosed in their 20s, 30s, 40s, 50s, and 60s put a face on the disease. These are mothers, wives, daughters, sisters who went through a variety of medical treatments and then got on with life—one competes in triathlons, two had babies after being treated with chemo, one got remarried in her 50s, and one just celebrated the 30th birthday of the son she was nursing when she was diagnosed.

Thanks!
Pat

Breast Cancer Mantra: Calm Your Spirit

2012-02-08T14:41:00.004-06:00

Calm Spirit.

That’s what Madlyn Ferraro calls this beautiful painting. It’s the kind of art that makes me stop and wonder about the story behind the image. Who is this woman, what is she reading, and is she as calm as she looks?

And can I be her?

Madlyn, the artist, found this calm spirit at a local restaurant, sketched her, and then created this acrylic painting. It and more of her whimsical and interpretive art are on her website. You can buy these beauties for yourself or for others going through a stressful journey. Looking at this painting calms me.

Madlyn is actually in her second career. This past year, she left her job at the University of North Carolina’s Lineberger Comprehensive Cancer Center where she was the network coordinator of the cancer clinical trial program.

She spent her first career helping researchers find new treatments for cancer. Then she retired to create art.

An enviable move, showing the art of the possibility. And the possibility of art.

Madlyn is one of the professionals who reviewed my book on triple-negative breast cancer for medical accuracy. She has been exceptionally helpful in making the book as precise and helpful as possible. In return, I am supporting her in her new career in the wonderful world of art.

Fetal stem cells may offer key to the origin of TNBC

2012-02-07T19:44:00.001-06:00

Do breast cancers develop the same way as fetal breast stem cells? Scientists at the Salk Institute of Biologic Studies think so. And their recent research, published in Cell Stem Cell (February 2, 2012), opens important avenues for the study of the molecular structure of breast cancer—and its cure.

But here’s the most compelling part of the research: Breast stem cells that develop in mice fetuses right before birth have specific characteristics that are similar to triple-negative breast cancer cells.

What this means to us: Isolating the molecular structure of fetal breast cells can help determine the makeup of triple-negative breast cancer, which means a better understanding of the disease and more chance of the development of treatment options.

Breast Cancer Mantra: Sometimes you just need to be sad.

2012-02-05T15:58:00.003-06:00

When my daughter was just a wee thing—three or four or so—she was in her room, crying. I went in and asked her what was wrong.

"Sometimes you just need to be sad," she said.

So true. Sometimes you do, and it is true and honest and real.

So, if you need to, be sad.

Photo by Pat: Well, duh, the moon.

Nature, Time and Patience

2012-02-04T21:37:00.004-06:00

I got this wisdom from a fortune cookie:

Nature, time and patience are the three great healers.

We often need to be open in our definition of the word "heal." It might mean making our body better. But it could also mean learning to accept what is, rather than wishing for what could be. To find the goodness and richness of right now.

Photo by Pat: Hollyhock, with Southern Colorado's East Spanish Peak in the background.

Links Between Abortions and Breast Cancer Not Supported By Science

2012-02-03T11:26:00.001-06:00

My first pregnancy ended in a miscarriage—a spontaneous abortion, the doctors called it. I was broken-hearted. I so wanted that little baby and was already in love with it. I was blessed with a beautiful son less than a year later and a gorgeous daughter two years after that.

Still, the memory of that miscarriage saddens me even now. And when I got breast cancer and came across postings that tied abortion—spontaneous or induced—to breast cancer, I thought I was being punished twice.

So I looked at the evidence. I was ready to be blamed. Don’t we always think something we did caused our breast cancer? Aren’t we always, in some place in our minds, to blame? We’re so vulnerable after a diagnosis that we are sadly open to additional wounds.

And scientific studies often look at spontaneous abortions—miscarriages like mine—in the same way they look at induced abortions. Both are terminations of pregnancy.

The studies mentioned below were comprehensive, some studying groups as large as 100,000, others looking at a multitude of other studies to search for evidence. They found no credible link between spontaneous or induced abortions and breast cancer.

Here’s what the National Cancer Institute says on the subject:

In February 2003, the National Cancer Institute (NCI) convened a workshop of over 100 of the world’s leading experts who study pregnancy and breast cancer risk. Workshop participants reviewed existing population-based, clinical, and animal studies on the relationship between pregnancy and breast cancer risk, including studies of induced and spontaneous abortions. They concluded that having an abortion or miscarriage does not increase a woman’s subsequent risk of developing breast cancer. A summary of their findings can be found in the Summary Report: Early Reproductive Events and Breast Cancer Workshop.

NCI regularly reviews and analyzes the scientific literature on many topics, including various risk factors for breast cancer. Considering the body of literature that has been published since 2003, when NCI held this extensive workshop on early reproductive events and cancer, the evidence overall still does not support early termination of pregnancy as a cause of breast cancer. To view regular updates on this topic, please go to the Breast Cancer PDQ® summary, which is part of NCI’s comprehensive database.

The American Cancer Society provides additional evidence that breast cancer is not linked to abortions. (Note: Some of the studies refer to “recall bias,” which means that women may not honestly recall their previous health histories. Some research indicates that women with breast cancer are actually more likely to honestly report having had abortions, because they are looking for something that might have caused their cancer.)

The largest, and probably the most reliable, study on this topic was done during the 1990s in Denmark, a country with very detailed medical records on all its citizens. In this study, all Danish women born between 1935 and 1978 (a total of 1.5 million women) were linked with the National Registry of Induced Abortions and with the Danish Cancer Registry. All of the information about their abortions and their breast cancer came from registries – it was very complete and was not influenced by recall bias.

After adjusting for known breast cancer risk factors, the researchers found that induced abortion(s) had no overall effect on the risk of breast cancer. The size of this study and the manner in which it was done provide good evidence that induced abortion does not affect a woman’s risk of developing breast cancer.

Another large, prospective study was reported on by Harvard researchers in 2007. This study included more than 100,000 women who were between the ages of 29 and 46 at the start of the study in 1993. These women were followed until 2003.

Again, because they were asked about childbirths and abortions at the start of the study, recall bias was unlikely to be a problem. After adjusting for known breast cancer risk factors, the researchers found no link between either spontaneous or induced abortions and breast cancer.

The California Teachers Study also reported on more than 100,000 women in 2008. Researchers asked the women in 1995 about past induced and spontaneous abortions. While the women were being followed in the study, more than 3,300 developed invasive breast cancer. There was no difference in breast cancer risk between the group who had either spontaneous or induced abortions and those who had not had an abortion.

Breast Cancer Mantra: Breathe In, Breathe Out

2012-01-28T08:32:00.005-06:00

Breathe in.

Breathe out.

Breathe in.

Breathe out.

And think of someplace beautiful while you're doing it.

Photo by Pat: The East Spanish Peak, near Walsenburg, Colorado

Ashkenazi Jewish women with BRCA1 mutations more likely to have TNBC

2012-01-27T18:25:00.002-06:00

We know that women with triple-negative breast cancer are more likely to be young and premenopausal and that African-American Women are disproportionately affected by the disease. Now, a study in the Journal of Clinical Oncology adds another group that might be at special risk of TNBC: Ashkenazi Jewish women.

The details:

• Ashkenazi Jewish women with BRCA1 mutations were five times more likely to be diagnosed with TNBC that were women from other ethnic and religious groups.

• The BRCA1 mutations in Ashkenazi Jewish women in the study had a specific genetic profile, as opposed to the genetic variations found in women from other groups.

• Researchers studied 1,469 patients from Los Angeles County between t20 and 49 years who had been diagnosed with and treated for breast cancer.

• The number of Ashkenazi Jewish women with the BRCA1 mutation were too small—13—for this study to be definitive, but it does raise an interesting question that deserves additional study.

Breast Cancer Mantra: It's All About the Journey

2012-01-26T19:03:00.007-06:00

These ruins of a coalmining town in Southern Colorado have always intrigued me. They’re what remains of a community or business center. I imagine workers trudging up the steps to pick up a check, or couples eagerly climbing together on their way to a dance in the heyday of Colorado’s coalmining industry in the 1920s.

Now, of course, the steps lead to a big drop off.

Ever feel like that? Like you’re walking up and up and up, worrying all the way that what’s waiting for you at the end is a cliff?

That’s pretty common after a breast cancer diagnosis. What’s ahead? you worry. Am I going to get out of this alive? Or am I going to go through all this hideous treatment and end up with the mean stuff returning?

But you could look at the image differently. After nearly 90 years, the building is gone, but the steps remain. I see this as a metaphor for our lives. What is important is the journey, the striving, the reaching. How we get to where we are going is what matters. The destination is always unknown, but our journey toward it is really all we have, all we can count on, all we can control. The journey is our lives.

The endpoint in this image—that azure sky—is breathtaking. And as I look at the image, I find both energy and contentment in the fact that the stairs actually extend into that wondrous blue. Rather than seeing the stairs end, I see the sky begin. And in that sky, I see a beautiful new beginning.

Avastin Before Surgery May Help TNBC

2012-01-25T16:55:00.002-06:00

The Avastin storyline continues, with research showing once again that the drug (generic name: bevacizumab) can benefit women with triple-negative breast cancer (TNBC). Two studies, both focused on the use of Avastin in neoadjuvant—before surgery—chemotherapy, were published in the Jan. 26 edition of the New England Journal of Medicine.

The most intriguing research, from a TNBC perspective, was conducted in Germany on 1,948 women with an average tumor size of 4 centimeters (about 1.6 inches). All received neoadjuvant chemotherapy of docetaxel, epirubicin and cyclophosphamide. Some were randomly assigned to receive Avastin.

Pathological complete response (pCR) was increased in the 663 women with TNBC who were given the Avastin.

• The pCR of those with TNBC who were not given Avastin was

27.9 percent.

• The pCR of those with TNBC who were given Avastin was 39.3 percent.

Late last year, the Food and Drug Administration recently pulled its approval of the drug because they felt its effectiveness was not significant enough to justify its cause. BUT, the decision did not take into account the fact that Avastin has, in several studies, been shown to be effective for TNBC. The FDA looked at overall results; the fact that Avastin has not been shown to be effective for hormone-positive tumors (the most common kind) skewed the results. Women with TNBC did show a benefit, but because there were so few of them, the benefit appeared statistically insignificant.

That is, not all women benefit from the drug. But women with triple-negative breast cancer might. And previous research has focused on metastatic triple-negative breast cancer (disease that has spread to distant organs). The new studies were on non-metastatic disease.

Some recent articles about it have appeared in Medscape. and Medpage Today.

Vitamin D and TNBC: The Hormone Receptor Link

2012-01-25T14:13:00.004-06:00

The Rational Therapeutics blog has a post on Vitamin D and triple-negative breast cancer that I find especially intriguing. For example, vitamin D actually operates like a hormone and interacts with other hormone receptors, such as estrogen and progesterone. Too little of it brings a susceptibility to TNBC:

What is vitamin D? Well, although we refer to it as a vitamin, it is, in fact, a hormone. It is obtained from the diet or from exposure to sun. The most potent form of vitamin D is that associated with sunlight exposure. Once in the body, vitamin D interacts with cells at very specific receptors. The term receptor reflects the role of these “landing sites” contained within the cell’s nucleus. As the vitamin D molecule traverses the cell membrane and enters the cell nucleus, it binds with the vitamin D receptor, which connects to the chromosome at a hormone response element and drives the cell machinery forward.

The vitamin D receptor is part of a large collection of genes called the steroid super gene family. These include receptors for estrogen, progesterone, testosterone, and, yes, vitamin D. Read more.

Reader Story: Marilyn Amstutz

2012-01-22T09:05:00.004-06:00

Marilyn Amstutz with her daughter in Toledo, Spain in January 2012: Enjoying life, each other, and the amazing old city.

Here's Marilyn's story, in her own words:

I was diagnosed eighteen months ago with TNBC Stage 3C Grade 3 with 33 positive lymph nodes and a 5.2 cm. tumor. I immediately had a left mastectomy and a complete axillary node dissection. Then I entered a study at UNMC [University of Nebraska Medical Center] and received 4 cycles of Adriamycin plus Cytoxan followed by 4 cycles of Taxol plus 4 cycles of gemcitabine plus 4 cycles of Avastin and an added 6 months of Avastin every three weeks. After chemo, I had 35 daily treatments of IMRT radiation with a boost at the end.

That was what my doctors did.

I changed my diet and eliminated sugar and fat and lost 35 pounds. I still eat that way - except when I went to Spain. I walked a mile a day through treatment and added pilates two times a week after I recovered from surgery.

I went to a wonderful twelve-week program called A Time to Heal and my type of program included our caregivers, so my husband came too. My friends fed me healthy, fresh organic food through chemo. I continued to work part time - which was really good for me.

In May I finished treatment and took my first trip to Spain to visit my daughter, son-in-law and grandson. In August I went back to work full time. I just returned from my second trip to Spain and feel very, very blessed.

I have a ton of energy -- probably walked 4-5 miles per day in Spain and kept up with my toddler grandson - even helping my daughter carry him and his stroller up and down many stairs at the metro station! I have a strong faith and look at each day as a gift from God. I believe I am at this point because of Him, my doctors and caregivers, my family and friends, my students and co-workers and my positive attitude.

Breast Cancer Mantra: Laugh

2012-01-21T18:37:00.006-06:00

OK, today is silly time.

This image, titled "Paper Training Our Little Dog Frank" made me laugh. I hope it gives you a little glee as well. It is from Bent Objects.

And a few more chuckles for you, courtesy of Blue Donut and Newslite:

• Two fish are in a tank, and one says ''How do you drive this thing?''

• I went to buy some camouflage trousers the other day but I couldn't find any.

• I slept like a log last night...woke up in the fireplace.

• Two snowmen are standing in a meadow. One snowman turns to the other and says, "Do you smell carrots?"

Laughter can be excellent therapy. Go for it.

FAQ: Are Breast Cancer Survival Rates Measured from Diagnosis or the End of Treatment?

2012-01-21T17:31:00.002-06:00

Breast cancer survival rates are measured from the date of diagnosis. Research has shown that the risk of recurrence for triple-negative breast cancer is highest up to three years after diagnosis; at that point, it drops significantly.

In one study, published in Clinical Cancer Research, researchers followed 1,601 women for up to 8.1 years. 180 of these women (11.2%) had triple-negative breast cancer.

Compared with other women with breast cancer, those with triple-negative breast cancer had an increased likelihood of distant recurrence…within 5 years of diagnosis but not thereafter. The pattern of recurrence was also qualitatively different; among the triple-negative group, the risk of distant recurrence peaked at ∼3 years and declined rapidly thereafter.

And according to the National Cancer Institute, survival rates are measured from time of diagnosis. Some definitions:

Cancer-specific Survival: The period from diagnosis until death from the same cancer, whether the original lesion or to a second primary, same cancer or related causes. (Adapted from DJA Punt et. al., 2007) 

Disease Free Survival, Disease Free Interval :The period from date of diagnosis until date of first recurrence, loco-regional or systemic. (RTOG) 
Overall Survival :The period from date of diagnosis until death from any cause. (RTOG) 

Progression Free Survival, Progression Free Interval : The period during and after treatment in which a participant is living with a disease that does not get worse. Typically it is the period from date of diagnosis until 1) loco-regional or systemic recurrence, 2) second malignancy, or 3) death from any cause; late deaths not related to cancer or its treatment are excluded. (RTOG)

Breast Cancer Mantra: You Can't Change Reality, But You Can Change How You See It

2012-01-17T16:16:00.005-06:00

Snow can be a royal pain in the driveway. Or it can be a beautiful wonder. We can grumble about having to slog through it to get to work. Or we can spend a few minutes in the snowy woods and listen to the quiet. Listen and wonder.

It's all in how you look at it.

Dealing with breast cancer is another royal pain—in our boobs, our minds, our finances, our whole lives. But sometimes it means we stop in our tracks to look at what is around us that is good and loving and sweet and dear in a way we have never done before.

Yes, we are dealing with way too many healthcare professionals and some are good but others are not. The bad ones confuse, scare, and frustrate us. But the good ones can literally save our lives, and many of them are exceptionally thoughtful while they do it.

And people we know sometimes say really stupid, insensitive things. Like the "How are you?" that sounds like "Oh, you're not dead yet?" Or, "Yeah, my sister had that kind of cancer and she died." But others bring us smoothies and send us loving cards and make us healthy foods and sit with us during chemo.

And they tell us they love us.

And they show us they love us.

Just look at that.

Photo by Pat: Gray's Lake, Des Moines, Iowa

Breast Cancer Mantra: Celebrate Today

2012-01-16T16:09:00.010-06:00

“When I reach three years past diagnosis, I can breathe again,” a friend with triple-negative breast cancer told me recently. Triple negs, as we sometimes call ourselves, can begin celebrating our cancerversary at the three-year mark. TNBC is generally more aggressive than hormone-positive breast cancer, but if it does not recur within three years, our chances of beating it are high.

Still, the friend planned to start living in three years.

That’s about three years off schedule.

We have today to live, today to appreciate, today to enjoy, today as a blessing. Today as a celebration. Really, today is all anybody can really plan on, so why not make the most of it?

I am reading Joan Didion’s A Year of Magical Thinking, about the death of her husband, John Gregory Dunne. He died of a heart attack in the middle of a conversation as they were sitting down to dinner. Neither had gone into that day with the slightest thought that it would be his last. Yet one minute they were chatting and the next he was slumped over the table; he never recovered.

So, if you are stewing about what you might have done differently in the past to avoid cancer and planning what you will do in the future when you finally believe the disease is behind you,it may be time to think a little differently. Think about what you can do today. And try to appreciate the beauty of this day.

We have it.

It is ours.

Photo by Pat: wild orchids in the Andes, off the Inca Trail near Machu Picchu

Today's Breast Cancer Mantra: Smile

2012-01-14T15:28:00.004-06:00

Courtesy of my adorable grandson Eli, his mother Ellen, his daddy Steve, and the voices in the background: big brother Tarin and Grandma. Music by Elizabeth Mitchell, singing "Peace Like a River."

LBBC Publishes Book on Palliative Care

2012-01-09T19:46:00.003-06:00

FROM A NEWS RELEASE PROVIDED BY LIVING BEYOND BREAST CANCER(LBBC):

January 10, 2012; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) has announced the release of Understanding Palliative Care, the newest title in the organization’s library of “Guides to Understanding Breast Cancer.” It joins three other LBBC publications designed specifically to address the needs of women living with metastatic breast cancer.

“The best way for women to face breast cancer is to obtain the resources necessary to make informed decisions that allow them to become advocates for their own health,” comments Jean Sachs, MSS, MLSP & CEO of Living Beyond Breast Cancer, “and palliative care is often highly misunderstood. Some people believe it is equivalent to planning for the end. But, palliative care has been shown in studies to improve quality of life and in some cases lengthen (life). It is our intention to demystify some of the myths about palliative care with this guide.”

Understanding Palliative Care was authored by Michael J. Formica, MS, MA, EdM, Editor and Project Coordinator at LBBC with the assistance of healthcare professionals and women living with advanced breast cancer.

“A challenge facing many women with advanced breast cancer is getting the most out of treatment while continuing to live life fully,” adds Formica. “Understanding Palliative Care was written to help make sense of and better understand the role this type of care can play in developing a more complete approach to treatment. LBBC provides the most up to date information on medical advances, treatment and management of physical and psychological side effects, clinical trials and practical information on improving quality of life.

Understanding Palliative Care is divided into eight sections that explain palliative care and its benefits, as well as related options that can support and sustain treatment. In addition, Formica adds that the new guide has been designed to provide valuable information about choosing palliative care, how it can enhance quality of life, strategies for coping with the difficult feelings associated with managing metastatic disease and practical information on financing this type of care.

In addition to Understanding Palliative Care, LBBC also provides three additional guides specific to the metastatic breast cancer community. A guide for women newly diagnosed with advanced disease will be released later this year.

All of Living Beyond Breast Cancer’s publications are available free to women affected by breast cancer in print or PDF format. Healthcare providers can order multiple copies of these or any of LBBC’s extensive selection of guides for a small shipping and handling fee.

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About

For twenty years, Living Beyond Breast Cancer has been empowering women to live as long as possible with the best quality of life regardless of educational background, social support or financial means. LBBC provides national educational programs and services that include a website, lbbc.org; a toll-free Survivors’ Helpline, (888) 753-LBBC (5222); the “Understanding Breast Cancer” guide series; national conferences; free teleconferences; networking programs; quarterly newsletters; publications for African-American and Latina women; healthcare-provider trainings; transcripts, video and MP3 podcast recordings and the Paula A. Seidman Library & Resource Center.

Twins and Breast Cancer: Nature, Nurture, or Something Else?

2012-01-07T16:37:00.004-06:00

Is our cancer the result of nature or nurture? Are we the victims of faulty DNA over which we have no control? Or of lifestyle and environmental factors that we can change? Or is there a third option?

Epigenetics is the study of that third option. This fairly new science covers the process by which nurture might affect nature. That is, things like diet and exercise might actually change the way our DNA influences our body. It’s a complex new field, and scientists are even having trouble defining it.

One way of illustrating it is through the lives of twins.

According to the theory of nature’s influence, we are formed by the genes we are born with—twins separated at birth grow up to live eerily similar lives, sharing marital history, criminal pasts, even athletic ability and sicknesses. The theory of the influence of nurture, however, maintains that our environment shapes us—our economic status, parental involvement, exposure to specific risks, diet, exercise, and so on.

Epigenetics, however, demonstrates that environmental factors can actually influence our genes, changing our genetic processes to make us more or less susceptible to disease. Some recent research on the influence of diet and exercise on the development of breast cancer demonstrates this epigenetic component.

Twins share the same DNA, which can make one more likely to have breast cancer if the other one is diagnosed with the disease.

Identical twins are formed from the same egg and begin in the womb with identical DNA; as the egg splits to become twins, the DNA likewise splits and does not necessarily divide equally, meaning that even identical twins do not have identical DNA. Fraternal twins develop from two different eggs and so they share DNA in the way all siblings do.

That’s the nature argument.

But not all twins share cancer—or any disease. It is common for one twin to get a serious illness that completely misses the other twin. This is the nurture argument—if twins share DNA but don’t share cancer, the environment has to have had some influence.

A Breastcancer.org discussion thread on twins with cancer explores this issue, with many respondents noting that they were diagnosed with breast cancer while their twin was not.

Why would one twin get breast cancer while another does not? National Geographic’s January 2012 issue has a cover story on epigenetics and twins, with some compelling stories that show how unpredictable disease can be even for people with shared DNA. And that unpredictability is one of the motivators for the study of epigenetics.

As National Geographic writer Peter Miller describes it:

If you think of our DNA as an immense piano keyboard and our genes as keys—each key symbolizing a segment of DNA responsible for a particular note, or trait, and all the keys combining to make us who we are—then epigenetic processes determine when and how each key can be struck, changing the tune being played.

One way the study of epigenetics is revolutionizing our understanding of biology is by revealing a mechanism by which the environment directly impacts genes. Studies of animals, for example, have shown that when a rat experiences stress during pregnancy, it can cause epigenetic changes in a fetus that lead to behavioral problems as the rodent grows up. Other epigenetic changes appear to occur randomly—throwing a monkey wrench into the engine of nature versus nurture. Still other epigenetic processes are normal, such as those that guide embryonic cells as they become heart, brain, or liver cells, for example.

Science Daily looked at why the same genetic mutation might affect people differently, using information from the Center for Genomic Regulation in Barcelona Spain. Citing research from the Center, published in the journal Nature, epigenetic researcher Alejandro Burga explains that identical cells do not exist:

In the last decade we have learned by studying very simple organisms such as bacteria that gene expression -- the extent to which a gene is turned on or off -- varies greatly among individuals, even in the absence of genetic and environmental variation. Two cells are not completely identical and sometimes these differences have their origin in random or stochastic processes.

So, while identical twins may appear identical, and while they as genetically close as two humans can be, they remain individuals on the cellular level. One may be more cancer-prone than the other even without differences in the environment.

So, what is it: Nature? Nurture? Both? Neither?

It seems to be a complex mix of all of the above, with our cancers as unique as we are.

Improving our diet and exercise certainly have been shown in multiple studies to reduce our risk of breast cancer. But sometimes the environmental risks that make one twin more prone to illness are no more under their control than their DNA. The way the fetuses develop in the womb, for example, might improve one twin's health while imperiling the other's. And sometimes, that tiny variation in DNA between twins makes all the difference in susceptibility to cancer.

Epigenetics, while not answering the question of what causes cancer, is absolutely getting us closer.

ARE TWINS MORE PRONE TO TNBC?

One basic genetic component in cancer is the BRCA genetic mutation, which runs in families; women with this mutation have between a 50 and 80 percent chance of breast cancer.

Women with triple-negative breast cancer are more likely to have the BRCA genetic mutation than those with other types of cancer.

So, do twins share a susceptibility to triple-negative breast cancer? Or is their tendency toward the disease the same as with other members of cancer-prone families?

In my initial search on this topic, I didn’t find hard research, but I did find some anecdotal evidence that might indicate that this question is worthy of study.

Fraternal twins Kim and Stephanie are both three years past a diagnosis of triple-negative breast cancer. They were adopted at birth and, through aggressive research, they learned that they shared a history of breast cancer with their biological mother, who died of the disease, which they suspect was also triple-negative. Both were diagnosed at 36 and are doing well, after double mastectomies.

And twins Kelly McSpirit Hanlon and Laura McSpirit Grier both have the BRCA genetic mutation and both were diagnosed with breast cancer in their 40s. Triple-negative disproportionately affects premenopausal women.

Good Wishes Offers Silk Head Wrap to Chemo Patients

2012-01-02T17:22:00.001-06:00

The Good Wishes Foundation offers a free scarf for women who have lost their hair because of cancer treatment. The wraps are pretty cool—they are already tied, so you can just pop them on your head. And you can order them in a variety of patterns and styles.

I heard about Good Wishes from Stacey Wilson of Lancaster, PA, who got involved because of her good friend Kate, who discovered that she had triple negative breast cancer during her seventh month of pregnancy with her third son. Stacey writes:

My outreach is completely volunteer and my mission is to make women experiencing hair loss aware of this program and provide "hugs for your heads" via a beautiful head wrap.

Check out the Good Wishes site to order your wrap, make a donation, or get involved yourself.

How Things Look Five Years Past Diagnosis

2011-12-30T13:56:00.002-06:00

I am 2,055 days past diagnosis. That’s five years, 7 months and 16 days. I remember those first few days dragging on, each one seeming to last a year or so, as I looked longingly into the future to a time when my risk of recurrence would drop down to a level at which I could breathe easily.

I finished surgery, chemo, radiation. The first full year. The second. Then the days started to move quicker and quicker. And then, one day, I was three years past diagnosis, the point at which the risk of recurrence drops dramatically for triple-negative breast cancer. Then it was five years. And now cancer is history.

I had turned 60 a few months before my diagnosis and had made the dreadful joke that it was better than the alternative. Not so funny when I was faced with the prospect of that alterative.

I never actually thought I was going to die soon. But being diagnosed was the first time I faced the fact that I honestly and truly would eventually breathe my last breath. And I began to think that cancer might be what would cause my death. Not perhaps in a month or a year, but sometime. That is a sobering, life-changing, scary thought.

Now that I am so far on the other side, that point I looked at with such yearning when I was diagnosed, I have been reflecting on how it feels.

Darn good, folks. Darn good.

I am a different person now—certainly more thankful of things, more introspective, more contemplative, less judgmental. I matured into a deeper me through this experience, and I like that.

Sure, I can still be snarky, cynical, and impatient. I didn’t turn into Mother Theresa, just maybe a lower intern on her staff.

The longer I go past cancer, the less likely I am to see every symptom as a recurrence. I had a nasty pain in the back of my head the other day and Googled it. Sure enough, at some point, brain cancer came up—usually a recurrence of breast cancer, according to one site. (www.scarethepantsoffyou.com). Did I stiffen with anxiety, as I used to at such prospects? No, I moved on. I did not have brain cancer then any more than I had it with a headache two years or three years or five years ago. I knew that. The difference now was that I also felt it. I felt like I was OK.

I have loosened my dietary restraints a tad and am letting myself eat a bit more fat, but only occasionally. I still try hard to eat well. And I keep up my exercise. Lately I have been doing a workout through Beachbody.com. After about nine months I am still at the “getting started” level, but I can keep up, I get a workout, and my weight has dropped a tad. I wish the workout were called something more befitting of somebody with my obvious high class and finesse, but it is what it is. I do have to watch how I explain what I am doing. “I am working on my Beach Body” really makes people do a double take at the grandma they see before them.

My day is filled with meaningful activities—time with family and friends, yoga, meditation, spiritual activities, discussion groups. I spend time almost every day in email chats with somebody who is going through the cancer journey, and I hope I can help. I love that I have the chance to try.

I retired from full-time work about a year after my diagnosis. And, while I miss that regular salary, I love being able to do what is meaningful to me, to spend a good amount of time each day taking care of myself and others. That doesn’t pay all that well in dollars and cents, but it sure has a solid emotional and spiritual reward.

I drink a lot less. I still enjoy a martini every now and then and, actually, enjoy it more because it is an event, not an everyday thing, a needed soother after a stressful day. And I notice that I sleep much better when I do not drink.

I have been blessed with 2,055 days after diagnosis with no recurrence. I remain thankful for every day. I hope that does not change.

Breathe: Health in, Cancer out

2011-12-23T14:51:00.003-06:00

Deep breathing can help calm us in almost all instances. Yoga exercises emphasize the importance of deep, cleaning breaths. If you've been recently diagnosed or are going through treatment, see if this technique might help soothe you:

On a long inhale, say "health in."

On a long exhale, say "cancer out."

Repeat as long as you want. I usually did this for about 10 repetitions a time and, if I were really focusing well, I honestly could envision good, clean white air going in, and the evil cancer going out. I still occasionally do this, five years later.

Now, I seldom mention cancer, I just repeat "health in" on the inhale, and simply relax on the exhale.

Breathe......

How to Manage Holiday Stress + Breast Cancer Stress

2011-12-11T14:43:00.003-06:00

It’s the most wonderful time of the year, croons Andy Williams over the store’s loud speaker. Really? I think. I’m sure the retailer wants me to agree with Andy, which might mean I’ll toss some more goodies into my cart. But I am not convinced. Buying stuff does not equal happiness, nor does piped-in music mean all is wonderful. I leave the store empty handed and head to the lake for a walk.

My post-cancer self is sort of like that—she finds less appeal in acquiring stuff and is much more eager to spend time in nature, getting exercise and some psychological balance. I like this change—I wish I had made it without having to go through surgery, chemo, radiation, and fearing for my life. I’ve learned that contentment is not for sale at the mall or on the Internet, but discontent surely is. And it is all ramped up during the holidays.

In most cases, the holidays can’t stand up to their own hype. We, in general, expect too much of the season—family togetherness, a beautiful snowy landscape, peace, joy, exquisite decorations, and fancy cookies. Our own living, breathing Hallmark card—a pretty tall order under the best of circumstances. But when you’re dealing with breast cancer, the season of forced glee can be a heavy burden.

The sadness of what a diagnosis means, the fear for our future, worry about our kids, anxiety about what treatment will do to our bodies, terror about whether or not we can beat this disease, anger that we got sick in the first place—it can be a pretty potent stew of emotions on any given day. And we’re often simply sick and tired and not physically up to our usual, let alone somebody else’s expectation of holiday-level wonderful.

My first post-diagnosis Christmas came when my hair was a thin layer of fuzz and my energy was stuck at slug level. I was still at the point where I resented every woman I saw who did not have breast cancer, so I was a little raw physically and emotionally. The only thing I really wanted that year was normalcy, which I tried to achieve by making myself at least look somewhat like the old me. I was tired of wearing wigs, so I opted for a snazzy silk scarf for a family celebration at our home. Hair equaled ordinary to me, so I wanted to show off my new stubby growth. But, for the life of me, I cannot tie a scarf like a grown-up, so that little number kept falling down my forehead or slipping lopsidedly over one ear and then another. I looked like a drunken pirate. I considered ducking into my bedroom and throwing on a wig. But, ultimately I decided that this is the way I looked at this point in my life, and my family loved me despite that fact. Or, maybe, even because of it.

This should be a season of love, a time for you to rebuild your health, which may be the only gift your family and friends want. Some thoughts on making the season more enjoyable for you:

Manage Expectations. What do you need from the holidays this year? Rest? Peace and quiet? Or lots of company? Talk this over with friends and family and determine what you can and can’t do—and realize it’s OK for this year to be different. I found that decorating the house perked me up, but I still left quite a few ornaments in the basement because I simply ran out of energy. Nobody noticed.

Avoid Holiday Pitfalls. Caffeine and alcohol can take us even farther into the doldrums. Both are plentiful during the holidays and both are harmful for our physical recovery. I generally follow a diet heavy on complex carbs—grains, vegetable, and fruits—supported with cheese, yogurt, fish, and shellfish. I use the Mediterranean diet as a model, but reduce the amount of wine it suggests because of the link between breast cancer and alcohol.

Keep Active. Walk, do yoga, swim, dance—anything that keeps your body active can help calm your mind. If you feel sadness descending, or you are getting anxious, get up and do whatever you can handle: walk to the mailbox, put on a yoga DVD, or hang up the Christmas wreath. Any activity will do. A friend of mine started taking piano lessons during treatment, bought herself an inexpensive keyboard, and hit the ivories when she started feeling low. She now plays pretty darn well.

Enjoy Nature. Spending time outdoors can increase your energy and reduce your anxiety. I actually enjoy bundling up in a warm coat, hat, scarf, mittens, a boots, and going out into the wintry air. Too much hot inside air can be stifling. Fresh air is invigorating for body and mind.

Honor Your Emotions. I was sad and angry that first year, grieving my former life. Pretending otherwise would have been denying my own reality. Bottled emotions, like liquor, get stronger with age. And denying them just gives them more power over you. Your body, mind and spirit have been through a huge change, especially if you have already started treatment, and that can turn your emotions inside out. Check BCO’s overview of treatment side effects, which includes anxiety, depression, and fatigue.

Talk it Out. If the holidays are making you especially low, find a wise friend, counselor, minister, or anybody you can trust and sit down and talk about how you feel. Sometimes simply expressing yourself is the first step toward feeling better.

Know the Difference Between Sadness and Depression. Sadness is not a sign of weakness. It is a sign you are human. Yet, if you are so sad you don’t feel like doing anything or seeing anybody, and if it’s not getting any better, you might be depressed. Check BCO’s analysis of the difference between sadness and depression. Depression requires professional help. But before you take any additional medications, check with your oncologist, to make sure those drugs will not interfere with your treatment, especially if you are on tamoxifen.

Laugh. Watch funny movies, hang around friends who make you laugh, do anything that can tickly your funny bone. Even try laughter yoga. The act of laughing itself can reduce stress. I come from a funny family in oh so many ways, but mainly we just enjoy laughing. I know that helped my recovery greatly. And if you’re going to look like a drunken pirate in your Christmas pictures, you sure should be able to chuckle about it.

News from San Antonio: Do TNBC Women Not Exist?

2011-12-08T13:49:00.003-06:00

Broadcast and print media have been heralding breakthroughs in breast cancer research at the San Antonio Breast Cancer Symposium this week. The Oncotype DX test can help determine treatment for women with DCIS, they say. Yay! BUT: The Oncotype DX test only works with hormone-postive disease, not hormone-negative, including triple-negative.

Strike one for a breakthrough for the TNBC women.

And zoledronic acid (Zometa) increases breast cancer survivorship. Yay! Oh, wait, that's for hormone-positive disease.

Strike two for TNBC women.

If we get one more strike, are we out?

This would be less frustrating if media reports would clarify that these advances apply to some types of breast cancer but not all. Lumping all of our lumps together is just confusing, frustrating, and wrong. We get our hopes up, only to spend hours looking for the research and finding that it does not include TNBC benefits.

OK, that's all. Just a little rant here.

Breast Cancer and the Environment: Report from the Institute of Medicine

2011-12-08T13:32:00.005-06:00

The study below, as far as I can tell, did not differentiate between estrogen-positive and estrogen-negative disease. (The effects of hormone replacement therapy, for example, are largely restricted to hormone-positive disease.) Still, researchers are taking environmental issues seriously and Susan G. Komen for the Cure has announced it will be promoting further research. And even if there is no explicit link to hormone-negative, who wants to get hormone-positive? Plus, living healthy is good for your entire body, not just your breasts.

WASHINGTON — Women may be able to reduce their risk for breast cancer by avoiding unnecessary medical radiation, forgoing use of combination estrogen-progestin menopausal hormone therapy if possible, limiting alcohol consumption, maintaining a healthy weight, exercising regularly, and avoiding tobacco use, says a new report from the Institute of Medicine. These preventive steps focus on the environmental risk factors for which there is consistent scientific evidence of an association with breast cancer.

The evidence also indicates a possible, though currently less clear, link to increased risk for breast cancer from exposure to benzene, 1,3-butadiene, and ethylene oxide, which are chemicals found in some workplace settings and in gasoline fumes, vehicle exhaust, and tobacco smoke. Avoiding personal use of hair dyes and non-ionizing radiation emitted by mobile devices and other technologies likely will not impact a woman's risk for breast cancer, as multiple studies have found no connection to the disease.

Because of insufficient or contradictory evidence, the scientific jury is still out on whether many chemicals of concern, including bisphenol A (BPA), pesticides, ingredients in cosmetics and dietary supplements, and other substances alter the risk for breast cancer, the report says. Women may choose to minimize their exposure to some chemicals, but the committee found the research inadequate to draw conclusions about the potential benefit of such actions. Chemical ingredients in cosmetics, dietary supplements, and other products undergo only very limited testing before they are put on the market, and the committee noted the value of efforts to help consumers become more aware of this issue.

The steps identified in the report have the potential to reduce risk for breast cancer among women in general, but the committee cautioned that the evidence on how much risk reduction any of these steps offers is inconclusive. Whether it is small or significant, the impact on individuals will vary considerably because women are exposed to a range of substances throughout their lives; in addition, biological, physical, and genetic factors influence their individual chances for developing the disease.

The report's conclusions are the result of a detailed review of scientific research on environmental factors that may affect breast cancer risk. The committee also explored challenges to studying possible links between environmental exposures and breast cancer and recommends future research directions. Areas where there is provocative but as yet inconclusive evidence and that warrant priority attention include overnight shift work and accompanying disruptions of the sleep cycle; chemicals that mutate genes, alter gene expression, or affect hormones such as estrogen; and gene-environment interactions. More research needs to be conducted on the effects of exposures throughout the entire life span, including at specific stages of breast development, and on the cumulative effects of exposures at different life stages or multiple exposures that occur together, the report emphasizes. Most research has focused on adults and on exposures occurring within a few years prior to a diagnosis, but recent studies have shown the importance of exposures at various life stages, such as childhood, adolescence, pregnancy, and menopause.

In many cases, more information also needs to be gathered to determine whether preventive steps can be taken and how they can be most effective. For example, we do not yet know when weight loss is most likely to be beneficial in reducing postmenopausal cancer risk.

"Breast cancer develops over many years, so we need better ways to study exposures throughout women's lives, including when they are very young," said committee chair Irva Hertz-Picciotto, professor, department of public health sciences, and chief, division of environmental and occupational health, School of Medicine, University of California, Davis. "We also need improved methods to test for agents that may be contributing to breast cancer risk and to explore the effects of combined exposures."

The study was sponsored by Susan G. Komen for the Cure. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. For more information, visit http://national-academies.org or http://iom.edu.