Saturday, January 28, 2012

Breast Cancer Mantra: Breathe In, Breathe Out

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

Friday, January 27, 2012

Ashkenazi Jewish women with BRCA1 mutations more likely to have TNBC

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.

Thursday, January 26, 2012

Breast Cancer Mantra: It's All About the Journey

These ruins of a coal mining 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.

Wednesday, January 25, 2012

Avastin Before Surgery May Help TNBC

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

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.

Sunday, January 22, 2012

Reader Story: Marilyn Amstutz

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.

Saturday, January 21, 2012

Breast Cancer Mantra: Laugh

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?

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)

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!

Tuesday, January 17, 2012

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

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

Monday, January 16, 2012

Breast Cancer Mantra: Celebrate Today

“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

Saturday, January 14, 2012

Today's Breast Cancer Mantra: Smile

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."

Monday, January 9, 2012

LBBC Publishes Book on Palliative Care


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.



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,; 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.

Saturday, January 7, 2012

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

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 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.

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.

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!

Read more about TNBC in my book, Surviving Triple-Negative Breast Cancer.