Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

That's the title of my upcoming book: Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery.

I hope you like it.

Thank you to all who filled out my survey, left comments, and sent me emails about the title.  The consensus was that some form of "survive" should be in the title, and several of you suggested the need for a reference to hope.

It will be published this fall by Oxford University Press.

Women with TNBC find they share more than disease

The Atlanta Journal-Constitution has a good piece about two women in Atlanta who leaned on one another as they both faced triple-negative breast cancer.  I would correct one line here, though.  The article says triple-negative is "one of the deadliest breast cancers there is."  I would say the women face a form of breast cancer that can be aggressive but is highly survivable.  Ugh.  I do get tired of tired journalism that uses thoughtless language that can terrify women unnecessarily. (As though it is ever necessary to terrify women.)  Especially in a positive piece such as this.

The High Cost of Cancer

When my doctor ordered a Neulasta shot for me after my first chemo treatment, he mentioned that it's the "drug you see advertised on TV."  Seriously.  Worse, a nurse later said the same thing.

Good to know.  My drug is well-advertised.  That is so very meaningful to me, because we all know that advertising is all about truth.

What nobody told me is that the drug is outrageously expensive.  Unbelievably expensive.  Mine cost a mere $2,000 a shot, but I have heard of others costing up to $7,000.  Truly, how can one shot possibly be worth 1/7 of the median household income in the United States?  (I used the Census Bureau's figure of $49,445.)

The stack of insurance papers and medical bills from my cancer treatment almost six years ago is about an inch thick.  When I was dealing with major stress over my health, I was also stressing over who paid what, how much it cost, and what I was responsible for.  This is a common scenario--a cancer patient and her family poring over papers late at night, worrying about healing, worrying about paying for it.

It's not bad enough that cancer can drain our energy, health, and spirit;  it also can drain our pocketbook. The Associated Press's Marilynn Machione wrote an excellent piece about the added burden of paying for cancer.  You might have seen it in your local paper.  If not, here it is from The Des Moines Register.

The high cost of drugs is honestly a disgrace.  The Affordable Care Act, which goes into full effect in 2014 is a step in the right direction, making it illegal for insurance companies to drop you once you're sick, to refuse you coverage once you have the Big C as a pre-existing condition, and to put caps on coverage.   It helps with drug costs for patients on Medicare.  We need much more, though.  We need to stop bickering and actually help people in need.

Writing Workshop: Inspiration and Action

Remember why you wanted to be a writer?  The love of language, the joy of reading and writing.  But do 

 you feel you’ve lost your soul to SEO?  Are you tired of expressing yourself in bullet points and subheads?  

Let’s have fun with writing again.  Join me for this morning workshop and we’ll get inspired by the work of award-winning journalists and authors and celebrate how their words soar, their thoughts engage.  

Then we’ll discuss current electronic and print outlets for writing we can sink our teeth into, including essays and long-form journalism.

9 am - 12:30 pm

March 10
Meredith Hall, Room 104
Drake University
28th and University
Des Moines, Iowa

$50:  Free for Drake students, faculty and staff
Email me for more information.

ABOUT ME:  I have had more than 25 years of experience coaching writers, as architect of Drake’s magazine journalism program, founder of The E.T. Meredith Center for Magazine Studies, and the co-author of The Magazine from Cover to Cover.  My latest book, A Survivor’s Guide to Triple-Negative Breast Cancer, will be published this fall. And, yes, I blog.

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

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

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

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.

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

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

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

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

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

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

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.

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.

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)