Monday, February 27, 2012

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.

Thursday, February 23, 2012

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.

Sunday, February 12, 2012

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.


Wednesday, February 8, 2012

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.

Tuesday, February 7, 2012

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.

Sunday, February 5, 2012

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.

Saturday, February 4, 2012

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.

Friday, February 3, 2012

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.