Living Beyond Breast Cancer and Metastatic Breast Cancer Network Release New Publication

For Immediate Release:

GUIDE FOR THE NEWLY DIAGNOSED JOINS GROWING RESOURCE LIBRARY FOR WOMEN WITH STAGE IV DISEASE

January 8, 2013; Philadelphia, PA | Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Network (MBCN) have announced the release of a free publication to help address the needs women have in the first months following a diagnosis of metastatic (stage IV) breast cancer. The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is the newest title in LBBC’s growing library of Guides to Understanding Breast Cancer, free publications designed specifically to empower women with the information needed to make the best and most informed decisions for themselves and their families when facing a breast cancer diagnosis and considering options for treatment and disease management.

As someone living with metastatic breast cancer, Shirley Mertz knows firsthand of the physical and emotional impact of a stage IV diagnosis. Mertz, the president of MBCN, reflected on her personal experience and commented, “Most new metastatic breast cancer patients feel overwhelmed with anxiety and a loss of control over their lives. This new publication will remind women that knowledge is power, help them find courage to educate themselves about metastatic breast cancer and hopefully open the door to better treatment selection and outcomes.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is designed to help women navigate the first few days, weeks and months after a first-time, stage IV breast cancer diagnosis or metastatic recurrence. The guide focuses on medical, emotional and practical concerns with the goal of helping readers to understand the biology of metastatic disease, form questions they may need or want to ask and provide available resources that improve emotional and physical wellness.

“Living Beyond Breast Cancer and the Metastatic Breast Cancer Network worked together to create this resource to help women become their best advocates,” said Jean A. Sachs, MSS, MLSP, LBBC’s chief executive officer. “This guide will help women understand the tests and treatments they may undergo and address the impact that metastatic breast cancer can have on emotional well-being.”

Nearly 150,000 people—women and men—are living with metastatic breast cancer in the United States and while a diagnosis of this type is life-changing, advances in research and treatment have made it possible for many to live longer, more fulfilling lives. LBBC and MBCN worked diligently to ensure that this guide was available to help bridge the gap between initial diagnosis and life beyond.

“I wish something like this had been available to me when I was first diagnosed, for my benefit and the benefit of family and friends who had—and still have—so many questions,” says Cindy Colangelo, a member of the consumer advisory committee that reviewed the guide’s content for accuracy. “Hopefully, this guide will help people acknowledge the elephant in the room that no one wants to discuss. Our goal is to provide a greater understanding of metastatic breast cancer and help affected women and families move forward by answering questions, providing information and giving hope.”

In addition to Colangelo and other women living with metastatic breast cancer, the guide was also reviewed by LBBC and MBCN staff, health care professionals, medical and surgical oncologists, social workers, nurses, researchers, and a palliative care specialist, led by William Gradishar, MD, of the Feinberg School of Medicine at Northwestern University.

“As a group facilitator, I’m excited to present this guide to patients who seek wisdom, guidance and support,” says Marie Lavigne, LCSW, OSW-CAs, an oncology social worker and a member of the medical review team. “As with all of LBBC and MBCN’s offerings, it provides a cornerstone to the essential needs of women diagnosed with metastatic breast cancer – clear, honest information, hope and inspiration when they need it the most.”

The Metastatic Breast Cancer Series: Guide for the Newly Diagnosed is divided into six sections written in clear and easy-to-understand language. Individual copies of the guide are free and can be ordered online at lbbc.org or by calling (610) 645-4567. Larger quantities may also be ordered for a small shipping and handling fee. Additional resources can be found through LBBC’s Understanding Guides: Metastatic Breast Cancer Series and through MBCN. LBBC’s titles are: Treatment Options for Today and Tomorrow, Managing Stress and Anxiety, Symptoms and Treatment Side Effects and Understanding Palliative Care. MBCN’s titles are: Diagnosis: Metastatic Breast Cancer…What does it mean for you? and Get the Facts.

About Living Beyond Breast Cancer
For over 20 years, Living Beyond Breast Cancer has been providing educational resources and support services to women of all ages who have been diagnosed with breast cancer. LBBC helps improve the quality of life for these women by empowering them with the information they need to make the best and most informed decisions for themselves and their families. National conferences, monthly teleconferences, regional community meetings, the Guides to Understanding Breast Cancer and a toll-free Survivors’ Helpline are just a few examples of the services that are provided, always at little or no cost.

If someone you know has recently been diagnosed, is in treatment, recovery, years beyond their diagnosis or living with metastatic breast cancer, LBBC can help. For more information, visit lbbc.org, call (610) 645-4567 or download a free copy of Empower, LBBC’s general information brochure.

About Metastatic Breast Cancer Network
The Metastatic Breast Cancer Network, a national, patient-led organization, works to raise awareness of metastatic breast cancer within the breast cancer community and public. MBCN encourages women and men living with the disease to raise their voices to demand support, resources and more research for metastatic disease.
MBCN provides education and information to metastatic people and their caregivers. Visit mbcn.org or call (888) 500-0370 to access education, support and advocacy resources.

Julie Anne Mauro: “Strength in the Face of Great Uncertainty”

Sometimes getting out your feelings can be just the therapy you need. Living Beyond Breast Cancer offers a “Writing the Journey” Seasonal Writing Series that offers instruction and encouragement for women affected by breast cancer to use this creative outlet to express themselves. On this second installment of the LBBC Blog‘s Writer’s Corner, Julie Anne Mauro shares who own musing on diagnosis and LIVING with metastatic disease.

I Quit Cancer - April 30, 2012 – after an extensive month of tests and trying to get on a drug trial and finally getting on a treatment that is working.

I quit cancer

Seriously, I quit

It’s not a fun job

It certainly doesn’t pay well

And it just takes up too much of my time

I’m tired of Pink

I’m tired of Anti-pink

I’m tired of just being a number

Tired of being a patient

Tired of blood draws and infusions

Tired of looking in the mirror and not seeing myself anymore

Just the battle scars

Just the bitterness

Tired of thinking, will this be the last time I ……

*          *          *          *          *

Untitled – August  7, 2012

Can you do something more than just a prayer?

But fight for me

Fight for me

Show the world that I was once there

Fight for me

Oh fight for me

Let me know that somebody really cares

Fight for me

Oh fight for me

Show me there’s more than blank and empty stares

Oh fight for me

Oh fight for me

Even when I’m weary and on my last breath

Fight for me

Please fight for me

*          *          *          *          *

Julie Anne is a recent transplant to Arizona from New Jersey,  married, and a mother of 2 boys (8 and 14). In July of 2009, a week before her 44^th birthday, she was diagnosed with HER2+ breast cancer. After chemotherapy, a bi-lateral mastectomy and radiation, in May of 2010 her came up clean. She “beat cancer.” One month later, she found a lump in her chest wall–her cancer had spread to the lymphatic system and she was diagnosed Stage IV.  Since then the cancer has spread to her lungs, but she is still here and living strong every day with Metastatic disease.  Her motto is “Strength in the face of great uncertainty.”  Writing has been a great release for her and a way to express herself living in a world of unknowns.

Visit the LBBC Events Page for more information on the “Writing the Journey” Fall Writing Series. 

Amy Hauser: Horses.Healing.Hope. (Part Two of a Two-Part Series)

Amy Hauser never considered herself destined to be an author. From her self admitted “life-long inability to properly start and stop paragraph formations, among other things,” to being busy raising two children full time, a book simply was not on the radar.  Until God said otherwise. Today, the LBBC Blog welcomes back Amy to tell her story of how her religion and horses helped her to survive.

My journey through breast cancer also left me with a deep desire to positively impact other women who were travelling down similar paths. I knew that the compilation of my life’s trials had brought me to a point of greater connection with God, including during the breast cancer fight, yet realized not all women were similarly impacted. I felt led to point others to Him in a unique manner, while sharing our common struggles. I also wanted to address the aspect of cancer that seems to go almost unnoticed by the medical industry, which is to help guide women through the process of living beyond treatment as they navigate the often isolating stage of the “new normal” – where hair is growing back, the phone calls and meals dwindle and the doctors and surgeons release you from care. Fear and anxiety so often enter the scene and can consume a woman as she is often unprepared for this stage – a stage she was looking forward to with so much joyful anticipation!

Horses.Healing.Hope. (HHH) was created to help women navigate the inevitable emotional phases encountered during the healing journey. HHH blends nature, the horse and equine assisted therapy in a relaxed, peaceful environment, allowing women an escape from the everyday surroundings of post-cancer life. Horses have an amazing ability to reflect our emotional states – to help each of us identify and get in touch with our true heart – and its related wounds.

Today HHH offers sessions that meet weekly for two hours, for seven weeks. HHH has been a huge success in the North Houston, Texas area and we are excited to see it grow. We will also launch a program for newly diagnosed women facing breast cancer and are creating connections to women who have gone before them, to learn how to heal and grow in their walk with Christ.  These are not riding programs, but rather creative healing programs that utilize the horse as a tool toward increased overall healing.

In following this internal desire to help others, I have helped myself. Taking the focus off of my own circumstances and looking beyond, I have healed a part of my soul that could only be touched through serving the needs of others. Maybe serving should be a written prescription for all of us as we navigate life’s trials!

It is our dream to see HHH one day become the foundation of Made For More ministries HEALING RANCH. These ideas have been planted in my husband Tom’s and my heart for some time – to have a refuge that not only reaches out to cancer survivors, but also a place for entire families to have a respite from the ever-present “C” word – a getaway retreat that hosts both HHH retreats as well as ongoing sessions.

If you would like to learn more about Horse.Healing.Hope., sponsorship opportunities, Made For More, or IN HIS GRIP, please visit Amy and Tom’s website at www.MadeforMoreministries.com or like them on Facebook under “Made for More ministries.”

Annette Ramke, CHHC: Berry Almond Smoothie

We here at Living Beyond Breast Cancer feel it is important that no matter what stage you might be in–newly diagnoses, in-treatment, remission or recovery–your health and nutrition are paramount.  Today at the LBBC blog, we welcome back Annette Ramke,  certified health coach, cancer survivor and co-author of the book, Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, as she comes back for her monthly installment providing our blog readers with a tasty recipe and the real life reason it worked for her.

Smoothies were my go-to food during chemotherapy when I was too tired to make a meal or felt too nauseous to get anything solid down. Before I began making healthier choices with food, my typical smoothie was actually a milkshake – a few scoops of ice cream and some milk in a blender. Once I learned that I could make smoothies that were creamy, yummy and nutritious, I never went back to the milkshakes. I wanted to give my body what it really needed, especially while enduring grueling cancer treatment and trying to kick cancer.

I’m excited to share one of our favorite, delicious and easy smoothie recipes from Kicking Cancer in the Kitchen – the Berry Almond Smoothie!

This smoothie is energizing, filling and super tasty! Bananas offer potassium to help replenish lost electrolytes, and berries give a boost of antioxidants, those awesome little cancer fighters. You get your protein and some fabulous nutrients, like iron, calcium and magnesium from the almond butter. Anemia is common for those undergoing chemotherapy treatment and in many other people, and iron can help to treat this. Almonds are also helpful in relieving constipation, a common side effect of cancer treatment.

Photo Credit:
Steve Legato, stevelegato.com

Yield: makes 24 ounces

12 oz almond milk

1 banana

1⁄2 cup fresh or frozen raspberries

1⁄2 cup fresh or frozen strawberries

3 tablespoons raw almond butter

Combine all ingredients in a blender and mix at medium speed for about one minute or until mostly smooth. If a thinner smoothie is desired, add more water or almond milk and blend for a few more seconds.

Annette Ramke, CHHC, is a certified health coach and breast cancer survivor. She took an integrative approach to treatment and focused on a whole food, plant-based diet. She coauthored (with Kendall Scott, CHHC), Kicking Cancer in the Kitchen: The Girlfriend’s Cookbook and Guide to Using Real Food to Fight Cancer, released October 2. Learn more at TheKickingKitchen.com.

Suzin Glickman: “Presently” Living

Suzin Glickman is a former Long Island girl, survivor, professor, lawyer, mother, wife and daughter who found writing and creative expression to be one of the most therapeutic and inspiring ways to cope and heal from her cancer diagnosis.  She is pleased to share some of her favorite original poems with the LBBC blog readers for our bi-monthly series, Living Beyond Breast Cancer’s Writer’s Corner.

Salad Bar Marred - April 2012

They all went to the salad bar

I stayed back

and watched from afar

A rush of emotion

Swelled

Over me

Just from watching

Their backs to me

A seemingly insignificant moment

Then came that haunting

Once more

It comes as hauntings do

When you least expect them

Catching you quite unprepared

At a moment unaware

Shaking me at my core

Tears welled up in my eyes

Feeling queasy

Muscles and nerves reacting

My thought

Alarmed

How can this be?

The four of them

Will go on without me

I watch them move along the line

A outsider

Watching

Spying on them

Like a fly on the wall

Not accepting

I could be dying

We are out

Having family fun

And I

Have come undone

All because it is all about

I want to be part

Not apart.

*          *         *          *          *

Life’s Adjustments - April 2012

Let’s talk about life’s adjustments

The ones we have to make

When life

Gives us strife

And of our expectations

There is a breach

Our original plans

We realize

We might not reach

Those hopes and dreams

Upon which for years

We made plans,

Had aspirations

We will have to compromise

Economics, jobs, relationships, religion, family, health

At first, all these have their allure

Some people have luck

That is for sure

But few can escape some kind of kink

In what is planned, I think

Hopefully, one can find a cure

When life drops upon you manure

And endure

And so these adjustments

We do not always easily or happily make

Are life’s big message

Hanging on our door

( sarcastic, “oh, goody”)

We are now mature.

*          *         *          *          *

Suzin is now “presently” living in the Washington D.C. area with metastatic breast cancer and all that comes with it. Suzin started blogging in January 2012 after her re-diagnosis, occurring just at the 5 year mark since her first round of breast cancer. Suzin hopes to strike a deal with whomever it concerns in regard to living in this condition for a long time, maintain her sense of humor and be present for her family. Her goal is for readers of her poems get an “Ah Hah! Me too! “reaction and that the poems make them smile and touch a chord as well. To read more of her work, visit her Blog, ” Suz’s Muzes.”

Head to the LBBC Event Page for more information on our “Writing the Journey” Fall Writing Series.

Amy Hauser: In His Grip (Part One of a Two-Part Series)

Amy Hauser never considered herself destined to be an author. From her self admitted “life-long inability to properly start and stop paragraph formations, among other things,” to being busy raising two children full time, a book simply was not on the radar.  Until God said otherwise. Today, the LBBC Blog welcomes Amy to tell her story of how her religion helped her to survive.

My name is Amy Hauser and I am a fellow survivor of breast cancer.  Here is my story. It’s a simple story of an ordinary life and its challenges intersecting with an extraordinary God. With that, I think it is worth telling.

I was diagnosed with Invasive Ductal Carcinoma in May 2010 after discovering a walnut sized lump under my arm just two days after my annual well-woman exam.  What a mammogram was unable to detect, an ultrasound verified – that cancer had entered my lymph system. At 43, I began a six-month intensive chemotherapy plan, underwent a bilateral mastectomy and lymph node dissection, then a final reconstruction surgery. The entire process lasted roughly 12 months. During this time, God revealed Himself in mighty ways.

Before, during, and after my walk with breast cancer, my prayer was for God to show me His plan for my life, to show me how to use past trials (pre-cancer, that is) in unique ways that would bring blessing to others. The answers to those prayers has changed the course of my life as well as that of my family’s.

After the diagnosis, I reluctantly started to journal. I agreed it would be a way to streamline information, and keep me from getting tired of repeating my medical updates over and over again. The blogging quickly became an outlet for sharing my heart. God would prompt me to share something and instead of letting the fear of judgment from others rule, I would share my thoughts. Almost immediately, we were encouraged (and surprised!) to discover that others were gaining inspiration and that the insight channeling through the journal was powerful. That was God.

Several months after treatments had begun and as I began the process of getting life back up and running as normally as I knew how, I recall sensing God asking, “Just when are you going to start writing my book?”  I sorted through the doubt, heeded the lessons He taught me through cancer and that next week I began IN HIS GRIP…A Walk Through Breast Cancer.

IHG is a raw, open glimpse of a day in the life of a cancer patient and the story of God intersecting a life in progress. It is a story of how God works in the midst of our biggest struggles IF WE CHOOSE TO LET HIM. Not only will you get to know my family before, during, and after the cancer journey, you will see reflections that share what was learned after the fact.  This story shows how God worked not only on the struggles that were evident to the rest of the world, but how He worked in and through the cancer to heal deeper, more private wounds.

IHG was completed near the two-year anniversary of the lump discovery – a discovery that I initially thought would change my whole world.  Interestingly enough, it did change my whole world, but not as I expected.  While I thought breast cancer would rock me off my foundation, it did quite the opposite.  It cleared that foundation from clutter and allowed me to firmly anchor to what was lying beneath – the solid rock that was so readily available and intended for this purpose.  I just had to be willing to look and allow some of the clean up to take place.  Storms will continue to come. I don’t welcome them but I know they are inevitable – inevitable in ALL our lives, whether cancer or otherwise.  I know this story, His story, will be an inspiration for trials of MANY kinds.

God not only answered my cancer prayers, but my pre-cancer ones as well. From the inspiration to write IHG, to showing me how to “find my purpose and share with others through UNIQUE ways.”

Prior to the discovery of the lump, we formalized a ministry called Made For More, developing and sharing some unique women’s programs. Since the cancer, my husband Tom and I have fully launched M4M.  Several aspects have grown out of various trials in our own lives, cancer being only one of them.  An outreach program that I am excited to share is our newly developed HORSES.HEALING.HOPE. For Breast Cancer Survivors. It is an Equine Assisted Therapy program, currently offered in the North Houston, Texas area.

NO matter what your religious or spiritual beliefs, LBBC recognizes the strength that many woman find in their faith. Amy lives in The Woodlands, Texas with her husband, Tom and their two children, Ross (17) and Sara (12). Visit their websites to earn more about  HORSE.HEALING.HOPE for Breast Cancer Survivors and In His Grip:A Walk Through Breast Cancer.

Randi Rentz: What to Say (and What Not to Say) when Your Friend is Diagnosed

During Breast Cancer Awareness Month, we are asked to support and honor women from all over who are living with the disease. Whether it’s wearing your pink ribbon, donating to Living Beyond Breast Cancer, or simply talking with a friend or loved one who has been diagnosed, you are doing your part. Today, the LBBC Blog welcomes back avid writer, Randi Rentz, as she discusses the ups and downs of comforting a newly diagnosed woman.

A friend called recently. She had just learned that another friend of ours was diagnosed with breast cancer. She could not stop crying after she received the news and had not yet called our friend to offer her…what? What is the right thing to say? What, as a good friend, do you do? My friend called me, thinking I had all the correct answers. She wanted to know if she should stop by our friend’s house (in between sobs). She also wanted to know if she should leave her alone. Seriously. What to say? What to do?

As a survivor, I was touched by the many people who reached out to me, but sometimes, I really had to wonder, what people were thinking. I should have written down some of the things people said to me. Wishful thinking. Although people had good intentions during my diagnosis, I really yearned for friends and acquaintances to “Think Pink” before speaking the “Pink Language.” Let’s face it, my friends were well-meaning, but I was irked.

As we all know, pink is the universal color for breast cancer. It is everywhere. I’ve always loved the color pink, all tones, tints and tinges of it. What can I say? I’m a girlie-girl who loves any shade of pink; especially hot pink. It’s way bolder than blush-and not the least bit bashful. Although I LOVE, LOVE, LOVE, the color pink, please don’t tell me pink is my color; especially the same day of my diagnosis. Yup.

Empathy is wonderful, but please don’t say, “You MUST live!” (Duh!!!) or “Are you going to die?” (Geez!!!) And, PU-LEAZZZE don’t say, “My aunt, friend and/or grandmother died of breast cancer.” Ugh!

(I digress…sorry) To be honest, I didn’t know what I wanted other than to inch into my bedroom and wait for my doctor to call me with the next bit of medical information. I was completely self-centered (totally deserved.) I did not think about whether or not I wanted my friends to call, so in hindsight, I can see what a predicament the situation put them in.

So now I know you are thinking uh oh. What did Randi say to her friend who called her or what if I call a sick friend and say the wrong thing? What if I give them words of support and they want to say something snarky to me?  Or, what if I bawl my eyes out when I hear her voice?

I can only tell you based on my own journey into “Cancerville” what I think might be just the right thing to do. Here is my short list of do’s and don’ts:

• DON’T make remarks about your friend’s lifestyle. Keep your comments such as “How can you not know that by smoking you were putting yourself at risk?” to yourself. People need to come to their own conclusions about themselves.
• DO Listen. You are there to give your love and support.
• DON’T ask your friend if you can bring a meal or help somehow.
• DO say I’m going to take your carpool days. What time do you pick up the kids from school? Or, I am bringing over a meal for Sunday. What time works for you? Whether it’s a carpool, a doctor’s appointment, a meal or an errand, make yourself available, and be specific about what and/or how you will be helping your friend. Just DO it! My dearest friend made a meal chart, sent it out to all my friends via email and had everybody sign up for a meal (breakfast, lunch or dinner) during my entire treatment. She really earned her golden angel wings for taking charge!
• DON’T say, “You are going to be fine!”  That was the one-liner that really irritated me. In fact, any reference to being fine can magnify the situation. Do you know for sure that your friend will be fine?
• DO say, “I’ll be here to support you during and after your treatment. Enough said.
• DON’T call your friend and unveil the story of how you heard the cancer news, where you were when you found out, how you were told and how upset you are. Also, please don’t say, “Why didn’t you call me right away?” Please remember, this isn’t about you and your feelings, it is about how much you want to support your friend. All of the other details can come later. As she processes her experience I practically guarantee that she will want to tell you anyway.
• DO call your friend and offer your support and encouragement. You can open the conversation like this: “Oh Dee! I just heard that you are sick. How are you doing?”  It’s really not so horrible to cry, as long as you don’t make the conversation about you.

When I was diagnosed with cancer, I believe people saw me differently. Deep down I knew that I was still me, and I wanted to be treated the same as ALWAYS. In the back of my mind, I couldn’t believe I had a diagnosis of DCIS. Breast Cancer? ME? Being sick is so overwhelming, that to have friends come along and lift you out of many overshadowing thoughts, even for 30 minutes, is TRULY wonderful. It made me feel almost normal. Doesn’t normal feel so good?

As I said, I am not an expert. I know only how I felt during my journey into ”The Pink Bubble.” I think as a whole, the dos and don’ts are great guiding principles to stick to. As a friend, your role is to support, help and send love. That pretty much sums it up.

To learn more about Randi you can peruse her blog or read excepts from her book, Why Buy a Wig…When You Can Buy Diamonds!, when you visit her website.

Cate Stasio: “Chemobrain” and Posit Science

Guest blogger and survivor, Cate Stasio of Posit Science, is truly thankful for today’s scientifically-validated treatment options for “Chemobrain.”  Today on the blog, Cate share’s some monumental research and a great deal of heart on the subject.

Cate Stasio

When I received my cancer diagnosis, and discussed the fact that I was having difficulty remembering things and paying attention with my doctor, she told me it was “all in my head.”  (BTW, this was less than 10 years ago.)  Granted, her focus was on keeping me alive, and, while this conveniently was a mutual goal, I was struck by the fact that she could be so dismissive of the cognitive symptoms that were seriously disrupting my quality of life.

My fellow survivors, I found, were very vocal about the developing cognitive “inefficiencies” that made it difficult for them to multi-task or follow-through on work projects or family responsibilities.  Like me, these cancer veterans were dismayed by the lack of solutions available for our slowed thinking abilities—all the note taking or calendaring in the world couldn’t compensate for our uninvited lack of mental agility.  The Internet was rife with arguments over what caused cancer-related cognitive impairment; those 17 to 75% of us affected didn’t care about what started it, we just wanted to fix it.  We dreamt about having some modicum of control over an illness that had the audacity to remind us frequently that, in many ways, we were helpless.

Around this time, the founders of Posit Science, Drs. Michael Merzenich and Henry Mahncke, were not just talking about “chemobrain,” they were rolling up their sleeves in an effort to alleviate it.  As renowned neuroscientists, they hypothesized that some combination of stress, fatigue and medication/radiation treatment could weaken the myelin in the brain of a person with cancer; interfering with connections that help relay important information from one brain area to another.   Under their careful guidance, Posit Science developed and was the first to study a suite of computer exercises based on the principles of brain plasticity; designed to help people with cancer think faster, focus better and remember more.  Originally released at the International Psycho-Oncology Society in 2008, breast cancer survivors who reported chemo brain symptoms who used Posit Science training reported significant benefits in cognitive function and quality of life with resulting reductions in stress levels.  By completing an hour a day of cognitive training, participants showed that they had the ability to fight back and recapture the brain function and sense of self that cancer had interfered with.

Additionally, Dr. Diane Von Ah, an avid member of the Oncology Nursing Society who has spent years looking for evidence-based interventions for chemobrain, this month reports finding one.  In a study published in Breast Cancer Research and Treatment, Von Ah et. al. studied 82 cancer survivors reporting cognitive impairment.  Participants who received Posit Science training showed significant improvements in memory, thinking speed, depression, fatigue and health-related quality of life.  Additionally, Posit Science training recipients felt less anxious after completing training; with benefits lasting for months afterward.

People who read about my interest in chemobrain typically ask 3 questions:  1) Does chemobrain affect only breast cancer survivors?  2) How long does chemobrain last?  3) Who with cancer should use Posit Science cognitive training?  Recent reports and personal experience have helped shape my responses to these.

A 2010 study by Harrington et. al. demonstrated that cognitive limitations, depression, and fatigue consistently persisted in survivors of breast, gynecological, prostate and colorectal cancers 10 years or more following treatment.  These symptoms were present regardless of the types of pharmacologic or radiologic treatments endured.  To me this says that no one knows who will be affected by chemobrain, or how long it will last.

My response to who should use Posit Science cognitive training is pretty straightforward (though I have to admit that I am such an advocate of it that I convinced Drs. Mahncke and Merzenich to let me work for them.)  I think Posit’s cognitive training program is appropriate for anyone like me whose cancer diagnosis only increases their desire to be their best self for the people who love and depend on them.  I think it’s for anyone with an Internet connection who can spare 15 minutes a day to think better on their feet and remember all the little things they’re still lucky enough to hear their kids say.  I think it’s for people who, regardless of the stage of their cancer, can hear the words, “it’s all in your head” and find them empowering instead of belittling.

Those interested in subscribing to the program described in Dr. Von Ah’s study can do so by visiting www.BrainHQ.com.  Posit Science will be honored to donate 20% of your subscription to Living Beyond Breast Cancer. 

Like many cancer survivors who have been affected by cognitive impairment, Cate is thrilled that a scientifically-validated treatment option is now available. Upon submission, Cate let us know that there have been times in her life when bonds forged through LBBC were the only things that got her through the day, and she said, “There are no words with which  I can properly express my gratefulness to you and the LBBC organization.”

Posit Science is the leading provider of clinically proven brain fitness training. Its exercises, available online at www.BrainHQ.com, have been shown to significantly improve brain speed, attention, memory and numerous standard measures of quality of life in multiple studies published in more than 60 peer-reviewed articles in leading science and medical journals. This includes a study showing positive benefits for people experiencing chemobrain. The company’s science team is led by renowned neuroscientist Michael Merzenich, PhD.

Nicole Katze: Dr.Larry Norton and “Self-Seeding”

Dr. Larry Norton gave a thoroughly informative presentation on “How Modern Science is Revolutionizing Breast Health” at Living Beyond Breast Cancer’s Annual Fall Conference on Saturday, Sept. 29. Here on the Blog, LBBC’s Writer and Editorial Coordinator, Nicole Katze,  shares her experience oh his presentation at her first ever national LBBC conference.

I’ve always been fascinated by science. There’s a certain kind of satisfaction that comes from knowing how things work or why things happen. And even more exciting – science is the reason there are so many new things to fascinate me. There’s always a new finding, always a new idea. You think we’ve found every species on earth and then reports pour in about a new monkey found in the Democratic Republic of Congo.

Maybe most importantly there’s biological science. Medical science. Health science. The sciences that break us down as humans into our tiniest molecules and try to figure us out, try to make us better or help us heal. We are complex beings and there is so much happening within us all the time.

On Saturday, Sept. 29, I attended my first LBBC conference and had the opportunity to hear Dr. Larry Norton speak about some of the advances being made in understanding breast cancer. There are, of course, new treatments under study and the recent confirmation that breast cancer has four types – but what Dr. Norton presented was more than that. He talked about cancer cells and genes and DNA and how all of these together may eventually show us how some cancers metastasize and others don’t. He called it “serious science.”

Complex, yes. But pretty cool, right?

The process Dr. Norton described is known as “self-seeding.” In self-seeding tumor growth, metastasis happens in a cycle. Breast cancer cells that gain the ability to travel to other parts of the body – to metastasize – settle in the metastatic site and begin to grow; but then these metastatic cells can cycle back and return to the original tumor in the breast. The return of metastatic cells may help the original tumor grow, and faster. This theory is very different from our understanding of metastasis as a one-way road, in which cancer cells break away from the original tumor, travel to a new location and stay put.

But not all tumors are self-seeding. Dr. Norton explained that tumors that self-seed are driven by certain genes that tend to be present in tumors that may eventually spread. When these genes are active, metastatic cells in other areas of the body seem to be attracted to the original tumor and are drawn to rejoin it.

When it comes to treatment, understanding this process could lead to new targeted therapies that attack self-seeding cells, like anti-mobility agents to stop cells from traveling, or using white blood cells to stimulate the immune system and encourage the original tumor to attack metastatic cells that return. My own interpretation: the more we understand about this process, the closer we are to getting cancer to kill itself.

A decade ago, treatment for breast cancer was leagues behind where we are now. A decade before that, even further. The research Dr. Norton described at the conference may still be in its earliest stages, but it’s changing the way we think about breast cancer and its treatment. As Dr. Norton put it, “science is turning over our notion of the disease.”

To learn more about LBBC Medical Advisory Board member, Dr. Larry Norton, check out his bio, or search his name on the Living Beyond Breast Cancer’s website to read several of his contributions.

Josh Fernandez: Debra Jarvis and Finding Meaning

Rev. Debra Jarvis, Mdiv, says cancer is about finding meaning, trusting your gut, learning to take risks, developing your curiosity and staying awake. To highlight these points, Jarvis utilized a handful of stories throughout her closing speech at the Living Beyond Breast Cancer’s Annual Fall Conference on Saturday, Sept. 29. Here on the Blog, LBBC’s Web Content Coordinator, Josh Fernandez,  shares his experience hearing Debra speak at his first ever national LBBC conference.

Her first anecdote directly related to the title of her 2007 book, It’s Not About the Hair. After learning she had breast cancer in 2005, Debra and her husband called family and friends to give them the news. The oft response Debra heard was, “Oh my God, are you going to lose your hair?”

“After about the third phone call, I slammed down the phone and said to my husband, ‘I’m telling you, I’m going to write a book and I’m going to call it ‘It’s Not About the Hair,’’” Debra told the conference audience.

She later learned from friends that what they really wanted to ask was, “Are you going to lose your life?” For her friends and family, the hair question was a way to measure how bad the cancer was.

After explaining the book’s origins, Debra transitioned into her response to the question presented in the book: “If cancer is not about the hair, then what is it about?”

“I think any kind of really challenging experience is about finding meaning,” Debra said in her speech. “The real challenge is that nobody can tell us what our experience means.”

She said it’s up to the individual to discover this meaning, and that meanings are dynamic and change over time. Debra then discussed the importance of developing an attitude of curiosity rather than dread.

“We’ve all seen people facing challenges, and it takes a lot of energy…what if instead of contracting, we expand, move forward with our hands out and our palms up and have an attitude of curiosity, saying, “I wonder what this experience is going to be like?” she said. “When we approach any challenge with curiosity instead of dread, it suddenly becomes interesting and way less intimidating.”

LBBC’S Web Content Coordinator, Josh Fernandez

Debra said this attitude helps individuals  stay awake to possibilities and experience growth and change. She said being awake means “knowing that being alive is a gift, and that this gift is finite; it will end…To me, being awake is our task to love and leave the planet a better place in any way we can.”

Debra also said that it’s crucial not to “go back to sleep”. She cited an anecdote about a woman she met five years ago while working at the Seattle Cancer Care Alliance where she also received treatment. The woman was undergoing chemotherapy for cancer, and told Debra that she wanted to see her grandchild grow, start a garden, stop being judgmental and appreciate life in general.

Two years after the initial conversation, Debra ran into the woman in front of a chase case of a supermarket. Debra asked the woman about her grandchild, her garden and life in general, and the woman’s responses – among them being that her grandchild was a “nightmare” and that she didn’t garden because she didn’t want to ruin her manicure – indicated she hadn’t followed through on the promises she made to herself when she was receiving treatment. She was the same person she was before her cancer diagnosis; she had “gone back to sleep.”

When she finished telling the story, Debra said staying awake was important for continued growth.

“We don’t need to have breast cancer for spiritual and personal growth…but if we are touched by cancer, let’s use it. Let’s find meaning, let’s take risks and trust our gut, and be curious and open and not go back to sleep,” she concluded.

Check out Living Beyond Breast Cancer’s website to read Debra’s Ask-the-Expert questions. Also, feel free to peruse the Living Beyond Breast Cancer’s blog to read recent blog posts from Debra and stop over at Amazon.com to purchase her book, It’s Not About the Hair: And Other Certainties of Life & Cancer.