Cancer: A Risk, A Surprise, And Certainly An Adventure

Ronda Walker Weaver, LBBC‘s newest blog contributor and soon to be regular contributor, shares her story about her diagnosis and how it made her step outside of her comfort zone and learn to accept the new changes in her life.

I am 54; I teach writing at our local university and I work for an education company in my spare time. I am the proud grandmother of 16 grandchildren! I found a lump in my breast on Thursday Aug. 30, 2012, and by the following Wednesday I had a diagnosis of cancer and surgery the following Wednesday – Stage 1 Grade 3 Invasive Ductile Carcinoma, Triple Negative. Twelve days from finding to removing (nothing in the nodes or surrounding tissue). I was told I’d need 8 biweekly chemotherapy treatments and then 35 radiation treatments. No one in my family has had cancer; cancer has never ever been in my vocabulary.  I knew I could not go on this journey alone, and so I invited friends and family to join me. I figured the prayers and positive thoughts would be enough to bear me up. I learned my life was out of my control, and I had to live moment by moment, not only trusting others, but actually needing others to care for me. No plans – just prayers.

I’m not one to run away – I am not one to live in fear – I will walk away from anger, hurt, betrayal, poison, but I prefer negotiating, talking things through, working things out, coming to some sort of compromise. I believe in education, intuition, and inspiration.

Yet I’m not really a risk-taker, unless a risk is defined as driving down a road without a map, or pushing myself at the gym. I won’t put my physical self in any place that might be risky – I don’t like heights, I’m not a great swimmer, I’m probably not going to sky dive anytime soon. I like intellectual risks though – what a rush it is to learn, to discover, and to know I can learn – bring it on!

I prefer “looking forward to,” over “surprise.” I love adventure, but I want to know a little about what I am embarking on. Over our back door we have the phrase, “Go out for adventure, come home for love.”  I like planning, that’s part of the adventure, part of the journey – it’s like receiving a gift card for Christmas, and then using it, 2 gifts for the price of 1!

And here stands cancer.  A risk, a surprise, and certainly an adventure. However – fear, get thee away. I will learn what I can, listen to my own body, and pray for inspiration – it is already arriving.

What I’m learning:

1. Acknowledge it – Breast Cancer

2. Don’t blame – it’s not heredity, not second hand smoke, not diet. It just is. Why me? Why not me.

3. Listen to myself – I was told “something” was coming my way, here it is.

4. Time – a dear friend of mine taught me, “Give it time, the answer will manifest itself.” Reminds me of the tune, “You Can’t Hurry Love.” Time is of the essence, but all I have is time.

5. Get out of my comfort zone – My comfort zone is this, do, do, do, busy, help, seek, find, do, do, do. Now I will learn to be still – again.

Rhonda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

By Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

• What is your perspective?
• What questions does this article prompt for you?
• What are your concerns for your health or well-being, based on what you learned?
• Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

Fighting Depression and Anxiety with Your Fork: 5 Top Food Tips for Boosting Your Mood

As part one of a two part series, previous blog contributors Kendall and Annette, two young cancer survivors and authors of Kicking Cancer in the Kitchen, share their tips on how food can positively impact mood in preparation for LBBC’s upcoming webinar on anxiety and depression after breast cancer.

Let’s face it: Life is fast-paced and challenging enough as it is. Add a cancer diagnosis and the likely possibility of surgery, chemotherapy and radiation to the mix and it goes without saying that our world, and our emotions, get turned upside down and inside out. If we weren’t already facing them before, anxiety and/or depression can find their way into our lives and wreak havoc with our minds and bodies. This is an important time to make self-care a priority. Though we may not feel motivated to do so, taking steps to care for ourselves, even when we are down-in-the-dumps, can help pull us back up onto our feet a lot faster. Some self-care practices that I love are receiving therapeutic touch, sitting in silence and getting outside to move and feel the sun shine on my face. These all help lift my spirit and bring some peace. But beyond that, I’ve discovered the power of real food to help me feel better and stronger, physically, psychologically and emotionally.

Today I’d like to share my top tips around using food to help boost your mood. Try out these suggestions and see if they help the stress and anxiety lessen and the dark clouds lift just a little.

1. Eat a Whole Food, Plant-Based Diet: It’s clear – what we put onto our plates and into our bodies matters. When we consume a nutrient-poor diet, we aren’t giving our body what it needs to be strong and healthy on all levels, including mentally and emotionally. Transitioning from a diet which is focused on packaged, processed foods and moving toward a diet rich in whole foods provides the nutrients and minerals our body, and minds, are craving. A good rule of thumb is to stick with foods your great-grandmother would recognize.

2. Add Healthy Fats to Your Diet: Having enough of the right kinds of fats in your diet is important for optimal health.  Of special importance for mental and emotional health are omega-3 fatty acids. These have been found in some studies to be as helpful as medication for depression. Vegetarian sources of omega-3s are flax and flax oil, walnuts, and chia and hemp seeds. For those comfortable with a vegetarian and seafood diet (pescetarian diet), cod liver oil is also an excellent source.

3. Satisfy your Sweet Tooth in a Smart Way: Sugar, the culprit of many health woes, lures us in with its sweetness and causes ups and downs in energy and emotion. Step off of sugar’s roller coaster ride and satisfy your sweet tooth in a more balanced way. Enjoying whole fruit, like berries, which are high in antioxidants, give us the pleasure of sweetness which won’t interfere with our blood sugar level while at the same time giving us a healthy boost! Win-win situation! Dark chocolate (the higher the cocoa content, the better) is also another healthy way to enjoy a sweet, rich treat.

4. Vitalize with Vitamins: All vitamins and minerals are important for our health, but certain ones stand out in importance for mental and emotional health. Vitamin D, which is produced by our body when our skin is exposed to sunlight, often needs to be supplemented in our diets in order to obtain adequate levels. Consider adding in some Vitamin D along with some careful exposure to sunlight. Vitamin B-12 also plays a role in our ability to manage stress and anxiety. For vegetarians and vegans, supplementation is important. For pescetarians sardines, salmon, halibut and cod are all choices high in B-12.

5. Pleasurable Protein: Including protein at each meal and snack can go a long way to helping us deal with depression and anxiety. And shifting our focus to healthy, plant-based protein foods will benefit us on so many levels. Try including some leafy greens (yes, they contain protein!) like parsley, broccoli, romaine and kale in a meal or two a day. Snack on almonds and walnuts. And enjoy the wide variety of beans – like black, pinto, navy and adzuki, just to name a few – in soups or dishes.

As challenging as it may be to ditch the familiar – and often unhealthy – comfort foods we are used to when not feeling well, the effort we make to clean up our diets and our plates can pay off in helping us face the stress and anxiety which our lives, and cancer, may bring us, and can also help brighten our moods as well. And the best part: eating well tastes delicious, and the sights and scents and company of a good meal can help lift our spirits, too.

Part two of this series will discuss the idea of ‘comfort foods’ and why we turned to them when we’re feeling down. Since comfort foods are stereotypically rich and decadent, Kendell and Annette will take your most popular comfort foods and make them healthier with new lighter recipes! To submit your favorite comfort food to be lightened up in a new recipe, please leave a comment here or visit our facebook page! Maybe your favorite indulgence will make the cut and you’ll have a great new recipe to try! Happy voting!

Don’t forget, on May 15th LBBC will be hosting a free webinar titled Anxiety and Depression After Breast Cancer from noon to 1pm featuring guest speaker Dr. Ruth Steinman. Click here for more information or to register.

If you’re interested in learning more about Kicking Cancer in the Kitchen or or purchasing their healthy cookbook please visit http://thekickingkitchen.com/.

Susan Navissi: Feelings from Afar

Living Beyond Breast Cancer hosts 3 national conferences, 14 national teleconferences and offers a toll-free Survivor’s Helpline that we know many women across the United States utilize. However, women all over the world have been affected my breast cancer and we are honored to know that are services are reaching to other parts of the world. For this month’s first installment of “Living Beyond Breast Cancer’s Writer’s Corner,” we welcome Susan Navissi, a strong survivor from Berlin, Germany.

Diving

breathe breathe dear, don’t be scared
- concentrate on your work, survive
and dive dive – through these dark times
where fear is your companion
and love has to fight so hard to come through

and then, when you come up after a dive
look around and see -clear now
what you need , whom you want, where you want to be
and why this life shall be lived fully

uma soona

September 2011

* * * * * * * * * * *

Agreements

this precious beautiful cancer sister wrote:

it may sound strange but what I did was asking it to go away
suggesting it may be a star in the dark blue sky
so I will not forget, for I do like to watch the stars.

dearest sister, no it does not seem strange
same did I – drowned mine in the little lake
asking it to never ever come back
for I do not need it, but do like to watch the water.

what else do we do while healing?
crying rivers, wearing our wellingtons to jump in the puddles
convulsing in pain, reading the news who shall be bombed next
hugging our loved ones, drinking each good word, look and touch.

whether healthy or ill
listening to lullabies of the axis of evil
may make you think
about human kind

November 2011

antiope

* * * * * * * * * * *

(*Note: As Susan’s native language is German, we felt it only appropriate to include some of her work in her own “voice.*)

Rosennacht

Die erste Nacht war voller Rosenduft

Küsse regneten auf meinen Körper

weich und zärtlich

von den schönsten Lippen

Ich werde arm sein, erklärte ich,

keine Bücher mehr und keine Schuhe!

dann werden wir barfuß in die Bibliothek gehen,

sagtest du- und ich habe dir geglaubt

Immer wollte mein Körper neben deinem liegen.

Blind war ich und taub

Vergewaltigende, Furie, Irre, Schamlose

und zärtlich, sorgend und liebevoll.

Nach allem, was  mein Körper kennen lernte,

Holocaust, Fukushima und Mansonism

bin ich trotzdem noch erstaunt

über das

was war

damals,

in der Nacht als alles nach Rosen roch…

du, ich, die Nacht und die Zukunft, die zwischen uns lag.

Kali

* * * * * * * * * * *

“I send my best wishes and love to all my sisters out there, being all brave and enduring this.”

Born in Berlin, Germany, Susan is a mother of a 24 year old son and was diagnosed with a triple negative tumor involving the lymph nodes in  june 2011 at age 44. In the middle of political upheaval, the responsibility of success  at work phase and in love after a bad time; it just did not fit. Fortunately, Susan had access to her feelings of fear and terror and expressed them in poems and paintings. Susan has made is through chemo, surgery and rehab and lives every day saying “I am healthy and will become very old.” Living Beyond Breast Cancer will be hosting another Fall Writing the Journey Series where survivors can creatively express and document their own feelings starting October 9th.

Judy Zwillenberg: Insights from an LBBC Intern – Part 2 of a 3 Part Series

The staff here at Living Beyond Breast Cancer is excited to have many new faces and strong minds in the office, with a special appreciation going out to our interns. In this second installment of her three part series, intern Judy Zwillenberg shares what she has learned while researching triple-negative breast cancer.

As an intern in the Education Department at LBBC, I have been assigned a variety of projects pertaining to different groups of women with breast cancer. For this blog post, I would like to discuss my research on triple-negative breast cancer (TNBC) and the projects associated with it. Similar to my work on the Young Women’s Initiative—which I discussed in my previous blog—I was asked to search for articles focusing on the quality of life for women diagnosed with triple-negative breast cancer. More specifically, I attempted to find out if women with triple-negative breast cancer identify themselves as “different” from other breast cancer survivors, and if any articles addressing psychosocial issues for women with TNBC existed. Unfortunately, there was not a lot of information available on those topics since, as expected, the medical world primarily discusses treatment options. Nonetheless, I read a plethora of articles and learned quite a bit about triple negative breast cancer.

To explain it simply (which, in all honesty, is not that simple), TNBC is a type of breast cancer that lacks estrogen receptors (ER), progesterone receptors (PR), and human epidermal growth factor 2 receptors (HER2). Because it does not have these three receptors, it is aptly named “triple-negative.” The reason why this is especially relevant is because many breast cancer treatments work by targeting ER, PR, and HER2 receptors. But, since TNBC does not have these receptors, other treatment methods have to be used. Many of the articles I found addressed this treatment dilemma, as well as provided me with an extensive background for my next project connected to triple-negative breast cancer: an environmental scan.

For this project, I looked through the websites of many organizations known to provide some resources to women with triple-negative breast cancer to see what specifically they have available. I found 14 organizations, and of those I categorized them according to what types of services they advertise. 11 of the 14 groups have an informative section on their site devoted to triple-negative breast cancer; however, most are brief and provide very little information. In fact, the majority of groups outline treatment options or a simple overview of triple-negative breast cancer instead of focusing on an in-depth explanation of the cancer, symptoms during treatment, and life as a survivor. Only 4 organizations have PDFs or publications available which extensively detail TNBC: CancerCare, Triple Step Toward the Cure, and LBBC and TNBCF jointly compiled the comprehensive “Guide to Understanding.”

From the environmental scan, I also found that not many organizations hold conferences or informative workshops for women with TNBC. This is somewhat understandable, seeing as not enough is known about triple-negative breast cancer, and it is difficult to provide information when there isn’t much available. However, this doesn’t explain why there are very few online or in-person support groups for women coping with TNBC. Even without up-to-date information on triple-negative breast cancer, organizations can run support services so women can find solidarity among others coping with triple-negative breast cancer. Unfortunately, this does not seem to be the case in the TNBC world.

This may seem disheartening, but it gives organizations like LBBC an incredible opportunity. We can work to fill this void, and provide women affected by triple-negative breast cancer with services they need and deserve.

Judy is a rising sophomore at Cornell University as a Biology and Society major.You can find more information about the triple-negative breast cancer at the Living Beyond Breast Cancer website. Come back next month for another peek into Judy’s work here at LBBC.

Jeanette Caligiuri: Triple Negative, Triple Threat

On Tuesday, July 10th, Living Beyond Breast Cancer will host a free Community Meeting addressing the diagnosis of triple negative breast cancer.  In preparation for that event, LBBC would like to introduce Jeanette Caligiuri, co-founder of Faith & Hope Boutique and an eloquent triple negative breast cancer survivor.

I am sure we all vividly remember the day that our lives changed forever when our worst fears were confirmed; “I am so sorry…you have breast cancer.” I wish I could say I was stunned or shaken, but what I was feeling was almost relief…

Breast cancer has always been part of my life; it very hard to remember a day that we didn’t coexist. The disease has touched every female family member on my maternal side. I have childhood memories of spending Thursdays at Pennsylvania Hospital in outpatient chemo with my mom who was diagnosed in her late twenties. I often assumed that everyone’s mom was bald and unable to hug too tightly because of her latest “boo-boo.” My mother was taken too soon, barely thirty-five, her mother in her early fifties and the chain continued…to me. To some, my story is sad, but to me it’s empowering. I armed myself with knowledge and preventative care. When the enemy came knocking, I would be prepared. I had an army of three who I felt with me through every surgery, each round of chemo and numerous setbacks. I had the knowledge that I was a BRCA1 mutation carrier—the only puzzling thing about my diagnosis that I was to learn was that my breast cancer was triple negative.

“What does that mean?” I naively asked the surgeon, “Negative is good, right?” I heard myself scream with fear. “Not exactly” are not words of reassurance from your doctor as he went on to explain and rattle off statistics that I was no longer able to comprehend. My focus was on aggressive, poor prognosis, higher mortality and many more awful adjectives.

Upon returning home, I immediately hit the web and researched into the wee hours of the morning. I remember waking the next day paralyzed with fear that I would never see the youngest of my three sons’ graduate elementary school, let alone Start College. I vaguely remember time passing slowly until the following weekend arrived, when I attended my first annual Fall Conference: “News You Can Use” hosted by Living Beyond Breast Cancer. That morning, before the first keynote speaker took to the stage, I was embraced into the sisterhood that spoke to my fears and filled me with resolve. If anyone was meant to be in attendance that day, it was me, as a key focus of the conference was on triple negative breast cancer. I learned so much that day and left with renewed spirit and most importantly, hope.

Now that I am a six-year survivor, I have taken many lessons from this journey: that we don’t get to choose what happens to us in life, but we do get to decide how to use it. My experiences have given me a voice to speak to young women while volunteering for groups like Living Beyond Breast Cancer and Young Survival Coalition. I have been rewarded the gift of purpose by co-founding my survival shops, Faith & Hope Boutique. But the greatest lesson I have learned is that good things come in threes: the legacy of my Grammy, mom and myself. My three sons, who I have watched graduate from elementary and high school. That we all have a past, can live for today and tomorrow is future enough to plan for. That most importantly, a triple negative diagnosis what not my ending, but a new beginning.

For more information about Faith & Hope Boutique, a shop fully staffed by survivors who are ABC and BOC Certified and rely on their own personal post mastectomy experiences to aid in your recovery, visit their website. Also, if you’re interested in learning more about triple negative breast cancer, head over to the LBBC website to order or download the Guide to Understanding: Triple Negative Breast Cancer.

I was 12-years-old and didn’t understand its power

Mohammed Adam Jr. is the 19-year-old grandson of Wanda L. Brown, a 7-year triple negative breast cancer survivor and President and Co-founder of Sisters Network Columbus OH, Inc. When Mohammed was 12-years-old, and his grandmother shared the news with family and friends his innocent age hindered him from understanding the toll of events that would later follow. In this school essay written by Mohammed his freshmen year of college, he shares his experience of watching not only his grandmother’s recovery from breast cancer, but Mohammed was very observant of the emotional brokenness that the diagnosis played on his very own mother.  

As a young child growing up, my parents tried to protect me from many situations such as, death, drugs and alcohol.  Disease is one unfortunate thing which is unavoidable.  When I was twelve my grandmother, on my mother’s side, was diagnosed with breast cancer.  Breast cancer has devastated many women and their families all over the world– I never thought that it would grow so close to me.

On a peaceful autumn evening, during early night hours, my grandmother was in her room preparing for a well-deserved relaxation period after a long day.  In the past she had heard many stories of women discovering the tumor themselves through self-examination, while others stumbled across an unfamiliar lump in their bosom.

With thoughts of past women and their stories in mind, my grandmother made the vital decision to exercise her intelligence.  She gave herself an inspection in search of this infamous lump. She unexpectedly discovered it. 

“It can’t be cancer– at least I hope it’s not,” she thought, with a puzzled expression.

She was unmindful to the fact that this lump was a developing army of malignant cells.  Before her doctor’s appointment, my grandmother continued to go through with her regular every day routines as if everything was fine; which in her mind she was.

November 4^th during her scheduled appointment with her physician; “Is the lump cancerous or is it something else?” 

The doctor had demanded her wandering attention before breaking the news.  He admitted that, the mountainous thing she discovered in her chest could possibly be cancerous.  But she didn’t give much thought to the potential dangers of the situation at hand; especially since this cellular deformity didn’t exist in our family’s history.  She was more concerned about her Christmas plans and wondered how she would celebrate her upcoming birthday.  A later biopsy confirmed that the tumor was cancerous.

During one of her many mother-daughter conversations that she had with my mom on a regular basis–you know, the ones where they share laughs and stories and also catch up on recent events– she mentioned everything that had occurred, from that shocking autumn evening till present.  She was very demure about the incidents.  But she said it was cancer.  The mood of the conversation abruptly shifted.  Devastated, overwhelmed, shocked– none of these words could truly describe the emotions my mother conjured up from the despicable words:  “I have cancer.”  

Deviating from thinking as the nurse she is, but instead a concerned child, my mother truly believed that cancer meant death.  My mother has cancer– my mother is dying; it was all the same.  This heartbreaking moment, she will remember forever.  Despite feeling as though her heart was ripped out and dispassionately thrown into the never ending abyss, she knew that keeping her composure, staying strong, and being encouraging was best. She had to keep a stone-face and not show her true hurt.

My grandmother organized a family gathering where she broke the news and told everyone that she’d recently been diagnosed with stage two triple-negative breast cancer. All of this she said with a smile. It was as if to assure us that everything would be okay.  Everyone was shocked by the news.  At the time I was twelve, the most I knew about cancer was that it caused tumors and it was a zodiac sign.  I was ignorant to its power.

It was time for surgery.  It was December.  While everyone was thinking about what they would get for Christmas, my grandmother was recovering from a surgery. My mom was more emotionally involved than I was.  In the presence of my grandmother she would be as uplifting as possible, but at home, I witnessed her inner sorrow.

My grandma’s war with breast cancer made her decide that she would participate in spreading the word and explain to women that this illness is one that is non-discriminatory and that anyone can be affected by it.  Educating women, of any ethic background, about breast cancer occupied a large portion of her life.  In 2007 she started the Sister’s Network and became president. 

This disease has produced great turmoil in many families. I’ve learned how not to take life or anything in it for granted because it could be here today and gone tomorrow.  Despite life’s difficulties, you just have to keep moving forward.

Encourage your pre-teenager to give a perspective and join in on this discussion that targets younger-aged caregivers. Was your pre-teen, like Mohammed, oblivious to what cancer really is, or did s/he have more insight on the disease? Comment here or on our Facebook page.

Life after treatment – why it’s important to let the memories go

This entry was written by Linda Oken. Linda, a dedicated LBBC volunteer, also blogs regularly about her quality-of-life experiences: 

Remembering … or NOT

As that time of my life moves further in the past, I find that I have forgotten so many details of what the experience of treatment was like.  Starting from the day of the biopsy, the next 7 months of my life included diagnosis of my triple negative breast cancer, then lumpectomy surgery, followed by more than 6 weeks of daily radiation and 6 months of twice a month chemotherapy.  All of that was more than 11 years ago!!

Those 7 months came with a lot of anxiety, fatigue, side effects, discomfort and worry.  As I focused on each decision (lumpectomy or mastectomy?  chemo or no chemo?  where to go for treatment?)  I read and learned all I could in order to make an informed decision at every step.   My mind was filled with information overload.  I called it “All this stuff I never wanted to know about.”  Often I would wake up in the middle of the night and review the overwhelming amount of info in order to make the next decision, and hope that it would be the right one for me at the time, and for my future.

But today, if you were to ask me about what absorbed me so completely in those days, I am no longer able to remember many of the details.  What was the name of that medication I had to take exactly every 6 hours for 3 days after each round of chemo?  Who knows anymore?  And at this point, why should I care?  Because now, if I were to have a recurrence or a new cancer, a lot of what I experienced 11 years ago would be irrelevant today.  So much has changed.

How about you?  Are you in treatment now?  Does it seem to be taking over your life and your thoughts as it seemed to me at times back then?   Are you as obsessed with the details as I was back then?  When you are finished with your treatment, and I hope you will be soon, these details will fade from memory.

If your treatment is behind you, it is time you work on the process of letting go of that part of your life.  Take some time to think about what you now want to do with your time and your energy.  Yes, you still have to make follow-up appointments – and show up for them!  Yes, you still have to take care of your health. 

But you do not have to lie awake at night thinking about all those active treatment concerns any more.  At least, that is what I realized after a while. 

Since those days I have enjoyed many other life experiences totally different than treatment for breast cancer: for example the marriage of my daughter, the births of my grandchildren.  Indeed, these are the memories I cherish and would rather bring to mind.  Join me in trying not to remember those days. After all, we want to live, beyond breast cancer.

Linda shares a moment with her two granddaughters.

Of course there have been other unpleasant events in my life as well, but I do try to focus on the good stuff.  True, it’s not easy sometimes.  And the petty nuisances of daily life too often absorb my attention and drive me nuts, as they do all of us.  Then I remind myself that, as annoying as they are, problems like car trouble are definitely preferable to dealing with cancer!

Let us know how and when you decided to move forward after breast cancer treatment. What advice would you offer to women who seem to have a hard time letting go of the ups and downs of treatment? Comment here or on our Facebook page.

No Two Women Are Alike

This entry was written by one of our volunteers, Phyllis Allen. Phyllis is a volunteer for our Survivors’ Helpline.

When I first started volunteering at LBBC, I became aware of an alarming statistic. When African-American women are diagnosed with breast cancer, they have a 38-40% higher mortality rate. If you add in the fact that triple negative breast cancer is more difficult to treat and more prevalent among African-American women (39% are diagnosed), the survival rates start to frighten women of color.  As an African-American breast cancer survivor, all of the stats above concern me.

When I was diagnosed with breast cancer, I decided to learn everything I could about the disease so I could talk to my medical team about my treatment and my chances of survival. There is still the perception in the African-American community that being diagnosed with breast cancer is a death sentence. Women are afraid of losing their breasts and worry about the side effects of chemotherapy, I.E., losing one’s hair. Some women are just afraid of any surgery, period. All of this leads to some African-American women delaying seeking diagnostic tests and treatment. As a result, African American women are less likely to be diagnosed at an early stage of breast cancer. Once we seek treatment at a later stage of the disease, it’s harder to get a positive outcome, and thus feeds into the perpetuation that a diagnosis of breast cancer is a death sentence.

My grandmother was diagnosed with breast cancer in January and passed away the following February. Granted this happened in the late 1950s, but a number of families have relatives who have waited too long to seek treatment. I took it upon myself to discuss my diagnosis and treatment with friends, family and colleagues so that we all could learn about breast cancer and hopefully, would be less fearful about the outcome. Women of color must be encouraged to be more proactive in preventing a late breast cancer diagnosis. This means conducting breast self-examinations every month and having regular mammograms depending on your age and family medical history.  While women complain that a mammogram is painful, it’s a lot easier to deal with that discomfort instead of having to tell your family that you have breast cancer.

African-American women must be able to afford health insurance that encourages preventative care.  As women we tend to put our needs last, but if we’re sick we can’t attend to the needs of our loved ones. It also means providing information to hospitals, health clinics, medical care and social service professionals who come in contact with African-American women who are at risk for and/or have been diagnosed with breast cancer. LBBC provides a lot of literature that people can read and understand so that they can have meaningful discussions with their health care team.

One of the more distressing things I have learned as a volunteer for LBBC is that a number of African-American women tell me that they refuse thetreatment plan recommended by their medical teams. The main complaint is usually that they want a more holistic treatment of their breast cancer. I always ask the women if they have a medical degree and, if they don’t have one, I insist that they speak to their medical team about their concerns. More and more physicians are listening to their patients’ requests for a treatment that is not so toxic, but it must be discussed in terms of each woman’s case. No two women are alike in every respect. I strongly believe that knowledge of treatment options is key to the woman committing to finishing the treatment plan that she and the medical team decide is best.

Bottom line: if there is mutual  respect  between medical care professionals and the women they serve, I think it could make a dent in the higher mortality rate of African-American women diagnosed with breast cancer.

 

A Special Anniversary

It’s hard to believe how time flies…

This year we’ll be celebrating the 10th year of our Annual Conference for Young Women Affected by Breast Cancer. We host the conference with the Young Survival Coalition. This year’s conference will be in Atlanta and features a variety of workshops on topics like lymphedema, yoga, nutrition, advanced breast cancer, fertility/pregnancy, managing emotions, triple-negative breast cancer, caregiving and more. There’s also a Pure Romance pajama party on Friday night and a night of dancing on Saturday. The whole weekend will be about you getting the information you need & networking with other young women. Who knows, you may meet a lifelong friend!

The conference website has all the information on registration, the weekend agenda, workshops, speakers, things to do in Atlanta, etc. If you need financial assistance, we have a limited number of travel grants and fee waivers. These go fast, so don’t wait to apply!

If you’re unsure about whether to attend the conference, check out the video below. Many young women have found incredible support simply by attending the conference and meeting others like them. Give it a chance. It just may change your life.