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/.

How I Learned to Stop Worrying and Love Tamoxifen Part 2

Last week regular blog contributor Randi Rentz shared the first part of her journey with Tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. Here she continues her story…

Where were we?

Oh, yeah.

If I was a betting woman (I’m not anymore) I’d venture that based on ATLAS (the study published in The Lancet) sales of antidepressants to breast cancer survivors are poised to go through the roof. According to studies, taking tamoxifen can lower the risk of a breast cancer recurrence by up to 50%.  So, many women are more than willing to tolerate its side effects to remain free of their cancer.

But…

Many of these women are also taking antidepressants to help restrain the hot flashes, vaginal dryness, low libido and osteoporosis that the estrogen suppressor can cause.

Don’t get me wrong. This drug does help many and the new study has found that taking tamoxifen longer than five years can further reduce deaths from the disease.  The researchers studied a group of nearly 7,000 women with ER-positive breast cancer. The women were randomly assigned to stick to just five years of tamoxifen or to take it for an additional five years. The study found a significant benefit from remaining on tamoxifen for 10 years:  Women were less likely to have a recurrence of breast cancer, and they were less likely to die of breast cancer than women who took the drug for only five years.

Be aware, however, that after menopause, tamoxifen may increase the risk of uterine cancer.  It also may increase the risk of blood clots in the legs and lungs in all women. My legs are already throbbing thinking about it. So it’s like most treatments:  There are both benefits and risks, and you have to work with your doctor to balance them.

So, what’s my decision? We’ll, I’m 4 ½ years in and have already had a conversation with my oncologist, which is forever changing. At the moment, I’m going to go for 7 years. I’m cautious about laying in a lifetime supply of tamoxifen. I’m open to using different drugs over time, or listening to a new study that could come out reporting different results.  What I really want and need is effective prevention. Until that comes, I’ll work with the drugs that I have for now.

Be sure to check out Randi’s website and read the excerpt from her upcoming novel ‘Why Buy a Wig…When You Can Buy Diamonds!’.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

For more of LBBC’s coverage of the ATLAS clinical trial, please visit our Spring 2013 issue of Insight our quarterly newsletter and additional news coverage.

How I Learned to Stop Worrying and Love Tamoxifen

Most of you already know Randi from her many contributions to the LBBC blog.  Today, Randi gives her take on tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. In her latest post, the first of a two-part series, Randi shares with LBBC readers her experience and thoughts on these latest findings.

I’m still not a full-fledged Tamoxi-Babe.

There.  I admit it.

But after reading lots of information released since The Lancet published a study showing the probability that tamoxifen treatment for 10 years instead of 5 decreases both the rates of mortality and chance of recurrence in women with breast cancer, I may find myself stuck as a passenger on Train Tamoxifen for a few more years.

Pass the happy pills (we’ll get to that in a minute).

I say “stuck” because I was hoping that train was coming to the station.  I was first given tamoxifen after I completed my treatment plan for breast cancer, which was ER-positive (lumpectomy, chemotherapy and radiation).  I honestly can’t recall the physical side-effects because this little thing called chemo-brain got the best of me (we’ll talk about that some other….what was I saying?) Anyway, after the first few months of tamoxifen treatment, the unexpected happened.

“Seriously?  Did you just say I have a mass growing on my left ovary, which is going to result in the need for me to have complicated surgery? Because believe me, that wasn’t in my cancer plan.”

Seriously.

My body betrays me again.  And then, a little voice in my head started asking if the tamoxifen could have been the reason for my gynecological “problem.” And before you say, “But Randi, studies indicate there’s maybe only a small chance of that happening,” I get it.  I really do, so thank you.  But, “small” ain’t “zero” and I already proved my ability to beat the odds by being diagnosed with breast cancer in my 40s so I know all about odds and how somebody needs to be in the “small” group in order for there to even be a “small” group and deal with the fact that it’s sometimes better to be a zero.

I digress.

As I recuperated from the big hysterectomy bag of a nightmare, my oncologist put me on an aromatase inhibitor, the results of which for me were some messed up side effects. Joint pain 24/7 bad enough to feel like I was going through chemo all over again. I couldn’t get out of bed without being in pain. I feared my days were numbered when I had difficulty just lifting my legs over my bed or unfolding my fingers one-by-one. I felt arthritic and old. Did I mention I was also cranky and belligerent? Like that crusty ancient neighbor we all had in the old neighborhood whose house we ran past because word on the street was she’d try to fatten you up with the gingerbread cookies she used as shingles on the roof of her house.  On the outside, I didn’t look a day over 40, but I felt like a 90 year-old on the inside.

After months of complaints and many aromatase inhibitors later, I came full circle back to tamoxifen. Ironic.  Even worse, it was Alanis Morissette irony better known as the “isn’t it ironic that the things I sing about in this song called “Ironic” aren’t actually ironic but really are just bad luck” kind of ironic. And that little voice was in my head again and it was asking if I was putting back inside of me the very thing that had got me to where I was in the second place. I wondered again if it caused me to lose my female reproductive parts. I even begged my oncologist to use me for a study regarding gynecological masses after taking tamoxifen.

“Not enough data.”

Again. Seriously?

I am the data!

And now The Lancet study, those aforementioned happy pills and a ticket to ride Train Tamoxifen.

I can tell you right now that I’m willing to bet my…

Wait. I was going to say eye teeth but on second thought I’m not voluntarily going to give up another piece of me. Let’s start again.

Randi’s story concludes next week with part two of The Seven Year Itch or How I Learned to Stop Worrying and Love Tamoxifen.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

“My mom had breast cancer.”

Drew and Courtney Daly and their boys

Courtney Daly was 37 years old when she was diagnosed with stage I invasive breast cancer, which manifested as two tumors in one breast.  In addition, she also learned that she had DCIS in both breasts. It is now one year since her diagnosis.  

Recently, her son Aidan completed a video project for school.  Let’s have him share his story in his own words. 

Hi, my name is Aidan. I made this video for a school project called “Think Care Act”.  For this project you choose a problem you care about and do something to help. Originally I wanted to raise money for LBBC, but then I decided to create a pamphlet and video for kids my age who might be scared if their moms have cancer. I wanted to help them know that there are other kids out there and people know how they feel.

This video tells the story of how my family and I got through my mom having breast cancer. My mom was diagnosed at age 37. She was one of the 10% of women diagnosed with breast cancer who are under age 40. It was really hard at first knowing my mom had breast cancer. But as we talked about the survivors we knew it got a whole lot easier. My parents were very reassuring and that made me feel better. Throughout the spring and summer, my mom had two surgeries, four chemo treatments, and tons of doctors appointments. She tried her best to come to my baseball games and other special events. She is an awesome-sauce mom!

I hope that this video helps many kids my age, and lots of families. If you are gong tough times right now I hope this video helps you.

My Mom Had 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.

Randi Rentz – Getting Back to the New Normal

On Tuesday, September 11, 2012, Living Beyond Breast Cancer will host a free teleconference, “Beyond Treatment: Understanding Your New Normal,” featuring Susan Hong, MD, MPH, FACP. The staff at LBBC often hears  from survivors that getting back to their regular lives can be challenging after treatment and the creation of a “new normal” is key to moving on. Join the LBBC Blog in welcoming back Randi Rentz, as she shares her “new normal.”

Normal. What is the “new normal” after breast cancer? Four years after completing my treatment, I am at it again, launching a web site that has taken many years to get underway, working full-time as a special education teacher in the area of Asperger’s, and consulting in the evenings. Again I’m risking financial security, working long hours, and insisting on having fun.

The point is, no matter what happens, I keep going on, making adjustments that fit my life. I like my life. While I was traveling in the scary tunnel of “Cancerville,” I did what most women do—I tried to maintain the normal routine of my life as much as possible. When a friend emailed me during my treatment, she wrote I was “crazy as ever,” which made me overjoyed.

Meanwhile, the world outside my “pink bubble” was going on as it always had. It was fast paced, taxing, demanding, and it was pretty draining. I have to admit, when I was finally able to rejoin it, it was pretty liberating.

I was thrilled to be able to go back to many of the same issues I’ve been dealing with for my whole life. I can say that I do have a greater perspective on what’s really important. I still sweat the small stuff. That’s just who I am. In my life, the small stuff adds up to the big picture that is my life and existence.

Although I may be in a new, slightly modified package, I am still whole, and unwilling to waste my time. This, too, is the same attitude I had before breast cancer. I was basically a happy positive person before breast cancer, and after it. Breast cancer just spelled out who and what I am.

Like most women I’ve spoken to, I can honestly say I eat better now (although I still eat desserts). I eat organic foods whenever possible, and I don’t eat fish full of chemicals or mercury. I never touch dairy products that were produced using hormones. And I try to avoid cosmetics that contain parabens, which mimic estrogen and just can’t be good for you.

Okay, I’ll admit I still use dye to color my hair and nail polish, both of which have evil ingredients in them, but I’m doing what I can. I take vitamins, limit my alcohol intake and exercise every day for an hour.

If you know me, that last part about regular exercise, is a total fabrication. But I do take yoga and/or a barre class when I can, and I try to do cardio two to three times a week.

Shocked?  Yeah, me too.

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

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.

Eve Wallinga: “It’s beautiful. It’s me.”

On Tuesday, August 21, 2012, Living Beyond Breast Cancer will host a free teleconference, Breast Reconstruction: Considering Your Options, featuring Frederick Duffy, Jr, MD, FACS. LBBC is lucky to have a wonderful network of women willing to share their stories on these more personal, yet under represented matters in the breast cancer community. Join the LBBC Blog in welcoming Eve Wallinga, as she shares why she chose reconstruction.

When I learned I’d need a mastectomy, I never considered not having reconstruction. I  didn’t even care if I was symmetrical, as long as I didn’t wake up with a blank chest.

Maybe I’m not as strong as other women, not as sure of who I am, as confident of my femininity. Or maybe I’m stronger. Strong enough to endure more surgery, pain, and recuperation to restore my breast. Strong enough to draw the line at losing that part of myself to this relentless disease. I needed to know I’d done all I could to fight and win.

I was fortunate to be referred to a plastic surgeon. Not all women are even told about reconstruction. But I was offered only two techniques, because those were the ones the plastic surgeons in my area performed.

I didn’t like the idea of abdominal muscle being cut and my tissue being tunneled up through my body while it stayed attached down below (called a “pedicled TRAM“). So I opted for an implant, which would be placed at the time of mastectomy and gradually filled over several months. Didn’t sound fun, but at least I wouldn’t wake up with nothing.

An hour before surgery, fate intervened with a twist. Seemed my cancer was a rare type. Maybe I’d need radiation after all. Since radiation and implants don’t mix, I’d have to delay reconstruction and face my nightmare scenario of waking up without a breast.

When I first took off that wide white bandage, I squinted my eyes to blur the sight. I turned away from the mirror when I dressed, closed my right eye to block any peripheral view of the empty space, wore a bikini top to bathe, a padded bra during the day. For sleeping, I cut out the left side of an old padded bra, so my left breast would be unfettered, but my right side covered.

But now, I can honestly say the delay was the best thing that happened. I had time to research options and realized I wasn’t limited to local reconstruction techniques. I saw online photos where I could hardly tell which breast was the original and which was the reproduction, and women whose bodies looked better in the “after” pictures than the “before.” I took an informed leap of faith and headed to New Orleans for stacked DIEP flap reconstruction.

Living without a breast for a few months made me better appreciate waking up with my new one. It’s beautiful. It’s me. Like my old breast was magically resurrected. I don’t feel like I ever had a mastectomy.

Despite your desire to get the cancer out of your body quickly, in most cases you can and should take the time to do homework. Depending on your circumstances, you can have immediate reconstruction or delayed, even by years. There are now skin-sparing mastectomies, even nipple-sparing, where basically the cancerous “stuffing” is removed and replaced with an implant or your own tissue. More fat sources are available for flap reconstruction, including gluteal flaps (your derriere), which I chose to reconstruct my other breast, prophylactically, several years after the first.

Your choice of surgeon is as important as your choice of reconstruction technique. Find a specialist with experience specific to what you want, and if you want a flap, don’t let the doctor dissuade you by saying you don’t have enough fat. Maybe that surgeon wants you to go with the only procedure they know, or they’re not experienced enough with flaps to make it work. Ask how many procedures they’ve done, what their success rate is, look at their before and after pictures, and talk to a former patient or two.

You can check out sites like www.breastcancer.org where there are discussion boards about all different kinds of reconstruction, and you’re sure to find women in the same situation as yours, as well as those further down the road, happy to share what they’ve learned. If you decide on reconstruction, there are many possibilities, though unfortunately none of the techniques are easy. But being a cancer survivor, you’ve already endured worse. I’ve made it a personal crusade to try to help empower women with knowledge about their choices. Whatever you choose, best of luck!

Eve Wallinga is a 6-year breast cancer survivor who lives in St. Cloud, MN with her husband and Yorkshire Terrier. Her two children have flown the nest. She is a co-founder of the Breastoration Foundation. Click here to read her blog, “The Breast of the Story.” Also, be sure to check out the Living Beyond Breast Cancer Event Page where you can get more information on the upcoming August teleconference on Breast Reconstruction: Considering Your Options.

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.