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/.

Randi Rentz: Here to Help

Regular LBBC blogger, survivor and author, Randi Rentz was recently contacted by a woman for information and support about being newly diagnosed.  At Living Beyond Breast Cancer we have volunteer survivors who provide the same service through our Survivors’ Helpline. Here on the blog, Randi shares her answers as well as her appreciation for organizations like LBBC.

 Source: winmesothelioma.blogspot.com

A newly diagnosed woman (who did not want her name mentioned) recently contacted me about my breast cancer experience. Like most newly diagnosed women, she had many questions. Although we stayed on the phone for two hours, I wanted to give you a short Q & A regarding self-exams and my go to organization, Living Beyond Breast Cancer.

Q. Tell me a little about yourself and your lifestyle.

A. My name is Randi Rentz, I am 46, and single. I work for a public school outside Philadelphia, where I teach children, K-5 on the Autism Spectrum; primarily children diagnosed with Aspergers Syndrome. In addition, I have my own consulting company, Rentz Consulting, where I work with people of all ages on the spectrum. I have also just completed a book called “Why Buy a Wig…When You Can Buy Diamonds,” which is a memoir about my breast cancer experience. I am hopeful for a Fall 2013 publication. You can find more information about my book at www.randirentz.com.

Q. Describe how you found your cancer, were you on ‘watch’ or did it sneak up on you?

A. I found my lump doing a self exam in the attic of my father’s house while packing up his mementos after he passed away. I had sharp pains shooting below my left breast into my rib cage. I was only 42 and had no immediate family history or a first degree relative with the disease. I credit my life being saved to groups like Living Beyond Breast Cancer, for creating so much awareness and education about self-exams. When I told my doctors about the lump many of them told me not to worry because it was probably a cyst since I’ve had a few cysts before. Also, I was relatively young and had no family history. I think it is so important, for young women especially, to do breast self exams. But, my doctor I first showed the lump to insisted that it wasn’t anything to worry about and to go home after she looked at my mammogram. I insisted in getting an ultrasound, which looked bad, and then I got a needle biopsy the following week.

Q. Following diagnosis, what helped you cope the most, and gave you strength?

A. My friends (they came to treatments and took care of me by cooking for me, doing my laundry and just keeping me company), and co-workers (they were such cheerleaders and volunteered to sleep over my place many evenings)! Also, my doctors were incredibly supportive (always reassuring me that I was doing a great job with treatment). And, therapy (I saw an amazing therapist who specializes in treating cancer patients and their families). Speaking to other survivors was incredibly helpful: that is why I wrote my book…to be there for other women.

Q. How has breast cancer changed your outlook on life?

A. I try to make myself worry less about the little things and feel very appreciative of life. We recently had a talent show at school where I cried when I saw a few girls dancing on the stage….absolute tears of joy. I could not believe how lucky I was to be watching these girls leap through the air. They looked so beautiful in their pink tutus, black tights and pink ribbons in their hair. I realized that my life has gone on, but there is always an homage to how lucky I am to be living, an appreciation that pink ribbons have such a complex meaning to me.

Q. What advice would you give to someone who is newly diagnosed with breast cancer?

A. Do your homework and get involved in your treatment options because it will make you feel so much more in control. Get a 2^nd and 3rd opinion if you need to (I got 5)!

Q. How has Living Beyond Breast Cancer been helpful to you?

A. The educational programming that LBBC is doing is making me feel that the world will be a better, safer place for women diagnosed with breast cancer. In addition, their goal is to empower all women affected by breast cancer to live as long as possible with the best quality of life. And, I know that feeling the power of their organization, the power of their community, makes me feel that I am not alone in this fight. The organization continues to make me feel like I am part of a huge team in fighting this disease. Also, I really think that LBBC helps people realize how much the families are changed by breast cancer, and the ripple effect of a breast cancer diagnosis on a family. LBBC has shown me how much can be done in the fight against this disease because breast cancer often leaves us feeling so powerless. LBBC is a great example of how much can be done, and how much hope there can be in ending this terrible disease.

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.

A Daughter’s Breast Cancer Journey: Through Her Mother’s Eyes: Part 2 of 3

This entry was written by Nancy Amorosi. Many of you may remember Jaime Rossano, one of the year-long series bloggers who, in a raw and honest tone, shared her breast cancer journey from diagnosis to post treatment in 2011. In this entry, her mother gives us her perspective of the journey. Over the year, she tried desperately to hide her true feelings of fear that consumed her heart facing the reality that she could never handle the idea of losing her baby girl.

Every Tuesday for the rest of this month, join Nancy as she recaps her daughter’s breast cancer diagnosis in a 3-week series.

Read Jaime’s blogs by searching “Jaime Rossano” in the search box on this site.

This year Jaime is getting adjusted to not having a blog deadline, having completed her year-long series in December of 2011. But the start of the 2011 New Year introduced us to chemotherapy and the words of one kind nurse that did not come true – “Oh Jaime, you are so young this will be a piece of cake”. So the infusions began. Within hours the color would drain from her face, the nausea would creep in and by evening and the days to follow she was sick, suffering headaches, bone pain, body aches, nausea and worst of all she lost her smile. My heart was in so much pain. I felt so incredibly helpless and could not bear to see our little girl suffer so much. I gave her a small red heart locket with little Ronnie’s picture inside. And when the light began to fade from her eyes I would whisper to her to look into her baby boy’s eyes and draw strength and courage to fight. I admit there were days for me too when darkness overshadowed the light and I would hold my grandson and almost magically felt a new sense of hope. Sure enough with each passing day the symptoms would fade and her smile would re-emerge giving us all a renewed sense of hope. Only to repeat this cycle again and again and again and again and again and again.

Within weeks of starting chemo the hair clippers buzzed and her locks fell to the floor. She could not bear to watch her hair fall out strand by strand so she took control and beat the monster called “cancer” to the punch. She wore a beautiful colorful bandana each and every day. We spent chemo days side by side and the five or six “sick” days to follow were filled with emotion, sadness, fear, laughter, anger, frustration, and emotional exhaustion. Our lives had developed a new “routine”. Seems silly but we actually got good at the routine of chemo week. But, they were also the most difficult, emotional and exhausting for both of us in very different ways. Somehow we found humor among the chaos. Days led to weeks and weeks led to months and before long chemo was done. The amazing strength, courage and determination in our daughter’s eyes week after week continued to give me hope.

Radiation therapy followed week after week and despite feeling tired and weak her resilience prevailed. She maintained her motto; be strong, be fierce, be ME! As time passed positive changes emerged. The importance of love, life and family took hold. No longer sweating the small stuff, living each day and not allowing the “what if” of tomorrow to ruin today became a new way of life.

C4YW, a place where I am not alone

This entry was written by Sarita Jordan, LBBC volunteer:

I was diagnosed with breast cancer in September of 2005. I was 36 years old. Breast cancer was an event in my life that I had no idea was coming. I didn’t have history in my family. I knew nothing about the disease. I was aware of monthly self-breast exams, but that’s about it. When I was first diagnosed, I was told “it probably isn’t breast cancer because of your age.” I am currently a 5-year breast cancer survivor, and counting…

After such an ordeal, it had become apparent that I wanted to dedicate my life to helping other women cope with a breast cancer diagnosis and all the unpleasant episodes that come along with it. When I was in treatment I looked for any and every kind of help because I didn’t really have a strong support system. I developed a relationship with the oncology social worker at my hospital. I later learned about Living Beyond Breast Cancer (LBBC) and the Conference For Young Women Affected by Breast Cancer (C4YW) — finally, a venue where I could express age-appropriate concerns. Because I was 36 at the time, this was great!

As a result of the effort to make it to my first conference in 2007, every year I look forward to this event and the source of help available to me. I will never forget the first conference that was held in Arlington,VA. I am a parent of 4 children, one of which I became pregnant with after breast cancer treatment.

Sarita has been attending C4YW for the last 5 years. The first time she attended, she was pregnant and bald. This is the first time that Sarita has been willing to show a picture of herself when she was bald.

Pregnant, bald and excited, I drove in a snow storm because I was determined to be at this conference. The conference in Jacksonville, Fl., had a workshop about fertility issues that young women affected by breast cancer face. The wonderful speaker described her diagnosis at a young age and how she considered maximizing her chances of future pregnancy, knowing the risk breast cancer treatment had on the ability to conceive. Although my story was slightly different from hers, I was able to offer my experience, which was a sense of hope to some of the other women that were present in this particular workshop.

Attending C4YW keeps me up-to-date with the latest treatments, workplace protocol and rights, medical research, healthcare reform news, etc. I wouldn’t miss it for the world. I look forward to meeting up with friends that I met from other states over the last 5 years since I’ve been attending the conference. More importantly, though, I look forward to volunteering and sharing my story, in the hopes that it would encourage someone else. Last but not least, the group photo! The photo is especially important to me because as we all gather — all races, creeds and colors — I am reminded that I am not alone. 

Although there are some friends that I have lost to this disease, I don’t get discouraged. This too reminds me that life is precious and we have to just live, love and laugh. Tomorrow is not promised to anyone.

Thanks LBBC and YSC for such an event. This experience compares to no other. I look forward to seeing you all in Orlando, Fl. 

Tell us about a liberating decision you made after recovering from your breast cancer diagnosis. Sarita decided to share an intimate photo of herself during a challenging time of her life. If you, like Sarita, are looking for a network of women who share your similar concerns as a young women affected by breast cancer, C4YW may be a good place to start.

No! You’re not cheating on your doctor if you seek a second opinion. Here’s one reason why…

Many of you may remember reading Dr. Evelyn Rodriguez – Robles’ “Am I cheating on my doctor if I get a second opinion?” blog post a couple of days ago. Robles is an Advanced Oncology Practice Nurse and advises all patients to get a second opinion no matter what the diagnosis may or may not be.

According to the New York Times,  ”diagnosing the earliest stage of breast cancer can be surprisingly difficult.” Read the article here and learn why seeking a second medical opinion is a valid decision.

New Mammography Guidelines

On November 16, 2009, The United States Preventive Services Task Force (USPSTF) announced that it is changing its guidelines for mammography and no longer recommends routine screening for women between the ages of 40 and 49 who are at average risk for developing breast cancer. Until a better tool for early detection is found, Living Beyond Breast Cancer (LBBC) maintains its position that current screening recommendations should remain.

Although LBBC acknowledges the limitations of mammography, we stand by the National Cancer Institute’s recommendation that each woman needs to consider the individual benefits and risks and discuss them with her healthcare provider before making a decision about when to start screening mammography and how often to get one.

The proposed new guidelines recommend starting regular screening mammograms at age 50 and continuing every other year instead of every year, as recommended in current guidelines. The new guidelines also recommend against breast self-examination. These new guidelines are based on research that suggests false-positive test results, overdiagnosis, and unnecessary earlier treatment outweigh the benefits of routine screening for women with average risk of developing breast cancer.

It is important to emphasize that the new guidelines are for women considered at “average” risk of developing breast cancer. Women who have had breast cancer and those with a family history or other factors (a positive BRCA gene mutation, for example) are considered to be at a “higher” risk of developing breast cancer and are likely to receive a recommendation for more frequent mammography screening or beginning screening at an earlier age than the average risk woman.

“Although mammography is not a perfect test, yearly screening mammography has been repeatedly shown to reduce mortality from breast cancer in all age groups,” said LBBC Medical Advisory Board member Debra Somers Copit, MD, director of breast imaging at Albert Einstein Medical Center and assistant clinical professor of radiology, Jefferson Medical College.

We know this issue raises concerns, especially for young women. Regardless of your age or history of breast cancer, if you have unusual changes in your breasts, you should consult a healthcare provider and discuss whether or not a mammogram or other testing is necessary.

For more information about mammography and other forms of breast cancer screening, please visit our transcripts page.

What are your thoughts on the new guidelines?

A Volunteer’s Story

 

Update: Below are images from Saturday’s conference–check them out! And if you attended the conference, let us know what you thought by leaving a comment below.

Go here to see more photos from the conference.

 

 

This is a story from one of our volunteers about her experiences at LBBC’s annual fall conference:

When I completed my treatment for breast cancer in August 2002, I knew that I needed to get on with my life. I had worked as much as I could while undergoing surgery, chemotherapy and radiation therapy. I describe myself as a “prickly pear “: I will give anyone the shirt off of my back but I will not ask for help for myself. So I didn’t join a support group at the hospital where I received treatment or any of the many cancer organizations in the Delaware Valley. But I felt that I needed to learn and do more about breast cancer.

I attended the organization’s fall conference in 2004. I had no idea what the experience would be like but I was interested in the range of topics offered at the conference. I was also curious about the women who would attend.

When I arrived at the Convention Center in Philadelphia, I was immediately put at ease. Everyone was welcoming and helpful. I also noticed everyone was wearing a different color lei. I soon learned that the colors represented years of survivorship. At this point in time I was an 18 month survivor and it was encouraging to see women who were 5, 10, 17, and 20 year survivors. It gave me such hope.

I do recall one workshop at the conference. At that time I was taking Tamoxifen and, in addition to the usual side effects, I had no sex drive. I had discussed this problem with my doctors but I needed to hear from other women experiencing the same lack of desire. Luck was with me and one of the scheduled workshops was entitled ‘Sex after Breast Cancer’. Dr. Marisa Weiss, the founder of LBBC, conducted the workshop, which was well attended. I loved the interaction between Dr. Weiss and the audience as women discussed the merits of various brands of vaginal lubricants. Everything was discussed and I felt as though I wasn’t the only one experiencing this problem. Many questions were raised and they were answered with practical information as well as humor. As I love to laugh, I was able to remember many of the helpful hints that Dr. Weiss suggested. My husband really appreciated the fact that I attended this workshop and we put the information to good use.

Being at the fall conference was like being with a group of girlfriends. Although none of us knew each other, we all had the common bond of a breast cancer experience. We didn’t have to explain our feelings or concerns, we’d all been there. We shared our stories, laughed, and had a good time interacting with each other.  I learned a lot from the wonderful people I met that day. I also learned that it’s not a sign of weakness to ask for help and support. Sometimes you just need to talk with someone who’s been in the same place you have.

If you’re interested in attending LBBC’s annual fall conference, News You Can Use: The Future of Breast Cancer Care on Saturday, November 14, visit our website or call (610) 645-4567 to register. Don’t pass up the opportunity to get groundbreaking information and connect with other women affected by breast cancer.

Want to learn more about LBBC?

Many breast cancer organizations deal strictly with medical information and often ignore quality of life issues. Living Beyond Breast Cancer is dedicated to empowering all women affected by breast cancer to live as long as possible with the best quality of life. This includes women that are newly diagnosed, going through treatment or are years beyond treatment. Want to learn more about what we provide? Check out the video below.