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

2012JeanSachsHeadshotVer2WebBy 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.

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

  1. tammycarmona Says:

    At 39, I have stage IV breast cancer. It has spread to my bones, my lungs and the nodes in my chest. I asked about a mammogram a year ago. My doctor said it wasn’t necessary until I turned 40. I can’t help but think the spread would have been less a year ago. Maybe that would given me more time, time to get my 10 yr old out of high school. I think mammograms are important. Once you are stage IV that’s it. Where is the research for the cure? It’s true at stage IV you are left alone battling for another year with your family. It’s devastating and all this ” pink” makes it even worse when your stage IV!

  2. Kate Dennin Says:

    I proudly wear my pink for my daughter and friends who are fighting this disease. People wear pendants and clothing that designate their beliefs in their God or Higher Being. I believe in support the Breast Cancer cause. I believe in supporting those the fight the disease.

    I taught my daughter about self-exam. Not in a fearful way but telling her she needed to know her body. She needed to know about moles and lumps and feeling tired when she was rested. We need to listen to our bodies as part of knowing ourselves.

    My daughter was 29 when she found her lump, more than 10 years before her first screening mammogram. The first doctor she went to told her she was too young. Fortunately, a family friend, a breast surgeon asked if she would let him examine her. We were shocked to learn that not only did she have breast cancer but there were bone mets. We went from nothing to stage 4 in a week. That was 11 years ago. My daughter is now 41.

    By the way, genetic testing showed she did not carry the breast cancer gene and no one else in my family has had breast cancer except a paternal aunt, who was diagnosed at 65 and is now 89.

    Don’t get me wrong, she has pain; she has good days and bad. On her good days, you wouldn’t know there was a thing wrong with her. On her bad days, she still walks the dog. She has hope and she gives inspiration to others who meet her and know her story.

    The numbers quoted in the article don’t seem real to me. Obviously, these folks need to attend a Young Survivor Meeting.

    What can LBBC do? Keep up the good work. The education conferences; your partnership with YSC and welcoming of my daughter and I to your organization has been wonderful, a lifeline in a time when we thought disease of cancer would drown us.

    Thank you for all you do,
    Kate Dennin

  3. Sarah Says:

    What resonated most for me was the part of the article that dealt with people whose experience of illness doesn’t fit the cheerful, passionate, “We’ll fight this together” mood that pervades breast cancer awareness campaigns. When people use language like “beating” cancer and “winning the battle” against cancer, where does that leave people who aren’t going to get well? It’s hard enough being sick without also being made to feel like a failure.

  4. Laura S Says:

    A lot to think about. My DCIS diagnosis opened my eyes to this “breast cancer culture” that I had never really seen before. Until you’re diagnosed – you don’t really pay attention. I’ve wondered about over diagnosing and over-treatment. However, I’m not sure that I would’ve changed a thing for myself. There is still a lot we don’t know. As long as we have the technology—I’ll get the mamm’s and go thru the process. After my lumpectomy, radiation and now tamoxifen, I don’t want to be called a BC survivor. I don’t think it helps the process. This was a bump in the road for me–, I just keep going. Great article and good for Peggy to have the courage to put it out there.

  5. Kathi Says:

    I am convinced my barely-early-stage breast cancer (IIB) was found because a diligent radiologist noticed minute changes from one year’s mammogram to the next. I was 48. There were several tumors, much larger than expected based on the mammogram, and I had cancer in my nodes. If my first mammogram had been at age 50, my oncologist and the other doctors on my team believe the cancer would have been even larger, with more nodes involved and possibly distant metastases. So I’m a supporter of mammograms starting at age 40, whether annual or every 2 years.

    I wear pink ribbons, I volunteer for cancer organizations. Yes, there is lots of awareness, but it’s still surprising to me how much misinformation and ignorance there is. The ribbons are a way to open the door to more conversation and more education.

    Have some of the public campaigns over-simplified things? Yes. Have women with stage 4 disease been largely left out of the conversation? Yes, but I believe that is changing.

    Ultimately, after 2 lumpectomies and 8 rounds of chemo, I had bilateral mastectomies. I was concerned, and my doctors concurred, that “early detection” would be a challenge if my cancer returned and the regimen of tests and scans I would have to undergo for that surveillance was more than I wanted to do.

    What do we need to do? Educate. Inform. Research (and lobby for more research $$) to discover why some cancers metastasize and other don’t. Support.

    Thanks for all you do at LBBC!!

  6. Flossie Friedman Says:

    Research has made genomic testing possible which allowed the doctors to find out that I was at high risk for metastasis from my stage 2 IDC. Before the test results came back they were sure I wouldn’t have to worry about that, but…surprise! I credit research for saving my life. Maybe the cure rate for metastatic breast cancer hasn’t improved much, but perhaps there are fewer cases that make it to that stage? I don’t know, but I credit education and research for me finding my lump and for the doctors knowing how to treat my cancer.

  7. carolann44 Says:

    I enjoyed reading the article & am happy to see that metastatic breast cancer was emphasized, espescially regarding the need for more research dollars & the need to understand how mets occurs.

    However, there are some flaws in the article that concern me. First, telling women they don’t need to do self breast exams is a great, great disservice to them. Where would I be if I hadn’t found my tumor while in the shower?? Probably 6 feet under!! I discovered it only 4 months after a negative mammogram, yet it was already at Stage IV and had spread to 7 locations in my bones….what a shock!!

    It was also 1 1/2 years following a breast biopsy from the exact site where a large lobular tumor was discovered [by me, remember I'm in the shower]. My Oncologist said this tumor had been growing ‘for years’. I’ve been in remission since June 2011 and feel great, but I am ever-cognizant of the ticking time bomb inside me.

    Since mammos are not 100% (not nearly!!) efficient in finding BC, Self Breast Exams are still critical for women to perform at least monthly. We know our bodies (and our breasts) best! We can find a mass in between annual mammograms. SBE’s need to be emphasized, not discouraged.

    Secondly, there was no mention of the strong link between breast cancer and women with dense breast tissue (DBT). About 40-45% of all women have dense breasts (more fibrous, less fatty) and mammograms only predict cancer in 1 out of 2 cases when there DBT. In those 50% of women who were not successfully diagnosed with breast cancer, the dense breast tissue appears white on the mammogram, as does the cancer.

    What makes this an even more serious issue, is the fact that DBT is, on its own, a risk factor for developing BC…i.e., those with DBT are 4-5 times more likely to develop it than their non-DBT peers. More education needs to be done about symptoms, For example, my first symptom was itching at the site of the tumor on the left (Invasive Lobular Carcinoma; I had a very small Ductal Carcinoma on the Right.

    Its like we have taken 2 steps forward and 5 backwards when an article like this appears. I can damage the ‘race’ for the cure. I put that in quotes because its no longer a race, its product endorsement of the worst kind…it makes a profit off our illness… [blood] money for manufacturers and 6-figure salaries for corporate level types at organizations like Komen which puts less each year into research and only 2-3% into metastatic breast cancer research!

    I rest my case!

    Thank you,
    Carol A Miele, RN BS MPH
    http://www.metastaticmadness.com
    Author of ‘Metastatic Madness
    How I Copd with a Stage 4 Cancer Diagnosis

  8. Karen Barrows Says:

    I was diagnosed with Triple negative stage one 5 years ago. Surgery, chemo, radiation…and I still sat in denial of this disease. I was insulted when people bought me anything pink. I didn’t want to be in the Pink club. I was only 46. I was strong, indepedent, active and had never been sick a day in my life. So as people around me, especially my place of employment(female doctors and nurses) pretended there was nothing going on with my diagnosis then I too would pretend. Otherwise, I felt like I wasn’t being strong and being a fighter. One nurse at work went so far as to say just weeks after my diagnosis “that I shouldn’t let this define me” What did that mean? For the next six months of treatment it did define me. My surgery was disfiguring, I lost my hair, I was so so sick, my body completely changed as the chemo slammed me into menopause. The fuzzy brain, the inability to remember even the simplest tasks that I had once performed in repetition all while trying to work in an environment of medical personel that I assumed may help me get through this. When first diagnosed they swore they would put a recliner in an office and let me handle all matters that would allow me to sit such as insurance issues, filling daily rxs, etc. Instead, they asked me to leave because I couldn’t pick up my pace and I wasn’t pulling my weight. And speaking of weight, I gained weight!!! My husband was just plain unkind separated and threatening to cancel my wonderful insurance. My car was repossessed and I had to move into my childrens partially finished basement after the loss of my job. So Pink!!! I hated pink. But here I am years later and what I remember more than just about anything else is all of the amazing women I have met. I remember the girl who answered my first call to Dana Farber to make an appointment. I didn’t even know what questions to ask. “I didn’t know what I didn’t know” ,I guess. She was amazing. Talking to me and letting me know I was going to be ok. Then as we were hanging up she said ” I want you to know I am hugging you through the phone right now”. I have never been so touched in all of my life. From that day forward, all of my experiences at Dana Farber were just that way. I know now that that is what PINK is. Its not a happy spring color or a color that is to “define us” as that unkind woman said to me on that horrible day, but it is a reminder that we are not alone. We don’t have to be. The pink is a reminder of all the people that have found ways to survive before us and lets us know where to find them to gleen valuable day to day survival tips. I.e: Drink a ton of water(more than you can imagine), Take all of the drugs for anxiety and nausea etc that are offered. No time to be tough. Take them, we need them. Avoid people who have no idea what they are talking about and there are so many. They are the ones that tell you not to look on the computer about your diagnosis. Don’t forget knowledge is power, so learn all you can. The fear will come in peaks and valleys. Cry, be alone, don’t be alone, yell, don’t yell. There is not a rule book for this. This one you are writing on your own. There are so many amazing women in the website and truly just in general. They are out there and as for the others we just have to put on our suit of armor every morning to keep their words or lack of words from penetrating. Don’t worry about the whole big picture now. As hard as that is. Actually, seemingly impossible but you will get through this. You will. I hope this helped a little today. All my love to all of you.

  9. Roz Says:

    I really agreed with the article. My tumor was the size of a golf ball, yet it did NOT appear on the latest mammogram! It was found by my feeling a lump in my breast, which seems to be the way many of them are found.

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  12. jimmy lanzetta Says:

    Jimmy Lanzeta to Peggy Orenstein : Thank you for All the Information on Behalf of my cousin and mainly myself, b/c I love her so much.I want tell you the exact text she sent me two weeks ago, Ruthie Bacino French’s Status; “Here we go again… Starting a new round of chemo. Hope itdoesn’t bother me to much. Better yet, hope this oneworks…God willing!!!” My cousin’s only daughter is getting Married, tomorrow, June 22, 2013. As I was saying Thank you and jsach@lbbc.org also Randi Renz for ” What to say and What not to say” when a family member has cancer. And the new kid on the blog Veronica Clothing for people with Breast Cancer.

  13. Lois Says:

    I too found my lump, which did not show up on a screening mammogram. SBE is crucial to save lives!

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