Sep 4, 2007 1:37 am US/Eastern
Laurie Stein's Survivor Blog
by Laurie Stein
April, 2008
On February 26th, my husband and I attended the Wellness Community's annual "Heart and Stars" dinner at the Four Seasons in Miami. I had been at the event back in 2005 when I was the keynote speaker, but this time we were invited as guests by a new friend of mine.
I met her and her beautiful daughter at the Race For The Cure last year. As I was speaking to the crowd from the stage, I noticed a young girl by the tent where volunteers were handing out teddy bears to the children of breast cancer survivors. Even from a distance, she reminded me of my own daughter. Beautiful brown hair, friendly and intelligent eyes, gorgeous smile...and a mom in a baseball cap with short hair beneath. A young girl who was watching her mom struggle with a breast cancer diagnosis, just like my daughter had done three years earlier.
When I noticed that the bear supply had been depleted, I ran down from the stage and offered one of my own daughter's extra bears to her. Her mom and I talked for a few minutes and discovered we shared many things in common including the BRCA breast and ovarian cancer gene. We quickly learned that we both wanted to educate as many women as possible about the BRCA cancer gene; we both felt that there are just too many women who are unaware of the testing. She is now moving forward with an ambitious plan to educate the community. I will keep you posted on her progress. And her young daughter is even raising money on her own!
On another note, the Heart and Stars dinner was a huge success. (One fellow attendee referred to it as the "Heart and Scars" event. As a mastectomy patient, I thought that was awfully funny-even after reconstruction, implants and all sorts of other procedures... the scars might fade but every patient knows exactly where they are). This year's dinner was dedicated to Dr. Robert Derhagopian. I am thinking he might have a body double, because I just can't understand how he is physically able to treat so many women in our community. Whenever I meet a woman in Miami who has had surgery for breast cancer, there is something like a 90% chance "Dr. D" has done the work.
He never treated me, but when I interviewed him for a story almost 5 years ago, he was patient, intelligent and so incredibly kind! He not only took the time to explain very complicated material about the latest breast cancer research but when he found out my father was also a doctor and a fellow Bostonian he picked up the phone to call my father and introduce himself. They talked about my dad's hometown of Chelsea, practicing medicine, and my breast cancer stories on CBS4. I was so impressed with "Dr. D" and my dad was awfully proud of me that day. Less than a year later, my dad was diagnosed with pancreatic cancer and died within two months. I am still grateful to Dr. Derhagopian for that phone call; it's a nice little memory that I never got a chance to thank him for. At the Wellness Community's event though, the room was packed with people who thanked him for all he has given to South Florida.
March, 2008
Since this is an e-mail newsletter, I thought it would be interesting to point to a recent study that I learned about on breastcancer.org. The study attributed to "Cancer March 2008" found 18 of 343 websites that focused on breast cancer had inaccurate information. That's only 5%, which is a pretty low percentage. But when it comes to web sites that focus on complementary and alternative medicine, the percentage of web sites that have inaccurate information jumps to about 33%.
The sites they looked at ranged from those hosted by government agencies to those run by universities and non-profits.
And here's why you need to be especially careful when searching for information online-the researchers found that it didn't really matter if the web sites listed sources or gave proper credentials...those factors were not good predictors of whether or not the information was true and valid. The researchers also found that information was often a bit piecemeal and scattered; web site viewers often get limited answers to very complicated questions and don't get "the whole story" on many of the issues.
Of course, these results come as no surprise to many cancer survivors. While I am impressed with the information you can get online, I realize that I am often faced with short paragraphs and simple explanations that leave out many important factors to consider. However, I can't imagine what my diagnosis and treatment would have been like without the Internet! I remember the weekend after my doctor told me I had a malignant tumor in my breast. My husband and I were online nonstop...looking for the best treatment centers, fertility preservation specialists and breast cancer gene experts. In fact, I found some excellent doctors at the best hospitals online. And very rarely did I stumble across inaccurate or misleading information. I was careful to avoid web sites that looked too "homey" or "new-agey" but the Internet helped me research studies that my doctors didn't even know about. In fact, on one cancer web site my sister found one study done in Norway that looked at women who had the same gene mutation, similar tumor size and age as I. It was a small study but it had very crucial information that directly related to my situation. Even my doctors had not heard of this information, but we contacted the lead physician who conducted the research and eventually I based my decisions on the information that we uncovered through that web site. It influenced my surgical choices and treatment options. The Internet also provided a community through web sites like www.facingourrisk.org and www.youngsurvival.org.
If you want to check out the Internet study that evaluated the 343 web sites, here's the link- http://www.breastcancer.org/opinion/20080211.jsp.
Take care!
Laurie
February, 2008
First, I want to begin by letting you know that my friend's scare last month turned out to be nothing more than that...a scare. After weeks of testing her doctors determined that she had a benign lump. And I can't even begin to explain the relief I feel.
When I sat down to write this month's blog, I wearily told our editor Katy Meagher that I just had not come up with a focus yet. Should I write about new treatments? Emotional issues? Reconstruction? Just as I was contemplating all the things I didn't really feel like writing about, Katy suggested that since one of February's highlights is Valentine's Day...filled with cards, flowers and gifts...it would also a good time to think about how we show our love and caring on a daily basis. "Where's the manual for how to act when a loved one or friend has cancer?" she asked. "What can friends do to help out or show support?" she wanted to know.
When I was diagnosed with breast cancer, some people surprised me with their incredible outpouring of help and sympathy. I remember friends and family who traveled across the country to visit me and my husband. Some even helped care for our baby girl. I remember friends encouraging me to get out of bed and head to the mall or a juice bar; even in my bald and tired state I trusted that they knew how to cheer me up. One acquaintance left some amazing homemade Italian meals on our doorstep, so my poor husband felt cared for (and didn't starve!). But I must admit that there were other friends who disappeared...either emotionally or physically. Friends who didn't call, who didn't check on my husband, who didn't even send a card to say they were thinking of us during that horrible time.
Almost five years later, I sort of understand. And I must also admit that I have been somewhat negligent when it comes to showing others how much I care. No one wants to deal with this "hard stuff" in life. It is much easier to avoid the thought of a sick friend and go on with our daily lives. My sister and I used to have a joke that people worried about you for a few minutes, then went on to their own troubles and turmoil, like their car that needed to be fixed or problems with remodeling their kitchen. Even when my own breast cancer got too tough to talk about, we'd joke "OK, time to think about the kitchen remodel now!" even though neither of us was actually doing any work to either of our kitchens.
So, thank you Katy for reminding me that Valentine's day is a terrific time to show you care. I am going to reach out to others this month. And if you need a manual, here it is. If someone you know has breast cancer, offer to drive her to chemotherapy and sit with her while she waits for the dosing to finish. (Don't forget to bring a book, magazines and even some DVDs for the hospital DVD player!) Send her a magazine subscription. Offer to take her kids to school. Make dinner for her husband. Or just stop by her house and tell her that you are here for her.
December, 2007
When I was emceeing the Susan G. Komen Race For The Cure last month, I looked out from the stage and saw so many women from the Junior League of South Florida participating in the event. As a breast cancer survivor, I sincerely thank you for your support. I know it wasn't so easy getting there at 8am on a rainy Saturday...but you did it! And if you were one of the women who attended, I think you understand what I mean when I say it was such a moving and meaningful event this year. As I was speaking to approximately 15,000 people from the stage, I was floored by how emotional the reaction was from the crowd. We had children speaking about their mom's diagnosis, survivors who have lived decades with breast cancer, and we also heard about those women who have died from this horrible disease.
Didn't it seem like the pink ribbon was everywhere last month? From the department stores that featured "pink boutiques" to the supermarkets that stocked pink ribbon paper towels, cereal and yogurt, we were constantly made aware of the need for increased research funding to help find a cure. Now that it's November, there won't be as many pink items featured in the stores and there won't be so many events devoted specifically to breast cancer. But of course, this is an issue that unfortunately we have to think about year-round.
I probably don't need to remind you to get mammograms; because I would bet that you know that already. But I will reiterate that if you feel a lump, get it checked out immediately. Breast cancer will strike one in eight women. If it doesn't strike you, chances are that it will hit one of your friends. In fact, I have seven friends who have breast cancer. They are all young women with children under the age of 8.
We lead such busy lives with our families, volunteer work and careers, and we often forget to take care of our own health. But when medical professionals discuss "early detection", they are speaking to busy women just like you. If you are suspicious about something you discover, speak to your doctor as soon as possible. The kids' soccer games, school projects and homework can be put on the back burner for a few hours while you focus on making and keeping a very important doctor's appointment to ensure you will be alive for many years to come.
If you are in a high-risk group for the breast cancer gene mutation (any relative, even on your dad's side, who got breast cancer before age 50, any relative who has had both breast and ovarian cancer, any relative with male breast cancer, etc.), then get the BRCA blood test. The information can save your life. For more information go to www.facingourrisk.org. And if you haven't seen some of my CBS4 television news stories from October, please find them online at www.cbs4.com/news4thecure and take a look. While you're there, why not sign up for the newsletter that will remind you to do your monthly exams and help educate you about the latest research and information. CBS4 has devoted itself to keeping this issue on the minds of our viewers and helping the Race for The Cure be even bigger and better next year. I look forward to seeing you again!
November, 2007
Wow. The Race For The Cure last month really can't be put into words...it was that special.
If you were there, I think you understand.
It was not only a huge event but one of the most meaningful experiences of my life. As one of the survivors in pink on the stage, I felt the camaraderie of so many women who have suffered the same ordeal. And when I looked out from the stage and saw so many people...thousands of people..caring about this issue, I was in a word-floored.
CBS4 had an incredible presence this year; I am not saying that because I work there. I am saying that because I know the people involved and they were there because they wanted to lend their support. This was an emotional experience for CBS4 and I know many of my coworkers had tears in their eyes that day. The following day, our reporter who covered the event told me that she wants to be there every year and she wants to do as many possible stories about breast cancer as she can.
CBS4 also had an incredible amount of stories devoted to breast cancer in October. In fact, every day the issue was covered in a significant way. I have never seen that kind of commitment from any television station, ever. I am just so proud to be a part of the team...and if you know me, I don't make statements like that in a superficial way. I mean it. From Katy Meagher singing the national anthem to my news director Adrienne Roark walking and holding the CBS4 banner with her adorable son to all the reporters and anchors like Shannon Hori and Elliott Rodriguez who gave up their day to be a part of something so important. And if you were there, you heard Dr. Sean on stage who now has a second (or I should say, third) career as an event announcer. He is a PRO!
So now that it's November, there won't be as many pink items in the stores and there won't be so many events devoted specifically to breast cancer. But of course, this is an issue that unfortunately we have to think about year-round. I don't need to remind you to get mammograms; I would bet that you know that already. But I will reiterate that if you feel a lump, get it checked out ASAP. And I will mention again that if you are in a high-risk group for the breast cancer gene mutation (any relative, even on your dad's side, who got breast cancer before age 50, any relative who has had both breast and ovarian cancer, any relative with male breast cancer, etc.) then get the BRCA blood test. The information can save your life. For more information go to www.facingourrisk.org and if you haven't seen some of my stories from October, please find them online and take a look.
Let's not forget all those survivors on the stage October 20th...if you know someone going through this, reach out to see if they need any assistance or support.
October, 2007
As a journalist, I am very supportive of open expression and of course, everyone is entitled to his or her opinion. However, an article I read in the New York Times is really testing my patience. < a href="http://www.nytimes.com/2007/09/11/business/media/11genetics.html?ref=health">Here's the link.
It is about new advertising for the breast and ovarian gene cancer test. A TV commercial is starting to run this week in New York and other areas in the Northeast and it encourages women to consider getting the BRCA breast and ovarian gene mutation blood test. There will also be an insert in a national magazine. As I have reported numerous times, if you have the mutation then you have up to an 80 percent chance of getting breast cancer and up to a 60 percent chance of getting ovarian cancer. We are talking about a simple blood test that your primary care doctor or OB/GYN can administer. It is estimated that approximately 1 in 500 people carries the gene mutation. In the Eastern European Jewish population, it is closer to 1 in 40.
Knowledge is power; if you know you have the cancer gene then you can make dramatic changes that can save your life. We women are mothers, wives and friends and we owe it to ourselves and to those who love (and need) us to make strong, well-informed decisions! These blood tests can give us such valuable information and so many people don't even know the test is available.
In the article, the reporter writes that the commercial, "is stirring protests from some cancer and genetics specialists, and it has brought on an inquiry by Connecticut's attorney general. Critics say that advertising such a complex screening test to the general population might create unnecessary anxiety among women and lead to overuse of the test". It goes on to quote cancer specialists who say that the test preys upon the fear of women.
Well, guess what? Women are really scared of getting breast cancer! Do you know someone who has been diagnosed with breast cancer? I do...not only was I diagnosed at 34 years old but I happen to have 8 friends who have also been diagnosed with breast cancer in the last three years. They are young, intelligent, strong women who are now wondering if they will be alive to raise their families and enjoy their lives. They could be your friend...your wife...or a woman just like you.
When HIV tests are advertised, does anyone ask whether the information will "cause anxiety"? Perhaps because breast cancer primarily affects women, there is a paternalistic attitude that assumes we can't deal with potentially anxious, difficult issues? And I would not worry about "overuse of the test"; I bet women and their doctors can make some pretty intelligent choices when it comes to getting a blood test. We make wise choices every day!
As October draws near, lets remind ourselves that we need to be strong in the fight against breast cancer.
SEPT EMBER 2007
I will never forget the day my life changed. June 13th, 2003. I was in a CBS4 truck at the Miami police station getting ready for a live-shot that was going to air at 5pm. At 4:55pm I was thinking about the last shots that would be edited into the story. I was thinking about the young witness I had interviewed earlier in the day. I was thinking about getting ready to go in front of the camera and tell South Florida about the latest developments in a crime story we had been following very closely.
I was not thinking about the biopsy that I had just days earlier.
When my cell phone rang, I answered the call in a hurry. My first thought was, 'I hope this is really quick because I have to jump out of the truck in 5 seconds to make my live shot!'
My priorities shifted in an instant.
During the phone call, my doctor told me I had aggressive breast cancer. The tumor appeared to be almost two inches and the cells were high-grade and fast-growing. I was just 34 years old: How could this be happening to me?
I immediately switched from shock to research mode. As a journalist, I have always believed that knowledge is power. I had used that mantra to delve into my work. Now it was time to use my investigative skills to find the best breast surgeon, cosmetic surgeon, medical oncologist, radiation oncologist and treatment center. Within days I was on a plane with my husband headed to Sloan-Kettering Hospital in New York. I had a double mastectomy, immediate reconstruction, powerful dose-dense chemotherapy every two weeks for four months and radiation to my entire chest wall.
Mastectomy. Chemo. Radiation. Such simple words that are packed with such powerful punches. Every minute of those treatments was tedious, exhausting and difficult. I know that people often say having cancer made them stronger or allowed them to appreciate so many of the good things in life. But I will tell you one thing: cancer is a horrible experience.
It is a depressing diagnosis to receive. It is a constant struggle to endure. And it is a heartbreaking experience for loved ones to watch.
Four years later...I am still here. Of course, that is a wonderful accomplishment. I appear to be cancer-free. Although every survivor knows that we live from appointment to appointment, happy to have no sign of malignant cells but always conscientious of the fact that if the cancer suddenly reappears it is often with a terrible vengeance.
I have a terrific family and fabulous friends who have helped me through very dark days. And in many ways, CBS4 has been part of that support circle. CBS4 has allowed me to share my story with viewers and CBS4 continues to be devoted to educating the community about this disease. I look forward to continuing this blog and I welcome your feedback.
BLOG TWO
October is still many weeks away but you'd be surprised how much is already in the works for "Breast Cancer Awareness Month". I am going to be involved in at least six different events and one that looks like it will be especially exciting is called "Passionately Pink For The Cure."
I recently met with a woman named Camille Thiry Russler who owns a very glamorous bridal couture shop in Miami. Camille explained that her sister-in-law had been diagnosed with breast cancer last year and within two months Camille was able to whip-up a charity auction and fashion show to benefit the Susan G. Komen breast cancer fund.
This year she has had even more time to plan and it looks like it will be an amazing event. It will be held at the DuPont building in downtown Miami on October 3. I haven't been there before but I've seen pictures and it looks like a dramatic backdrop for a very hip party. Camille is also planning a "lounge" area where guests can learn about the latest advances and information in a very laid-back comfortable setting. What a great idea! She's also looking for six breast cancer survivors to share their stories and wear some beautiful custom dresses designed by Renato.
I also met Renato in the shop the other day and he is so enthusiastic about using his talents to help such an important cause. Camille is going to have a terrific silent auction, she's soliciting high-end sponsors and the neatest part is that tickets are pretty reasonable at $50 a piece.
I know I have been to many charity events that are priced much higher, so this sounds like a really great way for people to have a fun night and help out. In any case, there are going to be many, many great events in October and I think the most important point is that just thinking about breast cancer gets people motivated to do a self-check and see a doctor if there's a lump. That's how I discovered my cancer; knowledge is power!
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