by Joan Lunden
My coauthor waited to break the news about her connection to me until after her breasts were out of the vise. Probably a good idea.
You might think that this is where I’d feel the necessity to issue an apology to everyone involved in radiology, but I will not.
Nope.
I refuse to apologize for informing and empowering women to better understand their breast health and advocate for their care.
On the contrary, I feel like I must boldly step forward and question the special task force convened in 1984 to study whether to continue recommending that mammograms begin at forty. The U.S. Preventive Services Task Force has issued mammogram guidelines recommending that women begin mammogram screening at age fifty and repeat the test every two years. This is heatedly debated in the medical community. The American Cancer Society and most other major cancer organizations still recommend that screening begin at forty and that mammograms continue annually. The task force was formed after a small Canadian study brought into question whether starting mammograms at forty might cause too many false positives (and unnecessary biopsies) and that not enough lives were saved to justify the testing.
Really?
How many lives would need to be saved for this panel to say they’re worth it? I don’t know about you, but I’d rather have a false positive any day, rather than a false negative, the way I did with my mammogram.
Call me crazy.
I’d like to hear from the thousands of women around the county in their forties who are alive today because they got a mammogram and, as a result, got treated and lived to tell about it. Are they just not worth it to the task force?
Maybe we need one of those women on the task force.
The doctors at the Miami Breast Cancer Conference were all polled on this issue. I stood at the back of the gigantic ballroom where I would be speaking to them later. I watched as each of them voted on this question, and it was close to unanimous to leave the standard age at forty and the testing on an annual basis, although it should be individualized with each woman and her risk factors.
Several doctors got up and expressed concern that the insurance industry might be able to argue that the underlying expenses would support the delay of screening until age fifty, and how terrible that would be for women everywhere.
It’s time to wake up!
We need early screening and, when necessary, ancillary screenings to be made available to every woman and covered by insurance.
Just consider the facts: We are seeing more and more women in their twenties, thirties, and certainly forties being diagnosed with breast cancer, and researchers are frantically trying to figure out why.
Doesn’t this clearly show that early screening is more critical than ever?
As much as this cancer has tried to beat me down, somehow it has also grown me a big ol’ set of balls. I’ll be careful not to wear my skirts too short when I go to Washington to advocate, so they won’t show. But as long as I grew them, I might as well use them.
There’s no question that we’ve made great strides in our fight against breast cancer, but my experience, combined with those of so many other women diagnosed with the disease, shows that we still have a lot of work to do. Many people have worked tirelessly to raise awareness, to spread the word that breast cancer is a threat to women everywhere, and to suggest that funds are needed for more research. As a result, we have achieved great awareness around the country about breast cancer.
When the NFL is wearing pink during October, I think we’ve got plenty of awareness.
What I believe we need more of now is education.
Thankfully, millions of women are now receiving routine mammograms, but going forward, I hope that we shift the focus to better tailor health care screenings to fit each woman’s individual needs. Breast cancer care cannot be one-size-fits-all.
It is a very heterogeneous disease. It is a cancer that I believe requires great personalization. What’s right for one woman isn’t necessarily right for another, and approaching it as a one-size-fits-all issue undermines the true abilities that we have to combat breast cancer.
I hope there will be a day when we can get gynecologists and other referring doctors to discuss the issue of breast density with their female patients. Women have been kept in the dark on this issue far too long.
Had I known that my radiologist had been giving lifesaving information to my gynecologist for decades that wasn’t being passed on to me, I would have been able to have an intelligent conversation about my risk factors. Instead, I stuck my head in the sand, thinking and believing that because I didn’t have a family history of breast cancer, I was somehow immune.
Had I known that dense breast tissue increases your risk of cancer, maybe I would have been more vigilant in my care. I hope that as we go forward, we’ll focus research not only on treatment but on prevention and which lifestyle factors and habits might alter breast cancer risk and recurrence—exercise, weight, diet, and stress.
Had I known how bad sugar is for you—that it is like jet fuel for the growth of cancer cells—hello, I would have cut it out of my diet a long time ago. It’s sugar’s relationship to higher insulin levels and related growth factors that may influence cancer cell growth the most.
And I don’t even have a sweet tooth! In fact, I couldn’t care less about desserts. But had I known just how dangerous it was, I never would have succumbed to a warm chocolate chip cookie or a hot fudge sundae on that cross-country flight, which was where I usually indulged, because I am not a dessert eater. Admittedly, it’s hard to say no when they bake those cookies in the galley and the entire cabin fills with the sweet smell of freshly baked chocolate chip cookies. There’s something comforting about it that teases the brain into saying yes when you ought to say no.
Willpower be damned!
Sometimes when the flight attendant came by with that silver tray, I closed my eyes tight, stuck my fingers in my ears, and sang “la-la-la-la-la” until she got the idea and tempted the next passenger with her dessert.
Had I known my life was actually in danger, it would have been so easy just to say no.
And now that I know, I cannot unlearn all of this.
But I can and will pass it along.
Going forward, I will share with others what I’ve learned about the signals that foods can send to your cells, how some foods put you at risk and others actually protect you.
I hope that as we go forward, doctors won’t recommend the same treatment to every woman, just because that’s the way it’s always been done, if there is something new and more promising that better fits her particular needs. This is a field where research discoveries change detection, treatment, and survival rates week to week, month to month.
I think I’m a good example that trying a new regimen brought a good outcome.
I hope that as we go forward, we focus on treating the whole woman and not just the cancer.
I hope that doctors consider the long-term side effects that can result from the cancer treatment itself. It’s easy for doctors and patients to focus on the more immediate and obvious side effects—like hair loss from chemo—and those unfortunately can and often do trump discussion about the long-term side effects that may occur after chemotherapy.
Finally, I hope that as we go forward, we can focus on the doctor-patient relationship. I am aware that I had the very best medical care available. I had it so good. However, in going public with my cancer journey and connecting with thousands of women who have shared their stories, I am also aware that not everyone has had the same quality care.
I was extremely fortunate to have incredibly wonderful relationships with my doctors. Each one helped me to understand my disease and all of the treatment options available to me.
I am making a promise here and now.
I will look for every opportunity to put myself in front of medical professionals and impress upon them the importance of their relationship with you and what you need from them:
; 1.To always share pertinent lifesaving information;
2.To probe and help you ascertain what your real risk factors for cancer may be;
3.To see that you get any and all ancillary tests that may be required, considering your health circumstances;
4.To explain all of the potential treatment paths available and why certain ones may better fit your needs;
5.To communicate with all other doctors treating you so that you get the best care; and
6.To remember that other, very important prescription: a caring and comforting smile and a word of encouragement that together we can beat this, and that you must stay positive and believe you can beat this, and that you may or may not have some lousy days, but in the end, you will survive!
My busy and hectic lifestyle required me to work with three different oncologists, and they all worked together for my benefit. That has shown me that once you are diagnosed with breast cancer, your chances for getting the best possible care are highest if all your health care professionals are involved in your diagnosis and treatment and work together. My doctors all helped me believe that I could win my battle, and I think this is so important to the success of your treatment. But you can never forget that you have to be your own advocate. You are in control of your health and, ultimately, your journey.
I didn’t ask to get breast cancer. But I feel as though I have become a voice for women going through the battle. While I am not a medical doctor, I sure do feel like I’ve had a crash course in breast cancer! To be certain, I have the attention of many women going through this, and I am thankful that I can help to educate and inform them along their journey.
Had I known before my cancer diagnosis that there were so many roadblocks, frustrations, and discouragements in the battle against breast cancer I would have stepped up to the plate much sooner than I did. Had I known how great this need was, I would have—and feel I should have—tended to it sooner, to effect change and to become a voice for those who are in a predicament that requires someone to protect them, as I can now. Of course, it took getting breast cancer to fully understand the plight we all face: the bureaucratic red tape, the confusion, and the plethora of medical options left in our hands to decide on.
But when I did understand this, I knew I wanted to become a facilitator of information—to bridge the gap between the scary unknown and the necessary information every breast cancer patient wants and needs at every stage of her journey. The answer came to me in the form of an online television channel called ALIVE with Joan, which serves as a platform for cancer patients, survivors, their circles of care, and anyone looking to protect themselves from chronic disease. Information empowers and community inspires. I know from my own journey there is great value in both.
ALIVE with Joan was launched one year to the week after my breast cancer diagnosis and serves as a reminder every day that although it wasn’t easy, I survived. And through ALIVE with Joan I want to encourage others to know they can survive too—and that others in the breast cancer community will be right there with them every step of the way.
I’d like to think that if my dad’s up there, he’s looking down at me, smiling, and saying, “You pick up the ball, baby doll, and run it into the end zone!”
I will, Dad.
I will.
Photo Section
My dad, a young doctor at his desk in the 1950s.
We were a flying family, as seen here in our Christmas card from when I was a little girl.
My mom was always big on “expanding our horizons” and we took many trips as a family.
Me with my dad and his nurses in 1955.
My first day as host of Good Morning America. The press all wanted to meet Baby Jamie so she was brought to me on the set.
My early days at Good Morning America with cohost David Hartman.
Sammy Davis Jr. has a cuddle with baby Jamie while on the set of Good Morning America.
My three older girls often joined me on set. L to R: Sarah, Jamie, and Lindsay.
A special moment with my dear friend Charlie Gibson on the set of Good Morning America.
Lifelong friends. It’s always good when I can get back together with my pal Charlie Gibson.
My rock. My husband, Jeff, and I on our wedding day.
Jeff and I with our first set of twins, Max and Kate, in Florida.
Jeff and I holding our newborns Kim and Jack, a second set of twins!
Right after receiving my cancer diagnosis I hosted a joint birthday party for my younger twins and a family baby shower for my daughter Lindsay. No one at the party knew yet about my breast cancer.
Kate and Max graduate elementary school (I was secretly in the midst of a flurry of oncologist appointments).
The whole family. L to R, front row: Kate, Jack, Kim. Middle row: Lindsay, Sarah, Max, Jamie. Back row: Joan, Jeff.
A family pile-on at our house!
Making my breast cancer diagnosis public with Robin Roberts on the set of Good Morning America on June 24, 2014.
“I know I just have a little stubble and it’s going to fall out anyway, but can’t it be platinum?!” Emir Pehilj, my hair/ makeup artist and close friend was like an angel to me throughout this past year.
My “G.I. Joan” moment as I get my head shaved.
My nurse Jenny starting my chemo infusion.
Oh c’mon, it couldn’t have hurt THAT bad!
Last day of chemo treatment.
Lasers lining up for radiation.
Hoda and I sharing a moment before sitting down to discuss my diagnosis for the Today show.
On set for our special #pinkpower series on Today.
My whole family surprised me on set for the last day of #pinkpower to show their support.
“Here’s the story . . . of a hairless lady . . . “
My workout buddies at Camp Takajo and my fitness trainer, Beth Bielat, who kept me going every day.
In my wig and dressed in pink at my Camp Reveille.
Camp Reveille opening-night campfire offers inspiration and camaraderie.
With my older daughters at Lindsay’s baby shower, which I threw in the middle of one of the toughest parts of my chemo treatment.
My baby, Lindsay, holding her baby daughter, Parker, after giving birth to her as I was finishing chemotherapy.
A private moment without my wig at a recent photo shoot with good friend and esteemed photographer Andrew Eccles.
Leading the Breakaway from Cancer “Survivor Mile” with fellow advocate Patrick Dempsey.
Out on the trail, speaking at one of many cancer events this past year.
A uniquely special moment as my husband, Jeff, presents me with the Spirit of Life Award for the City of Hope.
With Nancy Brinker, founder of Susan G. Komen, about to receive the Komen Impact Award, presented to me by fellow survivor Amy Robach.
Mistress of Ceremonies at the Honoring the Promise Gala at the Kennedy Center in Washington, DC, the night before going to Capitol Hill for the first time as an advocate for women’s health.
My dad in the light suit, unveiling a “Fight Cancer” billboard for the American Cancer Society in 1960.
Leading a sea of pink at a cancer event in my own mission to fight cancer. At every event I go to, I feel like my dad is right there by my side.
Acknowledgments
I’d like to thank some very special people in my life who helped me through this past year and who made this book about my breast cancer journey possible.
I share my life journey with a most amazing life partner. I could not ask for a better copilot than my husband, Jeff Konigsberg. Thank you, Jeff, for your never-ending love and support and also for putting up with all of the hours that my eyes were glued to my computer screen as I wrote this book.
My three older daughters, Jamie, Lindsay, and Sarah have always been the lights of my life and they were there with me every step of the way throughout this journey. I am so proud of each of you. You have no idea how important it has been to h
ave the three of you to turn to day after day. And to my younger children, Kate, Max, Kim, and Jack: thanks for helping to keep Mommy strong and for telling me how cool I looked every time I took my wig off. Jeff and my children all surrounded me with their love and strength and I am so thankful to them.
Family members are often your pillars of support and your best cheerleaders and I thank Jeff’s parents, Janey and Donnie, and his brother and sisters: Kip, Leslie, and Karen, and his extended family. I didn’t come from a big family and you have all shown me how important unconditional familial love can be.
Friends are the family you choose. I’d like to thank close friends Elise Silvestri and Jill Seigerman who are like family to me—they’ve been remarkable listeners and have given me sound advice over the years. Every woman needs close girlfriends to vent to, to get a manicure with, to plan baby showers with, and in this case to pick out wigs with. I thank them for being there on the stormy days as well as for the exciting times. I thank them for their loyalty and friendship. And speaking of friends, I always know I can count on Michelle Dillingham—I’d say she’s one of my oldest friends, but neither of us likes the word old. We will always be best friends, because we know way too much about each other.
I’d also like to thank Tara Girouard and Torie Sutterfield, two of the most loving people, whom I depend on each and every day to keep our family ticking and our children happy. Two sets of twins go four separate ways and it takes a village, and as a working and traveling mom, and this year a mom in cancer treatment, I couldn’t be more thankful to have them living in my village.