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Why Didn’t Joan Lunden’s Breast Cancer Show Up on Her Mammogram?

Photo: Courtesy of Daphne Youree

If it wasn’t for one on-air interview, journalist and on-air host, Joan Lunden, says she may never have learned about her breast cancer diagnosis. Now, she’s dedicated to encouraging other women like her to be proactive about breast cancer screenings. In an exclusive interview, Lunden tells Mediaplanet the story of her diagnosis, her journey, and the lessons learned.

When were you diagnosed and at what age?

June 5, 2014

What stage were you diagnosed with?

I was diagnosed with stage 2 TNBC, an aggressive form of breast cancer for which there was no targeted treatment available at that time.

How was the cancer initially detected?

My breast cancer was found in an ultrasound after a clean 3-D mammogram. And it was by luck that I had the ultrasound that day. A few years earlier I had done an interview with cancer expert Dr. Susan Love about mammograms, for a health show I was hosting.

I shared with her that my mammograms were nerve-wracking because I was always called in for more pictures. I’d ask, “Did you see something bad?” They’d always say, “No, we just can’t see anything, because your breast tissue is so dense.”

With that, Dr. Love said I should be adding an ultrasound to my yearly screenings. She explained the difficulty in seeing tumors in women with significantly dense breast tissue. She said that since tumors show up as white on a mammogram and so does dense tissue; that it was like looking for a snowball in a snowstorm.

Thank God I got sent on that interview and thank God I listened to her, and added an ultrasound to my yearly screenings. I could’ve easily walked out the door after the mammo thinking everything was fine, when I really had an aggressive fast-growing tumor in my right breast.

Had it not been for that interview, I wouldn’t have known to ask for an ultrasound. I’m thankful my breast cancer was found at an early enough stage that I was able to be treated and have a good prognosis. I shudder to think where my story might have been 18 to 24 months later if I hadn’t had that ancillary test that day.

How did you feel when you first received the news?

I was shocked. I didn’t think it would happen to me. I’d done countless interviews with breast cancer experts and had reported on the statistics: “a woman has a one in eight chance of being diagnosed with breast cancer during her lifetime.” I just never thought I’d be that one in eight, because I didn’t have breast cancer in my family history, so I mistakenly walked through life feeling immune. I wasn’t, of course. But I was struck that even a journalist, who interviews the experts, could be so wrong about something so important.

By going public and engaging with women all over the country, I found I wasn’t alone in that thinking, that myth, that you’re not at risk if you have no family history, it’s shared by a lot of women and that can prove to be very dangerous , because it can make us feel nonchalant about the life choices we make; what we eat, whether we take HRT and the need to do self-exams or get annual screenings.

Had I known that less than 15 percent of women diagnosed with breast cancer ever had any family history, I wouldn’t have felt so immune. I wouldn’t have been so nonchalant about needing to do self-exams or getting screened.

Is there a family history of breast cancer?

None that I know of. However, my extended family did not live nearby, and I didn’t know enough about the disease to do outreach and ask questions.

Did you have a support network? If not, how did you overcome it or find it?

My husband and my three older daughters, all in their 30s, were by my side throughout all of my treatments.

Tell me about your treatment process.

All of my doctors and nurses throughout my cancer treatment were nothing short of extraordinary. I had sixteen rounds of aggressive chemotherapy, six weeks of radiation and surgery. While I was also given Neulasta to protect me from infections, I still ended up having two blood transfusions when my blood count went extremely low.

Were there any programs or services offered to you that would help with the treatment process?

Not in my case.

Did you face any obstacles during your treatment process? If so, how did you overcome these obstacles?

Only losing my hair, eyebrows, and eyelashes.

What did you do to help you meet the challenges of your treatments?

I went public and shared my journey with other women. I think it’s so important that we share our stories so that others learn and so that we can motivate each other to be more vigilant about our healthcare.

Women are so good at taking care of everyone else in their lives, but we need to be reminded now and then to tend to our own health and better manage our healthcare.

As I’ve travelled the country as an advocate, women tell me that they’re often confused and frustrated because they hear so much conflicting advice. I found that women didn’t realize they could get a mammogram and walk out thinking they were fine, when they actually had breast cancer that simply couldn’t be seen. That’s why I felt compelled to share my story and make sure that other women understood about dense breast tissue and why they made need an ancillary test beyond the mammogram. That’s why I felt compelled to go to Washington and advocate in Congress for Mandatory Mammogram Reporting. I also testified before a Committee Hearing of the FDA that was trying to determine whether to change their federal regulations for Mandatory Mammogram Reporting. After five years, we finally saw that legislation pass, and those regulations change so that every woman in the country would be told whether she had dense tissue and if she needed further testing. Once I made the decision to go public, it changed my battle completely, and in the most positive way. I became an advocate, I became a warrior, I focused on helping spread important information instead of feeling sorry for myself.

What did others close to you do for you that made a difference?

They were there by my side, even if I told them they didn’t need to.

How did you overcome your fears of treatments? Of side effects? Of the possibility of death?

Having cancer changed how I felt about life in general. You go into a cancer battle one person, and you come out a different person — a person who appreciates every day, every sunrise, and every person in your life. You don’t take life for granted anymore. I also became much more vigilant about my health, including my diet, my exercise, my sleep, and my stress management.

Now that you are a survivor, what would you do differently when going through your diagnoses and treatments?

I had never had a friend or colleague who’d gone through a cancer battle, so I knew nothing, and was very nonchalant. I would advise another person facing a cancer battle not to try to do it alone. I know how we “power women” think we can do it all by ourselves, but this is not the time to push people away. Allow those who love you to love and support you.

Now that you are a survivor, how are you living your life differently and why?

I’m much more aware of how my life choices might affect my health. My cancer battle made me a student in health and longevity management. That was a silver lining. I’m also acutely aware of how family and friends came to my aid and gave me needed support, so that I now am more grateful for those people in my life. That, too, was a silver lining.

What three things would you tell a person who just yesterday learned of their cancer diagnosis?

It seems overwhelming when you are first diagnosed, however we live in an amazing time when there are more and better treatments coming available. Take someone with you to those important first sessions with doctors to ask lots of questions and take lots of notes. You’re in shock after hearing the diagnosis and in no shape to do that. Eat as healthy as possible during treatment so that you don’t suffer the gastronomical side effects. And finally, become a warrior, not a victim and fight hard, but also listen to your body and be sure to rest when its needed.

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