by Joan Lunden
“Stressors” really got my attention!
Why?
Because lack of sleep and stress are two of the biggest perpetrators science is studying that can and likely do contribute to a higher risk of developing breast cancer.
After spending nearly two decades working on Good Morning America, I understood the meaning of sleep deprivation. I’d gotten used to my routine of waking up at three-thirty A.M. so that I could leave my suburban home by four and arrive in New York City no later than five for hair and makeup at the television studio. Those were long days, with countless road trips and lots of pressure to perform at the top of my game.
Did I mention that I had three young daughters at home who needed me from the moment I walked through the door until the second they went to sleep?
My day job couldn’t interfere with my responsibilities as a mom.
Who had time to sleep?
On a good night, I hoped for six solid hours of sleep, but that meant getting into bed by nine-thirty.
Yeah, that didn’t happen very often.
I was supposed to be snug in my bed, lights out, eyes shut, when my daughters wanted homework help or were on the phone making plans with friends for the next day after school.
Okay, not to be an alarmist, but who doesn’t have stress in their lives? However, those of us who live our private lives in the public eye sometimes have our stresses magnified!
Does that make my stress bigger or worse than anyone else’s?
No.
But it sure makes it more public and sometimes better tabloid fodder!
When I look at this list of possible contributing factors, I see quite a few matches that I could place a check mark next to.
Does that mean I somehow gave myself breast cancer?
I don’t know the answer to that.
I can tell you I worried about it.
A lot.
I certainly felt guilty for some of my decisions.
The only purpose of regret is to challenge decisions we’ve made along the way and to question the course of our lives. Any way you looked at it, regret wasn’t going to change my diagnosis.
When I thought about my father’s life’s work, I realized he died with so much left to do in the fight against cancer. Somehow I understood that through my diagnosis, I was being given the chance to carry on his legacy. If I shared my story and went public with my battle, it occurred to me, I might have the opportunity to help save even more lives than my dad—who was taken much too soon.
For the past twenty-five years, much of my work had been dedicated to and focused on health and wellness. To be fair, I was the image of health without realizing that I wasn’t the picture of it. With my breast cancer diagnosis, my mission in life had just grown. You see, every challenge we face in life is really just an obstacle waiting to be turned into an opportunity. It occurred to me that my purpose had now become carrying on my dad’s work. I had never been given a more important assignment. I wanted to—no, make that needed to—inspire others to protect their health. It had to become a necessary commitment, one I would accept with dignity and grace. My focus would be primarily on breast cancer. I couldn’t think of a better way to honor my father and the work he did.
I’ll admit I haven’t made perfect choices every single day—who among us has?
That’s what makes each of us human.
One thing I know for sure: I can’t dwell on what was.
I have to place my focus on what is so I can get to what will be.
CHAPTER 4
Choosing the Path of Least Regret
The only person who can save you is you; that was going to be the thing that informed the rest of my life.
SHERYL CROW
Singer/songwriter, diagnosed with breast cancer in 2006
When the pathology report came back, it said that my breast cancer cells tested negative for estrogen receptors, progesterone receptors, and HER2 receptors. Testing negative for all three means that the cancer is triple negative. Triple negative results mean that the growth of the cancer is not supported by the hormones estrogen and progesterone, or by the presence of too many HER2 genes. Therefore, triple negative breast cancer (TNBC) does not respond to regular hormonal therapy like tamoxifen or therapies that target HER2 receptors , such as trastuzumab. As I would quickly discover, about 10 percent of all breast cancers diagnosed—about one out of every ten—are found to be triple negative.
And now, as a result of this diagnosis, I was facing the biggest battle of my life: saving my life.
Where does one even begin with this fight?
For a lot of women, this is the stage where they freeze in fear.
Boy, can I understand that.
It’s scary as hell.
While I was terrified, I have never been the kind of woman who crumbles in distress; I use my anxiety to rise to the occasion, and I take all of that negative energy and channel it into something positive. In this case, the only way I could cope with the reality was to get on my surfboard, ride this unintentional wave, and yell, “Cowabunga!”
I inherently knew I would want to choose the best and most effective course of treatment available today—one that would kill the cancer that had taken up residence inside of me. My real angst was over finding my way to that answer.
It wasn’t going to be an easy walk. You see, there are several different ways to attack my kind of breast cancer. I could speak with the three leading oncologists about which one was the best, and I would get three completely different answers. It wasn’t going to be a black-or-white decision. In the end, it would be up to me to make the decision that felt right for me.
Once I was diagnosed with breast cancer, I felt as if everything happened so fast. I know it doesn’t move at lightning speed for everyone, but my treatment was definitely on a fast track. The day after I met Dr. Ward, Lindsay met me at the office of Dr. Ruth Oratz, one of the leading oncologists in New York City. Dr. Oratz’s treatment center catered to breast cancer patients, so there were only a few other women in the waiting room when we arrived. Dr. Oratz’s office had a warm and fuzzy atmosphere that I found surprisingly welcoming. It wasn’t a massive, institutionalized cancer center. It was a private practice that felt personal and was the antithesis of a large hospital setting. It was exactly what I needed at that moment. I hadn’t told anyone about my diagnosis yet and was petrified someone would blow the whistle on me and take my news public before I was ready. Although I was still in something of a state of shock, I instantly felt safe the moment I walked through the door.
Dr. Oratz and I clicked from the moment we met. I wasn’t surprised, since she is married to Dr. Albert Knapp, my primary care physician and one of the top gastroenterologists in the city. Dr. Oratz made me feel like I was with family from the first hello.
While she was very warm, she got right to the point. She explained that I would be going through several rounds of chemotherapy; it wasn’t a question of whether I would have chemo or not. It was deciding which drugs I would need, in which combinations, and in what order I would be taking them. Dr. Oratz explained to me that for many years, oncologists had recommended a standard ACT regimen of chemotherapy for fighting breast cancer like mine.
The information was delivered very matter-of-factly. Dr. Oratz wasn’t cold. She was professional and extremely knowledgeable about the course of action. It’s wild to look back on these meetings, because now I know about all of the possible options, but at the time, I was so naive. I was gathering information and soaking it all in like a sponge. I had no idea which way was up, let alone how to choose the best course of treatment.
I was about to encounter the first of many potentially life-altering decisions I would be required to make while waging my battle against breast cancer.
Dr. Oratz laid out the same regimen that Dr. Ward had spoken of the day before, beginning with chemotherapy, which would shrink the tumor; followed by surgery; and finally, radiation. However, both doctors recommended that I
flip the standard ACT treatment on its head and begin with the “T” part, a chemotherapy drug called Taxol. Dr. Oratz also suggested that we add four doses of carboplatin, the latest drug being used against TNBC, every three weeks during the twelve-week course of Taxol. Carboplatin was somewhat new to the treatment of breast cancer; though it had been used for years to treat other cancers, only in the last few years had trials been done to assess its success in the fight against breast cancer. Taxol would be followed by an eight- to twelve-week course of AC: Adriamycin and Cytoxan, which was taken every two weeks (or every three weeks). This chemotherapy would significantly reduce the size of the tumor or maybe even get rid of it.
Dr. Oratz explained that she had been at an oncology conference the week before during which they discussed the results of a new drug trial of the CALGB (Cancer and Leukemia Group B) 40603, looking at the integration of Carboplatin (paraplatin) and Avastin (bevacizumab) into the management of TNBC. This drug had been combined with Taxol for triple negative breast cancer only recently, with first reports of efficacy presented the year before, at the 2013 San Antonio Breast Cancer Conference. She outlined some pretty impressive success rates found by the doctors leading the trials of this new drug regimen.
I was learning so much about triple negative breast cancer, how the body works, how cells work in the body, and how chemotherapy works, all in such a short period of time. It was like a rapid-fire course in anatomy and biology. I experienced such an amazing intake of information. You can bet there were days when my doctors were discussing cell division and sentinel lymph nodes and I was wishing I’d paid closer attention in biology class.
The plan Dr. Oratz ultimately recommended for me was not the standard treatment used by most oncologists. My plan would have me fighting cancer for the next eight to nine months. However, Dr. Oratz assured me that the approach was, in her opinion, the latest, greatest, and most promising treatment path available for my needs.
That was music to my ears.
She went on to explain more about the drugs I would be taking and the side effects of the chemo. Believe me, they weren’t pretty.
“Yes,” she said, “there will definitely be hair loss. Complete and total hair loss.”
She was saying I would be . . . bald.
Stop right there.
I suppose I knew this was a possibility. After all, I had asked Dr. Ward about hair loss when she’d told me about my tumor. But the “likelihood” was becoming something of a sure bet.
My stomach was in knots. What woman wants to lose her hair?
At the risk of sounding horribly shallow, I admit I shuddered at the thought. My hair had been my trademark for years. It was part of my brand and persona. On the day I left Good Morning America, the producers surprised me with a montage of my changing hairstyles over those twenty years. There were a few I’d rather have forgotten! Then again, there were a couple that women really loved. I remember being backstage at a concert many years ago where I met Faith Hill.
“I cut my hair to look just like yours!” she said.
You can bet I was flattered!
I’d heard this from women for years. And now . . . well, I simply have no words.
I get it. I know. It’s hair. It can grow back. But still. I was shaken up.
The other major side effects Dr. Oratz said I could expect were nausea and a major loss of energy. I’ll admit, these worried me nearly as much as the hair loss did. I’m a bit like the Energizer Bunny. The idea of not having any get-up-and-go kind of freaked me out.
Although everyone experiences the side effects of chemo treatment in his or her own way, I supposed there was always the chance that I might sail through this treatment—then again, it could just as easily bring me to my knees.
Dr. Oratz said I should begin my chemo immediately, suggesting I could take my first treatment within the coming week!
Really?
It all seemed to be happening so fast.
A little too fast.
I was feeling nauseated already, and I hadn’t even started chemo!
The rapid pace definitely made my cancer feel very real.
At the time, Lindsay was adamant about my getting a second opinion. She wanted to know that everything we were hearing was the exact and correct course of action. Lindsay comes from a generation used to second-guessing the information received from doctors by looking everything up and researching information through various channels on the Internet. For whatever reason, this generation won’t or can’t accept what their doctor tells them as the gospel truth.
I, on the other hand, have always had a trusting relationship with my physicians. I’ve never had a solid reason not to go with whatever they tell me. I had no reason to believe anything Dr. Oratz was suggesting wasn’t the best course of action. I liked her and felt comfortable at her office. I didn’t want to get even more confused than I already was. But after giving it some thought and talking it over with Jeff and the girls, I realized that seeking a second opinion was the smartest thing to do.
Despite Dr. Knapp’s personal relationship with Dr. Oratz, he had already set up an appointment for me with a leading oncologist at Memorial Sloan Kettering Cancer Center, one of the most celebrated cancer centers in America. Jeff, Lindsay, and I drove into New York City together and made our way to Sloan Kettering. It was a bittersweet day. Kate and Max had graduated from elementary school. Kate was the commencement speaker. She was so unbelievably poised and self-confident as she rose from her seat among the rest of the fifth-grade class and took to the stage to deliver her flawless and poignant speech. Interestingly, she never let us hear it in advance. She wanted to do it all on her own, and she knocked it out of the park. Jeff and I were so proud. We just couldn’t believe that Max and Kate were out of grammar school and going into middle school. As I sat there in that school auditorium watching the ceremony, I couldn’t help but think about the horrible possibility that I might die and Jeff would be left to raise our four young children alone and wouldn’t have me sitting next to him at memorable life events to shoot him a smile or a knowing glance that said, “I love my life. Isn’t this a wonderful moment, and aren’t these kids great!”
On one hand, there we were, celebrating the kids’ fantastic milestone; yet on the other, we were contemplating the unthinkable. I was so thankful that Jeff had come back from Maine to be with me for the second-opinion appointment. Having him by my side gave me a sense of calm and comfort that I don’t always articulate but certainly feel when he is near.
I was intimidated upon entering the majestic yet massive New York City hospital. Though the lobby of Sloan Kettering is beautiful, I barely noticed as we dashed through it to the elevator bank. I didn’t want to make eye contact with anyone. I was scared to be there.
Scared to be seen.
Scared to be found out.
Scared that I had cancer.
However, we had come to see one of the country’s most renowned oncologists. There was no backing out now.
When we laid out my situation for this oncologist, he had a very different opinion as to how I should proceed. He said he would recommend starting with a lumpectomy; then he would proceed with the ACT chemotherapy, the more traditional regimen. I asked if it wouldn’t be advisable to shrink the tumor first with chemo and then have a smaller surgery, since the tumor would be smaller. I shared that my cancer surgeon felt that if we first shrank the tumor, the lumpectomy would be far less invasive. He gave us lots of statistics and reasons why the tried, true, and tested way of treating my type of cancer was the better way to go.
I didn’t really have the knowledge to argue the other side, so I asked him to call my breast surgeon, Dr. Ward, so we could discuss the pros and cons together. By the end of the conversation, he agreed that in my case, it made better sense to do the chemo first and then surgery when the tumor was presumably smaller. However, he still didn’t agree with the new chemotherapy regimen that Dr. Oratz recommended. He felt that the more traditional ACT tre
atment was still the way to go, that the carboplatin was too toxic and there wasn’t enough evidence to support that regimen of care. Ironically, he went on to tell us that the study Dr. Oratz was referring to was HIS study!
Here’s why.
The use of the carboplatin regimen is still controversial. The main line right now is that it is more appropriately used in women who carry BRCA1 and BRCA2 mutations because their tumors are inherently more resistant to standard chemo. The study however, did not partition patients into groups that are BRCA positive and not. The overall result is that the response rates are higher in patients with triple negative breast cancer with the addition of carboplatin.
The end point of the research study was SURVIVAL and those data are not yet ready. As the author of the study, he could not recommend something that did not meet the PRIMARY endpoint of his own study.
While I could appreciate where he was coming from, I was more confused than ever.
Dr. Oratz was basing her course of treatment on a study that he had done, yet even the doctor who’d conducted the study couldn’t necessarily go by the results.
Okay, wait a minute.
He wasn’t wrong.
Hello!
Is anyone else CONFUSED?
I left that appointment with more questions than answers.
You go for a second opinion so you can hear different opinions, but hearing such different opinions from two of the top experts in their field can be very disconcerting. Each regimen would have worked. It was a matter of figuring out which approach was right for me.
How were we supposed to make this decision and move forward medically with a treatment that would offer my best chance to beat cancer? I wasn’t a doctor. God, I wished my dad were around to help me make that decision.
Jeff and I discussed it and decided that, overall, I felt more comfortable with the “chemo first” approach. This treatment had such impressive success rates in the trials that it was probably the best way to go for my particular case.