Friday, August 31, 2012


Friday, August 31, 2001
2:00 PM
North Shore University Hospital, Ambulatory Care Unit
Patient out of surgery, in recovery.

I was the patient. The Friday of Labor Day weekend. Everyone was in holiday mode. I had woken up rather fast because I don’t take pain killers. I really didn’t need them. I had a little bandaid on my left breast where the surgeon had just performed a biopsy for a suspicious shadow that showed up on a mammogram. Mammograms I had been getting since I was 35 because my gynecologist insisted. I was still in my 30′s, had only turned 39 two months before.

I loved my breast surgeon. I had gotten to know him over the years because the same gynecologist  not only had me getting mammograms and sonograms but he had me go to a breast surgeon to have them read because I had really “dense breasts.”  I didn’t know what that term meant back then. I thought it meant it was because I was young and stacked. Nope. I know better now.

There is nurse standing in front of me with a clipboard that is my post-surgical chart. My breast surgeon is standing to my right. I am now in the sitting-in-the-chair mode of recovery. They give you tea and a graham cracker and if you manage to stay upright then you can ambulate your way out the door. I look up at my surgeon and ask him, “Well? Am I OK?” He doesn’t quite look at me, but doesn’t look away either. Maybe he learned that from Professor Clemenza in medical school.

He said, “We won’t know for a few days.”

The nurse quickly looks down at my chart and looks up at my doctor as if to say, “Dude, that’s not what THIS says.” But they make eye contact and the nurse looks at me and then finds a tube to adjust on the patient next to me. Again my doctor says, “We won’t know anything for a while. Go and enjoy your weekend and forget about this.”

That was good enough for me. I wasn’t savvy enough to pick up the clues. I didn’t know about frozen sections and how when mine returned malignant he was so pissed he pushed over an instrument cart. An OR nurse told me that a few weeks later.

I went home with my bandaid. I remember eating dinner, watching some TV and  getting a really good night’s sleep because I still had some of the anesthesia in me. I did the usual weekend stuff and went to the beach. I had a bandeau bikini that covered the bandaid so it was fine. Two cute guys at the next beach blanket flirted with me. They told they were New York Firemen and their names were Ernie and Burt. Most normal human beings immediately think Sesame Street, but since I am an old movie freak, I immediately thought of “It’s A Wonderful Life.” There was a calm about the ocean that day. I was meeting people with names that reminded me of a movie that teaches us how important each of our lives are to every single person we encounter, no matter how fleeting.

The rest of the weekend was quiet. I think I went to a barbeque. I don’t remember telling anyone outside of my family that I had a biopsy for breast cancer. I just let it go. Saying it out loud seemed to make it too real. That was one weekend I will never forget. Not because of what was about to happen, but because I was still free that weekend. Free to live a healthy life. Free to have a child. Free to live in peace without always having to look over my shoulder. What I would give to go back there for just a day and experience true blissful ignorance. But life doesn’t work like that.

A few days passed and I heard nothing. My doctor was off on Labor day and Tuesday he was in the OR. Wednesday he was still waiting for the path report and the one day I didn’t call, they called me. His nurse said he would like to see me. “Could you come in? Say 5:00? Today?” My response was a resounding “But WHY? Why can’t he tell me over the phone?” Denial. Huge. Why the hell would I have to drive all the way over there after office hours for him to tell me I was fine? I still persisted – as if trying to change the verdict before the jury delivered it.

I grabbed a notebook at the last minute in case I had to take notes. Something I would counsel a newbie to do now. Another foreshadowing?

I usually write about my “cancerversary” on the day I was told, because that is what “they” say: “You become a cancer survivor the moment you hear the words ‘You have cancer.” But today, the weather is the same. The date is falling on a Friday, just like eleven years ago, and a lot has gone on since then.

In his office, he turned to me and said, “Let me tell you about your cancer.” Not the classic delivery of “Dear, I have some bad news…” He knew I knew and wasn’t going to pretend this was all some shock. What I didn’t know was that there is more than one type of breast cancer. There is actually a “bad” one -  as opposed to a GOOD one? I got the bad one. Back in 2001, they didn’t have a fancy name for it. It was just the one that had the poor prognosis and early death. I also hit all the top scores on the aggressiveness scale. So now I am an over-achiever? I couldn’t be hitting the top scores back when I took the SAT’s? (I am still ever so grateful for those 200 points they automatically give you for filling in your name correctly.) He told me that my chances of surviving two years, much less the “golden five” were on the slim side.

Many of you know the rest of the story. It was now a race to get things going. Lumpectomy was the way they wanted to go. I had my moments of take them both off NOW! But I was talked out of it. That surgery needed scheduling. I needed to get an oncologist. “Do you have one?” Why in the name of Pete would I already have an oncologist?  Yeah- please put that on my to-do list of Terror.

Speaking of terror, I did find a doctor I thought I should see right away. He was in downtown Manhattan. They fit me in on the next Tuesday at 9 AM. Things were a little busy that day in downtown Manhattan. Suddenly my cancer didn’t seem to amount to a hill of beans when planes were flying over head crashing into buildings. It still haunts me to this day: Were Ernie and Burt, my FDNY friends from the beach, on duty? Did they make it out OK? I’ll never know.

As our nation began a war against terror, I began mine against cancer. God had me there in the city as a witness to 9/11 to toughen me up. I think he thought I needed to get my head out of my self-pitying butt and become a fighter. My chemo started when we invaded Afghanistan. The parallels helped give me the strength I needed.

Since that last, cancer-free weekend the following truths had to be accepted:

1. Nothing would ever be the same again.

2. I would never have children.

3. You learn where you stand with your friends and family. Some are there for you and some forget you ever existed.

4. You never feel entirely safe.

5. Everyone has a story about breast cancer.

6. Pink ribbons, bears, cookies, pins, necklaces and all the other pink shit makes you feel worse. It marginalizes you into what society wants you to be, a pretty little pastel patsy.

7. I am not a pretty little pastel patsy: I am George S. Patton and Michael Corleone rolled into one  and I’m bringing a gun to this knife fight called cancer.

8. Although some may try to make me feel that way, I am no less a woman than I was before all this. In fact, I am better.

9. I know what is important and understand George Bailey on a level now that I never did before.

10. Nobody puts baby in a corner. Especially this baby, baby.
I also found where I believe God wanted me to be in Cancerland. I was to be an active participant, not wrapped up in poor-me, but in giving of myself to every and any woman who needed comfort and strength. I started a support group. I wrote my first book. I turned that into a comprehensive website. I founded my non-profit and started truly helping other women who are not as fortunate as I was to get early detection. I fight every day for young women, especially African-American women, to learn about the “bad”cancer, the one I had, known now as Triple Negative Breast Cancer. That is the kind they are more likely to  get and they get it young. If they wait until they are 40 for their first screening it may be too late.

Also during this time, I managed to fit in another breast cancer diagnosis, this time bigger and more advanced than the first. I had bilateral mastectomies, reconstructive surgery, nine more months of chemo and radiation. I wrote another book to help women live a kick ass life AFTER their treatments are over. I’ve done lots of media and love to give inspirational speeches to women going through this. It can be a hall full of two hundred or an exam room with just one patient. There are a few new things coming up, but I will tell you about them later.

I kept true to the one, deep promise I made to myself: I refused to be the designated cancer patient with my friends, in my community and professionally. The best compliment I get is when people do not believe me when they hear I not only had cancer twice, but chemo and radiation twice as well.

Because of cancer I have friends all over the world who I love with all my heart. I have also lost dear friends to this disease and it is extremely hard. Hard to lose them; hard to try to calm other survivors when they get scared because they think they are next; hard to calm myself down when I think the same thing.

But as I have written in my book and told you here many times: Forward, always forward. Don’t think about the bad thing that may happen- focus on now and the beautiful moments around you that happen every day, because it is these moments that make a life. Living in fear does not.

Be still. Be grateful. Be vigilant. Be forgiving. Be loving. Be sexy. Be unpredictable. Be brave. Be yourself. Just BE.

Eleven years ago on the Friday before Labor day I was just getting home from the hospital. All those years. All the things that have happened.
If you have managed to get to the end of this never-ending post, you’ll understand when I say that “Sometimes the light keeps shining on me; other times I can barely see; but lately it occurs to me: What a long strange trip it’s been.”

Keep truckin’ friends. And never forget:
No Surrender.

Thursday, August 9, 2012

Promising New Trial Results for Metastatic Women

Trial Suggests New Treatment Option for Some Women with Metastatic Breast Cancer

Results from a phase III clinical trial suggest that, for some women with metastatic breast cancer, combining two drugs that work in different ways to disrupt estrogen's ability to fuel cancer growth may delay disease progression and death. The results were published August 2 in the New England Journal of Medicine.

Several breast cancer specialists cautioned, however, that the trial results are not enough to change clinical practice and need to be confirmed.

In the trial, women with metastatic breast cancer treated with the aromatase inhibitor anastrozole (Arimidex) and the antiestrogen fulvestrant (Faslodex) had better progression-free and overall survival than women who were treated with anastrozole alone. Both drugs are already approved to treat metastatic breast cancer.

About 700 women took part in the NCI-funded trial, which was led by SWOG, formerly the Southwest Oncology Group. All of the women in the trial were postmenopausal, had hormone receptor-positive metastatic breast cancer, and had not been previously treated for metastatic cancer. Women in the combination group were given the standard dose of fulvestrant (500 mg) the first time they received it, followed by a lower dose (250 mg) for the remaining treatments. About 40 percent of the women in the anastrozole-only arm began to receive low-dose fulvestrant after their disease began to progress.

Median progression-free survival—the trial's primary endpoint—was 15.0 months in women who received both drugs and 13.5 months in women who received only anastrozole. Overall survival was 47.7 months in the combination therapy arm and 41.3 months in the anastrozole-only arm.
In general, toxic effects were relatively mild and did not differ greatly between the two groups. Nevertheless, 42 patients who received anastrozole alone, and 51 who received both drugs, experienced severe toxic effects, including musculoskeletal pain, flu-like symptoms, and difficulty breathing.

But the results are convincing, said lead investigator Dr. Rita Mehta of the University of California, Irvine, in an interview. "Fulvestrant and anastrozole should be standard for women who would qualify for the study," she said.

But Dr. Jung-Min Lee, of NCI's Medical Oncology Branch, stressed that overall survival was a secondary endpoint of the study and said that several questions need to be answered before the combination therapy is used in clinical practice. "We first have to define the population who might benefit most from the combination therapy," Dr. Lee said. "And we need more data to confirm the overall survival benefit."

The results also conflict with those from a similar international trial, called FACT, which found no difference in overall survival between women who received anastrozole and fulvestrant and women who received anastrozole alone. The trials had several major differences that likely explain the discrepant findings, Dr. Mehta said.

The FACT trial was smaller, she explained, included more women who had received prior tamoxifen (70 percent versus 40 percent), enrolled patients who had completed chemotherapy for earlier-stage disease within the previous 12 months, and was restricted to patients who had suffered a relapse. These differences in the study populations likely "enriched [the trial] for patients with relatively endocrine-resistant disease," she said.
This research was supported by grants from the National Institutes of Health