I had breast cancer 18 years ago. I have it again.
This is not newsworthy, but for the fact that two bouts of cancer start to make you something of an expert. Perhaps some of what I’ve done (and, unfortunately, haven’t done) can help others.
My new cancer was found on Halloween Day and is a new cancer, not a metastases of the old one, which my oncologist successfully nuked in 1998. Back then, I did a lumpectomy (removal of the tumor, not the whole breast), three months of chemotherapy (a toxic chemical cocktail delivered by IV that targets splitting cells, both healthy and cancerous), and just over six weeks of daily radiation (zaps to the affected breast that were time-consuming but not debilitating like chemo). Post-treatment, I received 10 years of hormone therapy to block the estrogen that helped my particular kind of cancer grow (a daily pill with no side effects for me). My oncologist calculated my chances of getting another breast cancer at 1-to-3 percent.
Epiphany #1: Find a great oncologist you can trust, with no regrets. My doctor, Dr. Joyce O’Shaughnessy, an internationally known breast-cancer researcher, is Chair of Breast Cancer Prevention and Research at Baylor-Sammons Cancer Center. In 1998, I received the most aggressive, proven, cutting-edge treatments from her. I have consistently told her, over all these years, that if I ever got cancer again, I would chalk it up only to bad luck.
So how do my new and old cancers compare?
Both tumors were small and round and found in my left breast; both felt like a hard BB gun pellet when I touched them with my finger. The first one was very high on my chest at the 12 o’clock position; the second one was to the extreme right of the breast, near the middle of my chest.
I found the first one myself, sitting in bed watching TV one night with my husband, Steve Wolens. Quite frankly, at age 39, I wasn’t too worried about it, especially since I was still feeling the protective armor of having breast-fed three babies for a year each (an alleged breast cancer preventer). Some months later, at my annual women’s exam, I had the presence of mind to mention the bump to my gynecologist, who had just completed a physical breast exam on me and hadn’t found anything. He ordered a mammogram and a sonogram, which saw the tumor clearly.
Epiphany #2: Do regular breast self-examinations. This is not an idle recommendation – I have never done a breast self-exam, which is embarrassing to admit. That night many years ago, sitting in bed watching TV, I found that tumor by complete accident. If I hadn’t, it would have kept growing until my next checkup (unless it had grown large or painful enough to send me back to the doctor).
Worse, I didn’t find the second tumor at all. In October, a sharp-eyed Baylor radiologist noticed something suspicious on one of my annual mammogram images, ordered me in for a second mammogram, and found the tumor. There is no excuse for my behavior: I am an idiot. (I once called a former Dallas police chief an idiot and took a lot of flak for it, so rest-assured I mean this when I say it.)
My biggest regret about getting cancer again is that having suffered through it once, and having been told thousands of times (as all women have) that breast self-examination is the key to early detection that saves lives, I simply didn’t heed the advice. For several reasons.
First, due to my lumpectomy surgery, scar tissue developed in that breast, and the few times I did do self-examination, everything just felt abnormal (and scary). So I gave up trying to differentiate between the bad stuff and the good. There was also subconscious arrogance: I had a tiny 1-to-3 percent chance of recurrence and I NEVER missed my annual mammograms, blood work and oncology checkups. As each year passed by healthfully, I felt further removed from danger, and for the last five years I’ve been taking a cancer-preventing hormone pill, Arimidex, every day.
As it turns out, the Arimidex did nothing to prevent the new cancer. That’s because my second cancer chose to be a different type, estrogen negative (versus estrogen positive,) which is not receptive to hormone treatments. Who knew my body would grow a different type of cancer? Nobody.
If you don’t do regular breast self-exams, think of it another way: Who do you think is out there, constantly watching your body, doing everything possible to keep you from getting sick? Nobody. Nobody but you.
In fact, my two tumors were at such extreme edges of my breast that it would have been impossible not to find them if I had been smart enough to be looking. And if this breast cancer happens to metastasize, that fact will haunt me because I easily could have caught it earlier, which is the best way to keep a tumor contained.
My new cancer also grows a lot faster than my old one. A lot of women don’t find these aggressive tumors until they are 2 or 3 centimeters in size (because they don’t either don’t do self-exams, don’t get regular mammograms, or both). Luckily, my tumor is considered very small, at .8 centimeters. I am also lucky that no cancer cells were found in the breast tissue around the tumor or in the five lymph nodes that were surgically removed from my left armpit to check for cancer (a routine procedure to check for possible metastases since lymph nodes act as a filter for cancer cells floating through our bodily fluids). A nuclear medicine scan also showed no evidence of cancer elsewhere in the body. All of which means I’m a Stage 1 (out of 4) cancer, just like last time.
Now that two tumors had appeared in the same breast, it was clear that the left breast needed to go. But to remove the possibility of the cancer returning in the other healthy breast, Dr. O’Shaughnessy recommended a double mastectomy. It took no convincing. I had surgery on November 16 and went home two days later, on my 58th birthday.
Still, it is entirely possible that one or more microscopic cells could have broken away from my tumor, circumvented the surgically removed lymph nodes that a pre-operative test showed were most likely to carry them, and are now floating down the lazy river toward another organ.
This was the same scenario I faced in 1998: How to reduce my chances of recurrence by killing off what may (or may not) be there? Once again, Dr. O’Shaughnessy recommended chemotherapy, which I start on December 14 — four rounds, one every three weeks. Once completed, I will have reconstruction surgery to put cosmetic implants in both breasts. I keep telling my superb plastic surgeon that I only want “a small B cup,” but it’s Dallas, after all, and he just laughs (like the Nordstrom lingerie saleswoman a few years ago when I asked her where to find the size 36A bras).
The last time I did chemo, I lost all my hair. It is not a pleasant experience; if there is anything that makes you look and feel like a cancer patient, it’s going involuntarily bald. In fact, when Steve and I sat our kids down to tell them about my cancer 18 years ago, my 8-year-old had only one thing to say when the presentation was over (my husband, ever the lawyer, used a white board and markers): I was not allowed to come to her school carpool line with a bald head.
Bald means cancer, at least for women. It’s not that I mind others seeing me that way. But, for me, looking at myself bald in the mirror every day for all those months made me feel worse than the chemo.
Epiphany #3: You can try and save your hair. Companies exist today that specialize in preventing hair loss during chemo. They rent out fitted caps that are cooled by dry ice, then rotated in succession on your head before, after and during chemo; in my case, I’ll get a new cap every 20 minutes for 6 hours on the day of each treatment. The caps have great results for certain types of chemo combinations, and my combination (Taxotere and Carboplatin) happens to be a good one that should let me keep 70-80 percent of my hair. (One disclaimer: to get to those numbers, I can’t dye, brush or blow-dry my hair for the entire period I’m doing chemo, and I can only wash it twice a week and style it with a wide-toothed comb.) I am using a Dallas company called Chemo Coldcaps, but there are others, including Penguin Cold Caps, DigniCap, and Paxman, which Baylor is currently using in a trial. (Not every company mentioned above has FDA approval, but it’s a simple, non-intrusive concept. Unfortunately, it’s rarely, if ever, covered by health insurance.)
So after all of the cutting and poisoning is done, what are my new odds of remaining cancer free in the future? Not as low as 1-to-3 percent, but pretty good: 4-to-5 percent, according to my oncologist. (I’m the poster child for great odds being false balms, but it’s nice to hear them anyway.) If I want to drive those numbers even lower, down to 2 percent, Dr. O’Shaughnessy told me, it’s completely contingent upon mesince her medical bag will be empty after surgery and chemo.
Epiphany # 4: There are four ways to further lower the odds of getting breast cancer. Dr. O’Shaughnessy ticked off various clinical trials and studies that have clearly proven these to be effective. Significantly, she said, all four have worse implications after a first breast cancer if you don’t do them.
· Avoid substantial weight gain (10-15 pounds or more) and eat a low-fat diet. The Women’s Intervention Nutrition Study, released last year, found that mortality rates plunged 54 percent for women with my specific type of estrogen-negative cancer if a low-fat diet was adhered to for 15 years.
· Walk, run or jog at least three hours a week. The Harvard Nurses Health Study, conducted over many years with more than 100,000 nurse participants, found that doing this resulted in a 50 percent decrease in the chance of dying from breast cancer.
· Avoid hormone replacement therapy. This used to be a common treatment for women to replace the female sex hormones they lost after menopause, helping with post-menopausal symptoms like hot flashes. It has been found in multiple studies to increase the risk of breast cancer – most comprehensively in 2002 and 2004 in two randomized clinical trials sponsored by the National Institutes of Health.
· Don’t have more than one alcoholic drink per day.Alcohol is a toxin that the U.S. Department of Health and Human Services lists as a known carcinogen, and breast cancer is the leading alcohol-related cancer in women. The Million Women Study in the United Kingdom, an ongoing study with 1.3 million participants (low to moderate drinkers, average age 55) concluded in 2009 that women who drink one glass of alcohol daily have a 12 percent greater chance of getting breast cancer than non-drinkers, and that number shoots up with higher consumption. (The study attributes 11 percent of breast cancers in the U.K. to alcohol.)
Dr. O’Shaughnessy went over these lifestyle guidelines with me in her office the day she laid out my chemo schedule. I happily reported to her that I was an A+ on three of the four: I am the same weight I was in high school, 134. I was training for a half-marathon when I was diagnosed with the new cancer. And I have never taken hormone treatments. But on the fourth benchmark, I come up short: for years, I have enjoyed 2-3 glasses of red wine with dinner. Well, needless to say, I’m not doing that any more. Since the day of my conversation with Dr. O’Shaughnessy, who said she was comfortable with my body absorbing one glass of wine with dinner, I am drinking one.
But the truth is we don’t know why we get cancer. Dr. O’Shaughnessy doesn’t know why I got cancer at age 39, and she is surprised that it came back.
Nevertheless, when I got cancer the first time, I was obsessed with trying to figure out how it happened. The most likely reason, in my view, was genetic: my paternal grandmother was diagnosed with breast cancer at age 53, which metastasized into lung cancer (and then beyond) seven years later. She died at 65. But my genetic test came back negative, as did a more advanced test taken a few weeks ago.
Still, I spent countless hours reading books on breast cancer that first time, especially the chapters on mortality, for reasons I don’t really fathom except that I was scared. It terrified me most that my children would lose their mother at such a young age and that I would never see them as adults (both fears generate different kinds of tears).
I cannot control it, which I only learned last month. But I can fight it, and I am ready for whatever comes.
My reaction to getting cancer this second time is dramatically different. I see those intervening 18 years as a great gift, one that enabled me to see my children develop into fine adults. Still, I admit that the majority of the tears this time around were shed when I first told my children the news, knowing it would devastate them. Another thing I am grateful for: when I decided not to run for re-election for mayor in 2007 because my oldest daughter asked me not to (for the good of our family, which was tired of competing with City Hall for attention), I couldn’t have known how much that decision would mean to me today. I was a great (sometimes over-involved!) mother these past nine years, and it’s an enormous comfort to have no regrets about that now.
Yes, I’m unlucky when it comes to cancer. But I’m lucky too. I have family and friends who love me. I have health insurance. I’m in great physical shape to help me get through this. And for the first time since I was 14 years old, I am not working right now. (At 39 I was grateful for professional diversions; at 58, not so much.)
I’m also lucky that I’m the kind of person who finds the greatest joy from the smallest things: my morning ritual of coffee and newspapers with my husband and best friend, Steve; a really hot bath; the daily New York Times crossword puzzle; a good novel; calls and visits from my kids; Saturday morning spins around White Rock Lake with my running partner; and (last but not least) cooking delicious dinners for my family five or six nights a week through 30 years of marriage (yes, even when I was mayor, though the food was a bit less elaborate then).
I don’t know where cancer will take me. I cannot control it, which I only learned last month. But I can fight it, and I am ready for whatever comes. I am happy and hopeful.