My First Year of Living with Breast Cancer:
By Stephanie M. Day
Back to Stitch in Time
Was that my 80-year old mother’s prescient observation, my first clue to which I should have paid more attention, or her characteristically humorous way of saying that I had gained a little weight? Admittedly, I had noticed a slight change in my breast size during the past two years, and vaguely wondered whether or not it was normal for one breast to grow larger than the other. But, hey, I dutifully did my monthly self-exams and got my mammogram every year, and the tests were always clear. So, I chalked up her comment to a combination of having not seen me for two years and the fact that one of my nieces had recently undergone breast augmentation surgery. We will never know if the “where’d you get those big boobs” question was a premonition or simply a coincidence, but it certainly sticks in my mind as one of the first red flags raised during my breast cancer saga which started officially on November 24, 2003—diagnosis day.
“Your life flashes before your very eyes,” so goes the saying, when confronted with life-altering news. For me, my body registered the news with the sensation that all thoughts had congealed in my head, hardened into a mass the size of a bowling ball, careened down the center of my body, ripped out my heart along the way and plummeted to a thunderous stop in the pit of my stomach. The ball then reversed course, screeched back up to my brain, which by then had acknowledged the information being disseminated by the Breast Center biopsy doctor: “Mrs. Day, we found cancer cells in your right breast. Do you have a surgeon?”
All this sensation occurred in the space of approximately two seconds, after which my irreverent mind went into kill the #!!%*-ing messenger mode: “Why the hell would I have a surgeon? Do people keep them on retainer? Like having a gardener or a housekeeper? I am tall, slender, athletic, a healthy eater, a young 54 (50 being the new 30 and all) and have been a successful Silicon Valley marketing executive for years. People like me do not get cancer! Furthermore, no one in my family has ever had cancer.” (Was I harboring a bit of animosity towards this doctor? The one who performed the ultrasound biopsy exam, which was administered with only a topical or skin numbing agent? At the point I screamed an obscenity, he casually inquired, “Did anyone ever mention to you that you have a problem getting numb with Novocain?” I responded sarcastically, “Yeah, my dentist. Why didn’t anyone ask? Isn’t there any other way to perform this barbaric procedure?”)
The dialogue that transpired when he casually delivered the news (never looking me in the eye) actually went as follows. Appearing to read from a script, he said:
Mrs. Day, we found cancer
cells in your right breast. Do you have a surgeon?
Yeah, right. I was not fine. My world had just changed forever; but I could not know to what degree. I walked into the waiting room and everything looked different. Colors were brighter, objects were in sharp focus, and people stared as if they knew I was harboring a secret (or so I imagined). I felt like an alien. Fortunately, years of crisis communications management experience collided with my brain and I knew I had a task to perform. My soul mate partner and love of my life for 32 years was scared s--tless (as I was) and was waiting impatiently outside for the results.
What signal do I send him? If I prance out in my usual sunny demeanor, he’ll be unjustifiably jubilant. If I hang my head like a hound dog, he’ll fear the worst, which would have been a premature conclusion. So, I strolled over to the car, head held high, face as bland as a poker player and got in. In the silence that followed, I could think of only one neutral-sounding phrase, “Houston, we have a problem. They found cancer cells.” Since I was driving, I could get away with fumbling for my keys, thereby avoiding looking at his reaction. He calmly replied, “I could tell by your stance that something was wrong. What’s next?”
“We are going straight to my gynecologist’s office.” My doctor had suggested that we stop for a “chat” after receiving the biopsy results. That’s one of the qualities I adore about my young, bright, funny, female doctor, Anne-Marie Jackson. She paid attention and seemed to know how I’d be feeling at that particular moment. It’s also convenient that she is intimately knowledgeable about the female body, having attended to hundreds of women all ages, in all phases of life, from childbearing years through menopause and beyond.
Time here for a bit of background. It was my gynecologist who ordered an urgent ultrasound examination of my breast after I called her and announced that I had just had (October 30) a clean mammogram, but felt something was not right. My right breast felt swollen, tender, had a reddish orange peel look to it and the nipple seemed to be inverting. I did not know then that those are symptoms of Inflammatory Breast Cancer, which attacks the lymph vessels in the breast and is an aggressive cancer. It did not show up on my mammogram, because, as I understand it, the tumor was not “calcified,” which is what a mammogram is designed to detect. Mammograms also may not detect cancer in dense or very fibrous breasts. Why, then, isn’t an ultrasound or MRI used routinely for detecting breast cancer? Expense, I imagine. Another weakness in the health care system.
Tip #1: At any sign of breast abnormality, call your gynecologist. If she orders an ultrasound, do whatever you must to get on the schedule immediately.
On my first attempt to get an ultrasound at the Breast Center, I was told they were backed up for two or three months. Well, Hell hath no fury like a woman having a full-body rush of terror. I drove over there and exercised my right to free speech, eventually threatening them with the wrath of my doctor. I was also wildly waving around a copy of my doctor’s ultrasound order; the one they claimed had not materialized on their fax machine. While I was planted at their counter, refusing to move, I observed a pattern of “can’t help you, we didn’t receive a fax.” I wondered if they actually possessed a fax machine. I got my appointment for the next week, November 19, with the Breast Center complaining bitterly that they rearranged their entire schedule for a month. Nothing like a good panic attack to get things done. Coincidently, as I am writing this, I just received my notice from the Breast Center reminding me to get my annual mammogram. Guess what it says, highlighted in yellow, no less? “A written referral slip from your physician is required for all radiological exams. The slip must be brought with you at the time of your appointment.” What, no more “lost” faxes?
Tip #2: Always take copies of your treatment/test orders and prescriptions to all appointments. This issue came up more than once.
When the ultrasound technician called in the biopsy doctor for a consultation, I knew we had a problem. He pronounced that they had observed “suspicious tissue” and suggested a biopsy. Would I like to schedule a surgeon, which could take several weeks, or have it done the next morning at the center? With Thanksgiving approaching, I did not want to wait for any news. Back I went the next morning, November 20, for the gruesome procedure described above.
We are now back to Monday, November 24, having received the bad news and traveled down the street to Dr. Jackson’s office. From this date forward, things moved at warped speed. My doctor scanned the list of surgeons I mutely handed her, selected one and made a call. She said, “This is the guy you want. He has a new, young cohort working with him and they are an excellent team. They are from Stanford University, but are located here in Santa Cruz.” I had an appointment for the next Tuesday, December 2. I also had visions of something simple, perhaps a small tumor, which would be plucked from my breast and life would go on as usual.
Inform Your Family and Friends; Their Support is Invaluable
One of the most difficult dilemmas in my entire cancer experience was how to tell my family and friends. I had managed the worst, telling my husband, Gil, the love of my life. Now, it was time to let the rest of the family know. I had been confiding in my sister, Chryssie, for a couple of months, that I felt something wasn’t right. So, it was natural that I tell her next, considering that she, being four years older, had essentially raised me, from the time I was three, owing to a bitter divorce between our parents and the fact that we were “awarded” custody to our beautiful and brilliant, but alcoholic father. (That’s a whole other story, which I wish to write someday.) After I blubbered for a period of time, we decided that I would tell our beloved Father, who lived three hours away from me in Cambria, CA, and that she would let our Virginia-based, Mother, Stepfather, older sister and my nieces and nephews know. My conversation with my Father was a revelation; the eternally optimistic side of his personality shined and his response to my announcement was, “I know you. You are strong. You will come though this just fine. Do not worry.” At that moment, I was added to his Episcopalian prayer list, my Mother’s and sister’s Catholic prayer lists and many more around the country. Whatever your religious beliefs might be, there’s something to be said for a ton of positive energy coming your way.
For my friends and associates, of which I had many over a 30-year career, I felt a quarterly e-mail update would do the trick, unless circumstances dictated something immediate. I sent out the first one in December, and it read:
“My Dear Friends, there is no delicate way to report this news. On December 3, 2003, I was diagnosed with Inflammatory Breast Cancer, which is a slightly rare and worrisome form of cancer. However, it is curable through a toxic combination of chemo and drugs, which I just started yesterday. This form of cancer cannot be operated on at this stage because it invades the lymph tissues in the breast immediately and would spread. The good news is that we may have caught it in time, as I noticed something awry in November and obtained an ultrasound and then a biopsy. We are staying in town for Christmas, have decorated the house, have a tree and refuse to let this get us down. I have a great team of doctors in Santa Cruz, who are affiliated with Stanford University, so I am confident I am getting the best of care. Also, family and friends are being super supportive, and I have agreed to participate in a Stanford-sponsored Peer Support clinical study, which I believe will keep me focused on beating this thing. Have a great Christmas, and be of good cheer. Stephanie.” The responses were overflowing with love and support.
It Is Not Our Fault and We Do Not Deserve It
When newly diagnosed, most of us want to find a reason for why this devastating life change has happened to us. We feel that if we can figure it out, we can control “it” or prevent recurrence. We cannot. While there are risk factors associated with cancer, there is no known cause (cancer is actually a combination of 100 different diseases) or there would be a cure by now. I’ve known people who were perfect specimens of human life: exercise, no tobacco, no alcohol, organic vegetarians, who died from lung cancer. I recently read a very articulate account of a woman’s experience with lung cancer, where she said she actually wished she’d contracted breast cancer instead, so people would stop blaming her for her disease, even though she had never smoked! Even so, I still reviewed my experiences with the known risk factors, asking myself the following questions, looking for an answer. We cannot control many of the factors, and we should not fault ourselves for contracting cancer.
(According to a report in the October 2004 issue of the New England Journal of Medicine, “the taller a girl was at 14, the higher her chance of later developing breast cancer. For example, a girl 5 foot 6 inches tall at 14 had about a 50 percent higher risk of later developing breast cancer than one who was just under five feet at 14. Babies who weighed 8.8 pounds at birth had a 17 percent higher risk of later breast cancer than ones who were only 5-1/2 pounds. Each additional two pounds over 5-1/2 boosted the risk by 10 percent.” The report went on to say that what a pregnant woman eats and drinks and her daughter’s diet during childhood appear to affect the risk of breast cancer.
The Medical Team Assembles
I had picked up a breast cancer brochure at the Center and one of the bits of advice that jumped out at me was, “Assemble your team, which may need to include medical experts such as surgeons, oncologists, radiation oncologists and others.” Fortunately for me, my team was about to assemble itself.
We (my Gil husband accompanied me to all consultative appointments) met with the surgeon’s young cohort and I was struck by how, well, young he looked. Armed with just enough information from the cancer brochure to be dangerous, I asked THE question.
“Just how many breast surgeries have you performed, young man?”
His reply? An astounding, “I operate on average once a week,” which said as much for his experience as how pervasive breast cancer has become, unfortunately. I apologized immediately for my arrogance, which he accepted graciously, and we got down to business. “First of all, he said, you don’t need me. What you have is inoperable at this time. You need an oncologist and for chemotherapy treatment to have started some time ago.” He then went on to discuss Inflammatory Breast Cancer and how it attacks the lymph vessels in the breast first and asks questions later. To cut into it now would surely spread the cancer. I zoned out at the word inoperable. This leads me to the next tip, which I did not originate, because every cancer book and website I’ve read (which is a lot, since I am an admitted information junky) makes the same suggestion.
Tip #3: Take someone with you, a significant other or friend to all consultative appointments. You may be too stunned to remember all the information you are given.
After nearly an hour of examination and discussion, Dr. Hansman recommended that I see a highly respected oncologist, Dr. Michael Paul Alexander, another Stanford University grad, with whom he worked. By the time we returned home, we had a message from Dr. Alexander, that he had reserved an appointment time for me with him at 10:30 a.m. the next morning.
Inflammatory Breast Cancer (IBC)—The Most Aggressive Form of the Disease
The SusanLoveMD.org website describes IBC as follows:
Women with inflammatory breast cancer—the most aggressive form of the disease—make up less than six percent of all the women diagnosed with breast cancer in the United States each year. IBC has a different phenotype, which means it looks and acts differently than other forms of breast cancer.
Most breast cancers are detected when a lump is found through self-exam, clinical breast exam, or mammography. In contrast, the first signs of IBC are usually visual: the breast becomes red, swollen, and warm, and looks infected. In some instances, the skin around the breast will begin to pucker or to develop dimples—somewhat like the skin of an orange—and the nipple will retract and lay flat against the breast.
Swollen lymph nodes under the arm or above the collarbone are another symptom of IBC. IBC can spread rapidly from the breast to the lymph nodes and it quickly metastasizes (spreads to other parts of the body). In fact, because IBC is so aggressive, it usually has metastasized by the time it has been diagnosed. Treatment for IBC begins with chemotherapy, which is followed by surgery and radiation. Even with the best treatment only 45% of women with IBC are alive and have no sign of the disease five years after their diagnosis.
Size Does Matter
During our first visit with Dr. Alexander he determined by physical examination that the tumor was quite large, about five inches across (my entire breast) and that lymph nodes were already involved. This was not good news. A tumor larger than two inches or IBC is considered a Stage III cancer (and there are only four stages) and is at high risk for recurrence. As I write this in 2005 and final statistics are not in, it was predicted that in the year 2004, more than 250,000 women would be diagnosed with breast cancer, with 40,000 cases resulting in death. The American Breast Cancer Foundation calls breast cancer “the disease that takes a life every 12 minutes.” By comparison, over 1,600 men would be diagnosed with breast cancer and 500 would die. While rare, men do get breast cancer.
We spent what seemed like hours in consultation with the good doctor, and by the time we left we had a recommended treatment plan and a slew of exams lined up over the following three weeks. Dr. Alexander’s plan was to nuke the hell out of the tumor with chemo (called adjuvant treatments) and try to shrink it out of existence, which he felt was possible. That was the best scenario, and the worst was that it wouldn’t respond and I would be a mastectomy candidate. But, he couldn’t start the chemo regimen without first verifying that every organ and bone in my body could take the aggressive treatment he was prescribing. We met with him December 3, 2003, and he scheduled the first chemo session for December 19, assuming no complications from the upcoming tests. The chemo cocktail was to be a combination of Adriamycin, 5-FU, both administered intravenously, and Cytoxan, given orally in my case.
The Chemo Room, Like a Bar Without Alcohol
During the examination and consultation, Dr. Alexander had a nurse present who had gone through breast cancer (a double mastectomy) who looked to me perfectly healthy and normal, which was incredibly reassuring. Then, he asked if I minded if he showed her what Inflammatory Breast Cancer looked liked, as she (and, apparently, many in the medical field) had never witnessed it before. I said no problem. By this time, I had been so prodded and poked that it just wasn’t an issue. I felt that if I could further someone’s education in order to help others, no big deal for me.
After that, the same nice, caring nurse suggested that I view the chemo room, which I would be frequenting every Friday. In my mind, she might as well have said, “Let me show you our dark, dank dungeon of a torture chamber.” As I agreed mutely and trudged along behind her, I could almost feel the ball and chain around my ankles. What came into view as we rounded a corner was nothing at all what I saw in my doom’s day scenario. Before me sat seven people, each in their own recliner chairs with a mobile chemo tray, chatting, knitting, working on their laptops, or sleeping, in a sunny room, lit by bright lights and a window with humming bird feeders amongst the Fuchsia plants. The one comment I remember from the nurse was that, “By the way, you will hear a lot of chatter about food, because chemo makes you hungry and everyone talks about what they will have for lunch after treatment.” Not what I expected, at all.
Tip#4: Do not expect the worst from cancer and its treatment. A lot has changed and improved even within the last 24 months.
© Copyright 2005 by Stephanie Day
Back to Stitch in Time