The Unacknowledged Phase of Cancer
by Bill Aron
I can’t control how long I live, but I can control how I live. Cancer taught me that.
When I was diagnosed with cancer in 1993, my first reaction understandably was fear, which was soon followed by a crushing sense of feeling all alone. I felt alienated and estranged from everyone. It was like I was living in a different universe. Susan Sontag described this feeling well when she wrote that the sick person is transported to another country, separate and distinct from the land of the healthy. Then after treatment, instead of being elated, I felt once again alone and confused.
Over time, I began asking other survivors, several hundred in all, over a 10-year period, about how they felt when their treatment was finished, and many acknowledged similar feelings. One survivor labeled it the ”unacknowledged phase” of cancer, when the frenetic flurry of treatments and doctors’ appointments is replaced with a gaping silence and an uncertainty about what the future holds.
At this point, survivors are left to their own resources as they attempt to move forward. Family and friends expect the survivor to move on. Even the survivor expects life to go back to normal. I instinctively knew this wasn’t right.
I learned a lot from the survivors I spoke with: I discovered that fear, pain and depression do not have to be lasting events, but can be viewed as passages to somewhere and something better.
Some survivors changed careers, some reordered their priorities, some started families, while others simply reaffirmed that the path they had chosen was right for them. They changed in other ways as well, altering their diets and taking up exercise. “No one dies from eating fruits and vegetables or exercising,” one survivor told me. They explored ways to give back to the “cancer community” by raising money, visiting treatment centers, founding survivor organizations, and reaching out to others who had been diagnosed. They believed they could make a difference.
Too often, the words, “You have cancer” are an ending instead of a beginning. In truth, I learned that there are amazing stories to be told of people for whom cancer became an impetus to change their lives for the better. Those stories could comfort thousands of people who felt they alone and scared. Those stories need to be heard.
Towards that end, I interviewed several hundred cancer survivors, which became the basis for the book “NEW BEGINNINGS: The Triumphs of 120 Cancer Survivors” which consists of interviews and portraits of 120 survivors, ages 2 through 99, many cancers.
In conclusion, the most important lesson I learned is that “If you can change how you feel about your life’s possibilities, then the world around you will change.” Learning to live after, and with cancer is a very different mindset – and many need help in figuring out how.
“Conquering cancer is really not about cure. It’s about living—living well for as long and as fully as one can.”
—The New York Times personal health columnist
Jane E. Brody in her introduction to NEW BEGINNINGS
A Taste of the Images: http://www.billaron.com/new-beginnings-the-triumph-of-120-cancer-survivors.html
Chelsea Kaufman and Friends, in Chelsea’s words: “Before I was diagnosed with cancer, I was just another giddy 15-year-old, size-four girl. After six surgeries and six months of chemotherapy, I first had to learn that I needed to allow myself to grieve for all the fear that I experienced, and most important, the loss of my 15th year. Only after the grief could my focus change to moving forward … To live without goals is to exist without celebrating life.”
On Thursday, I met with my oncologist Dr David Mintzer at Pennsylvania Hospital for my 4th year check up. He told me there is a symposium coming up in June which will present data for continuing Tamoxifen for 10 years! We will discuss it next year which will be my 5 year mark. Interesting to find this article online which says even 2 years helps survival. It does not suggest skipping the 5 or 10 year protocol if you can take the side effects but, if not, even two years is beneficial.
For premenopausal women with estrogen receptor (ER)-positive breast cancer, 2 years of adjuvant tamoxifen is enough to confer a long-term survival benefit, according to a Swedish study with more than 25 years of follow-up.
The study, by Maria Ekholm, MD, from Lund University in Sweden, and colleagues, was published online May 9 in the Journal of Clinical Oncology.
The finding is not surprising, said Hatem Soliman, MD, from the Moffitt Cancer Center in Tampa, Florida, who was not involved in the study.
Dr Hatem Soliman
“It has been known for quite some time, and previous data have shown that even someone who delays starting their tamoxifen, say a year or two out, still derives benefit,” he told Medscape Medical News.
The South Swedish and South-East Swedish Breast Cancer Groups conducted the randomized phase 3 SBII-2pre trial from 1984 to 1991. Of the 564 premenopausal patients with primary breast cancer, 276 were randomly assigned to 2 years of adjuvant tamoxifen and 288 were assigned to no systemic treatment.
In addition, in the Adjuvant Tamoxifen: Longer Against Shorter (ATLAS) trial, which randomly assigned patients without recurrence after 5 years of tamoxifen to continue tamoxifen for another 5 years or to receive no further treatment, the absolute beneficial effect on breast cancer mortality was 0.2% at year 10 and 2.8% at year 15 (Lancet. 2013;381:805-816).
And results from the Adjuvant Tamoxifen – To Offer More? (aTTom) trial were similar (J Clin Oncol. 2013;31[suppl]:abstr 5), Dr Ekholm and her colleagues note.
More on the Carryover Effect
In their study, Dr Ekholm’s team also saw the carryover effect on mortality.
The reserachers obtained data on date and cause of death from the Swedish Cause of Death Register, so were able to look at cumulative mortality and cumulative breast-cancer-related mortality.
For the 250 patients still alive in April 2014, median follow-up was 26.3 years (range, 22.7 – 29.7 years). Of the 314 deaths, 262 were deemed to be related to breast cancer.
In the 362 patients with ER-positive tumors, tamoxifen was associated with a marginal reduction in mortality (hazard ratio [HR], 0.77; 95% CI, 0.58 – 1.03; P = .075) and a significant reduction in breast-cancer-related mortality (HR, 0.73; 95% CI, 0.53 – 0.99; P = .046).
In the 332 patients with ER-positive, PR-positive tumors, a significant beneficial effect was also seen. For cumulative mortality, the hazard ratio was 0.73 (95% CI, 0.54 – 0.98; P = .034), and for breast-cancer-related mortality, it was 0.70 (95% CI, 0.51 – 0.97; P = .30).
However, in the 153 patients with ER-negative, PR-negative tumors, no such beneficial mortality effects were seen.
Patients with ER-positive tumors who were younger than 40 years derived the most benefit from tamoxifen. For those patients, the hazard ratio for cumulative mortality was 0.45 (95% CI, 0.23 – 0.91), whereas for patients 40 years and older, it was 0.89 (95% CI, 0.65 – 1.23; interaction P = .061).
Results were similar for cumulative breast cancer-related mortality. For patients younger than 40 years, the hazard ratio was 0.37 (95% CI, 0.17 – 0.82), whereas for patients 40 years and older, it was 0.87 (95% CI, 0.61 – 1.22; interaction P = .044).
The researchers assessed the effect of tamoxifen at three different time periods in patients with ER-positive tumors: years 0 to 5, years 5 to 15, and beyond 15 years.
The hazard ratios for mortality and breast-cancer-related mortality increased to a peak at 6 years in both the tamoxifen and control groups, but declined thereafter.
Dr Mateusz Opyrchal
The data from this trial reflect data from other studies looking into adjuvant endocrine treatments, said Mateusz Opyrchal, MD, PhD, from the Roswell Park Cancer Institute in Buffalo, New York.
“Interestingly, we continue to see the effect of treatment even after 15 years of follow-up, demonstrating the difficulty in treating and studying breast cancer, as disease recurrence can happen many years and even decades after the initial diagnosis,” he told Medscape Medical News.
The researchers showed “that even shorter treatment with endocrine therapy is better than no treatment at all,” he pointed out. “These results will not affect the current guidelines, which recommend 5 to 10 years of adjuvant endocrine therapy, but they might help patients and their oncologists make informed decisions for women with relatively low-risk cancers who have intolerable toxicities from their endocrine therapies,” he said.
That just 2 years of tamoxifen shows a survival benefit “speaks quite a bit to the ability of tamoxifen to reduce breast-cancer-specific mortality,” noted Dr Soliman.
“The impact of these data right now is that we can probably counsel our patients that some tamoxifen is better than nothing, even if they are not able to hang in for the full 5- to 10-year period currently recommended. So, when patients ask us if a couple of years of tamoxifen is going to do anything for them, we can at least potentially point to this study and say there are some data that even 2 years is better than nothing, but it’s probably not ideal,” he said.
Good news! Everything is normal and no problems. I was in and out of Jefferson Imaging Center in an hour which is the fastest ever, even though they did have to take more images after the first round. That has happened before, so I try not to panic. Luckily all is well and next year I have an appointment for Monday, May 8, my birthday!
I encourage all women of a certain age to get annual mammograms which help find cancer at early stages. I am so glad I have been going and they can compare one year to the next.
Lately I have been getting up in the middle of the night. Nothing is really on my mind- nothing that I wake up thinking about. I am just up. Anywhere between 3- 5 AM. Unusual for me. I am a sleeper and, though I do not go to bed early, I like to sleep late. Finally this week, I realized that my anxiety (which is what wakes me up between 3- 5 AM) is about the annual mammogram I have scheduled for May 6.
Mammograms are always a scary thing. If one in 7 women gets breast cancer, you look around the waiting room and count out. Well, in 2012 I was the one in seven. On May 25, 2012 in a routine annual mammogram, I was told to get a biopsy to check a shadow that was not there the year before. On May 30 I had a biopsy and on June 4, I was told she had invasive lobular carcinoma. I got two opinions and July 11 had surgery with Dr Dahlia Sataloff at Pennsylvania Hospital.
This is the fourth year since my diagnosis and treatment for lobular cancer in my right breast. I had radiation for 8 weeks at Lankenau Hospital with Dr Marisa Weiss after surgery. My oncologist is Dr David Mintzer at Pennsylvania Hospital. I am on Tamoxifen.
May is my check up month and I have appointments later in the month with Drs Sataloff and Mintzer. Last year was smooth sailing- No extra pictures, no sonogram, no changes!!
No doubt that I am nervous about the test. My body tells me so by waking me up. But mammograms save lives, find cancer early and are necessary for good health. I just hope all is well and they find nothing. Then I can sleep through the night for another year!
This morning I saw Philadelphia native and award-winning photographer Bill Aron discusses his latest book, which celebrates the will to live and triumph over cancer. New Beginnings: The Triumphs of 120 Cancer Survivors follows 120 men, women, and children who vary in age, ethnicity, and diagnosis, but who all decided that the words “you have cancer” were the start of a new beginning, not an end to their lives. The book is a project by and for cancer survivors: their words, Aron’s photographs.
When I got the email about the program from the Gershman Y, I emailed Bill and asked if he was the Billy Aron whom I knew in the mid 60’s. Sure enough he was at Penn when I was at Temple and we hung around with the same crowd for several years. He showed slides of the images in the book and told highlights of stories that were both touching and inspiring. I bought the book and look forward to reading it cover to cover.
Here is a history of the pink ribbon:
From the beginning, the pink ribbon connoting breast cancer awareness has been embroiled in controversy. Today, some members of the movement wear it proudly, giving thanks for both the symbol and its attendant charity-dollar largesse. Others hate it with a passion. But to much of the media and the world at large, the ribbon is the breast cancer movement. Where did the ribbon come from, where is it going, and what has it meant along the way?
The merging of the ribbon and symbolism in this country came about in two huge leaps. The first occurred in 1979, the year that Penney Laingen, wife of a hostage who’d been taken in Iran, was inspired by song to tie yellow ribbons around the trees in her front yard. The ribbon, Americans were told on the nightly news, signaled her desire to see her husband home again. For the first time, ribbon became medium, ribbon became message. Yellow ribbons sprouted up across the country in solidarity. That was step one.
Step two occurred 11 years later, when AIDS activists looked at the yellow ribbons that had been resurrected for soldiers fighting the Gulf War and said, “What about something for our boys dying here at home?” The activist art group Visual AIDS turned the ribbon bright red—“because it’s the color of passion”—looped it, spruced it up and sent it onto the national stage during the Tony awards, photogenically pinned to the chest of actor Jeremy Irons.
Ribbons had arrived. Overnight, every charitable cause had to have one. After just a short time, they were so ubiquitous that The New York Times declared 1992 “The Year of the Ribbon.”
The stage was set for the evolution of the breast cancer ribbon.
First on the scene was the Susan G. Komen Breast Cancer Foundation. Komen had been handing out bright pink visors to breast cancer survivors running in its Race for the Cure since late 1990. In fall 1991, mere months after Irons’ electrifying appearance, the foundation gave out pink ribbons to every participant in its New York City race. This first use of the ribbon, though, was for Komen just a detail in the larger and more important story of the race. To really break out, the pink ribbon would need a situation in which the ribbon was the event.
And it didn’t take long for that situation to arrive. Early in 1992, Alexandra Penney, then the editor in chief of Self, was busy designing the magazine’s second annual Breast Cancer Awareness Month issue. The previous year’s effort, inspired and guest edited by Evelyn Lauder—Estée Lauder senior corporate vice president and a breast cancer survivor—had been a huge hit. The question was, how to do it again and even better. Then Penney had a flash of inspiration—she would create a ribbon, and enlist the cosmetics giant to distribute it in New York City stores. Evelyn Lauder went her one better: She promised to put the ribbon on cosmetics counters across the country.
Penney recalls the birth of the ribbon now from her office at Ziff-Davis. “You know how it is when things are in the air,” Penney says.
“A week later Liz Smith wrote about a woman who was already doing a peach-colored ribbon for breast cancer.” The woman was 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. Her peach-colored loops were handmade in her dining room. Each set of five came with a card saying: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.”
Haley was strictly grassroots, handing the cards out at the local supermarket and writing prominent women, everyone from former First Ladies to Dear Abby. Her message spread by word of mouth. By the time Liz Smith printed her phone number, Haley had distributed thousands.
Then Self magazine called.
“We said, ‘We want to go in with you on this, we’ll give you national attention, there’s nothing in it for us,” Penney says. Even five years later, her voice still sounds startled by Haley’s answer. “She wanted nothing to do with us. Said we were too commercial.”
At the end of September 1992, Liz Smith printed a follow-up to Haley’s story. She reported that Estee Lauder had experienced “problems” trying to work with Haley, and quoted the activist claiming that Self had asked her to relinquish the concept of the ribbon. “We didn’t want to crowd her,” Penney says. “But we really wanted to do a ribbon. We asked our lawyers and they said, ‘ Come up with another color.”
They chose pink.
There are many choices to be made after you decide “pink ribbon.” According to C.M. Offray and Son, the largest ribbon-makers in the world (they supply the ribbon on which Olympic medals are hung), ribbons come in three basic styles: woven, grosgrain and craft, each with its own variations. Given the plethora of decisions that had to be made in designing October’s surprise, it’s startling that hue wasn’t one of them.
“There are so many different shades, but it would have been our ‘150 pink’—basic, standard pink,” says Ellie Schneider, vice president of publicity and public relations for Offray, when the ribbon is mentioned. “It’s pretty, a pastel pink without being too washed-out or powdery-looking. It’s one of our best-selling colors. It’s been in our line forever.”
Because Estée Lauder and its corporate philanthropy, the Breast Cancer Research Foundation, did not respond to repeated requests for interviews, we don’t know who exactly ordered the 150 pink in grosgrain. Penney recalls only that Estée Lauder made all the manufacturing choices, leaving her to publicize the promotion and edit the accompanying issue of her magazine.
What we do know is that because of Haley’s ribbon, Self and Estée Lauder had traded in a color that was merely peachy for one that was an icon, a semiotic superstar.
“Pink is the quintessential female color,” says Margaret Welch, director of the Color Association of the United States. “The profile on pink is playful, life-affirming. We have studies as to its calming effect, its quieting effect, its lessening of stress. [Pastel pink] is a shade known to be health-giving; that’s why we have expressions like ‘in the pink.’ You can’t say a bad thing about it.” Pink is, in other words, everything cancer notably is not.
NABCO’s executive director, Amy Langer, told The New York Times Magazine in 1996 that breast cancer, unlike other health threats to women, was “loaded”: “It’s about body image, it’s about nurturing—it’s certainly about femininity,” she was quoted as saying. For women who feel this way, who experience cancer as predominantly a loss of womanhood, what better color to pin on than pink—girlie, pretty, healthy pink?
In fall 1992, Estée Lauder makeup counters handed out 1.5 million ribbons, each accompanied by a laminated card describing a proper breast self-exam. They collected over 200,000 pink ribbon petitions urging the White House to push for increased funding for research.
Within a year, Charlotte Haley’s loop of peach ribbon was history.
At the same time that the pink ribbon was becoming a national symbol, a sea change was taking place in American boardrooms. Beginning in the mid-1980s, the corporate world was discovering cause-related marketing. Carol Cone, founder of Cone Communications, was a major force in this development. Research underwritten by her small Boston-based public relations firm proved that, given the same cost and quality, more than half of consumers would switch from a particular store or brand to one associated with a good cause. Armed with this data, Carol Cone set out to teach America how to do well by doing good. In the late ’80s, she engineered Reebok’s successful adoption of the human rights issue. And in 1993, she set about helping Avon cosmetics stake out a claim on breast cancer.
“The challenge for Avon at the time was creating a unique program,” Cone says. By her count, there were already 15 medium-to-large companies, including fellow cosmetics titan Estée Lauder, involved with this issue. Avon’s new campaign would have to push away from that pack but hold tight to the signifiers of breast cancer.
The fulcrum that made this maneuver possible was the pink ribbon. About two inches long, the original Avon pink ribbon is a weighty and formidable piece of jewelry, half pink enamel and half gold cast, winced in the middle by a flowering gold rose. It—and a smaller, more circumspect lapel pin, developed so men would feel comfortable wearing the symbol—retails for $2. The pink signaled breast cancer, but the addition of the color gold and the rose are distinctly Avon. In its first two years, the pin raised $10 million. Aprés pink pin, lé deluge.
In 1993, the October after Avon’s launch, Estée Lauder introduced a heart-shaped compact with an enameled pink ribbon design, profits to go to its Breast Cancer Research Fund. The Susan G. Komen Foundation began offering a pink rhinestone brooch. Carolee Jewelry designed another one—a female runner in midstride, flowing loop ribbon in hand. Nightshirts, angel statuettes, teddy bears, sports clothes, credit cards, Daytimers all hit the market and, with increasing speed, other companies joined in, each offering its own version of the traditional ribbon. December 1996 found the New York Times Magazine labeling breast cancer “this year’s hot charity.”
“Today there are 80 to 100 companies involved, and that’s only the ones big enough to get on your radar screen,” Cone says. Without pausing, she casually prognosticates about “the next 100 companies to get involved with breast cancer.”
She and the Times agree on the source of the disease’s peculiar popularity in corporate America. It is a quality that the breast cancer awareness ribbon both captures and enables. “Companies want to support breast cancer,” Cone says simply. “Breast cancer is safe.”
Unlike AIDS, breast cancer is free of what companies euphemistically call “lifestyle issues.” And, perhaps as importantly, breast cancer provides charitable credentials for what can be a very small investment. With the ribbon’s message of ”awareness” translating most often into a familiarity with early detection techniques, all a company has to do, to do good, is put a ribbon on its merchandise.
New Balance, for example, donates money from the sale of its Race for the Cure caps, socks and T-shirts to the Komen Foundation, but its pink ribbon sneakers, a Foundation spokesperson says, are ”just for awareness.” The sneakers have the tiny pale-pink outline of a ribbon sewn onto the corner of their tongues—difficult if not impossible for anyone except the owner to see. The possibility that those two wan loops might remind woman to get the mammogram that saves her life, however, provides the sneakers with their raison d’étre.
It is this dynamic that drives the pink ribbon’s detractors to distraction. “There is a value to awareness, but awareness of what, and to what end?” asks Barbara Brenner, activist and executive director of Breast Cancer Action (BCA) in San Francisco. “We need changes in the direction the research is going, we need access to care—beyond mammograms—we need to know what is causing the disease, and we need a cure. The pink ribbon is not indicative of any of that.”
Of course, not everyone in the breast cancer movement thinks that commercial benefit is bad. “Avon has used the symbol to touch people’s hearts and put money back into the cause,” says Beverly Baker, executive director of the Mautner Project for Lesbians with Cancer, which receives pink ribbon funding. “I certainly wouldn’t take issue with that.”
Between 1991 and 1996, federal funding for breast cancer research increased nearly fourfold to over $550 million. And according to the American Cancer Society, the percentage of women getting annual mammograms and clinical breast exams has more than doubled over the last decade. While the Komen Foundation lost out on patenting the ribbon, it has collected millions from companies that use it and donate the proceeds. Avon, which has raised $25 million purely from merchandise, is today the largest private funder of community-based nonprofit breast cancer programs.
But signs abound that the reign of today’s ribbon is waning. When the fashion industry took on breast cancer, they made their own symbol, a blue bull’s eye, which is now in six countries. Groups on the West Coast substitute the more “powerful” purple loop. In Canada, BCA Ottawa has turned the loop upside down, for the tears shed at diagnosis and lined it with black, to remember women who have died. San Francisco’s BCA has a white-on-black button that reads “Cancer Sucks.”
For those who, like Barbara Brenner, see the pink ribbon as a red herring—and the 44,000 women dying of breast cancer each year can ill afford the distraction—the decline of the pink ribbon comes none too soon. “We have to question our willingness as cancer organizations to get into bed with people whose ultimate goal is profit, not health,” Brenner says. And her point—that corporate benevolence is linked with the appearance of care rather than active solutions—is supported by history. After all, homelessness was the darling corporate cause once, in the years before welfare reform.
Reprinted from MAMM, June/July 1998
May is the 3rd anniversary of my discovering I have breast cancer so I end up having my annual check up and mammogram in May. Nervous time as you can well imagine!! I finished my mammogram, seeing Dr. Dahlia Sataloff, my surgeon and Dr. David Mintzer, my medical oncologist. Luckily, everything is okay. My mammogram was the same as last year- no change is very good!! All doctors are happy and so am I.
I urge everyone to get a baseline mammogram if you have never had one and get annual check ups and mammograms. Early detection helped me to discover a lobular invasive tumor that was small enough that I did not need chemotherapy but just a lumpectomy and radiation. I am taking Tamoxifen for the recommended 5 years.
Now I try not to think about it for another year!