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It was just an itch. A patch of dry skin near the nipple of her left breast, nothing more. In fact, you couldn’t even see it. Probably eczema. Probably not even that. Just nothing.
Frankly, Mary French Dubuisson forgot about it. At 44, she was meticulous about her mammograms—which she had just had—because she was large breasted and had a few benign fibrocystic lumps. Living in Laredo, Texas, hot as it was, what woman didn’t have heat rashes?
A few months later, Mary had run out of lotions and creams. And a new stabbing pain, right through the middle of her breast had appeared.
“Even back in 2000, there was enough information on the Internet to reassure me that my symptoms were no different than my fibrocystic breast aches and pains. And, besides, it was December, a busy time and I ignored it,” she recalls.
By February, 2001, she grew concerned. The skin on her breast had become sensitive to the touch. Any touch. “I even caught myself tucking a tissue between my bra and breast.” But, there was no rash, no harbinger of darker diagnoses like puckering of the skin. “There was nothing at all to even examine. Nothing.”
Mary scheduled an appointment with her ob/gyn and meanwhile hit the Web once more. None of her symptoms fit the breast cancer guidelines at all. She had no bleeding or inverted nipple, no new or hard, painless masses. What she did have was increasingly painful lightening bolts through the breast and, suddenly, “the day of the appointment, a thickening sensation, a slight hardening of the entire breast.”
Her ob/gyn barely had a chance to ask her what brought her in that day, when she opened her gown. “From across the room, without even examining me, he saw it and asked how long my breast had been inflamed.”
Mary’s ob/gyn sent her straight to a surgical consult.
“That Monday night, I changed the keywords I put in to the Web. Instead of ‘breast cancer’ I put in ‘inflamed breast’ and a whole world opened up, like a secret door. And the information was frightening.”
The next morning, Mary had a biopsy and a preliminary diagnosis of inflammatory breast cancer, called simply “inflammatory” by patients. She also had an appointment with an oncologist, and a second opinion scheduled.
By Wednesday she had body scans in search of metastasis and by Thursday, a surgically implanted port catheter for the chemotherapy that she began on Friday.
In a matter of weeks, Mary had gone from an itch to a 50-50 shot at survival.
Inflammatory breast cancer is one of the rare breeds, even among breast cancer strains, making up 1 to 4 percent of all breast cancers. And, until a Seattle news station ran a hard-hitting story on IBC that prompted millions of women to email the news link to millions of friends, few people had ever heard of it.
“It’s not truly a silent disease, but it’s often confused with mastitis, infection of the breast,” says breast surgical oncologist Dr. Emily Robinson, an associate professor of surgery at The University of Texas Medical School at Houston and medical director of Memorial Hermann-Texas Medical Center Cancer Center. “Symptoms are often ignored because they can mimic insect bites or breast infections that women get while nursing. The tip-off comes after symptoms don’t respond to a couple of courses of antibiotics or topical creams.”
Symptoms also aren’t the standard warning signs that women have grown familiar with. And, they can come on relatively suddenly—over weeks or even days:
Contrast IBC symptoms with more mainstream symptoms:
With symptoms that involve changes in the breast skin, a woman’s dermatologist may be the first appointment she makes. And often, physicians in specialties other than gynecology or oncology may have never seen a case.
“It’s no wonder that IBC patients are so shocked to find out we have cancer,” Mary says. “Nowhere in the old, standard literature, the earlier websites, the breast cancer organizations and guidelines did it list ‘itchy nipples’ or ‘dry skin.’”
Mary never missed her yearly mammogram or ultrasound, nor ever received a poor report. “I now know that neither of those tests would have been reliable in picking this up. There’s no mass to find.”
Robinson agrees, adding that punch biopsy and MRI are more reliable methods of detection. The one advantage of ultrasound is that it may pick up the tissue thickening that comes from IBC’s unusual manifestation of “sheets or layers of cancer, instead of lumps.”
The “sheets” of cancer that blanket the breast tissue develop from cancer cells clogging the breast’s lymph vessels. “Which is what gives you that heavy, feverish sensation,” she explains. The breast may feel full or swollen, like that of a nursing mother.
Inflammatory breast cancer tends to be diagnosed at younger ages, around 57 compared to 62 years of age for all breast cancers combined. African Americans are at higher risk than Caucasians and tend to be diagnosed around the age of 50. And, though it can occur in men— about 1 in every 140 cases of male breast cancer—it usually occurs in men at an older onset age than women.
Mary had a bit of luck on her side: her cancer hadn’t spread past the breast, it was not estrogen-receptive and her second-opinion “was a female physician who had had breast cancer.” She also lived in a small town where everyone knew everybody. “So, my surgeon made my wig appointment and my oncologist slid me into a closed clinical trial—that, hey, I’m still here, so it must have worked.”
The treatment regimen was challenging: eight weekly chemotherapy treatments, then a double mastectomy, then eight more treatments, followed by a full month of daily radiation. The treatment schedule ended in a grand finale of six months of herceptin, the then experimental drug her doctor had arranged.
“Yet, I never missed a day of work since my boss and my nausea meds were both fabulous,” she laughs. “I was fatigued with the radiation, but, I was a mom of two teenagers, so who knew any better?”
Ironically, IBC has one thing going for it that other cancers don’t: you can see the response. “Because my blood levels were good, they hit me with massive doses of chemo. After two treatments, my breasts looked and felt normal. I could see that the treatments were working. It gave me a huge psychological boost,” Mary recalls.
It also made the looming loss of both breasts crushing. “They looked fine, back to normal. And now I had to lose, not one, but both.”
Though cancer was found in one breast only, Mary was strongly advised to have a double mastectomy. “This isn’t your normal breast cancer—if there is such a word,” Mary says. She was advised that since IBC infiltrates the layers of skin attached to the breast, it was likely that it could surface in the other breast, since the skin is one, continuous organ. “I was told not to even consider reconstruction for five years.”
’ When it came to survival, “I never thought in terms of five years. Or one year. Odds of beating this were less than 50 percent, period,” Mary says. “And, back in 2001, what little information there was on the Web was so negative, it just made you want to give up.”
“It’s sobering,” says Robinson, who sees all forms of breast cancer. “About 30 to 40 percent remain cancer-free for five to 15 years.” For some reason, IBC is a more aggressive disease, as breast cancers in younger women tend to be. “Stage for stage, non-inflammatory versus inflammatory, the survival rate is about half. For every 44 non-inflammatory breast cancer survivors, there will be 26 IBC survivals,” Robinson says.
Mary chose to look at her life, not in five-year futures, but in the present tense. And “tense” was the operative word.
“I know everyone says this, but my diagnosis couldn’t have come at a worse time for my children,” she says. Her daughter was a senior in high school, looking forward to a whirlwind mother-daughter experience preparing for prom, graduation and her freshman year at Texas A&M. Her son was a sophomore at the university and unable to be physically present for his mom’s treatments.
“That summer, I was determined that my cancer treatments were not going to be what my children remembered about me.” Mary recalls. “So, we shopped for prom, went to A&M Parent’s Weekend, we stayed in the dorms and trekked across campus. I did it all!”
To this day, Mary’s husband Jimmy is the one person she credits for keeping her sane, healthy and…here. It was his particular brand of therapy.
“When I really needed to talk, I’d call my husband and we’d meet at Burger King. We couldn’t speak openly at home because we were expending so much energy being ‘normal’ around the kids and protecting my mom who had moved in to help me,” Mary says.
On one particularly desperate day, Mary says she just knew that this rare disease would take her life. This was the most grueling part of the experience, she remembers, knowing exactly how she would die.
“My husband took my hand and asked me, what then would I like to do? Just name it, he said, ‘Travel around the world?’
“And I cried and told him that I just wanted to go back home, and wash the dishes, complain about washing them and then pay bills and complain about those, too. I just wanted to be normal.”
It has taken Mary three of the past five years to go a whole day without thinking about cancer. This month, right at her five-year marker, coincidentally, she finds herself giving this interview.
“I’m also thinking about looking into reconstruction,” she says. “It’s time.”
UPDATED: 10-18-2006
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Dr. Emily Robinson is an associate professor of surgery at the UT Medical School.
Make an appointment
with your stress—
and keep it!
Set aside a specified time of day, say 3:00 to 3:20 P.M. Keep this appointment with yourself—make it as important as a client or a child’s reading time.
Now, let the stress pour out of you, all the worry, guilt, what-ifs, if-onlys. Hold nothing back. Imagine every possible scenario that intrudes on you, day and night. Funnel it into that 20-minute period.
When the bell goes off, you are done, finished, until your next appointment with yourself.
When you’re tempted to let stressful thoughts crawl across your mind, remind yourself that you have 20 minutes to address them—tomorrow.
