Beliefs are hard to change and some are deadly
One belief that continues to snake through our society and is claiming thousands of lives every year is that young women don’t get breast cancer.
Nothing could be farther from the truth.
Young women are diagnosed every day! Women in their 20’s and 30’s and early 40’s. At The Rose, we’ve diagnosed a 19-year-old. Annually over 2,500 young women turn to us for care, half of those are uninsured.
While I can half-way understand how that belief got started and continues to circulate, bad ideas and false information have a way of doing that; I can’t for the life of me understand why we haven’t put it to rest.
Long ago, I lost count of the number of young women who have said to me: But I’m too young for a mammogram, how can I have breast cancer?
They are correct. Every one of them was too young to have a SCREENING mammogram.
Young women need more than a routine screening; they need a full diagnostic workup with a physician present. Screening mammograms are just that—screeners!
I sincerely believe the recommendations about when a woman should start having screening is a major culprit in the misunderstanding of who can and cannot be diagnosed with breast cancer. Somehow our society has come to associate the chance of being diagnosed with breast cancer with the time a woman is old enough to have annual screenings.
It is one more myth associated with breast cancer—right up there with ‘I have no family history, so I won’t get breast cancer.’ Or ‘My breasts are too small for breast cancer.’ Or ‘My lump isn’t painful, so it can’t be breast cancer.’ And the most incorrect one: ‘Young women don’t get breast cancer.’
There’s always some controversy about mammography. How often should women have them—every year or every other year? What age to start annual screening — 40, 45, 50? How efficient is mammography— which is such a bogus concept when the mortality rate has dropped 40% since mammography was first introduced! All add to the confusion and unfortunately are more distractions dictating women’s health.
What I wish we talked more about is how many women, young and old, are being diagnosed!
In 1987, when Dr. Dixie Melillo started The Rose’s first breast cancer support group, a young woman who was only 32 years old was at our initial meeting. I’ll never forget how stunningly beautiful she was nor how angry. She had been diagnosed at age 29, had gone through a mastectomy for one breast, barely survived a long series of chemotherapy, still wore a wig, and was outraged.
She needed a mammogram on her remaining breast and when she arrived at the mammography facility she was turned away — because she was too young for a mammogram! She was quick to tell the receptionist — with words we best omit — she may be too young for a mammogram but she sure as heck wasn’t too young to have breast cancer! She turned on her heels and stomped out. Her search for another mammography center led her to The Rose and our group.
Teresa wasn’t the only young woman in our group; there was a 35-year-old school teacher and a 26-year-old mother of two little boys who only made it to one meeting. Her cancer was too aggressive and we knew she would never live long enough to raise those boys.
In 2005, The Rose started a Young Women’s Clinic. We devoted every Friday to appointments for women under 40. We offered instruction in breast self-examination and a full diagnostic workup, mammography and ultrasound, as well as a physician’s clinical breast examination. It was a novel idea, ahead of its time but the sad truth was we were always booked out for weeks and had too many young women waiting for their Friday appointment to come around. After five years, we had to find a way to incorporate young women into our daily schedule—not once a week but daily.
At the same time when we were diagnosing so many young women, Dr. Janet Hoagland started a special support group for women under 40. With Janet facilitating the meetings, discussions dealt with the unique issues a young woman faces: wondering if she’ll ever feel like dating or be able to have children or live long enough to raise those she already had. It was called the Knockout Roses because as one member said: “All the women in that group were knock out gorgeous and everyone knows that Knockout Roses are a hardy breed and can survive most anything.”
Six of those precious women attended Janet’s memorial service a few months ago. Six women, all diagnosed way too young, who knew how lucky they were to be alive.
Young women who are diagnosed with breast cancer isn’t some new phenomenon or a trend or some kind of blip in the statistical occurrences that can be argued away.
It’s real and the increase in the number of young women over the past decade is alarming.
I often wonder why there is a tendency to lean too much on statistics and not enough on what is going on right under our noses. Statistically, young women have a lower rate of being diagnosed than older women. Therefore the rationale goes along the line of ‘No need to alarm young women when their risk, compared to women in their sixties, is substantially lower.’
But isn’t that another part of the problem? The usual dismissal—patronizing responses that women have heard all their lives—especially when something out of the ordinary is going on with their bodies. “Don’t worry your little head about that lump; it will go away with your next period.” “It’s probably only a fibrocystic condition.” “All young women have lumpy breasts.” “That red spot on your breast is simply dermatitis.” But without a doubt, the most dangerous response is: “You’re too young.”
If statistics drive the handling of young women and breast cancer, then what we should talk about is the number of years of life lost when a young woman is diagnosed. Or how much more aggressive her cancer is compared to older women. Or how much sicker she’ll be because of the need for more intense treatment—especially if diagnosed late—and the incredible financial burden it will be on her and her family. If she makes it into remission, her chances for recurrence and dying from the disease are so much higher than an older woman.
I think it’s time to be an alarmist. Time to talk openly about young women and breast cancer.
It’s true the statistics won’t back me up. But let me introduce you to the 30-year-old who was told to use a topical ointment for ten months for the red spot on her breast; we diagnosed her with inflammatory breast cancer. Another non-statistic is the 38-year-old who was diagnosed one day before she delivered her 4th child. We could include the triathlon competitor, age 32, and life-long runner age, 36, who were both diagnosed with stage 4 disease.
These cases are not antidotal. Last year, half of the 388 women we diagnosed were under 50 years old and half of those were under age 40. I think 25% of any population is pretty darn significant.
There was a time when breast cancer was the disease of our grandmothers or older aunts, not young mothers or women barely out of their teens.
That time is long gone.
Message to young women: Nearly 80% of young women diagnosed with breast cancer found the abnormality themselves. An estimated 30% or more of all breast cancer in young women is diagnosed in the few years after a woman has had a baby. If you notice a change in your breast, have a family history, see an unusual skin condition, or have any persistent lump in your breast, talk to your physician or clinic service provider. Ask for a referral for a diagnostic workup. It’s your life.