Friday, October 3, 2014

Young Women and BC

I originally wrote this piece for my magazine, Tri-County Woman, back in 2005 while I was still dealing with reconstruction issues and the like. But while nine years have clicked off the calendar, not much has changed statistically with BC - and since it is once again BC Awareness month (which always makes me laugh; who the heck isn't aware of breast cancer?), it seemed a good time to dust it off and print it again.

This was originally called "The New Face of Breast Cancer," but too many women have died since I first penned that title and so many more are running out of treatment options, so it seemed like a title change was most necessary.


Imagine being told by your doctor that you may have breast cancer.
Now imagine being a recent college graduate in your 20’s, a 30-something mother with children in grade school or a 40-year-old pre-menopausal woman hearing those same words.

Since October is Breast Cancer Awareness month, you’ve probably seen the statistics: according to the American Cancer Society, about 175,000 American women will be diagnosed with breast cancer before the year is done. Most of them will be well into menopause and over the age of 50. Women who haven’t quite reached their fifth decade are sometimes told they are “too young” to get the disease when they notice lumps or other changes in their breasts.
But too young they aren’t. The Young Survival Coalition – an organization that provides treatment and other information to women 40 and under living with breast cancer – says the disease is the leading cause of cancer death for women age 15 to 40. The coalition estimates that there are about 250,000 pre-menopausal women in the United States currently living with the disease. Eleven thousand women under 40 will be newly diagnosed this year alone, and, sadly, about 1,300 of them will die from the disease.

 New York women are far from immune. The state Department of Health estimates that close to 6.5% of the 12,000 women (about 800) who heard the words “You have breast cancer” recently were between 20 and 40 years of age. And according to the state’s cancer registry, an average of 12.2 of every 100,000 women under age 40 were diagnosed with breast cancer in Orange County annually between 1998 and 2002, while Dutchess and Ulster counties averaged 11 and six women respectively during the same period. (The rates are based on fewer than four reported cases per year.)

“I live on Long Island and it seems to be everywhere,” says Jill, a 34-yrear-old stay-at-home mom who was diagnosed with breast cancer earlier this year. “It shocks me that there are so many young women now that are being diagnosed.”

The Mammography Question
Because they can pick up cancerous growths smaller than the head of a pin, mammograms – low-density x-rays of the breast tissue – have been the standard for early detection of breast cancer for the last 40 years. But since the American Cancer Society recommends mammograms begin at age 40, many pre-menopausal women with breast cancer may not even know they have it. While studies show that mammograms are more beneficial to women over 50, they are often not recommended to women under 40 because younger women’s breast tissue is often fibrous (which makes the film hard to read and small tumors difficult to find).

“Mammography is of limited use if the breast tissue is dense,” says Dr. Cecilia M. Brennecke, a radiologist and medical director at Johns Hopkins in Maryland, “but there’s no way to know how dense your breasts are until you’ve had a mammogram.”

Digital mammography, which uses a computer-aided detection program instead of x-ray film, can make it easier to examine dense tissue because the image can be enlarged or highlighted, is an option, but it is more expensive than traditional mammography and some insurance companies simply won’t pay for it. Other diagnostic techniques, such as the 3-D image creating Digital Tomosynthesis, are not yet widely available and only used currently for research purposes.

“I think that’s ridiculous,” says Holly from Kentucky, who was diagnosed at 27. “I understand the problem of trying to detect breast cancer in young women using mammograms, but there has to be some other way. There needs to be some other way.”

Dr. Susan Orel, a radiologist and professor at the University of Pennsylvania’s Medical Center in Philadelphia, says that she routinely recommends mammograms for women with multiple cysts, but many women don’t get the same advice.

“I had been going to the doctor for about three years asking questions and was always told I was fine and I had scar tissue left over from previous recurring [infection],” says Kim from Canada, who was 37 when she was diagnosed with Stage III breast cancer. “I had to insist on a mammogram. I feel angry that it wouldn’t have gone this far if they had checked and found it earlier.”

“The bottom line is that if a woman feels there is something wrong with her breast and the test comes back showing that everything is normal, she needs to take things a step further,” Dr. Brennecke says. “Women, particularly those under age 40 and not having routine screenings, should be very aware of how their breasts feel and if they don’t feel right, they should bring it to their doctor’s attention.”

Different Concerns 
Once breast cancer is diagnosed, breast cancer treatment often includes chemotherapy and/or hormone therapy. Both treatments can affect a young woman’s ability to have children – a worry that older women don’t usually have.

“When I was diagnosed, my husband and I had just begun to start planning for a family,” says Tracy from New Jersey, who was 27 when she found a lump in her breast. She had the lump removed, underwent radiation and was given the anti-estrogen drug, Tamoxifen, to help reduce the risk of recurrence by blocking estrogen reception. But the drug stopped her periods, which put having a baby on hold.

“After a year of Tamoxifen, I decided that it was time. All of my doctors were supportive and gave me the go ahead,” she says. Her son, Zachary, was born in 2002 and Tracy has been cancer-free for five years.

“Hearing ‘You have breast cancer’ is totally shocking, but even more shocking when you are young and thinking you have your whole life in front of you,” Holly adds. “I was not ready to die and I vowed to do all I could to stay alive and fight this wicked disease, but I was disappointed to find that most information on breast cancer was for post-menopausal women [and that] lead me to believe that there was no hope for me.”

For Tasha, a single-mother from Chicago who was 32 when she was diagnosed, the biggest shock came when she realized she might not be able to do what she had been doing for most of her adult life: take care of herself. “My mother has had to move in with me. I never thought my 55-year-old mother would be taking care of me. It should be the other way around,” she says. “I have a young son, a mortgage, a rose garden. Who will be around to take care of my son, my house and my roses if I don’t make it?”

Affected and Effected 
Treatment, while tough on the body, can also be tough emotionally – to both the patient as well as her loved ones.
Although her husband, who is a C.P.A., always put on a brave front for Julie from Connecticut, friends told her that he would sometimes cry between clients after her diagnosis last December at age 37. “He would see them come in as a couple and they’d talk about their retirement funds, IRA’s, etc. He would think about us and wonder ‘Will we retire together someday?’ Cancer doesn’t just affect the patient, it affects the whole family,” she says.
“It sucks to get cancer so young. It sucks to lose your hair, breasts and period all before you turn 28,” says Beth from Long Island, who was diagnosed at 26 and had a double mastectomy. For her, support came from folks she met on-line at both the Young Survival Coalition and websites. “But you can endure and you do get through and we all will come out of this on the other side, especially since we have each other in the fight with us.”

For more information about young women and breast cancer:

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