Making Decisions About Breast Cancer Surgery, Insight, Fall 2014

Published in the Fall 2014 issue of LBBC's national newsletter, Insight

Not all people have a choice when it comes to breast cancer surgery. If you do, many factors, such as lifestyle, concern about the cancer returning, and how your breasts affect your body image are likely to guide your decision. Sarah James, of Philadelphia, was diagnosed at age 38.

“When I found out I had breast cancer, I decided to do the minimal amount of surgery [needed] to give the doctors the information they [required], because my life was so complicated with the stress of diagnosis, working and being a mom,” Sarah says.

Sarah first chose to have breast conservation, also called lumpectomy. In lumpectomy, cancerous tissue and a small amount of healthy tissue around it is removed from the breast. It is most often followed by radiation therapy.

Not everyone can have lumpectomy. In general, the tumor needs to be small, less than 5 centimeters across, and be in only one area of the breast. Sometimes, full-body treatment before surgery can shrink larger tumors for lumpectomy.

Mastectomy is another surgical option. In a unilateral mastectomy, or single mastectomy, the breast with cancer is removed. In a bilateral mastectomy, or double mastectomy, both breasts are removed. Removal of the healthy breast is prophylactic, or preventive, because it does not contain cancer.

Bert M. Petersen, Jr., MD, FACS, chief of breast surgery and breast cancer programs at St. Barnabas Hospital, in Bronx, New York, suggests these be among the questions you ask your doctor about surgical options:

• Are lumpectomy and mastectomy both possible?
• If mastectomy is the only option, could treatment before surgery shrink the tumor so I can have lumpectomy?
• What are my chances of recurrence with lumpectomy, with or without radiation therapy, versus mastectomy?

Beyond the Medical

When you have a choice, non-medical factors such as your age, lifestyle and comfort level come into play.

Lumpectomy removes the least amount of breast tissue, making complications less likely and recovery often faster. If your breasts are essential to your feelings of femininity, lumpectomy may appeal to you.

On the other hand, you may worry about having too much tissue left behind because of the possible risk of cancer coming back. Or maybe you want or need to avoid the 5 to 7 weeks of radiation therapy usually required after lumpectomy. These are some reasons you might choose mastectomy. Talk with your doctor about your risk for recurrence in the same breast if you choose lumpectomy and radiation versus lumpectomy alone. Your providers should be able to help you understand what studies show about people who had a similar choice.

Dr. Petersen has recently seen more people, especially young people, choosing to remove both breasts, not just the one containing the cancer. He believes women often choose a prophylactic double mastectomy because they think it will greatly lower their risk of the disease returning.

Dr. Petersen’s observation has been seen in research. A 2007 study found that prophylactic double mastectomy more than doubled in the United States from 1998 to 2003. Another study found that from 2003 to 2010, the rate of prophylactic double mastectomy went from 4.1 to 9.7 percent in all women and from 9.3 to 26.4 percent in women 45 or younger. More recent research suggests that women under age 40 with early, non-BRCA related disease have an increased risk of 2 to 4 percent of developing a new cancer in the opposite breast.

Still, each woman’s experience is different. Talk to your doctors about all ways to reduce your personal risk for recurrence, such as medicine or lifestyle changes.

Shoshana Rosenberg, ScD, MPH, an epidemiologist and instructor in the department of medical oncology at the Dana-Farber Cancer Institute, in Boston, has done much research focusing on women age 40 and under who develop breast cancer. She says that younger women have unique interests that affect their decisions.

“They have career concerns … They might be concerned about fertility. They might have young children at home,” Dr. Rosenberg says. “So the factors that are going into their decision might be different than a breast cancer patient who’s in their 60s or older.”

Genetic Risks

Prophylactic double mastectomy has gained more attention since actress Angelina Jolie announced in 2013 that she had the surgery after genetic testing confirmed she carries a BRCA1 mutation.

A BRCA mutation is an inherited trait that increases a person’s risk of getting breast and ovarian cancer. Because BRCA mutations increase by 45 to 85 percent the chance of developing breast cancer by age 70, a prophylactic double mastectomy is usually recommended if you have this type of mutation.

A few years after her lumpectomy, Sarah had genetic testing and learned that she carries the BRCA2 mutation. She eventually decided to have a double mastectomy and reconstruction.

Because she would have considered prophylactic mastectomy earlier had she known about the BRCA mutation, Sarah recommends looking into genetic testing before making a surgical decision. If your doctors do not speak with you about genetic testing, consider bringing it up.

Through LBBC’s toll-free Breast Cancer Helpline, at (888) 753-LBBC (5222), Sarah talked to someone who knew what she was going through. The volunteer helped her feel prepared to deal with recovery, which required about 6 weeks off from work. The results were worth it to her.

“Just knowing … my chances have gone from an 80 percent risk of recurrence, due to the genetic mutation, to nearly zero is worth the peace of mind,” she says.

Thomas G. Frazier, MD, FACS, senior attending surgeon and medical director of Bryn Mawr Hospital’s Comprehensive Breast Center and clinical professor of surgery at Thomas Jefferson University, in southeastern Pennsylvania, says many women he sees mention Jolie, but that it’s important to remember that her situation is not typical. In fact, only about 5 percent of breast cancers are related to gene mutations, he says. Weigh the benefits of prophylactic mastectomy with the risk of complications, which is higher when more extensive surgery is involved.

Reconstructing Body Image

Surgery can change the look and feel of your breast. If you have mastectomy, you may consider reconstruction, surgery to rebuild the breast(s). Reconstructive surgeons’ increased ability to provide natural-looking results means many feel confident about mastectomy. After lumpectomy, women are often happy with the outcome. But depending where the tumor is located, it can be hard for even the most skilled surgeons to make your breast look similar to your natural breast.

Darcy Dungan-Seaver, 47, from St. Paul, Minnesota, was diagnosed in 2009 and had a lumpectomy. About 2 years later, the cancer returned in the same breast. Doctors recommended a mastectomy, and a strong family history of breast cancer made her feel confident about the choice to have both breasts removed. She felt less sure about her reconstruction options.

“I was very overwhelmed, in the midst of being very sad and scared around the recurrence itself … so I just decided to separate the two decisions, to go ahead with the medically necessary part of it and to just hold off on the reconstruction,” Darcy said.

She wanted to see if she’d be comfortable without rebuilding her breast. She was fitted for a prosthesis, a device that’s worn under clothing to mimic the appearance of a breast. But after 2 years, she decided having no breasts was making too big an impact on her sense of self and her sexuality. She decided to have reconstruction surgery.

If reconstruction interests you, talk to your healthcare team about it as soon as possible so you can decide when, where and how to go about rebuilding your breast(s). Darcy says she is glad she separated the mastectomy from the reconstruction. She encourages others not to rush into a decision.

“Give yourself time to really understand the options, to talk to women who have gone through it,” Darcy says. “There’s a sense of urgency when you’re diagnosed, but I remember feeling more rushed maybe than I needed to.”

If you have an option when it comes to surgery, speak to your doctors and your loved ones and do your own research. Consider your lifestyle, your level of worry about recurrence, the other medical and lifestyle options available to help you manage risk, your body image and your family history. In the end, the decision is yours, and it is among the most personal you will make during your treatment.