June 3, 2013

Painful choices after mastectomy

Doctors offer different ways to reconstruct the breast, but all carry risks.

By almost any measure, Roseann Valletti’s reconstructive breast surgery was a success. Although it was a protracted process, involving some pain and a nightmarish nipple replacement, she is pleased with how she looks.

But she is uncomfortable. All the time.

“It feels like I’m wrapped up in duct tape,” said Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction.

”They look terrific, to the eye,” added Valletti, a teacher who lives in Valley Stream, N.Y., and who learned she had early stage cancer in both breasts five years ago. “But it’s never going to feel like it’s not pulling or it’s not tight. It took me a while to accept that. This is the new normal.”

Actress Angelina Jolie recently announced she had had a double mastectomy in February after testing positive for a genetic mutation that put her at high risk for breast and ovarian cancer. She also had reconstructive surgery.

Her disclosure was lauded by some advocates as a bold move that will inspire women to be proactive, learn about their family histories and risks, and consider genetic testing.

At the same time, some breast surgeons are discomfited that some might infer from her announcement in the New York Times that reconstructive surgery is a quick and easy procedure, and worry that Jolie inadvertently may have understated the risks and potential complications.

For most patients, breast reconstruction requires an extended series of operations and follow-up visits that can yield variable results. Some women experience so many complications that they have the implants removed.

“We do not yet have the ability to wave a wand over you and take out breast tissue and put in an implant – we’re not at ‘Star Trek’ medicine,” said Dr. Deanna J. Attai, a breast surgeon in Burbank, Calif., who is on the board of the American Society of Breast Surgeons.

Jolie said she completed her reconstructive surgeries in nine weeks, but for many patients the process takes closer to nine months.

“I usually tell my patients it will take about a year,” said Dr. Gregory R.D. Evans, in Orange, Calif., president of the American Society of Plastic Surgeons.

And it is major surgery. Even with the best plastic surgeon, breast reconstruction carries the risks of infection, bleeding, anesthesia complications, scarring and persistent pain in the back and shoulder. Implants can rupture or leak, and may need to be replaced. If tissue is transplanted to the breast from other parts of the body, additional incisions will need to heal.

An array of new techniques, each with its own risks and potential benefits, makes for bewildering options for women.

The first choice is whether to have implants or to make the new breast from muscle or fat and skin taken from elsewhere in the body so-called autologous tissue transfer.

More plastic surgeons are familiar with implants, and the procedure is less expensive than tissue transfer. Of the 91,655 women who had reconstruction last year in the United States, a vast majority opted for implants, with 64,114 choosing silicone and 7,898 choosing saline, according to the American Society of Plastic Surgeons. Slightly more than 19,000 women chose autologous tissue transfer.

Silicone or saline?

Many surgeons believe silicone implants confer a more natural look than saline, despite a long-running controversy over their safety. The Food and Drug Administration allowed silicone implants back on the market in 2006, after studies showed they did not increase the risk of immune disease. A new type is filled with a thick gel that may pose less risk of leakage.

Whether they are silicone or saline, however, implants do not last a lifetime. As many as half need to be replaced or removed within 10 years, according to the American Cancer Society.

Reconstruction may be started at the same time as the mastectomy, or later. Usually the first step is to place a so-called tissue expander under the chest muscle, which normally presses against the ribs. The surgeon injects saline into the pouch at regular intervals several weeks apart to create space for the implant. Eventually, the expander is removed and replaced with the implant. (Unlike breast tissue, which sits on top of the chest muscle, the implant is situated under the muscle, which holds it in place.) The process can take several months, longer if problems develop or the patient needs other treatment like radiation.

In autologous tissue transfers, muscle, skin or fat from another part of the patient’s body substitutes for an implant. Some surgeons believe this creates a more natural breast.

Reconstruction of the nipple has long been a challenge. Surgeons have used incision scar tissue or tissue taken from the groin or between the buttocks to craft nipples. Tattoos are also used.

With a nipple- and skin-sparing mastectomy, the surgeon removes all of the glandular breast tissue while preserving the skin, areola and nipple. This is the procedure Jolie had. Yet even when it is successful, the nipples usually lose sensation and cannot play the same role in sexual arousal as before surgery. And residual breast cells may be left behind, raising concern that these may become cancerous.

Bearing the costs

Whatever procedure is chosen, infections are a common complication, requiring aggressive treatment with antibiotics and often surgery to remove implants. One study estimated infections occur in up to 35 percent of post-mastectomy reconstructive procedures.

Though rare, it is possible for cancer to occur or recur in a reconstructed breast, because some breast tissue remains. Cost is a consideration. A federal law passed in 1998 required insurance plans and health maintenance organizations that pay for mastectomy to also cover the cost of reconstructive surgery. But the availability of plastic surgeons varies by region, and many do not accept insurance reimbursement.

Women may also face deductible payments as high as $10,000 with some plans, and those on Medicaid may face long waits because of a shortage of plastic surgeons who do breast reconstruction and accept this insurance.

While many women without cancer may now seek genetic testing for mutations in the BRCA 1 and BRCA 2 genes, they must meet certain criteria to be reimbursed by insurance, doctors say.

The criteria vary by insurer. United Health Care, for instance, covers testing if there is a known mutation in a family member or a first- or second-degree relative has developed breast or ovarian cancer. The test is expensive, about $3,000, and a negative test result for known genetic mutations does not necessarily mean a woman’s overall breast cancer risk is negligible, experts say.

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