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 Mrs. Valletti, 54, of the persistent tightness in her chest that many women describe after breast reconstruction.
“They look terrific, to the eye,” added Mrs. 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.”
Last week the actress Angelina Jolie announced in The New York Times that 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 the article that reconstructive surgery is a quick and easy procedure, and worry that Ms. Jolie inadvertently may have understated the risks and potential complications.
For most patients, like Mrs. Valletti, 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 just 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.
Ms. Jolie said that she completed her reconstructive surgeries in nine weeks, but for many patients the process takes closer to nine months. “Three months is probably a little unusual,” said Dr. Gregory R. D. Evans, in Orange, Calif., president of the American Society of Plastic Surgeons. “I usually tell my patients it will take about a year.”
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, there will be additional incisions that need to heal. If muscle is removed, long-term weakness may result.
A syndrome called upper quarter dysfunction — its symptoms include pain, restricted immobility and impaired sensation and strength — has been reported in over half of breast cancer survivors and may be more frequent in those who undergo breast reconstruction, according to a 2012 study in the journal Cancer.
“People have to understand it’s not a breeze,” said Geri Barish, president of 1 in 9: The Long Island Breast Cancer Action Coalition and a three-time survivor of breast cancer. “I don’t want people to think this is the cure-all, that this is it, hurry up, run out and get the test and have your ovaries and breasts removed.”
Types of Reconstruction
An array of new techniques, each with its own risks and potential benefits, makes for bewildering options for women. The first choice in breast reconstruction is whether to have implants or to make the new breast from muscle or fat and skin taken from elsewhere in the body, often from the abdomen — 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. Just over 19,000 women chose autologous tissue transfer.
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. The implants can rupture, cause infections and lead to pain. Scar tissue often forms around the implants, making the breast hardened or misshapen. Last year alone, there were 16,596 procedures done to remove breast implants.
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 balloonlike 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, which tends to damage the surrounding skin and make it less hospitable to an implant.
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-feeling and natural-looking breast. There are several options.
The transverse rectus abdominis myocutaneous, or TRAM, flap procedure uses tissue and muscle from the lower abdomen to shape a breast mound. But the surgery weakens the abdominal area, and at Johns Hopkins Breast Center, the procedure has been abandoned because of the risk of hernias and abdominal bulges and limitations on lifting after surgery.
Instead, some surgeons now perform the deep inferior epigastric artery perforator, or DIEP, flap procedure, which uses only abdominal skin and tissue, not muscle, to create the breast. Both the TRAM and DIEP surgeries are lengthy procedures that can last 12 hours and can lead to a complication of necrosis, or tissue death, if there isn’t adequate blood supply, Dr. Attai said.
A third type of flap procedure relies on back muscle that is moved under the skin to the front of the chest, but this can weaken the back, shoulder or arm. In yet another procedure, the gluteal free flap, tissue and muscle from the buttocks are used to create a breast mound.
Simulating a Nipple
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 to darken the areola, with 3-D tattoos that create the impression of a nipple.
With a nipple- and skin-sparing mastectomy, the surgeon removes all of the glandular breast tissue while preserving the skin, areola and nipple, much as one might scoop all the fleshy fruit out of an orange and leave the skin intact. This is the procedure Ms. Jolie had. Yet even when it is successful, the nipples usually lose sensation and are numb and cannot play the same role in sexual arousal as before surgery.
Residual breast cells may be left behind, and there is a concern that these may become cancerous. The American Society of Breast Surgeons has established a nipple-sparing mastectomy registry to track patient outcomes.
A potential complication of nipple-sparing surgery is necrosis of the nipple and areola. One recent study found that one-fourth of patients developed partial necrosis in the areola and nearby skin, and needed surgery to remove the dead tissue and to prevent infection.
The choices to be made in breast construction, or whether to have it at all, are highly individual.
“Some patients just don’t want more than one incision,” and want to avoid autologous tissue for that reason, Dr. Attai said. “Other patients want to avoid having a foreign body inside them” and therefore opt against implants.
Many women say plastic surgeons push them to choose larger implants. Some women worry that function can be sacrificed for form in the reconstruction process, leading to restricted mobility and pain that limits everyday tasks like driving and sitting at a computer, as well as more vigorous activities like biking or skiing. While women should know about the options, “all the options may not be good for you as an individual,” Dr. Attai said. It is wise to get several opinions, she added, because surgeons have their own preferred techniques and biases.
Bearing the Costs
Whatever procedure is chosen, infections are a common complication, requiring aggressive treatment with antibiotics and often surgery to remove implants. One 2012 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. Recurrence happens in 1 percent to 5 percent of patients, according to Dr. Attai, as it does for women who have mastectomy without reconstruction. Recurring cancers can be somewhat easier to detect in breasts reconstructed with implants than with tissue transfer, she noted.
Though there has been concern that the nipple-sparing procedure might lead to more frequent recurrence of cancer, a recent review found that just 2.8 percent of patients experienced a recurrence over two years.
Cost is an important 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.
“A lot of people with a strong family history of breast cancer discover they have no genetic mutation, at least not one we know about,” said Dr. Marisa Weiss, an oncologist and founder of Breastcancer.org. “While they may be relieved they don’t have BRCA 1 or 2, obviously something is going on if a family is significantly affected.”
The test results can be ambiguous, finding what is called a “variance of uncertain significance” or changes in the genetic code that are not well understood, said Dr. Susan M. Domchek, director of the Basser Research Center for BRCA at the University of Pennsylvania. Minority patients have a higher rate of such results, she said. The finding usually results in more frequent monitoring for cancer.
For all women, other options for reducing breast cancer risk include breast-feeding and avoiding both oral contraceptives and hormone therapy, Dr. Weiss said. Treatment with tamoxifen also appears to reduce the risk for BRCA mutation carriers.
None of these steps, however, will reduce the risk as significantly as prophylactic mastectomy and surgery to remove the ovaries, Dr. Weiss said.
Ms. Jolie has said indicated that she may undergo surgery to remove her ovaries. Ovarian cancer is so hard to detect that it often is found only at an advanced stage. But removal of the ovaries leads to immediate menopause and may adversely affect quality of life in drastic ways.
The multiplicity of treatment options and the persistent uncertainties about which is appropriate to an individual patient mean that decisions about preventive mastectomy have not grown easier, only harder. Many physicians are concerned that women, especially those traumatized by loss of a family member to cancer, may make hasty choices.
“We have had a rush of phone calls coming in with this idea, ‘Should I be getting my mastectomy?’ ” Dr. Domchek said. “But every surgical procedure comes with potential complications, and we need to attempt to balance the risk and benefit.”
This post has been revised to reflect the following correction:
Correction: May 22, 2013
A capsule summary on Tuesday for an article about options in breast reconstruction surgery left the incorrect impression that the complex and often painful procedures described in the article referred to mastectomy. As the article explained, it is the elective reconstruction of the breast or breasts that is often a protracted process involving the risk of complications and variable results.