Prophylactic (Preventative) Mastectomy
Getting a mastectomy (surgery that removes the breast tissue) may seem like a big step to take if you haven’t been diagnosed with breast cancer. But for many people who are at high risk, it’s a move that makes a lot of sense for both medical and emotional reasons.
If you have specific risk factors, a prophylactic (or preventative) mastectomy can dramatically reduce the risk of developing breast cancer in your lifetime. For example, research shows that prophylactic bilateral mastectomy reduces the risk of breast cancer by at least 95% in women who have a BRCA1 or BRCA2 gene mutation, and up to 90% in women who have a strong family history of breast cancer. The surgery doesn’t bring the risk to zero, though, because it’s not possible to remove every cell of breast tissue that could develop cancer.
When surgery is done to reduce risk in someone who hasn’t had breast cancer, it’s called a prophylactic mastectomy. It’s almost always done on both breasts (known as a double mastectomy or bilateral mastectomy).
People who’ve had breast cancer in one breast sometimes choose to have the breast tissue from the other, unaffected breast removed to lower the risk of cancer occurring there. That’s called a contralateral prophylactic mastectomy.
A prophylactic mastectomy can be performed in several ways. One approach involves removing the entire breast, while others keep some or all of the breast skin, the nipple, and the areola intact.
When is a prophylactic mastectomy recommended?
Having a prophylactic double mastectomy might be right for you if you’re at a high risk of developing breast cancer. To find out your individual risk of breast cancer, you can ask your primary care provider or gynecologist to do a comprehensive breast cancer risk assessment for you. You can also have this done by a provider at a breast clinic or a genetics clinic. To fully understand your risk, it may be a good idea to get genetic testing if you haven’t done so already, and especially if you have a family history of breast cancer.
A prophylactic double mastectomy might be recommended for you if you have one or more of the following risk factors. A strong family history of breast cancer (meaning that more than one of your close relatives have had breast cancer, especially if it was before the age of 50), combined with any of these would make for an even stronger recommendation.
you tested positive for a gene mutation linked to a higher risk of breast cancer, such as BRCA1, BRCA2, PALB2, CDH1, PTEN, CHEK2, or TP53 gene mutation
you had radiation therapy to your chest before the age of 30
you've been diagnosed with lobular carcinoma in situ (LCIS)
A contralateral prophylactic mastectomy might be recommended for you if you’ve been diagnosed with breast cancer in one breast and are at high risk of developing cancer in the other breast (because you have one or more of the risk factors listed above).
Deciding if a prophylactic mastectomy is right for you
Choosing to get a prophylactic mastectomy can be a difficult and very personal decision. The surgery comes with some risks and downsides, but it can also offer peace of mind. And it can allow you to avoid the more frequent breast cancer screening tests (and callbacks for potentially suspicious findings) that people at high risk often have to deal with. Some research suggests that most people who get a prophylactic mastectomy are satisfied with their decision and that it reduces their cancer-related anxiety.
When deciding if a prophylactic mastectomy is right for you, it makes sense to have a detailed conversation with your doctors weighing the risks of the surgery vs. your risk of developing breast cancer.
If you’re at high risk for breast cancer, it’s also important to discuss all your risk-reducing options with your healthcare team. They might recommend that you use other risk-reduction strategies, such as taking hormonal therapy.
Some people at high risk for breast cancer, ovarian cancer, or both, also choose to get prophylactic surgery to remove the ovaries, fallopian tubes, and/or uterus.
How is a prophylactic mastectomy done?
If you decide to get a prophylactic mastectomy, you may have some choices to make about how the surgery is done. It’s worth meeting with more than one breast surgeon and plastic surgeon to find out about all your options and ask questions.
You and your doctors will work together to decide which of these approaches are best for you:
Simple (or total) mastectomy: the surgeon removes all of the breast tissue and the nipple and areola (the dark area around the nipple).
Skin-sparing mastectomy: the surgeon removes all breast tissue, the nipple, and areola, but the skin over the breast is left intact.
Nipple-sparing mastectomy: the surgeon removes all breast tissue, but the nipple, areola, and the skin over the breast is left intact.
A prophylactic mastectomy can be combined with procedures that can help prevent loss of sensation to the chest and nipples and/or with breast reconstruction.
Axillary lymph node dissection (removal of the underarm lymph nodes) is not usually performed as part of a prophylactic mastectomy.
Breast reconstruction and prophylactic mastectomy
If you want to get breast reconstruction, it’s often done at the same time as the prophylactic mastectomy (immediate reconstruction). But it can also in some cases be done at a later date (delayed reconstruction). There are several types of breast reconstruction you may be a candidate for. And if your nipples are removed during the mastectomy, they can be recreated using nipple reconstruction surgery, 3D nipple tattooing, or both.
If you decide not to get breast reconstruction or aren’t a candidate for it, you may want to ask your surgical team to perform an aesthetic flat closure. This procedure creates a smooth, flat chest wall.
Prophylactic mastectomy risks and downsides
Prophylactic mastectomy surgery, like mastectomy to treat breast cancer, has some risks.
The risks immediately after surgery can include bleeding, infection, seroma (fluid collecting in a surgical wound), hematoma (blood collecting in a surgical wound), delayed wound healing, and scar tissue formation.
Longer-term risks can include post-mastectomy pain syndrome, loss of sensation in the breast(s) and nipple(s), and anxiety or depression about body image. Another downside for some people is losing the ability to breastfeed. Also, getting a prophylactic mastectomy doesn’t guarantee that you’ll never get breast cancer. It may not be possible for a surgeon to remove every last cell of breast tissue, and in very rare cases breast cancer can sometimes develop in the tiny amount of tissue that remains.
Does insurance cover prophylactic mastectomy?
Many but not all health insurance plans cover prophylactic mastectomy and reconstruction. In most cases, you and your doctor will need to provide documentation to the insurer that shows the surgeries are medically necessary. The criteria for what is considered medically necessary, and the specific documentation that is required, varies by insurance company. Some states have laws requiring insurers to cover prophylactic mastectomies and related procedures, but there are no federal laws that require insurers to cover them.
