Here you will find the most commonly asked questions regarding breast cancer previvors and preventions like a Prophylactic Mastectomy.

What is a previvor?

The term “previvor” was coined by the advocacy organization FORCE which stands for ‘Facing Our Risk of Cancer Empowered’. Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. With some cancers, there are preventive measures that can be taken to lower risk, but unlike for those who have been diagnosed with cancer, there is less information on how to begin.

With some cancers there are screening tests that can aid in early detection. With others, there may be surgeries or medications which can reduce the risk that you will develop cancer in the first place. For example, if someone has a gene mutation with an elevated risk of developing breast or ovarian cancer, you may begin early screening with mammograms or breast MRIs. Those at risk of hereditary colon cancer may begin colonoscopy screenings at a young age. Preventive approaches may exist as well, as was the choice Angelina Jolie made with her prophylactic mastectomy.

There are several reasons why someone may be considered a previvor. One reason may be a known genetic mutation that raises cancer risk, such as BRCA1, BRCA2, Chek2 or other gene mutations. According to, about 12 percent of women in the general population will develop breast cancer at some point during their lives. However, women who are carriers of certain gene mutations have a 45-65% chance of developing breast cancer. Another reason can be a strong family history of cancer. Several family members with one type of cancer or people with certain combinations of cancer (such as breast cancer in some members and pancreatic in another) are of more concern than others. Lastly, having a risk factor for cancer that raises your risk like a having a history of inflammatory bowel disease which may raise your colon cancer risk.

There is a growing rank of young women, dubbed cancer “previvors,” who, upon learning that they are genetically predisposed to developing the disease, opt to reduce their chances of developing cancer by taking preventative measures, such as prophylactic mastectomies and fallopian tube and ovary removal surgery.

What’s a Prophylactic Mastectomy?

A surgery to remove one or both breasts to reduce the risk of developing breast cancer. According to the National Cancer Institute, prophylactic mastectomy in women who carry a BRCA1, BRCA2, Chek2 or other gene mutation may be able to reduce the risk of developing breast cancer by up to 95% depending on the gene mutation and other factors. According to the advocacy organization, FORCE, half of all women who test positive for some gene mutation opt for the surgery, which provides more peace of mind and comes with fewer side effects than the alternatives: increased surveillance and oral chemo prevention.

What is a Simple or Total mastectomy?

In this procedure, the surgeon removes the entire breast, including the nipple, areola, and skin. Most women, if they are hospitalized, can go home the next day.

What is a Skin-sparing mastectomy?

In this procedure, most of the skin over the breast is left intact. Only the breast tissue, nipple and areola are removed. The amount of breast tissue removed is the same as with a simple mastectomy. Implants or tissue from other parts of the body are used at the time of surgery to reconstruct the breast.

Many women prefer skin-sparing mastectomy because it offers the advantage of less scar tissue and a reconstructed breast that seems more natural.

What is a Nipple-sparing mastectomy?

Nipple-sparing mastectomy is a variation of the skin-sparing mastectomy. In this procedure, the breast tissue is removed, but the breast skin and nipple are left in place. This can be followed by breast reconstruction.

There are still some issues with nipple sparing surgeries. Afterward, the nipple may not have a good blood supply, causing the tissue to shrink or die due to neurosis. Since the nerves are also cut, there often may be little or no feeling left in the nipple. For women with larger breasts, the nipple may look out of place after the breast is reconstructed. As a result, many doctors feel that this surgery is best done in women with small to medium sized breasts. This procedure leaves less visible scars, but if it isn’t done properly, it can leave behind more breast tissue than other forms of mastectomy.

What is a Double mastectomy?

If a mastectomy is done on both breasts, it is called a double (or bilateral) mastectomy. When this is done, it is often a risk-reducing surgery for women at very high risk for getting breast cancer, such as those with a BRCA gene mutation or CHEK 2. Most of these mastectomies are simple mastectomies, but some may be nipple-sparing.

Should I have breast reconstruction surgery after mastectomy?

After having a mastectomy a woman might want to consider having the breast mound rebuilt to restore the breast’s appearance. This is called breast reconstruction. Although each case is different, most mastectomy patients can have reconstruction. Reconstruction can be done at the same time as the mastectomy or sometime later. If you are thinking about having reconstructive surgery, it’s a good idea to discuss it with your surgeon and a plastic surgeon before your mastectomy. This allows the surgical teams to plan the treatment that’s best for you, even if you wait and have the reconstructive surgery later. Insurance companies typically cover breast reconstruction, but you should check with your insurance company so you know what is covered.

Some women choose not to have reconstructive surgery. Wearing a breast prosthesis (breast form) is an option for women who want to have the contour of a breast under their clothes without having surgery. Some women are also comfortable with just ‘going flat,’ especially if both breasts were removed.

What should I expect after surgery mastectomy?

In general, women having a mastectomy stay in the hospital for 1 or 2 nights and then go home. However, some women may be placed in a 23-hour, short-stay observation unit before going home. How long it takes to recover from surgery depends on what procedures were done, and some women may need help at home. Most women should be fairly functional after going home and can often return to their regular activities within about 4 weeks. Recovery time is longer if breast reconstruction was done as well, and it can take months to return to full activity after some procedures.

Ask your health care team how to care for your surgery site.. Usually, you and your caregivers will get written instructions about care after surgery. These instructions should cover:

•How to care for the surgery site and dressing
•How to care for your drain, if you have one (this is a plastic or rubber tube coming out of the surgery site attached to a soft rubber ball that collects the fluid that occurs during healing)
•How to recognize signs of infection
•Bathing and showering after surgery
•When to call the doctor or nurse
•When to start using your arm again and how to do arm exercises to prevent stiffness
•When you can start wearing a bra again
•When to begin using a prosthesis and what type to use
•What to eat and not to eat
•Use of medicines, including pain medicines and possibly antibiotics
•Any restrictions on activity
•What to expect regarding sensations or numbness in the breast and arm
•What to expect regarding feelings about body image
•When to see your doctor for a follow-up appointment

What are some side effects of a mastectomy?

To some extent, the side effects of mastectomy can depend on the type of mastectomy you have (with more extensive surgeries tending to have more side effects). Some common side effects can include:

•Pain or tenderness
•Swelling at the surgery site
•Buildup of blood in the wound (hematoma)
•Buildup of clear fluid in the wound (seroma)
•Limited arm or shoulder movement
•Numbness in the chest or upper arm
•Nerve (neuropathic) pain (sometimes described as burning or shooting pain) in the chest wall, armpit, and/or arm that doesn’t go away over time. It is also called post-mastectomy pain syndrome or PMPS.

As with all operations, bleeding and infection at the surgery site are also possible.

BreastPrevivorsROC is not meant to treat, diagnose, or be a substitute for medical advice. Seek the advice of your physician or other qualified health provider regarding your health.