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. The term is meant to explain how many of these people feel about having a higher chance of developing cancer, and the struggles they go through to navigate this distinction.
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 exist as well such as a 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. We all have pieces of DNA called genes that help our bodies prevent cancer, and there are many different genes associated with the various forms of cancer. Previvors have a higher chance of developing cancer because of a specific change within their DNA that causes a gene not to work as well at preventing that particular cancer. As an example, BRCA1 and BRCA2 are two of the most commonly known genes. If one of these genes does not work normally, there is a higher chance a person may develop breast, ovarian or other cancers. According to cancer.org, 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 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 are the options for previvors?
The knowledge that they could develop cancer leaves previvors with three main options to manage their risk – monitoring, medications and risk-reducing surgeries.
MONITORING – The first management option previvors have is to create a personalized monitoring plan. While not all previvors will actually be diagnosed with cancer, regular screenings can help detect cancer early onlead to early detection and provide more successful treatment options upon diagnosis. This could mean undergoing annual colonoscopies for people with an increased chance of colon cancer or mammograms for those with a higher chance of breast cancer.
MEDICATIONS – Some people may have the option to take preventative medications. For example, some medications decrease the chance of breast cancer by lowering the levels of certain hormones in the body.
RISK-REDUCING SURGERY – Surgery is another option previvors may take to reduce their risk. Some women haven chosen to have a preventative double mastectomy to reduce her chance of breast cancer or a bilateral salpingo-oophorectomy to reduce the chance of ovarian cancer.
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.
Breast Reconstruction Using a Tissue Expander and Implant
After your mastectomy, you’ll have a breast reconstruction surgery using a tissue expander. A tissue expander is an empty breast implant that your surgeon will fill with saline until it reaches the breast size that you and your surgeon decided on.
There are 2 ways to do this type of reconstruction:
Submuscular placement: This is when your surgeon makes a pocket under your large pectoralis muscle in your chest and places a tissue expander in that space.
Your skin is very weak and fragile after your mastectomy, but your muscle is a barrier between your skin and tissue expander. If your tissue expander is placed under the muscle, it will be filled with saline.
Prepectoral placement: This is when your surgeon places the expander over your large pectoralis muscle. After a mastectomy, your skin is very weak and fragile. It’s important to help take pressure off the skin when your skin is first healing after your mastectomy. If your tissue expander is placed over the muscle, it will be filled with air which is less dense than normal saline. If the tissue expander is placed over your muscle, your surgeon will also place a mesh around the expander. This is called acellular dermal matrix. The mesh will help support the expander while your skin is healing. About 2 weeks after your surgery, the air that the tissue expander is filled with will be changed to normal saline.
Once your tissue expansion is finished, you’ll have a second surgery using the same incisions (surgical cuts) to remove the tissue expander and insert the permanent breast implant that you choose with your plastic surgeon.
Implant reconstruction options are filled with saline (salt water) or silicone gel.
Implant Shape Considerations
Breast implants come in one of two shapes – round or teardrop. Round implants are exactly as they sound and when implanted offer symmetric shaping results. However, round implants affect the upper part of the breast disproportionality, creating a push-up look. Some women may prefer this as it offers a fuller look, albeit less natural.
The teardrop shape mimics the shape of the breast itself with less fullness at the top and more toward the nipple. Teardrop implants will not have as dramatic a result as their round counterparts, but will look more natural.
The profile of the implant, whether moderate or high, will also influence the look of the breast. A moderate profile, while more natural, does not offer the dramatic results of a high-profile implant that tends to push breast tissue up and forward for a fuller look.
Breast Autologous or “flap” reconstruction:
Using tissue transplanted from another part of your body (such as your belly, thigh, or back). Autologous reconstruction also may include an implant.
Types of tissue flap procedures
The most common types of tissue flap procedures are:
TRAM (transverse rectus abdominis muscle) flap, which uses tissue from the muscle in your lower abdomen between your waist and your pubic bone. A flap of this skin, fat, and all or part of the underlying rectus abdominus (“6-pack”) muscle are used to reconstruct the breast in a TRAM flap procedure.
DIEP (deep inferior epigastric perforator) flap, is considered a muscle-sparing type of flap. This tissue runs through the abdomen. In a DIEP flap, fat, skin, and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breast.
Latissimus dorsi flap, which uses tissue from the upper back. An oval flap of skin, fat, muscle, and blood vessels from your upper back is used to reconstruct the breast. This flap is moved under your skin around to your chest to rebuild your breast. The blood vessels (artery and vein) of the flap are left attached to their original blood supply in your back.
GAP (gluteal artery perforator) flaps (also known as a gluteal free flaps), which uses tissue from the inferior gluteal artery perforator blood vessel, as well as a section of skin and fat from your lower buttocks — basically the lower section of the “butt cheek,” near the buttocks crease — to reconstruct the breast.
TUG (transverse upper gracilis) flaps, which - uses tissue from the inner thigh to create a new breast after a mastectomy. This procedures can be a preferred types of natural reconstruction for slim women who lack sufficient donor tissue in their abdomen
Fat grafting
A newer technique can take a person’s fat from one part of the body (buttocks, thighs, or abdomen) and transfer it to the reconstructed breast to help fix any shape abnormalities that may be seen after the initial breast reconstruction surgery is done. The fat is obtained by liposuction, cleaned and then dissolved so it can be injected easily into the areas it is needed.
Nipple and Areola Reconstruction
Some people also want to have nipple reconstruction to recreate the nipple and areola. A non-surgical option for nipple and areola reconstruction include 3D nipple and areola tattoos. This will recreate your nipple and areola via a tattoo. The tattoo won’t be raised but will have color and shading to make it look like a natural nipple.
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.
Breast Previvors ROC 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. As with all operations, bleeding and infection at the surgery site are also possible.