At first, your follow-up appointments will probably be scheduled for every 4 to 6 months. The longer you have been free of cancer, the less often the appointments are needed. After 5 years, they are done once a year. You will need to have yearly mammograms of the remaining breast and the breast treated by lumpectomy.

If you are taking tamoxifen, you should have yearly pelvic exams because the drug can increase your risk of uterine cancer. Be sure to tell your doctor right away about any abnormal vaginal bleeding you are having. Although excessive or irregular vaginal bleeding is usually caused by a noncancerous condition, it may also be the first sign of uterine cancer.

If you are taking an aromatase inhibitor, you should consider testing your bone density.

Other tests such as blood tumor marker studies, blood tests of liver function, bone scans, and chest x-rays are not usually needed unless symptoms or physical exam findings suggest it is likely the cancer has recurred. These and other tests may be done as part of evaluating new treatments by clinical trials.

If initial exams and tests suggest a recurrence, a chest x-ray, CT scan, bone scan, and a biopsy may be done. Your doctor may also measure the tumor marker CA-15-3 with a blood test. The blood level of this substance goes up in some women if their cancer has spread to bones or other organs such as the liver. Depending on the location of a recurrent cancer, treatment may involve surgery, radiation therapy, hormone therapy, and/or chemotherapy.

Lymphedema, or swelling of the arm due to buildup of fluid, may occur after treatment for breast cancer. Any treatment that involves axillary dissection or radiation to the axillary lymph nodes carries the risk of lymphedema because normal drainage of lymph from the arm is disrupted.

The onset of lymphedema is often subtle and unpredictable. There is no good way to predict who will and will not develop lymphedema. It can occur right after surgery, or months or even years later. The potential for developing lymphedema remains throughout a woman's lifetime.

With care, lymphedema can often be avoided or, if it develops, kept under control. Injury or infection involving the affected arm or hand can contribute to the development of lymphedema or aggravate existing lymphedema, so preventive measures should focus on protecting the arm and hand. Most doctors recommend that women avoid having blood drawn from the arm that has lymphedema.

One of the first symptoms of lymphedema may be a feeling of tightness in the arm or hand on the same side that was treated for breast cancer. Any swelling, tightness, or injury to the arm or hand should be reported promptly to your doctor or nurse. To learn more, see our document on Lymphedema.

Women who have undergone treatment for breast cancer should be reassured that their quality of life, once treatment has been completed, will be normal. Extensive studies have shown this. Women who have had chemotherapy may have a slight decrease in certain areas of function.

It is important that your focus on tests and treatments does not prevent you from considering your emotional, psychological, and spiritual health as well.

Body image: A woman's choice of treatment will likely be influenced by her age, the image she has of herself and her body, and her hopes and fears. For example, some women may select breast-conserving surgery with radiation therapy over a mastectomy for cosmetic and body image reasons. On the other hand, some women who choose mastectomy may want the affected area removed, regardless of the effect on their body image. They may be more concerned about the effects of radiation therapy than body image.

Other issues that women worry about include hair loss from chemotherapy and skin changes of the breast from radiation therapy. In addition to these body changes, women may also be dealing with concerns about the outcome of their treatment. These are all genuine concerns that affect how a woman makes decisions about her treatment, how she views herself, and how she feels about her treatment.

Sexuality: Concerns about sexuality are often very worrisome to a woman with breast cancer. Several factors may place a woman at higher risk for sexual problems after breast cancer. It is important to remember that some treatments for breast cancer, such as chemotherapy, can change a woman's hormone levels and may negatively affect sexual interest and/or response. A diagnosis of breast cancer when a woman is in her 20s or 30s is especially difficult because choosing a partner and childbearing are often very important during this period.

Relationship issues are also important because the diagnosis can be very distressing for the partner, as well as the patient. Partners are usually concerned about how to express their love physically and emotionally after treatment, especially surgery.

Suggestions that may help a woman adjust to changes in her body image include looking at and touching herself; seeking the support of others, preferably before surgery; involving her partner as soon as possible after surgery; and openly communicating feelings, needs, and wants created by her changed image.

Sexual impact of surgery and radiation: Because breast cancer is the most common cancer in women (excluding skin cancer), sexual problems have been linked to mastectomy more often than to any other cancer treatment. Losing a breast, or occasionally both breasts if a woman later has a second tumor, can be traumatic.

The most common sexual side effects stem from damage to a woman's feelings of attractiveness. In our culture, we are taught to view breasts as a basic part of beauty and femininity. If her breast has been removed, a woman may be insecure about whether her partner will accept her and find her sexually pleasing.

The breasts and nipples are also sources of sexual pleasure for many women. Touching the breasts is a common part of foreplay in our culture. A few women can reach orgasm just from the stroking of their breasts. For many others, breast stimulation adds to sexual excitement.

Breast surgery or radiation to the breasts does not physically decrease a woman's sexual desire. Nor does it decrease her ability to have vaginal lubrication, normal genital feelings, or reach orgasm. Some good news from recent research is that within a year after their surgery, most women with early stage breast cancer have good emotional adjustment and sexual satisfaction. They report a quality of life similar to women who never had cancer.

Treatment for breast cancer can interfere with pleasure from breast caressing. After a mastectomy, the whole breast is gone. Some women still enjoy being stroked around the area of the healed scar. Others dislike being touched there and may no longer even enjoy being touched on the remaining breast and nipple.

Some women who have had a mastectomy feel self-conscious being the partner "on top" during sex. The area of the missing breast is more visible in that position.

A few women have chronic pain in their chests and shoulders after radical mastectomy. During intercourse, supporting these areas with pillows may help. Also, avoid positions where your weight rests on your chest or arms.

If surgery removed only the tumor (segmental mastectomy or lumpectomy) and was followed by radiation therapy, the breast may still be scarred. It also may be a different shape or size. During radiation therapy, the skin may become red and swollen. The breast also may be a little tender. Breast and nipple feeling, however, should remain normal.

Sexual impact of breast reconstruction: Breast reconstruction restores the shape of the breast, but it cannot restore normal breast sensation. The nerve that supplies feeling to the nipple runs through the deep breast tissue, and it gets disconnected during surgery. In a reconstructed breast, the feeling of pleasure from touching the nipple is lost. A rebuilt nipple has much less feeling.

In time, the skin on the reconstructed breast will regain some sensitivity but probably will not give the same kind of pleasure as before mastectomy. Breast reconstruction often makes women more comfortable with their bodies, however, and helps them feel more attractive.

For women who have had a mastectomy, breast forms are an important alternative to breast reconstruction. Some women may not want further surgery, knowing that breast reconstruction can require several procedures to complete.

Your doctor will tell you when you have healed enough to be fitted for a permanent breast form or prosthesis. Most of these forms are made from materials that approximate the movement, feel, and weight of natural tissue. A properly weighted form provides the balance your body needs for correct posture and anchors your bra, preventing it from riding up.

At first, these forms may feel too heavy, but in time they will feel natural. Prices vary considerably. High price doesn't necessarily mean that the product is the best for you. Take time to shop for a good fit, comfort, and an attractive natural appearance in the bra and under clothing. Your clothes should fit the way they did before surgery.

The right bra for you may very well be the one you have always worn. It may or may not need adjustments. If there is tenderness during healing, a bra extender can help by increasing the circumference of the bra so that it does not bind the chest too tightly. Heavy-breasted women can relieve pressure on shoulder straps by slipping a bra shoulder pad under one or both straps.

If you decide to wear your breast form in a pocket in your bra, you can have your regular bra adapted. There are also special mastectomy bras with the pockets already sewn in. If the breast form causes any kind of skin irritation, use a bra with a pocket. If your bra has underwires, you may be able to wear it, but be sure to clear this with your doctor.

You might want to wear your prosthesis under nightgowns but would like something more comfortable than a regular bra. Most department stores carry a soft bra, sometimes called a leisure or night bra.

Be sure to read your insurance policy to see what is covered and how you must submit claims. Also, ask your doctor to write prescriptions for your prosthesis and for any special mastectomy bras. When purchasing bras or breast forms, mark the bills and any checks you write "surgical." Medicare and Medicaid can be used to pay for some of these expenses if you are eligible. The cost of breast forms and bras with pockets may be tax deductible. If you have a bra altered, the charge may be tax deductible.

Keep careful records of all related expenses. If you submit a claim for a prosthesis or bra to your insurance company, in some cases the insurance company WILL NOT cover reconstruction if you choose this procedure in the future. Make sure you get all the facts before submitting any insurance claims.

Be sure to call your Reach to Recovery volunteer about any questions you have. She will give you suggestions, additional reading material, and advice. Remember that she's been there and will probably understand.

Because of the well-established link between estrogen levels and growth of breast cancer cells, many doctors have advised breast cancer survivors not to become pregnant for at least 2 years after treatment. This would allow any early return of the cancer to be diagnosed and could affect a woman’s decision to become pregnant. Although few studies have been performed, nearly all have found that pregnancy does not increase the risk of recurrence after successful treatment of breast cancer. Women are advised to discuss their risk of recurrence with their doctors. In some cases, counseling can help women with the complex issues and uncertainties regarding motherhood and breast cancer survivorship.

The known link between estrogen levels and breast cancer growth has discouraged many women and their doctors from choosing or recommending hormone replacement therapy (HRT). Unfortunately, many women experience menopausal symptoms after treatment for breast cancer. This can occur naturally or develop as a result of menopausal women stopping HRT. Chemotherapy can also cause early menopause in premenopausal women.

In the past, doctors have offered HRT after breast cancer treatment to women suffering from severe symptoms because early studies had shown no harm. However, in early 2004 a well-designed study (the HABITS study) was stopped early and the results published because it found that breast cancer survivors taking HRT were much more likely to develop a new or recurrent breast cancer than women who were not taking the drugs. For this reason, most doctors now feel that for women previously treated for breast cancer, taking HRT would be unwise.

Women should consider discussing with their doctors alternatives to HRT pills to help with specific menopausal symptoms. Some doctors have suggested that phytoestrogens (estrogen-like substances from certain plant sources such as soy products) may be safer than the estrogens used in HRT. However, there is not enough information available on phytoestrogens to evaluate their safety for breast cancer survivors.

Revised 9/04