informational

Being diagnosed with breast cancer is a life altering experience. Though your surgical and medical treatment may be over, the effects of having been diagnosed and treated may continue for some time. After treatment your body is different. You have lost part or all of your breast(s). You've undergone lymph node surgery. You may have had chemotherapy, radiation, or both. Each phase of treatment unto itself is unique and how your body and mind coped with it during and after care is equally unique. It is common to have remaining concerns about your health and how to best move forward after treatment ends. There are some similarities about how women feel after treatment too and learning about these common reactions can help to prepare you for life after treatment. Your doctors, nurses, and other Breast Center team members want to see you well again. Defining wellness for each patient can be different. It is rare that anyone having had breast cancer feels physically or psychologically as they did before their diagnosis but all patients should look forward to being healthy again

All breast cancer survivors live with concern about recurrence of breast cancer. This fear is usually the biggest worry of all. Women feel that their body has betrayed them and therefore it takes time to trust it again. Learning how to cope with fears of recurrence is important so that you can make the most of your life and what it has to offer you and you offer to it. And though your body has gone through many changes as a result of the cancer diagnosis and treatment, you will more than likely find yourself healthy, strong, and optimistic once again.

Your body has been through physical changes. You may have a different silhouette than you had before. Depending on the type of breast surgery performed, you may have some potential physical restrictions related to reconstructive surgery or to having lymph nodes removed or both. You may be experiencing skin or breast changes as a result of radiation therapy. As a result of chemotherapy your hair may still be gone or just now starting to grow back. You may also be experiencing symptoms of menopause.

So why are family and friends saying to you now that you should be getting your life back to normal? Partly because they desperately want to see things in your life (and theirs) back to the way it was before your diagnosis of breast cancer. And perhaps so would you.

We can't rewind the clock however. This life altering experience can't be erased. So let's see how to begin a new life with a new definition of "normal" for you. It is not uncommon for women who have experienced breast cancer to find that this experience in the long run has made their life better and helped them to learn some valuable things about themselves and make their new life after treatment more fulfilling. Priorities are set differently going forward, relationships are strengthened, and what is important in life takes on a different meaning.

This booklet contains information to help you and your family adjust to your "new normal" and define how to cope with symptoms that linger after treatment, deal with fear of recurrence, and learn ways to adjust to other changes that your body may experience in the future, like menopause. We want to help you achieve that "new normal" so that you can enjoy living and feel confident again in trusting your body, making the most of each day, and gaining insight into how this breast cancer experience can result in a new beginning for you.

Recurrence And Follow-Up
Once the treatment for breast cancer is completed, patients enter a period of follow-up which remains ongoing for the rest of their lives. During follow-up, the major concern of patients and their doctors is further problems with breast cancer. You will also be watched for any long-term side effects from the treatment you received. These problems can take two forms. The original breast cancer can recur or a patient can develop a new breast cancer. It is important to distinguish these two because the prognosis is very different for each. The most serious form of recurrence is metastasis that develops when breast cancer spreads to other sites in the body. A second type of recurrence, which has a more favorable prognosis, is when breast cancer is detected at or near the original site in the breast in a patient who has had breast-conserving therapy.

Patients who have had one breast cancer are at higher-than-average risk for developing another breast cancer. The new breast cancer can develop in remaining breast tissue, including the conserved breast in a patient who has had breast-conserving therapy, or in the opposite breast.

Studies show that about 80% of breast cancer recurrences are detected by the patient herself either because she developed symptoms or she detected some physical abnormality. The second most common way in which recurrences are detected is by physical exam performed by a physician or other care provider or by mammogram at the time of the patient's annual breast x-ray. Only uncommonly do laboratory or radiology tests detect metastases in the absence of symptoms or physical abnormalities.

All breast cancer survivors are highly attuned to their bodies. They notice everything. Moreover, it is the norm for patients to worry that any symptom or physical abnormality is related to breast cancer. This is not the case. However, the anxiety about recurrence is so pervasive that it is hard for patients not to assume that symptoms or physical abnormalities are related to breast cancer. This anxiety tends to be greatest soon after diagnosis and initial treatment. It gradually subsides, but never fully goes away.

It's important to remember that breast cancer survivors are not immune to everyday aches and pains. However, breast cancer patients don't think of aches and pains as everyday. Symptoms that breast cancer patients would have ignored before their diagnosis are now taken ever so seriously. While it is important to pay attention to symptoms, it is also important not to assume the worst. Unless symptoms are very clearly in need of medical attention immediately, it is best to give them a week or two to see if they will go away on their own. Most symptoms and physical abnormalities go away on their own. Most will never be explained. Symptoms that are related to cancer do not go away. They may come and go initially, but eventually cancer-related symptoms persist and worse symptoms that wax and wane or come and go without worsening are very unlikely to related to cancer. If symptoms or physical findings do not go away or if they become more persistent or severe, it is suggested that they be brought to the attention of the physician.

Follow-up after diagnosis and initial treatment should include regularly scheduled visits with breast cancer doctors, special gynecologists, as well as mammography. It is important to point out that the recommendation against screening tests for distant recurrences does not apply to screening for new breast cancers or for a recurrence in the same breast following breast conservation treatment. Screening for new breast cancers is done by mammography. Screening mammography has been shown to improve survival. In other words screening mammograms can pick up cancers early enough that effective treatment can be instituted. Therefore, during post treatment follow-up, breast cancer survivors are encouraged to have routine screening mammography. Typically the uninvolved breast should be screened annually while a conserved breast should be screened every six months for the first one to two years and then annually.

Screening tests for metastases have not been shown to improve the outcome of patients. Therefore, they are not recommended. In other words, blood tests, including tumor or cancer markers, x-rays, and scans are not recommended on a routine basis in the absence of symptoms or abnormal physical findings. On the other hand, some or all of these tests are warranted in an attempt to explain symptoms or abnormal physical findings.

Patients are typically perplexed that blood tests, x-rays and scans to search for asymptomatic metastases are not recommended. It is quite natural to believe that the outcome of treatment of metastases will be better if they are detected as early as possible. Unfortunately, this is currently not the case. Typically, screening tests for metastases will only pick up abnormalities a few weeks or months before they would cause symptoms and be otherwise detected. However, your chances of responding or benefiting from breast cancer treatment once it has metastasized are essentially the same regardless of when treatment is started. Two large clinical trials have shown that patients who have screening laboratory work for metastases do not have any better outcome or quality of life than patients who do not have these tests.

Research into more accurate ways to detect metastases is ongoing. At the same time, there is enormous effort underway to develop better treatments for metastatic breast cancer. It is hoped and expected that in the future there will be more effective screening tests and treatments for metastases. At that time, screening for metastases may become routine. Until then however, it is not recommended. More detailed information on follow-up recommendations after your initial diagnosis and treatment is available in the public area of the American Society of Clinical Oncology web site (www.asco.org).

With regards to physician follow-up, it is important that patients follow-up with all of the physicians involved in their treatment. However, this follow-up should be done sequentially rather than in parallel. It is suggested that patients see one of their breast cancer doctors every three to six months during the first 3 years after diagnosis, then 6-12 months for the next 2 years, then annually. Your breast cancer team will help you in making these follow up appointments at the appropriate intervals. Thereafter, follow-up visits can be every 6 to 12 months. While patients will always need breast screening, they may not always need to have follow-up with the physicians who treated their breast cancer. After five or more years of follow-up, patients may be able to be followed by an internist, gynecologist, or primary care physician knowledgeable about the health issues of breast cancer survivors.