IM DONE WITH MY TREATMENT - NOW WHAT? INFO...

Copied this from
http://www.hopkinsbreastcenter.org/library/diagnosis_treatment/post_treatment.shtml

Lots of good information for "moving beyond" and coping.
Hope this helps.

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.


Coping with the Years That Lay Ahead
"There have certainly been times when I have felt greater uncertainty about my long-term survival than I have at other times. In each of the last three autumns, I have wondered whether to plant the tulip and daffodil bulbs for the spring bloom or not to bother. Now again this past spring, a glory of living color rewarded me, and once again I Survive", A Cancer Survivor's Almanac.
The emotional response following the completion of treatment is demanding, just as it was during diagnosis and treatment. The most prevalent challenges include learning to live with uncertainty, fear of recurrence, sexuality concerns and the impact on the family.

When someone is diagnosed with breast cancer they realize that life will never be the same and the expectations of the future are unknown. For most, this is a new realization of one's mortality and vulnerability. There may be feelings of anger, resentment frustration and grief about the uncertainty. There is also the pervasive fear of a new cancer diagnosis and the worry that is created when experiencing a new symptom. Doctor's appointments and medical procedures may become anxiety-provoking events and adversely, patients also feel less secure when the need for medical observation and staff support diminishes.

There are skills patients can utilize to manage these fears. Use techniques to lower anxiety such as exercise, meditation and/or relaxation. Educate yourself about available resources that deal with survivorship. Re-establish goals to live life one day at a time. Try and focus on the simple pleasures before taking on the big tasks. Allow yourself to appreciate day to day accomplishments. Take this opportunity to deepen meaningful relationships. Give yourself permission to feel a range of emotions - it is ok to feel sad even after your treatment is over! Bring someone with you to future appointments... not only is it reassuring to have company but if you are anxious they will be able to hear information that you won't. Prepare your questions for your doctor or nurse before you come to the appointment. If you haven't already, join a support group. (Refer to resource list at end of document for support group locations.) There's nothing more life affirming than meeting women who battled cancer years ago and are still having meaningful lives! If you need extra help don't be afraid to ask for professional counseling and/ or spiritual guidance. Recovery takes different forms for everyone and sometimes people need assistance to get to their "new normal".

Many women experience loss of sense of self due to physical changes and energy level. It is quite normal for women to experience diminished sexual desire. You may have difficulty reestablishing intimacy with your partner and communicating your needs. This can be due to many factors including alterations to appearance, side effects of hormonal therapy, and fatigue. Don't be afraid to discuss sexual concerns with your medical team. They can give you information about resolving many problems such as loss of sexual desire and vaginal dryness. Your health care team can also assist you in seeing specialists who can help, if needed. It is also very important to communicate with your partner not only about your physical needs and changes but your emotional feelings about yourself.

You are probably not the only one experiencing new fears and concerns. Your family is also trying to adjust to your "new normal". There may be conflict between you and your loved ones as you continue to cope with the emotional impact of having cancer and they want you to move on. There may be new expectations and responsibilities for members of your family. They may stop talking about the cancer experience in an effort to move forward and protect you. There may also be a new fear for daughters and other family members regarding the genetic legacy of breast cancer.

It is important to communicate these common fears with the entire family as well as acknowledge that there will be differences in adjustment styles. Discuss your expectations and needs and let them discuss their needs as well. Communication is key for a healthy recovery. Discuss with your physicians the potential benefits of genetic counseling and/or medical follow-up, whenever appropriate, for your immediate relatives (siblings and children).

Try to recognize that there are positive influences from the cancer experience. You may experience a change in priorities and values towards a more meaningful life. Many have a growth in personal philosophy and spirituality. You have learned new coping skills to combat fear and uncertainty. It is important to remember that the personal triumph in survivorship requires approaching life in a day to day, week to week, and year to year process. This individual journey will help reestablish a sense of hope and certainty for your future.


Breast Cancer Survivors - "The Other Medical Issues"
Because most women will survive breast cancer, other aspects of their general medical care including immunizations, preventative medicine and, especially, non-breast cancer screening are of utmost importance for their future health. While the different "consensus groups" (American College of Physicians, American Cancer Society, U.S. Preventative Service Task Force, etc.) may vary on the recommended age and frequency for cancer screening in the general population, there are some general guidelines to follow. Some women with a history of breast cancer are at slightly increased risk for colon, ovarian or endometrial cancer and the minimum cancer screening for a breast cancer survivor should be very conservative. Because these are only guidelines, every woman should discuss her situation with her doctor.

Colon Cancer Screening
Fecal Occult Blood testing done annually beginning at age fifty
Baseline colonoscopy at age 50, then sigmoidoscopy every three to five years
If high risk for colon cancer (familial syndromes), consider begin screening at an earlier age
Cervical Cancer Screening/Gynecologic Evaluation

Papanicolaou (Pap) testing and pelvic exam should be performed yearly
Any abnormal vaginal bleeding should be reported to your physician
Skin Cancer Screening/Prevention

Regular skin self-examinations as instructed by the physician
After age forty, annual skin exams by a physician
Routine use of sunscreens and avoidance of excessive amounts of sun
In addition to cancer screening, every woman should remain updated on her vaccinations. Besides the childhood primary immunizations the following should be maintained:

Tetanus toxoid - a booster shot every 10 years for all adults
Pneumococcal vaccine - all adults over sixty-five or those that are immunocompromised
Influenza vaccine - given yearly
Hepatitis B vaccination - given to adults considered high risk (consult a physician)
Varicella (chicken pox) vaccine - for adults with no history of chicken pox (not for the immunocompromised)
Finally, as part of the yearly visit to the physician, attention should be given to the following areas:

Blood pressure, height and weight checks
Glucose (blood sugar) screening
Cholesterol screening - beginning age 45
Tobacco cessation (if applicable)
Regular exercise (at least 30 minutes of aerobic exercise 3 or 4 times per week)
Adequate calcium intake for osteoporosis prevention (calcium supplements will likely be needed if your diet is not rich in calcium)
Maintain a low fat diet and limit consumption of red meat
Again, these are basic guidelines and every woman should discuss her past, present and future health issues with her physician to tailor them to her individual needs.

MANAGING FATIGUE: A GUIDE FOR INDIVIDUALS WITH CANCER
Fatigue is an unpleasant feeling of weariness, tiredness, or lack of energy that interferes with everyday activities.

Everyone feels tired at certain times. However, individuals with cancer may feel excessively tired or fatigued any time during the day, even upon awakening, and it may not disappear with rest or sleep. Fatigue is the most common problem that occurs during cancer treatment and after treatment.

The cause of cancer treatment-related fatigue is not entirely clear. However, problems such as anemia, stress, insufficient diet, sleep disruption, as well as cancer treatments and other factors are some of the causes. Treatments are available for anemia, nausea, vomiting, pain, depression, and other side effects from cancer. It is important to discuss your fatigue and other symptoms with your nurse or doctor.

YOU ARE NOT ALONE! Remember, it is normal and expected that persons with cancer will feel fatigued at some time. Although you should expect fatigue, you can learn to manage it, reduce your stress and feel more positive about your life!

GUIDELINES FOR MANAGING FATIGUE
Conserving Energy
You can do more be spreading your activities throughout the day. Take rest breaks between activities. Do not do more than you can manage and avoid heavy lifting. Save energy for the things you want to do. Let other people help. It will make your life easier and it will make others feel good.

Working Outside the Home
Talk to your supervisor and selected coworkers about your fatigue so that they can understand. If possible do some of your work at home so that you can pace yourself. Schedule the tasks that require attention and detail for energized times of the day. Trade duties if certain tasks are too fatiguing. Take a "sick day" from work when you are especially fatigued. Ease yourself back into work gradually when returning from sick leave.

Sleeping and Resting
Create a soothing, restful setting for sleep. Set up regular bedtime and waking routines. Plan rest periods or short naps to restore your energy during the day. Arrange relaxing or enjoyable activities when you are trying to rest. If these suggestions are not helpful, please talk with your doctor or nurse about medications that can help you sleep better.

Keeping Active
Include light exercise in your daily routine (but not too close to meals or bedtime). While getting enough rest is important, not enough activity can make you feel more tired! Plan periods of activity each day along with some rest periods. Include other people in your daily plans. A simple exercise program may help you feel better. For more information about beginning or continuing an exercise program, talk to your doctor or nurse. Remember some days are going to be easier than others. Pushing too hard and ignoring fatigue may slow the healing process.

Eating Well
Eating a balanced diet during your treatment and recovery period will help you feel stronger. Eat small meals throughout the day instead of large meals. Choose foods high in protein and low in fat. Pay attention to your body. If nausea makes certain foods unappealing, then ask about appropriate food substitutes. Ask your doctor for a referral to a dietician. Get help with food shopping and meal preparation.

Reducing Stress
Many activities can reduce your level of stress and increase your ability to relax. Crafts, hobbies, and reading serve to relax and distract you from more stressful thoughts. Do fun things with your friends. Stay involved in some social activities. Music or warm baths can be soothing and relaxing. Commune with nature. A friend or family member may perform body message. Join a support group. Try relaxation tapes from the local library or bookstore. Meditation can lead to feelings of peacefulness. Keep a journal. Thinking positively by focusing on healing and recovery. Be patient with yourself. Reward yourself. Make long-term goals.

In Summary
Remember, although fatigue is a common and expected problem for people with cancer... You Can Do Something About It! If you need help, consult your doctor or nurse.

Menopause
While most women between 45 and 60 struggle with issues surrounding menopause, symptoms associated with menopause present additional concerns for breast cancer survivors. In the recent decade, we have witnessed a increased reliance upon the use of estrogen to combat these symptoms and prevent disease, however it is unclear if estrogen has a particular risk for you as a breast cancer survivor. While some studies have been completed within the past five years, new information about the role of estrogen as well as hormonal and natural treatments for the symptoms of menopause are far from conclusive. And, most importantly for you, there remains no conclusive evidence about the role of estrogen in promoting breast cancer. Physicians often interpret these studies differently, and some may feel passionate about the matter.

There may be some consensus that the growth of some breast cancers may be promoted by estrogen. However, hormone replacement therapy (HRT) has not significantly increased the number of cases of breast cancer among the general public. Recently, a large analysis of 51 previously published epidemiologic studies on breast cancer was done. The combined data included 54,000 post-menopausal women, a third who have had breast cancer at a median age of 60. It seems that there was no increased risk of breast cancer in women who had made use of hormone replacement more than five years earlier. However, as much of these results are inconclusive, women who are considering HRT should take into account other factors. For instance, HRT may offer some benefit to women who might be at risk for heart disease, osteoporosis, elevated cholesterol, and Alzheimer's disease (e.g., strong family history). HRT may also relieve some post-menopausal symptoms, like hot flushes, vaginal dryness, and depression. It may also lower the risk of developing colon cancer.

While HRT has many benefits, it also not without risks. Consequently, decisions must be individualized. Also, you should discuss with our doctors other ways (that may or may not include medications) to minimize these risks factors and symptoms from menopause. Often, these will include non-hormonal medications. However, the effectiveness of many of these interventions remains unproven. Women who exercise regularly have fewer hot flashes than women who do not exercise. Deliberate deep breathing may reduce the frequency of hot flashes by 40 percent. Herbs and acupuncture may help some women, although solid scientific studies are lacking. Also, it may be risky to use herbs to treat hot flashes. Many preparations have pro-estrogen activity (i.e., may cause breast tenderness and blood clots).

Various medications also will help control hot flashes, like alpha-adrenergic agonists (clonidine hydrochloride - Catapress®, and Lofexidine). These drugs have potential side effects: e.g., dry mouth, insomnia, headaches fainting, nausea, and dizziness. Other classes of drugs include antidopaminergenic agents, alkaloids (ergotamine tartrate and belladonna), and anti-depressants help some women. However, they all have potential side effects and must be carefully discussed with your doctors. Dietary supplements containing soy protein also seem to reduce the frequency of hot flushes. However, some women complain of gastrointestinal side effects. Another substance (ginkgo) may also interfere with your normal blood coagulation.

Calcium supplements, vitamin D, and exercise form the basis of the prevention and treatment against osteoporosis. Aside from estrogens, other drugs may be helpful as well (e.g., alendronate - Fosamax®, raloxifene - Evista®, and the hormone calcitonin.) Ultimately, the most important thing before you start taking any medications on your own is to have a careful conversation with your doctors, as different interventions work better for different women.