Now that treatment is over

• it is time for healing to begin. Your breast is likely raw if you just finished radiation treatment. If you had chemotherapy, it is likely that your hair is gone. You have either gained or lost weight. In fact, you likely feel worse at the end of treatment than you did when you were first diagnosed.
• It will take longer than expected to return to feeling normal - and much longer than you wish.

Expect physical exhaustion and ongoing symptoms after the end of treatment. You may experience:

• Fatigue continues, possibly for at least as long as the time between diagnosis and end of treatment. For tips about coping with fatigue, see: Fatigue And How To Deal With It
• Swelling in the arm (lymphedema) develops. There are steps to take to prevent lymphedema, or to lessen the effects if it does occur. See How to Prevent and Control Lymphedema
• After chemo, you have aches and pains such as muscle stiffness and joint pain
• Menopausal symptoms such as vaginal dryness or hot flashes. 
  • Anti-depressants and other drugs may reduce the frequency and intensity of hot flashes.
  • For vaginal dryness, ask your doctor about a combination of vaginal moisturizer and a lubricant. Also ask if he or she recommends a particular brand.
• Arthritis. 
• Headaches.
• Your breast and surrounding area continue to be sensitive.
• Numbness in the chest wall, arm and/or armpit.
• Limited arm or shoulder motion.
• Uniary track infections. (Drink a lot of cranberry juice. Call your doctor right away if you develop painful urination.)
• Body image problems.
• Emotional disturbances affecting mood. (For information about coping with various emotions, click here).
• If sexuality is a problem, give it time until it returns to normal. In the meantime, there are other ways of enjoying intimate physical contact. (To learn more, click here.)
• For specifics, see:
  • What To Expect And Do After Breast Surgery
  • What To Expect And Do After Chemotherapy
    
  • What To Expect After Radiation Treatment  
    

Get a cancer follow-up plan.

• The National Cancer Institute recommends that everyone should have a follow-up plan. If you do not have a follow-up plan, get one from your cancer doctor or from a nearby Survivor clinic at an NCI certified cancer center. You can locate an NCI certified cancer center at: cissecure.nci.nih.gov/factsheet . Your insurance is likely to cover these services.
• A follow-up plan describes your diagnosis and treatment. It also tells you and your non-cancer doctors what to look for that could be a long term result of your treatment or indicate a return of your breast cancer.  To learn about a follow up plan, click here.

Comply with drug regimens. Saving money should not be the only factor when determining where to purchase medications. For information, see: How To Comply With Drug Regimens. Save $ When Purchasing. Store And Dispose Of Drugs

Ask your cancer doctor when to call if any of the symptoms you have been warned about appear, or if other symptoms show up. Report all unanticipated changes in your health to primary care physician as well as to your oncologist. The symptoms could relate to your breast cancer, or to something else entirely.  An update by fax or email will do.   

Speaking of your doctors:

• Decide which of your doctors is in charge of your overall health. It could be your primary care doctor, your gynecologist or one of your oncologists. Be sure he or she agrees to the position. Make sure all doctors report notes about each appointment to your primary doctor.
• Prepare for follow-up visits with your doctors.
  • There are likely to be follow up visits with each of your oncologists during this period of time. There are usually also periodic imaging tests.
  • It is important to show up for all follow-up appointments and tests.
  • As with all doctor appointments, it is advisable to prepare for your appointments. For instance:
  • Keep track of your symptoms, if any. (We provide a Symptoms Chart to make it easier).
  • Keep track of questions as they arise so you don't forget them. (You can do that on our Prioritizer. Then, before you go to the appointment, you can reorder your questions to your priority with the click of a button).
• If you haven't already, learn how to maximize your time with your doctor.
• If you didn’t like your experience with your oncologist, and can’t get over glitches in your relationship, consider changing doctors. Your oncologist will be in your life for a long time – possibly for the rest of your life.
• Depending on what works for you, consider seeing all your doctors on one day, or purposefully spreading visits so you have set occasions to ask questions and talk about symptoms that don’t seem serious enough for an immediate call.
• NOTE: It is advisable to keep your own copy of your medical records for future reference and in case you see a new doctor.

If you are overweight, lose the extra weight.

• Studies show that women who are overweight or obese have an increased risk for recurrence of breast cancer.
• As you know, the key to weight loss is to consistently burn more calories than you consume by eating and drinking. Studies show this is not so easy because we tend to underestimate the amount of calories we consume and overestimate the amount of exercise.
• A simple solution is to keep a food diary. It doesn't have to be fancy. American Cancer Society tells you how to construct and keep a diary. Click here .

Exercise can help to resolve physical and emotional dificulties.  

• Speak with your doctor about what exercise you can and cannot do, and when. There are recommended exercises for after breast surgery.
• Consider asking for a referral to a phsyical rehabilitation program or to a physical therapist. Either or both may be covered by health insurance.
• Click here for information about exercises after breast surgery.

Take precautions. Women who had breast cancer are at increased risk for developing a second breast cancer. 

• Give yourself a breast exam monthly.
  • Most recurrences are identified by women doing their own breast exam.
  • If you have a question how to give yourself an exam, see the American Cancer Society web site: "How To Perform A Breast Exam" at www.cancer.org.
  • If you find anything suspicious, call your cancer doctor right away. It may not be anything. If it is, the earlier you find out, the better.
• Review your breast cancer follow-up plan which describes actions to take and symptoms to watch for. (If you didn’t get one, ask your oncologist for one.)
  • Read the plan carefully to be sure you understand what it says.
  • Ask about any parts of the plan that are not clear to you.
  • Give a copy of the cancer follow-up plan to your primary care doctor.
  • Report unanticipated changes in your health to both your oncologist and primary care physician.
  • Keep all appointments noted in the follow-up plan. There is a reason each one is there. “Feeling great without symptoms” is not a reason to miss a follow-up appointment (nor is a symptom you fear may be a recurrence).

Adopt a cancer prevention diet and lifestyle. For instance,

• If you smoke quit. It helps reduce the odds that cancer will reappear. You’ll also reduce your risk of heart disease and other smoking related illnesses.
• If you are overweight, now is a good time to lose the extra weight..
• To learn more, click here

Take care of your mouth.

• Infections can easily spread from your mouth through the rest of your body.
• Practice good oral hygiene. Brush your teeth after every meal with a soft toothbrush and at bedtime. Use a toothpaste with flouride in it. Floss at least once a day.
• Infections in the mouth can also affect healing. Check your mouth every day for changes or problems. For instance, look for bleeding or a sticky, white film, lumps, soreness or swelling. Call your dentist if any of these symptoms appear. They may indicate infection.
• See your dentist regularly, at least two times a year.  For more information about oral care, click here.
• NOTE: A healthy diet will help prevent tooth decay.  Avoid foods that are high in sugar content. 

Learn which symptoms that may appear should prompt a call to your doctor. Report unanticipated changes in your health to both your oncologist and primary care physician. 

If your tumor was estrogen-receptor-positive;

• it is likely that your cancer doctor will recommend that you start hormonal therapy.
• Hormonal therapies are systemic treatments. They treat the whole body. For women who are estrogen-receptor-positive, estrogen stimulates the growth of cancer cells. Hormonal therapies aim to reduce or eliminate the possibility that estrogen will gain access to any cancer cells.
• Tamoxifen has historically been the most commonly prescribed hormonal therapy but there are other treatments to consider. Discuss the pros and cons of each treatment with your cancer doctor. He or she will alert you to side effects to watch for and tips for coping with each.
• To learn more about hormone therapies, see the American Cancer Society: www.cancer.org.

Discuss gene testing with your ongologist.

• There are two genes which increase the risk of breast cancer returning. If you have not been tested, speak with your oncologist about whether to do it now. If you have the gene, you may want to consider taking such steps as having a bilateral mastectomy (having both breasts removed).
• According to the American Cancer Society: Doctors will sometimes suggest patients have genetic testing if others in their family have had a certain disease. If you have any of the following, you might consider genetic testing for yourself:
• Several first-degree relatives (mother, father, sister, brother) with cancer, especially the same type of cancer.
• Family members who developed cancer at a young age.
• Close relatives with rare cancers.
• A known genetic mutation in the family (from one or more family members who had genetic testing).
• The American Cancer Society has an extensive discussion about gene therapy, including what genetic testing is, who should get it, payment, what happens during the process (including counseling), and what to do if the test shows you have an increased risk. To learn more, click here .

Continue to see your primary care doctor and other specialists that don't relate to breast cancer.

• Your primary care doctor is charged with overseeing your entire medical condition, helping you keep your system in maximum disease fighting shape, and for being on the lookout for health conditions.
• If your relationship with a doctor is not ideal, try to fix it. If it becomes difficult for you, consider looking for another doctor.
• Prepare for follow up visits with your doctors as follows:
  • Keep track of your symptoms, if any. Survivorship A to Z provides a Symptoms Diary to help. (A push of a button turns it into an easy to read graph to save precious time with your doctor).
  • Keep an ongoing list of questions and concerns so you don't have to try to remember things when you're under the pressure of a short period of time with the doctor. We provide a Prioritizer to help.

With respect to drugs:

• Comply with drug regimens. Don't take a drug holiday without checking with your doctor first.
• Save money when purchasing drugs. For instance, shop around.
• Store and dispose of drugs safely.

Consider complimentary treatments.

• Complementary treatments such as massage or Yoga can help you feel in control.
• Complementary studies are now being studied by the National Cancer Institute’s Center For The Study Of Complementary Medicines. For information about any treatment you want to consider, check www.nccam.nih.gov  or call 888.644.6226 (Monday-Friday 8 – 5). Be particularly careful about treatments that you ingest or otherwise take into your body.
• If a treatment seems too good to be true, it likely is. For example, a diet or treatment which promises to prevent the recurrence of breast cancer. Watch for fraudulent treatments at Quackwatch.com
• Keep in mind that if a treatment didn't work, there are alternatives to consider.

Consider getting a pet. In addition to helping you feel good, a pet may prolong your life.

• Studies show that pets are good for your physical and mental health. They can be particularly helpful in reducing stress levels during this time of transition.
• If you own a dog, walking the dog will help you get back to exercising. 
• The pet does not have to be a dog or a cat to have beneficial effects.
• For information about choosing the right pet for you, care for the pet when you can't take care of it, how not to become sick from your pet, how to travel, and much more, see Pets 101

Bring humor into your life. "A laugh a day keeps the doctor away" -- or at least makes you feel better. To learn how to bring humor into your life, click here.

Don’t let a fear of recurrence keep you from taking any of the steps described in this article. (For information about dealing with emotions such as fear, see Breast Cancer: 0 - 6 Months: Emotional Well Being)

In case of an emergency or disaster: 

• Take a few moments to think about what to do if there is a medical emergency, or how to continue medical care if there is a disaster. 
• In case you need it in the future, keep in mind that we provide information about how to maximize time in a hospital, including staying safe.

Advance planning

• If you haven’t already, now is the time to assure that you keep control of your medical care even if something happens and you become unable to speak for yourself. The documents you’ll need to think about are called Advance Healthcare Directives and Advance Mental Health Directives. They are free and easy to execute. For more information.  (While you are at it, a Will helps keep control over what happens to your assets if you die. Our article includes information about how to get an inexpensive or free Will. Click here.)

Finances  While treatment may be over, medical expenses may linger or new ones may be incurred. See: How To Maximize Use Of Your Health Insurance and Breast Cancer: Post Treatment: Finances

For more information, see:

• Where Are You Now? What The Doctors Say and What It Means  
• How To Choose A Bra After Breast Cancer Treatment  
• What To Do If The Treatment Didn't Work  
• What To Do If Your Relationship With Your Doctor Is Not Ideal  
  
• How To Consider What To Do In Event Of A Medical Emergency  
  

“You’re cured” or “You’re in complete remission”:   Both of these expressions mean that your doctor cannot find any cancer. They do not mean that you are cured for good. Get a lung cancer follow-up plan from your doctor – and keep to the appointments and tests described in it. Early detection of a return makes positive treatment results more likely. (For information about follow-up plans, see the document in To Learn More). 

 “You’re in partial remission”: 

• The tumor(s) responded to treatment. The tumor is either smaller or stopped growing. The tumor is not eliminated completely.
• Speak with your doctor and other specialists to find out if there is another treatment you should be taking.
• At the least, get a cancer follow-up plan from your doctor. (For information about follow-up plans, click here.)

 “The cancer is unchanged”: The tumor did not decrease, but is no longer growing either. Speak with your doctor and other specialists to find out if there is another treatment you should be taking. Ask about cutting edge treatments that are only available through a clinical trial. At the least, get a cancer follow-up plan from your doctor. (For information about clinical trials and follow-up plans, see the documents in To Learn More). 

“Your tumor is still growing”: The treatment did not stop tumor growth. Speak with your doctor and other specialists to find out if there is another treatment you should be taking – including cutting edge treatments available through clinical trials. At the least, get a cancer follow-up plan from your doctor. (For information about clinical trials and follow-up plans, see the documents in To Learn More). 

“The cancer has metasticized”: During treatment, your doctor may learn that your cancer has spread beyond the initial site. Speak with your doctor and other specialists to find out if there is another treatment you should be taking – including cutting edge treatments available through clinical trials. For information about clinical trials, how to find them and how to assess them, click here.

Lymphedema is common after breast surgery. There are steps you can take to prevent it. 

Lymphedema is an accumulation of lymph fluid that may cause swelling in the arm following removal of lymph nodes. Unable to drain, the lymph fluid remains in the soft tissue where infections can develop. It is advisable to do what you can to avoid lymphedema which can be painful. For information about how to prevent and to control lymphedema if it does occur, click here.   

Soreness

• The area around the surgical site may continue to be sore for a while.
• There may be some numbness in your underarm or back. 
• If you had a modified radical mastectomy, you may feel numbness in your chest wall which should go away within a few months.

Emotional

You are likely to experience mood disturbances and body image problems. For information on dealing with the emotional effects of treatment, see: Breast Cancer: Post Treatment 0 - 6 Months: Emotional Well Being.

Call your doctor if:

• The site becomes infected
• Soreness lingers longer than expected.

When to restart activities including exercise

• Experience indicates that women recover most quickly if they return to normal activities as soon as possible after surgery.
• For exercises to consider after breast surgery, click here.
• When you can resume work depends to a large degree on the type of work you do. Your doctor will advise you when you can resume work.
• Start aerobic exercises as soon as your doctor permits. 
  • The simplest aerobic exercises are walking, jogging, running and bike riding.  There are machines such as treadmills and stairmasters. Indoor and outdoor sports are generally aerobic exercises.
  • Start aerobic exercise slowly and gradually build up as your capacity expands. Push yourself a little, but not too much. Setbacks are discouraging. If you experience a setback, take some time off. When you resume, start at a lower level and gradually build back up.
  • As with all exercise, look for exercise that you enjoy - and check with your doctor before starting a new exercise. For more information, see: Exercise
• Avoid exercise that involves overhead movement, such as tennis. (Wait until your wound has healed completely before returning to the tennis courts).
• Keep in mind that it may take weeks or even months to recover your energy and strength. Most women can return to full activities after a few months.

Additional treatments  

If you haven’t already, even if your surgeon doesn’t bring it up, consider consulting with a medical oncologist to find out if he or she would recommend additional treatment based on the results of your surgery.

If surgery showed that the cancer has spread beyond the breast, radiation and/or chemotherapy may be recommended. 

Most side effects of chemotherapy don't do any lasting harm and will gradually go away after treatment finishes.

If you had chemotherapy, it is likely that your hair is gone and that you have either gained or lost weight. In fact, you likely feel worse at the end of treatment than you did when you were first diagnosed.

While it will happen eventually, it will take longer than expected to return to feeling normal - and much longer than you wish.

Don't be surprised if:

• After chemo, you have aches and pains such as muscle stiffness and joint pain.
• Arthritis develops suddenly (it may have been about to occur in any event).
• You abruptly transition to menopause with hot flashes. They will eventually become less frequent and intense. Eventually they will stop all together.
• You have headaches.
• Fatigue continues for at least as long as the time between diagnosis and end of treatment. For tips  for coping with fatigue, click here.

After radiation treatment ends, there is likely to be a continuation of side effects such as fatigue. The breast may also be swollen or feel heavy. There is likely to be a redness in the skin and a tenderness. These effects generally go away within a few weeks after the end of treatment.

To avoid irritating the affected area, use only lukewarm water and soap.

Do not put heat or cold on the affected areas or expose them to the sun.

NOTE: For information on coping with fatigue, click here.

Treatment for breast cancer is frequently followed by a regimen of chemopreventive substances that can help prevent or delay a recurrence of your cancer or development of another cancer. For example, tamoxoxifen may be prescribed for up to 5 years after the end of breast cancer treatment.

It is preferable to think of these drugs are part of your treatment and to do everything you can to take the drugs as prescribed. (This is known as "adherence" or "compliance.") There are aides to help you remember when to take drugs.

• Before agreeing to take any drug, learn about the risks as well as the benefits.
  • We provide questions to ask before agreeing to take any drug. 
• Do what you can to avoid medical errors
  • Start by obtaining a readable doctor’s prescription. If you can't read it, neither can the pharmacist.
  • Check the drug you receive against the prescription and make sure it looks like you expect. 
• Avoid overmedication. 
  • Overmedication is all too common. Ask your doctor if a lower dose will do the same job - particularly for drugs you continue to take over time.
• Carry a list of your drugs all the time. Emergencies happen. Plus the list will be helpful each time you see a doctor or fill a prescription. We provide a form List Of Medications.
• Have each newly prescribed drug checked for negative interaction with other drugs you are taking . Do not assume that this will happen automatically. 
• Over-the-counter medications, supplements and vitamins need to be treated as if they are drugs.
  • Just because they are sold without a prescription does not mean that there is no risk.
• Take care if you use herbs, vitamins or other supplements.
  • They are not subject to FDA approval. Therefore, there is no guarantee about their safety or effectiveness. 
  • There is not even a guarantee that the same mix of ingredients will be in each bottle – even for bottles from the same manufacturer.
  • It may feel like insurance company money is other people’s money, but expenses show up in your increased premiums.
• Do not let price be the sole factor in determining what you want or where to obtain the drugs. 
  • For example, what happens if you need a refill in an emergency? 
  • Also keep in mind that a pharmacist can be a very important part of your health care team.  If necessary, you may be able to obtain drugs for free or very low cost.
• If the current drugs on the market don’t satisfy your needs, there may be newer drugs to consider that are still being tested for safety. Access to these drugs is through clinical trials – controlled tests where use of the drug is medically monitored. It is essential that you be fully informed before entering a clinical trial.
• Live with drugs wisely.
  • Comply with prescribed orders. Non-compliance can be harmful. Time tested tips help if you have difficulty complying.
  • Do not share drugs.
  • Store drugs correctly (not in a medicine cabinet in the bathroom).
  • Travel well with your drugs. Carry a copy of your prescription. Carry an extra supply in case you get delayed.
• Stay open. The decisions you make regarding medical care and treatment may change over time.

Even if you have health insurance, it is likely you will have to pay a portion of the cost.

• You can save money by purchasing drugs wisely. See Drugs: How To Save Money When Buying Or Using
• If a health insurer declines to pay for use of a drug because it is "off label" (a use other than the use approved by the FDA), appeal with your doctor's help. Be persistent.
• To learn how to appeal, click here.
• Help is available if you cannot afford prescribed drugs. Click here.

NOTE: If you have side effects which are difficult for you, speak with your doctor about reducing dosage, switching medicines or joining a clinical trial. 

If the treatment didn't work:

• Ask your cancer doctor about other treatments that may work, including cutting edge treatments only available in clinical trials.
• Consider doing your own medical research, ask a family member or friend to do it for you, and/or hire a medical research service. Some services even make a recommendation in addition to providing facts.
• Contact an NCI designated comprehensive cancer center for another opinion (a "second opinion."). You can locate an NCI center at cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html.
• Consider complementary treatments to learn if any can be helpful to you.
• Consider whether you want to undergo another treatment. There may come a time when you no longer feel that you want to enter another treatment. There is no right or wrong in this situation. You are in charge of your body. The choice is yours.

For information, see:

• Medical research services
• Medical Research (and how to do it)
• Second Opinion 101
• Clinical Trials 101
• Nearing End Of Life
• Complementary and Alternative Medicine

While emergencies can happen to anyone, you may be more vulnerable to emergencies because of your health history. It is suggested that you take a few minutes to cover yourself "just in case."  You do not have to take all these steps at once. Perhaps do one a day. It is helpful to give yourself a deadline. 

Consider the following:

• The types of emergency care available near home, where you work, and other places in which you spend a lot of time, and when to go to which resource. This includes deciding which emergency room to go to if you need the resources of an emergency room. (While you're at it, learn how to maximize your time in an Emergency Room. See the document in "To Learn More.") 
• How and what to communicate to first emergency responders.
• In case you become unable to communicate, wear a medical alert, carry a computer flash drive or a card to let emergency first responders know about your medical condition, treatment and/or medications. 
• The financial and legal steps to take now so you are prepared in the event of a medical emergency.
• How to get through a disaster.
• How to prepare for medical emergencies that may come up during travel.
• What to do if you have underage children and cannot care for them because of a medical emergency.

For information about each of these subjects, see the document in "To Learn More."

If it would be helpful, use the Survivorship A to Z prioritizer to list the steps you want to take. You can then number them in order of priority. A push of a button will change the order of the list to your priority. See "To Learn More."

NOTE: While speaking about emergencies, be sure to protect your property and pocketbook in the event of a loss with Homeowners Insurance and Automobile Insurance. Information about what to look for, how to minimize cost, and how to file claims, is contained in the documents in "To Learn More." 

Just like any relationship, your relationship with your doctor may have its ups and downs.

 If problems arise in your relationship with your doctor, see if they can be worked out.

• Talk them through with your doctor. 
• If there is no time for a discussion in a normal session, ask when you can speak with the doctor at another time – in person or on the telephone.

 If you cannot get a satisfactory resolution of the problem, consider whether it is enough of a problem to cause you to look for a new doctor.There’s no right or wrong here. Only what works for you.

• Think through your criteria in choosing the kind of doctor in question (for instance, primary care doctor or specialist.)  
• Consider what other doctors may be available to you. 

If you feel your doctor has harmed you, and you want to do something about it, there are alternatives to consider.

For information, see:

• Doctors 101 (Choosing, Working With Effectively, Switching, Paying  For)
  
• How To Deal With Bumps In The Doctor/Patient Relationship
  
• How To Level The Playing Field With A Doctor
• If You Have Been Wronged By A Doctor

Your breasts are likely to be different now than they were before.  With the right style and fit, there is no reason for people to know you have a lumpectomy or a mastectomy.

There are experts who can help you choose a bra. Many department stores and some pharmacies provide this service free of charge.

If you wear a prostheses, do not limit yourself to mastectomy bras which have a sewn in pocket.  You or a seamstress can sew a pocket into any bra. Just make sure the prosthesis fits properly in the bra in order to give you the proper shape and comfort.

Women who have undergone this experience suggest that  you consider purchasing at least one sexy bra to help you feel sexy and beautiful from within.

Check your insurance before you go shopping to see if it will cover bras. If it is not clear from reading the policy, call the insurance company. The number is listed on your insurance card.

Think about taking a friend with you who can encourage you and help make shopping a positive experience.