Care Plan Results for Breast Cancer

Risks Related to Medications

A Lack of Knowledge

There are many medications of which we do not know the long term effects. Because of the combination of multiple drugs for most cancer treatments, it is sometimes difficult to be certain which medication is the cause of a long term effect. Research is continuing and new information may become available. You should periodically talk to your healthcare team about new information or look for new information in reliable journals and/or internet sites.

In addition, there have been many new therapies in the last ten years, including many of the biologic therapies, monoclonal antibodies and targeted therapies. We may not know the long term effects of these medications for many years. As a survivor, you should be an active participant in your healthcare and keep an ear out for new information.

• Many cancer treatments today have not been available long enough to determine what effects they may cause in years after treatment.
• Always let your healthcare team know if you notice any new or worsening symptoms. Remember, you know your body best.
• Periodically look for new information about your treatment and talk to your healthcare team to see if they have anything new to report. 

 

Risk of Developing Cataracts

The risk of developing cataracts is linked to busulfan, corticosteroids (dexamethasone, prednisone), tamoxifen, anastrozole and radiation therapy involving the eye (including total body irradiation). Survivors should report any symptoms of cataracts and have an eye exam performed by an ophthalmologist every few years. Symptoms of cataracts include: blurry vision, light sensitivity, poor night vision, double vision in one eye, seeing halos around objects, needing brighter light to read or fading or yellowing of colors.

• Have an eye exam by an ophthalmologist every 1-2 years
• See your doctor if you experience any cataract symptoms
  • Blurry vision
  • Light sensitivity
  • Poor night vision
  • Double vision in one eye
  • Seeing halos around objects
  • Needing brighter light to read
  • Fading or yellowing of colors

Risk for Cardiac (Heart) Problems Related to Anthracycline Chemotherapies

The group of chemotherapy agents called anthracycline antibiotics are known to cause specific cardiac toxicities, including cardiomyopathy (weakening of the heart muscle), arrhythmias (rhythm abnormalities) and left ventricle dysfunction (causing heart failure). The risk of developing one of these problems is tied to the cumulative (lifetime) dose a person has received, but even low doses can lead to abnormalities. Toxicity can develop anywhere from shortly after completing chemotherapy (called chronic) to decades later (called delayed). For example, it is known that cumulative doses of doxorubicin greater than 550mg/m² can lead to cardiac toxicity, but doses as low as 250mg/m² can result in subclinical cardiac changes. Subclinical changes can be detected on tests such as ECG, echocardiogram and/or MUGA scan, but they do not cause symptoms for the survivor. The doses of the various anthracycline agents are not equivalent, so you should discuss the dose you received and your risk with your physician.

Risk is further increased for those survivors who also received radiation to the chest or those who received high dose cyclophosphamide (dose levels used in bone marrow and stem cell transplant preparation). In addition, increased age, history of coronary artery disease or other heart disease, and hypertension increase the risk of developing cardiac toxicity from chemotherapy. Survivors should maintain healthy lifestyles as smoking, drug use, obesity, sedentary lifestyle and poor dietary choices can increase the risk of cardiac disease. 

Cardiac toxicities can cause symptoms such as shortness of breath (with or without exertion), orthopnea (difficulty breathing when lying down), chest pain, palpitations, exercise intolerance, dizziness/lightheadedness or edema (swelling of the extremities). In younger survivors (under age 25), cardiac symptoms may present as abdominal symptoms such as nausea and vomiting. Annual history and physical by a healthcare provider should include a cardiac exam and review of possible symptoms. Survivors who received anthracyclines (any dose) should have their left ventricular function evaluated at baseline with an echocardiogram or MUGA (nuclear imaging radiology exam of heart function) scan, as studies have found many people with abnormalities did not exhibit symptoms. Repeat evaluation should be performed periodically (for higher risk individuals) or if symptoms develop or worsen.

• Maintain healthy lifestyle
  • Avoid smoking
  • Avoid drug use
  • Maintain a healthy weight
  • Exercise regularly eat a well-balanced diet
• Have an annual physical exam that includes a cardiac exam
  • Consider periodic cardiac studies (echocardiogram or MUGA)
  • Monitor and manage blood pressure and cholesterol levels.
• Report the following symptoms to your healthcare provider
  • Shortness of breath (with or without exertion)
  • Difficulty breathing when lying down
  • Chest pain / heartburn
  • Palpitations
  • Dizziness/lightheadedness
  • Swelling of the arms or legs
• If you received chemotherapy under age 25
  • Report symptoms of nausea and vomiting

Risk of Developing Osteoporosis

Osteoporosis and osteopenia (the precursor to osteoporosis) are decreases in bone density, which increases the risk of fracture of the affected bones. Long term use of corticosteroids (dexamethasone or prednisone, > 5mg per day for more than 2 months), receiving chemotherapy medications (including methotrexate, ifosfamide, cytoxan, fluorouracil and interferon alpha) or radiation to weight bearing bones (spine, hips, legs) all increase the risk of developing osteoporosis.

Women who develop premature menopause, have their ovaries removed before menopause or those who take aromatase inhibitors (anastrozole, letrozole and exemestane) are at increased risk for osteoporosis. Men who receive hormone therapy for prostate cancer or undergo orchiectomy are at greater risk. In addition, patients who have undergone gastrectomy (removal of the stomach) are at increased risk to develop osteoporosis.

As for lifestyle risks, smokers, people who consume excessive alcohol and those who do not participate in weight bearing exercise have an increased risk of developing osteoporosis. Therefore, it is very important that survivors not drink alcohol or smoke. In addition, survivors should engage in weight-bearing exercise such as walking, weight lifting, riding a stationary bicycle, jogging, dancing, and any exercise where the legs are supporting the body's weight. These efforts, combined with increasing calcium and vitamin D in your diet and taking calcium and vitamin D supplements, will greatly help to reduce your risk of developing osteoporosis.

Survivors at risk should have adequate intake of calcium (1200-1500mg total per day, taken in divided doses) and vitamin D (400-800 international units per day if under age 50, and 800-1000 international units per day if over age 50).  Calcium supplements are an easy way to get the recommended daily amount and come in 2 forms: calcium carbonate and calcium citrate. The body does have some trouble absorbing large amounts of calcium, so supplements should be split into 2 or more doses per day. Calcium carbonate requires stomach acid to be absorbed by the body, therefore people that take acid reducers (such as Zantac, Tagamet) and/or proton pump inhibitors (such as Prilosec, Prevacid, etc) should use calcium citrate. If you have trouble tolerating your calcium supplement, talk to your doctor or nurse; there may be another formulation you can tolerate more easily. It is important to take Vitamin D with the calcium supplements because it helps your body to absorb calcium better. Survivors should talk to their healthcare provider about screening with DEXA scan (a test used to assess bone density) and options for treatment, if necessary.

• Avoid smoking and excessive alcohol intake.
• Perform weight bearing exercise 2-3 times per week.
• Calcium intake of 1200-1500mg per day plus Vitamin D 400-800iu or 800-1000iu per day (either in dietary intake or supplements).
• Consider screening with DEXA scan.

Risk of Liver Toxicity

Hepatic dysfunction is abnormal functioning of the liver. This can range from having abnormal results on a blood test with no symptoms to cirrhosis or liver failure. The majority of complications tend to occur during or soon after therapy and patients who receive methotrexate, mercaptopurine, thioguanine, BCNU (carmustine), plicamycin and tamoxifen are at highest risk of developing liver problems. Toxicities may resolve over time, but in some cases, can result in chronic liver problems.

• Avoid alcohol.
• Obtain blood work annually to check liver function while on therapy.

Skin Toxicities

Some chemotherapy agents will cause the skin to darken or lighten in spots or cause the nails to change color or fall off. While this typically happens while on therapy, these effects can become chronic. Good hygiene and skin care, including washing with a mild soap and water, hydrating lotions for dry or scaly skin, and protecting any open skin wounds can all aid in recovery from these toxicities.

• Practice good hygiene and skin care using mild soaps and hydrating lotions.
• Protect open skin wounds and report any signs of infection (redness, tenderness, drainage) to your healthcare team. 

Understanding

Many survivors who have previously received or are currently undergoing chemotherapy report experiencing cognitive changes, often referred to as "chemo-brain." These changes include difficulty with short term memory, multi-tasking, new learning, reading comprehension, working with numbers and a decrease in concentration ability. For many years this was attributed, by physicians and researchers, to depression or anxiety over the diagnosis and treatment of cancer. More recently, researchers have begun to study and document what survivors have been saying all long; cognitive changes after chemotherapy are real. Although we are not yet able to pinpoint whether only certain chemotherapies are responsible, it seems certain that the effects are cumulative. That is, those who receive more chemotherapy tend to experience greater deficits. Studies have found that cognitive ability can improve over time in some survivors, but deficits are still present in many long term survivors, years after treatment.

Some medications are being studied as potential treatments for cognitive changes, but there is not yet enough data to support their use. Some of the agents being studied include: methylphenidate (Ritalin), modafinil (a medication approved to treat narcolepsy), various antidepressants, herbal therapies, such as ginkgo biloba, ginseng and certain amino acids. Cognitive rehabilitation programs are structured programs utilizing exercise, tasks that use memory and puzzles to "rehabilitate" one's mind. These programs are typically used for people with brain injuries, but therapists have tailored programs for cancer survivors. Bookstores and websites offer memory training, which may be helpful to survivors. Puzzles using numbers, like Sudoku, may help "exercise" your brain. Fatigue can enhance cognitive problems, so avoiding fatigue by getting enough sleep, incorporating exercise into your life and eating a healthy diet may be helpful.

It is important to remember that some very treatable problems can result in cognitive difficulties, such as thyroid dysfunction, depression and anxiety, so it is important to exclude or treat these diagnoses. Hypothyroidism (low thyroid hormone levels) is a common issue for survivors and can make you feel "fuzzy" or "out of it." This is easily treatable with supplemental thyroid hormone. Survivors who may be depressed or experiencing anxiety would benefit from consulting with a psychiatrist or psychologist experienced in working with cancer patients or survivors.

Fertility Concerns for Female Survivors

Resumption and preservation of fertility after cancer therapy is a very complex topic. It has not been very well studied, but is related to the doses and types of medications received, if radiation was also received, the age at time of treatment and, for women, the number of oocytes (eggs) present when therapy started. With all of these variables, there is no way to easily predict a survivor's reproductive health. In many studies, female survivors’ reproductive status was evaluated by the resumption of menses after therapy, but this is in no way a guarantee of fertility, making it difficult to interpret these results for women when discussing risk for infertility.

Survivors who wish to become pregnant or evaluate their fertility should consider seeing a reproductive specialist who has experience working with cancer survivors. Testing may be performed to help evaluate fertility, including certain hormone levels and counting the number of developing follicles early in a woman’s cycle (called an antral follicle count). LIVESTRONG maintains a list of specialists and offers financial assistance to cancer survivors. While they can be of help to many survivors, the organization’s main goal is to help in preserving fertility prior to cancer therapy. For survivors who have already completed therapy, The National Infertility Association’s website, Resolve, offers information on fertility treatments and testing, adoption, and deciding to not have children. This site also offers information on individual state laws about fertility coverage by insurers. The American Society of Clinical Oncology (ASCO) suggests that women with a history of cancer and cancer treatment should be considered high risk for perinatal complications and would be a good idea to seek specialized perinatal care.

Chemotherapy agents that are most strongly tied to infertility include: alkylating agents, cytarabine, vinca alkaloids, and bortezomib. Radiation fields that include the female pelvis or brain can also affect fertility. It is not well understood how many of the newer agents will affect long term fertility. Women who do resume menstruation after cancer therapy should be aware that they could still suffer earlier than expected menopause, which may be a consideration when planning a family. To learn more about fertility related to cancer treatment, please see OncoLink's section on sexuality and fertility.

Of equal importance is that cancer patients and survivors recognize that a gray zone exists after menstruation stops, when fertility may be possible. Even if a woman’s periods stop during treatment, she may be able to get pregnant. For this reason, use of birth control during cancer treatment for any premenopausal patient is essential. Accidental pregnancy during cancer treatment can be difficult to cope with, as it may limit the treatments available.

• Survivors wishing to become pregnant should consider consulting with a fertility specialist familiar with cancer survivors.
• Pregnant survivors should consider being followed by a high-risk obstetrician.
• Cancer patient’s should be aware that getting pregnant may be possible even after menstruation has stopped. Because treatments such as chemotherapy and radiation may be dangerous to an unborn baby, all patients who were actively menstruating before beginning cancer treatment should use birth control during cancer treatment, even if periods have stopped.

Side Effects While taking Tamoxifen

Your LIVESTRONG Care plan focuses on late effects of therapy, or those that can occur months to years after completing therapy. Current hormone therapy regimens last anywhere from 5 to 10 years, so we felt it was important to include some information about the acute side effects of these agents.

Tamoxifen commonly causes hot flashes and other symptoms of menopause. Avoiding triggers such as warm rooms, spicy, caffeinated or alcohol containing foods or beverages can help reduce hot flashes. Drink plenty of fluids, wear breathable clothing and exercise regularly. For some women, certain antidepressant medications can provide relief of hot flashes.

The more serious, though low risk, complications of tamoxifen include endometrial cancer and blood clots. Women should promptly report any menstrual irregularities, vaginal bleeding, pelvic pressure/pain, or any vaginal discharge, as these may be symptoms of endometrial cancer. An endometrial biopsy should be done to test for cancer if any of these symptoms occur.

Blood clots are rare, but most often occur in the calf or lung. Signs of a blood clot in the leg may include any of the following: leg pain, warmth, swelling of one leg more than the other. Signs of a blood clot in the lung could include: fever, shortness of breath that comes on you very quickly, racing heart, chest pain (that tends to be worse when you take a deep breath). Any of these symptoms should be reported to your physician immediately.

• You may experience hot flashes and other symptoms of menopause. Let your healthcare provider know if these symptoms become troublesome.
• There is a small risk of developing endometrial cancer. Be sure to report any irregular vaginal bleeding or pelvic pain/pressure promptly.
• There is a small risk of developing blood clots (typically in the in leg or lung). Notify your healthcare provider immediately if you experience any leg pain, warmth, swelling of one leg, fever, shortness of breath that comes on you very quickly, racing heart, or chest pain.
• Discuss side effects with your oncology team, as many of these are manageable. Optimal therapy can last 5 years, so management of side effects is critical to helping you stay on therapy.

Sexuality Concerns for Female Survivors

Women of any age may have sexuality concerns after cancer treatment. Do not hesitate to talk with your oncology team about these common concerns. Chemotherapy agents are associated with vaginal dryness, painful intercourse, reduced sexual desire and ability to achieve orgasm. Many of these issues are caused by the sudden onset of menopause, which can occur with cancer therapy. This sudden change in hormone levels leads to physical changes such as vaginal atrophy (thinning and inflammation of the vaginal walls), loss of tissue elasticity and decreased vaginal lubrication. In addition, women may experience hot flashes, mood swings, fatigue and irritability.

Decreased lubrication leading to painful intercourse is a common concern for survivors. This can often be treated with vaginal lubricants and moisturizers and/or estrogen therapy (taken orally or used in the vagina). Women who have had a hormone dependent cancer should discuss current research on using these therapies with their healthcare team. Surgery and/or radiation therapy can result in scarring that may cause discomfort during intercourse. Open communication about position changes and alternative methods of expressing affection with your partner can help when resuming sexual activity after treatment.

Concerns about changes in your body, cancer recurrence, the stress and anxiety caused by cancer therapy or changes in your relationship with your partner can all effect how you feel about your sexuality. It is important to understand that sexual activity cannot cause cancer to recur, nor can you spread cancer to another person through sexual activity. If you find that your feelings are significantly impacting your sexuality, you should talk with your healthcare team about finding a therapist experienced in helping cancer survivors.

Of utmost importance in addressing sexuality issues is communication, both between partners and between survivors and their healthcare teams. Understand that these concerns are common and communication is the first step to finding the right solutions. Visit OncoLink's section on sexuality for more information.

• Chemotherapy agents are associated with vaginal dryness, painful intercourse, reduced sexual desire and ability to achieve orgasm. Many of these issues are caused by the sudden onset of menopause, which can occur with cancer therapy. OncoLink’s article on Vaginal Dryness and Painful Intercourse provides product suggestions and tips.
• In addition, you may experience other symptoms of menopause, such as hot flashes, mood swings, fatigue and irritability.  Research has found that exercise, yoga and acupuncture all show benefit in relieving menopausal symptoms.
• Talk to your healthcare team about tips to manage these issues.
• Open communication with your healthcare team and partner are essential for regaining your sexuality and resolving issues. You may also consider talking with a therapist experienced in working with cancer survivors. 

Risk of Developing a Blood Cancer

Certain chemotherapy medications can cause damage to the blood cells in the bone marrow. This damage can cause leukemia or myelodysplasia (MDS) to develop years after therapy has been completed. Both diseases cause an abnormal production of poorly functioning blood cells, making it difficult for the body to fight infection, carry oxygen to the tissues and prevent bleeding. Because these condition develop as a result of chemotherapy or radiation exposure, they are often more difficult to treat than typical leukemia or MDS.

Leukemia and MDS caused by chemotherapy or radiation therapy typically occurs between 4-10 years after treatment, but can occur even later. One exception is those caused by etoposide (VP-16) or teniposide (two types of chemotherapy), which generally occur within 1-3 years after therapy. Secondary lymphomas have also been seen in Hodgkin's disease survivors who received the MOPP (nitrogen mustard [mustargen], vincristine [oncovin], procarbazine, and prednisone) chemotherapy regimen. 

• There is a small risk of developing leukemia, myelodysplastic syndrome, or lymphoma many years after your treatment is completed.
• Report the following symptoms to your healthcare provider promptly:
  • more tired or weaker than usual
  • shortness of breath
  • loss of appetite
  • weight loss
  • chills, fever, night sweats
  • painless swelling of a lymph node
  • easily bruising, nose bleeds, bleeding from the gums
• Consider having a complete blood count with differential checked annually by your healthcare provider.

 

Risk of Bladder or Urinary Tract Toxicities

The risk for bladder and urinary track toxicities is highest for survivors who received cyclophosphamide (doses > 3g/m²), ifosfamide and/or radiation to the abdomen. Late effects to the urinary tract can include hemorrhagic cystitis, a condition characterized by bleeding from the bladder lining and bladder scarring leading to a decrease in the bladder capacity. Symptoms of hemorrhagic cystitis include urinary frequency and urgency, blood in the urine and pain. Bladder scarring can present as difficulty urinating, frequency or urgency. Survivors at risk should report these symptoms to their healthcare provider right away. Survivors should understand that alcohol use and smoking can contribute to bladder dysfunction, so these should be avoided.

• Avoid alcohol
• Avoid smoking
• Report the following symptoms to your healthcare provider
  • Pain when urinating
  • Urinary hesitancy (difficulty starting the stream)
  • Urinating frequently
    • Urinating more than 5 times per day
    • Getting up in the middle of the night to urinate
  • Blood in your urine

Risk of Developing Bladder Cancer

Cyclophosphamide and streptozocin can contribute to the development of bladder cancer. This risk is increased for those who also received radiation therapy to the abdomen. Symptoms of bladder cancer include blood in the urine, urinary frequency and urgency, urinating at night and incontinence and should be reported to the healthcare provider. Survivors should be counseled that alcohol use and smoking can contribute to bladder cancer, so these should be avoided.

• Avoid alcohol
• Avoid smoking
• Report the following symptoms to your healthcare provider
  • Pain when urinating
  • Urinary hesitancy – starting and stopping while urinating
  • Urinating frequently
    • Urinating more than 5 times per day
    • Getting up in the middle of the night to urinate
  • Blood in your urine

Radiation Side Effects

Long term effects of radiation therapy vary greatly depending on the areas included in the field of radiation and the radiation techniques that were used, as these continue to develop and improve. One issue that is consistent across all tissues is the possibility of developing a second cancer in or near the radiation field. Secondary cancers develop as a result of the exposure of healthy tissue to radiation. Newer radiation techniques are designed to limit this exposure, but it is not always possible to prevent all exposure and still achieve the desired outcomes.

Side effects in this section are broken down by the structures or organs that would typically be included in the field of radiation for this treatment.

Bone

Damage to the bone from radiation can cause small cracks (fractures) in that bone. The ribs are more susceptible to fracture after radiation, although these fractures will almost always heal normally. If radiation is given in the area of a joint, permanent stiffness, pain and arthritis can develop in that joint.

• Rapid evaluation for fractures after trauma (for example, after a motor vehicle accident)
• Physical/ Occupational therapy for arthritis
• Non-steroidal inflammatory medicines for arthritis

Heart / Cardiovascular

Potential late effects of radiation fields including the heart include premature coronary artery disease and hypertension (high blood pressure), valve abnormalities, fibrosis or scarring of the cardiac tissue resulting in decreased heart function, pericarditis (inflammation of the heart sac), heart failure and myocardial infarction (heart attack). The actual risk varies greatly depending on the total dose of radiation, number of fractions (doses), amount of radiation actually delivered to the heart, time since radiation and whether or not chemotherapy agents with known cardiac toxicity were also given. Survivors at risk should have a yearly history and physical by a healthcare provider to evaluate cardiac function and blood pressure and should be counseled on lifestyle choices including exercise, tobacco avoidance and a healthy diet. High risk survivors may benefit from yearly EKG and screening echocardiogram to evaluate heart function.

Survivors should also be especially aware of other factors that increase risk of heart disease and death from heart attack. These include high cholesterol, obesity, high blood pressure, diabetes, smoking, and illegal drug use (cocaine). Screening for all of these risk factors can allow for early intervention.

• Avoidance of tobacco and illegal drug use
• Yearly history and physical exam with monitoring of cholesterol levels, blood pressure, and blood sugar by primary care physician to reduce risk of heart disease/ attack
• Yearly EKG and/ or echocardiogram for high-risk patients

Lung

Radiation fields involving the lung can lead to scarring (fibrosis), inflammation (pneumonitis), and restrictive or obstructive lung disease. Risk for these problems is increased with higher doses of radiation and radiation given in combination with certain chemotherapies (bleomycin, busulfan, BCNU and CCNU) and for those survivors who also had part of the lung surgically removed (lobectomy). Survivors who have had radiation to the lung are strongly encouraged not to smoke, as this can greatly increase the risk of problems. Annual history and physical by a healthcare provider should include a pulmonary exam and review of possible symptoms (cough, shortness of breath, wheezing). Survivors should receive annual flu vaccines and the pneumococcal vaccine. Physicians may consider chest x-rays or pulmonary function tests for those at highest risk or a change in pulmonary status.

Scarring within the lungs can result from radiation, and uncommonly this scarring may affect blood vessels. Any survivor coughing up blood should be evaluated immediately by a physician, either in the office or the emergency room.

Of note, the Children's Oncology Group recommends survivors not scuba dive without medical clearance from a diving medicine specialist. The National Comprehensive Cancer Network recommends Hodgkins Disease survivors who received chest irradiation consider annual chest x-ray or CT scan to screen for lung cancer, beginning 5 years after treatment. We should note that studies have not yet been done to support this recommendation.

• Annual influenza vaccine
• Pneumococcal vaccine every 5 years
• Tobacco avoidance/ smoking cessation
• Chest X-ray for new cough or shortness of breath
• Immediate evaluation of hemoptysis (coughing up blood)

Lymph nodes

The removal of lymph nodes from the axillary (underarm) abdominal or groin areas can lead to decreased drainage in the closest limb causing lymphedema (a swelling of the limb) to result. Survivors who have also received radiation therapy to the area are at greater risk of developing lymphedema which can occur years after therapy. While sentinel node biopsy can decrease the risk of developing subsequent lymphedema, it does not completely eliminate the risk. Lymphedema can cause pain, disfigurement, and functional limitations, and may increase the risk of a serious infection in that limb. A Certified Lymphedema Therapist should be consulted at the first sign of swelling to achieve the best outcomes. Survivors should be aware of this potential complication, given information on self-care, and instructed to notify the healthcare team with any signs of swelling or infection.

Surgery to remove the lymph nodes (or sentinel node) can result in injury to the nerves in that area. Nerve damage can cause pain numbness tingling decreased sensation or strength in the area or limb. For instance axillary (underarm) lymph node removal can result in these symptoms on the chest wall under the arm (armpit) or in the arm and/or hand on the treated side. Injuries like this could be aggravated by scar tissue formation after radiation therapy to the area. This type of pain is called nerve pain and is treated with different medications than other types of pain. Survivors with this type of pain may benefit from a consult with a pain specialist.

Radiation to Chest wall for breast cancer (after mastectomy)

Any patient who has had breast cancer is at risk for developing a second breast cancer in the opposite breast. Patients who have had mastectomy are also at risk for developing breast cancer recurrence in either the chest wall, the reconstructed breast, or the axilla (armpit). It is recommended that women who had single mastectomy undergo annual mammograms after treatment for breast cancer. Survivors who had single or double mastectomy should have a yearly breast and/or chest wall exam by a breast cancer specialist (medical oncologist, radiation oncologist, or breast surgeon).

Radiation to the chest wall after mastectomy may be performed either before or after breast reconstruction surgery. Regardless of this, radiation to the chest wall or reconstructed breast may cause permanent changes in the skin, including a darkening or “tanning.” Radiation may also cause difficulty with wound healing, so surgery to the chest wall or reconstructed breast after radiation should be undertaken with caution.

Other long term effects of chest wall irradiation include damage to the nerves, leading to pain or loss of strength or feeling in the arm on the side that was irradiated. Damage to the drainage (lymphatic) system in the area can lead to chronic swelling, called lymphedema. Risk of lymphedema is highest for women who also had surgical lymph node dissections and, to a lesser extent, sentinel node biopsy. A survivor with lymphedema who develops pain or redness in the arm, especially with fever, should be evaluated as these signs may indicate infection.

Survivors of breast cancers, particularly left-sided breast cancers, may be at increased risk of cardiac complications. Please see the description of heart/ cardiovascular late effects for more information.

• Yearly mammograms (for those who had single mastectomy).
• Annual examination of breast tissue and/or chest wall by breast cancer specialist.
• Caution when surgery is considered after radiation the chest wall or reconstructed breast
• Consideration of physical/ occupational therapy for arm pain, weakness, or swelling.
• Rapid evaluation for new arm swelling, redness, or pain, especially with fever.

Skin

Radiation can lead to permanent changes in the skin. This can include changes in the color or texture of the skin, scars, and changes in the color, texture of hair or permanent loss of the hair in the treated area. The soft tissue and muscles under the skin can develop scarring and/or shrinkage, which can lead to a loss of flexibility and movement or chronic swelling. Some patients develop chronic or recurring ulcers of the skin in the area treated. Blood vessels of this skin may become dilated and more noticeable, although this is not harmful. If the skin feels tight or sore, regular use of vitamin E applied to the skin can be helpful.

After radiation the skin is more sensitive to sunlight, and survivors should be especially cautious to use sunscreens when outdoors.

• Diligent use of sunscreen
• Evaluation by a wound care specialist or surgeon for non-healing ulcers

Surgery Side Effects

Lymph nodes taken from above the waist

The removal of lymph nodes from the axilla (underarm), abdomen, or head and neck area can lead to decreased drainage in the closest limb, causing lymphedema (a swelling of the limb) to result. In the case of head and neck cancers, the swelling can involve the neck and face. Survivors who have also received radiation therapy to the area are at greater risk of developing lymphedema, which can occur years after therapy. While sentinel node biopsy can decrease the risk of developing subsequent lymphedema, the risk is not completely eliminated. Lymphedema can cause pain, disfigurement, functional limitations and increase the risk of a serious infection in that limb. A Certified Lymphedema Therapist should be consulted at the first sign of swelling to achieve the best outcomes. Survivors should be aware of this potential complication, given information on self-care and instructed to notify the healthcare team with any signs of swelling or infection.

Signs of lymphedema may include the following changes in the area near surgery (arm, abdomen, neck): full or heavy feeling, skin changes (reddened, warm, cool, dry, hard, stiff), aching/discomfort, tightness, or less movement/flexibility in nearby joints. You may also experience difficulty fitting into clothes like the sleeve of a jacket or shirt, or feel your collar is too tight. In addition, you may notice jewelry feels tight even though you have not gained any weight. Lymphedema can occur right after surgery, weeks, months, or even years later. The possibility of developing lymphedema continues throughout a person's lifetime. Survivors should be vigilant in monitoring for early signs of swelling and practice prevention. If swelling develops, prompt, proper management and therapy allows for the best outcomes.

To help reduce risk and/or control lymphedema, survivors should try to avoid infections, burns, cuts, excessive hot/cold or injury to the area that is at risk. Avoid insect bites by using insect repellent. Use lotion to prevent dry, chapped skin. Use sunscreen with SPF 15 or higher and try to avoid the sun during the hottest time of day. Avoid pressure or constriction of the limb. Avoid tight fitting clothes and jewelry.

Those at risk for lymphedema can and should exercise. Start with low intensity exercise and gradually increase intensity while monitoring for changes in your limb including swelling or redness. If any swelling or redness occurs, stop the exercise and consult your physician. The person at risk for lymphedema should consider wearing a compression garment with vigorous or very strenuous exercise.

Whenever possible, have blood drawn, IVs placed, and shots/vaccinations given and blood pressure taken in an unaffected arm. For more information on what you can do to help prevent lymphedema, read the Lymphedema Self Care Tip Sheet on the Oncolink website. The National Lymphedema Network is a great resource for information.

Surgery to remove the lymph nodes (or sentinel node/s) can result in injury to the nerves in that area. Nerve damage can cause pain, numbness, tingling, decreased sensation or strength in the area or limb. For instance, axillary (underarm) lymph node removal can result in these symptoms on the chest wall, under the arm (armpit) or in the arm and/or hand on the treated side. Injuries like this could be aggravated by scar tissue formation after radiation therapy to the area, which can develop years after therapy. This type of pain is called nerve pain and is treated with different medications than other types of pain. Survivors with this type of pain may benefit from a consult with a pain specialist.

• Report any signs of swelling in the at risk area to your healthcare provider, and see a certified lymphedema therapist promptly if these symptoms develop.
• Practice preventive measures to decease the risk of developing or worsening lymphedema.

Mastectomy

Surgery for breast cancer can include mastectomy (removal of the entire breast) or lumpectomy (sometimes called breast conserving surgery, where only the breast mass (lump) and a surrounding area of normal tissue is removed). The surgeries can result in cosmetic deformities. In some cases, these can be corrected with breast reconstruction performed by a plastic surgeon. There is a risk of nerve damage during breast surgeries, which can lead to pain in the chest wall and/or pain and tingling in the arm/hand on the side of the surgery. Injuries like this can be aggravated by scar tissue formation after radiation therapy to the area, which can develop years after therapy. Neuropathic (nerve) pain is often described as burning or electric and can also include numbness, tingling and decreased strength or sensation. Survivors who develop chronic pain may benefit from a consult with a pain specialist.

Those who undergo a modified radical mastectomy, and sometimes those undergoing lumpectomy, may also have lymph nodes removed during surgery. The removal of lymph nodes increases the risk of developing lymphedema. In addition, patients, who have undergone lymph node dissection, may also develop nerve damage (as described previously), pain in the shoulder, or limitations in movement of the arm and shoulder. These complications may be temporary, but could become permanent. Exercises to promote shoulder mobility may be of help, and can be described and taught by a physical therapist.

Survivors of breast cancer should speak with their health care provider regarding the possibility of a genetic or family syndrome. If there does appear to be a family history or possible genetic link, genetic counseling and testing may be warranted for the survivor and his or her family.

• Be vigilant for signs/symptoms of lymphedema and ensure early and proper management.
• Remember to do monthly self-breast exam. Get a mammogram on remaining breast(s) every year.
• Report pain in the breast or chest wall to your healthcare provider.
• Consider physical therapy for decreased range of motion in the shoulder.

Healthy Living After Cancer

Survivors often wonder what steps they can take to live healthier after cancer. There is no supplement or specific food you can eat to assure good health, but there are things you can do to live healthier, prevent other diseases, and detect any subsequent cancers early.

Fatigue

Fatigue is the most common side effect during cancer treatment. What many people do not know is that, for some patients, this feeling of overwhelming physical, mental and emotional exhaustion can last for months to years after therapy ends. Soon after treatment is complete, friends, family and co-workers often expect the survivor to be back to doing the things they did before treatment, with the same vigor. Some survivors report significant fatigue years after completing therapy, which can be extremely frustrating for the survivor and those around them. It is important to remember that fatigue can have many causes and, particularly if fatigue is worsening or new, it should be discussed with your healthcare team to rule out treatable causes.

While it may seem overwhelming to start exercising, many studies have shown that light to moderate exercise can combat fatigue and improve your energy level. Exercise can take many forms, from walking, gardening or swimming, to more structured classes at a gym. Start slow and gradually increase the amount and intensity of your activities. Enlist a friend to be an exercising partner, who can encourage and support you on days when you can't get motivated.

Most importantly, you should understand that it is normal, and you will need to give yourself time to slowly return to your former level of energy. Manage your energy, "saving up" for important or tiring tasks. Delegate tasks to helpful friends and family members, so you can focus on things that others cannot do for you. By learning to manage tasks, group errands together, make lists, and prioritize and delegate, you can, to an extent, outsmart your fatigue.

• After making sure that fatigue not being cause by another problem, find ways to best cope and manage the fatigue. Regular exercise, acceptance, and reprioritizing will help.
• Alert your healthcare provider if fatigue is worsening or a new symptom.

Genetic Risk

Cancer is a condition where certain cells in the body are no longer growing and dividing normally. Genes are the instruction manuals contained in all of our cells. Cells receive many instructions from genes about when to grow and divide, and when to stop growing. If certain genes are not working properly (they have a mutation) then cells may not get the proper instructions about when to grow and divide and cancer can develop.

In families with hereditary forms of cancer risk, a mutation is present in a single, very important gene, and is present at birth in all cells in the body. A child may inherit this gene mutation from a parent. Inheriting a mutation in a gene that plays a very important role in controlling normal cell growth substantially increases cancer risk. However, these cancer risk genes in no way guarantee that cancer will develop; inheriting a mutation in a cancer risk gene means only that your risk is higher than someone who does not carry such a mutation in their cells.

Not every family that has multiple cancer cases is found to have a genetic mutation. If you are concerned that your family may have such a mutation, you can consult with a genetic counselor. These trained professionals will review your detailed family history, discuss the risks and benefits of genetic testing and help you decide what is right for you. If you do undergo genetic testing, the genetic counselor will help you understand how the results affect you and your family. They will also help you outline a plan for cancer screening that is tailored to your level of risk.

Follow-up Care

Breast Cancer

After receiving treatment for breast cancer, it is important for survivors to adhere to their physician’s plan for follow up care. Guidelines developed by the National Comprehensive Cancer Network state that survivors who have had breast conserving therapy (lumpectomy) should have their first mammogram approximately 6 months after completing radiation therapy, then annually. Survivors who underwent single mastectomy should have a mammogram annually. In addition, breast MRI may be considered for survivors with the BRCA 1 or 2 genes. Those who have had double mastectomy do not need mammograms, but should examine the chest wall for swelling or a rash, and report any changes to their oncologist. However, some oncologists recommend that mammograms be performed of the reconstructed breast or breasts.

• Mammogram annually for those who have had a single mastectomy (the first mammogram should be six months after therapy for survivors who underwent lumpectomy and radiation therapy).
• Perform monthly self-breast exams and / or examination of the chest wall and scar line. Report any changes, lumps, swelling or skin rashes to your physician.
• Be seen and examined by your oncologist every 4-6 months for 5 years, then annually.
• Women with an intact uterus on tamoxifen should see a gynecologist annually and notify their physician of any vaginal bleeding.
• Women taking aromatase inhibitors whose menstrual cycles have stopped should have a Dexa scan as a baseline, then periodically.
• Consider referral to genetic counseling if family or personal history includes early age at diagnosis of breast cancer (<50), triple negative disease, multiple primary cancers, or a family history of breast or ovarian cancer.
• Evidence has shown that leading an active lifestyle and maintaining a healthy weight (body mass index of 20-25), may lead to improved breast cancer outcomes.

 

Cancer Screening After Cancer

Some studies have found that cancer survivors may be twice as likely to develop another cancer when compared to someone who has never had cancer. The second cancer may be a different type of cancer altogether, or a cancer in the same site as before, but unrelated to your first tumor. The increased risk of developing another cancer may be related to exposure to established risk factors (smoking, for example), or a genetic predisposition in certain individuals, but in many cases the reason for the increased risk is unclear. While this may sound scary, it is a reminder of the importance of cancer screening and of maintaining a healthy lifestyle in your post-cancer life. In some cases, a treatment (certain types of chemotherapy or radiation therapy) can increase the risk of another cancer. In this case they are called "secondary cancers" because they develop as a result of therapy. If you are at risk for a secondary cancer, it will be discussed further in your plan.

• All women should begin cervical cancer screening about 3 years after they begin having vaginal intercourse, but no later than 21 years old. Screening should be done every year with the regular Pap test, or every 2 years using the newer liquid-based Pap test.
• Beginning at age 30, women who have had 3 normal Pap test results in a row may get screened once every 2 to 3 years rather than annually. Alternatively, women over 30 may be screened every 3 years with either a Pap test (conventional or liquid-based), plus the human papilloma virus (HPV) test.
• All women should have an annual pelvic exam by a healthcare provider, regardless of whether they are having annual Pap tests.
• Women 70 years of age or older who have had 3 or more normal Pap tests in a row, and no abnormal Pap test results in the last 10 years, may choose to stop having Pap tests.
• Women who have had a total hysterectomy (removal of the uterus and cervix) may also choose to stop having Pap tests, unless the surgery was done as a treatment for cervical cancer or pre-cancer. Women who have had a hysterectomy without removal of the cervix should continue to have Pap tests.

• Flexible sigmoidoscopy every 5 years, or
• Colonoscopy every 10 years, or
• Double-contrast barium enema every 5 years, or
• CT colonography (virtual colonoscopy) every 5 years

• Yearly fecal occult blood test (FOBT)*, or
• Yearly fecal immunochemical test (FIT) *, or
• Stool DNA test (sDNA), interval uncertain*

• Do not use tobacco in any form. If you do, learn more on OncoLink and talk to your healthcare provider about taking steps to quit.
• Maintain a healthy weight. Many studies have found that excess weight plays an important role in cancer development and recurrence. While maintaining a healthy weight is important in cancer prevention, it cannot easily be separated from the importance of physical activity and eating a healthy diet. Strive to incorporate all three pieces of the puzzle: healthy weight, balanced diet and regular exercise.
  • Talk to your healthcare team about what a healthy weight is for you, and take steps to reach and maintain that weight.
  • Experts recommend at least 30 minutes of moderate to vigorous activity per day, 5 days a week.
  • Eat healthy, including plenty of fruits and vegetables daily. Strive to have 2/3 of your plate be vegetables, fruits, whole grains and beans, while 1/3 or less should be an animal product. Choose fish and chicken and limit red meat and processed meats.
  • Learn more about recommendations for diet, activity and weight in the AICR’s Guidelines for Survivors and the ACS Eat Healthy and Get Active information on their website.
  • Learn more about the benefits of physical activity from Macmillan Cancer Support.
• Limit how much alcohol you drink (if you drink at all).
• Have regular check-ups by a healthcare professional.
• Keep up-to-date on general health screening tests, including cholesterol, blood pressure and glucose (blood sugar) levels.
  • Learn about healthy screening tests for women and men from the US Department of Health and Human Services.
• Get an annual influenza vaccine (flu shot).
• Get vaccinated with the pneumococcal vaccine, which prevents a type of pneumonia, and re-vaccinated as determined by your healthcare team. Learn more about adult vaccinations from the CDC.
• Don’t forget dental and eye health!
  • The American Optometric Association recommends adults have their eyes examined every 2 years until age 60, then annually. People who wear glasses or corrective lenses or are at “high risk” for eye problems (i.e. diabetics, family history of eye disease) should be seen more frequently.
  • The American Dental Association recommends adults see their dentist at least once a year. 

Life After Cancer

After active treatment is complete, you will begin a plan for follow-up care. This will involve less frequent visits to the oncology team, which for many can be a very scary time. The weekly or monthly visits to the oncologist are reassuring; someone is checking on things and giving you the thumbs up. Survivors are often surprised by their emotional reaction at this time. They anticipate jumping for joy and throwing survival parties, and instead find themselves crying in the parking lot after their last treatment, feeling vulnerable in unexpected ways. Some find it disconcerting that they are no longer receiving active treatment to attack rogue cancer cells; furthermore, their treatment team is no longer giving them much needed daily or weekly support. Early cancer survivors can feel fear, sadness, anger, isolation and grief. These feelings can co-exist with a sense of relief, gratitude, and an enhanced sense of capacity to face adversity.

Completion of therapy is a time when friends and family may say, "Congratulations" and "You must be glad to be done", though you may be feeling uncertain about this milestone. Friends, family and even the oncology team can be caught off guard by the complicated emotions you are experiencing. They may not realize at these emotions are common and even expected, which may make you feel even more isolated. You aren't alone. These are common reactions and here are a few tips to help you deal with it.

For starters, be assured that your oncology team is always there if concerns arise. Protocols for follow-up care have been developed to follow each person in the best way. This plan varies for every type of cancer, and may involve periodic blood work, radiology scans and tests, and physical exams. You may only see the oncology team once or twice a year, but they are always a phone call away.

You will need to settle in to your "new normal". Friends and family will say it must be nice to be getting back to normal. But as any cancer survivor will tell you, things have changed, and so has the definition of "normal". Many survivors say they look at life differently: they don't take things for granted, and don't sweat the small stuff. A cancer diagnosis changes you as a person, something people around you may not fully understand. It may be helpful to join a group of survivors, either formally (in a support group) or informally (gather a few folks you have met along the way). Email and the Internet have created a wonderful support for all sorts of concerns, and survivorship is no different LIVESTRONG Navigation Services can help you find support groups in your area and get free professional counseling over the phone or online Visit the Association of Cancer Online Resources to find an email group that fits your needs or search the Internet for cancer survivor support. CancerCare provides support groups and professional counseling over the phone or online. Many cancer centers and advocacy organizations offer support groups for survivors to address their specific concerns after therapy. No one understands this time better than someone who has been there, and this support can be very valuable.

Cancer survivors face daunting tasks: finding meaning in illness, restoring a sense of identity and purpose, and coping with uncertainty. How one begins to meet these challenges is unique to each survivor. For some, recovery from the trauma of cancer and its treatment can be made more difficult by the late medical complications of past treatment, which can affect quality of life. Remind yourself of the strength you demonstrated in having met the challenges of cancer treatment. Setting new goals and turning to spirituality are possible strategies for coping. Using artistic expression such as painting and writing can be helpful tools to work through your emotions. When emotions become too overwhelming, it may be helpful to seek a referral to a mental health professional. Signs of persistent depression and anxiety interfering with sleep and daytime function, hopelessness, and suicidal thinking are indicators that professional help is needed. LIVESTRONG Navigation services can provide you with emotional support. Ask your oncologist to recommend a psychological professional, or visit the American Psychosocial Oncology Society (or toll-free 866-276-7443) to find a mental health professional familiar with cancer-related distress in your area.

Completing treatment can also present other challenges. Your family or employer may expect things to pick up where they left off. Resuming your previous activities may not be as easy as it sounds. Many survivors suffer from fatigue or limited energy for months, or even years, after therapy. The time it takes to get over this fatigue varies greatly depending on the treatment received, the type of cancer, how fatigue affected you during treatment, and how well you can balance the demands on your time. Some people describe their energy as a bowl of candy. You start the morning with a full bowl, and every task takes one or two candies. You will need to continue to balance and prioritize your time and energy. Save a few candies for when you have something special to do in the evening. You will find that your bowl of candy will continue to get bigger every day. Using this metaphor will help you mentally manage your time and energy.

The issues we have discussed thus far will generally resolve, or at least improve, in the months following treatment. But there are many issues that can affect survivors in the long term, including health issues related to treatment, as well as financial (employment and insurance) and personal (fertility, sexuality and relationship) issues.

While many patients are told about the long-term health effects of treatment before starting, they often don't recall or didn't concern themselves with them at that time. This is understandable, because when you're presented with treatment options to save your life, thinking about what could happen ten or twenty years down the road isn't as much of a priority. So what to do now? Learn what your risks are based on the treatment you received, learn what you can do to prevent them, if possible, and learn how to monitor for them. You have taken the first step by developing a survivorship plan of care. Some survivors may also benefit from a visit to a survivorship clinic. These clinics review your treatment history and develop recommendations for you and your primary care team based on your personal risks. Contact cancer centers in your area to see if they have a survivor's clinic or search for a clinic on OncoLink's survivorship clinic list. The LIVESTRONG Survivorship Centers of Excellence network may have a clinic in your area.

There are many resources to help survivors, but it can take some homework to find what you need. In dealing with employment issues, you should learn about your rights and your employer's responsibilities under the law. OncoLink's section on financial and insurance issues may be helpful. LIVESTRONG Navigation Services (online or 1-855-220-7777) is a free resource that can help you find resources and address financial, employment, insurance and coping concerns. The National Coalition for Cancer Survivorship and the American Cancer Society websites also have financial and insurance information for survivors. The Cancer Legal Resource Center provides information on cancer-related legal issues, including insurance coverage, employment and time off, and healthcare and government benefits. Cancer and Careers is a resource for all things employment-related, from time of diagnosis well into survivorship.

Personal issues related to sexuality or fertility can be emotionally draining, and can interfere with personal relationships at a time when you need them most. OncoLink's section on fertility & sexuality may be helpful. Organizations such as LIVESTRONG, the Oncofertility Consortium and Resolve can help with fertility issues. Us Too and the American Cancer Society provide fertility and sexuality resources.

All of this can be a bit overwhelming, but the fact that there are over 12 million cancer survivors in the United States today is testament to the fact that you can do this! Take it one day at a time, and seek the support you need to live and love your "new normal" life.

Living with metastatic disease

When you first learn you have metastatic disease, many questions and emotions arise. How can I possibly cope? Can my family handle it? Can I work- and how can I afford not to? What do I do now? You may feel fearful, shocked, angry, overwhelmed and out of control. Don't hesitate to seek out help and support- social workers, therapists, support groups (in person or online). Family, friends and clergy can be great sources of support during cancer treatment.

If you have been through cancer treatment before, keep in mind that you know much more now than you did at the time of your original diagnosis. Use that knowledge to guide your treatment decisions and help you put into place the support you need to get through this battle.

If you are newly diagnosed with cancer that is discovered to be metastatic, call on your best support people to help you research treatment options, weigh the pros and cons and make decisions. Bring your support person(s) to your appointments to take notes and help you recall what was discussed when you get home.

Metastatic cancer means something different to each person that hears those words and what this means for prognosis is no different. Advances in therapies allow some cancers to become a chronic illness, with people surviving for many years on and off therapy. For others, time may be much more limited. But this does not mean you cannot aim for the best possible quality of life while living as fully as possible.

Hope can exist even when what was originally hoped for is not likely to happen. Focus on achievable daily goals, such as attending a child's soccer game or lunch with a friend. This may help you appreciate the "little" treats in life and keep you focused on the good things. Some survivors like to set a long-term goal or milestone, such as seeing the birth of a grandchild. Save your energy to spend doing things you enjoy. Be realistic in your goals, accept that you won't always be up for the task and may need to adjust your goals for the day based on how you feel. Don't be afraid to ask for help when needed.

Metastatic cancer can be a devastating part of the journey. While it may seem that the cancer has "won," don't let it. It may be hard at times to remember that you have a lot to live for, but don't let the cancer keep you down. Don't let it keep you from moving forward, enjoying life and spending time with loved ones. Make the best of what you have and don't dwell on things that happened in the past or what may/may not happen in the future. Live each day as best you can and realize some days will be better than others.

Some good resources:

• NCI publication, When Cancer Returns
• ACS resource, When Your Cancer Comes Back