Your Summary

Welcome to your personalized LIVESTRONG Care Plan. This tool is designed for survivors of adult cancers and your survivorship plan is developed based on the information you entered on the questionnaire. Childhood cancer survivors are encouraged to visit the Children's Oncology Group website for more information specific to them. The information in this plan is based on the available research and literature concerning cancer survivors. This area is continually growing and as new information becomes available, it will be added to the program. For this reason, you may want to redo your plan periodically.

The LIVESTRONG Care Plan provides you with information regarding the health risks you may face as a result of cancer therapies. The level of risk can vary based on the duration, doses and combinations of therapy, therefore this plan should be discussed with your oncology team to better understand your personal risks. These results can be concerning, but remember, not every survivor experiences every side effect, and some do not experience any long-term effects. This plan is to make you aware of possible long-term effects that you and your healthcare team should keep in mind. If you would like to talk to someone about your concerns, LIVESTRONG can help you to understand how cancer may impact your life, answer questions you might have and provide support throughout your cancer experience. Please call 1-855-220-7777 or visit LIVESTRONG online at LIVESTRONG.org/GetHelp.

The information in the plan is broken down by the cancer therapies you received, future screening, healthy living tips and psychosocial issues you may face. Sometimes more than one therapy can cause the same long-term effect, so you may see a particular side effect in more than one section. If there are specific things you can do to reduce the risk for or evaluate for the presence of an effect, these will be summarized at the end of the section.

You were treated for Head & Neck: Tongue, Lip, Oropharynx, Nasopharynx

  • Lymph nodes taken from above the waist
  • Laryngectomy
  • Head and Neck Surgeries
  • Removal of the Thyroid (thyroidectomy)
  • Lymph Node Removal (Dissection)
  • Cetuximab (Erbitux®)
  • X-ray based Radiation / imrt
  • Radiation Treatment for head and neck cancers

Coordinating Your Care

As a survivor, it is important that you keep a journal or notebook of your care. Include your doctor's contact information, a list of past and current medications, therapies received, and radiology studies. (Visit the OncoPilot section for forms you can use to organize this material). While some survivors continue to see an oncologist, many return to a primary care provider or internist for routine care, many of whom are uncertain how to care for you. Developing the LIVESTRONG Care Plan can help you and your primary care provider understand what issues to look for, and how to handle them.

If you are being followed only by a primary care practitioner, it is a good idea to maintain a relationship with an oncologist or late effects clinic, should you need any guidance or referrals with regards to late effects. Call the cancer center where you were treated to ask if they have a survivor's clinic, or find one by searching OncoLink's Survivorship Clinic List (though this list is not exhaustive). A survivorship clinic will review the therapies you received, discuss your risks with you, and act as a consultant to your primary care team. Your LIVESTRONG Care Plan will come with a "Summary for your healthcare providers", which is an abbreviated summary of recommendations that you can give to healthcare providers for reference.

Risks Related to Medications

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 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 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.

Fertility and Sexuality Concerns for Male 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 or surgery to reproductive organs was performed and the age at time of treatment. With all of these variables, there is no way to easily predict a survivor's reproductive health.

Survivors who wish to father a child or assess their fertility should consider seeing a reproductive specialist who has experience working with cancer survivors. There is testing a specialist can perform to help evaluate fertility, including certain hormone levels and sperm counts. LIVESTRONG maintains a list of such 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. They also have information on individual state laws about fertility coverage by insurers.

Chemotherapy agents that are most strongly tied to infertility include: alkylating agents, temozolomide (in men), cytarabine, vinca alkaloids, and bortezomib. Radiation fields that include the testes, brain or TBI can also affect fertility. It is not well understood how many of the newer agents will affect long term fertility. To complicate things further, in many cases, azospermia (no sperm) or oligospermia (low sperm count) is temporary, with sperm production recovering in the months to as long as 4 years following cancer therapy. To learn more about fertility related to cancer treatment, please see OncoLink's section on sexuality and fertility.

Sexuality concerns for male survivors can include erectile dysfunction (ED) and decreased libido. Many male survivors and their partners feel lucky to be alive and don’t realize there are many solutions available for their loss of intimacy. ED after radiation, surgery or chemotherapy can be temporary and take up to 2 years to resolve. Remaining sexually active, with the aid of medications or other devices, can improve the likelihood of regaining function. An important first step is acknowledging the problem and seeking the help of an urologist who specializes in erectile dysfunction. Men in committed relationships should have open communication with their partners about their fears and concerns. The Us Too Prostate Cancer Education & Support website has many helpful tips for men facing these issues.

  • Survivors wishing to become pregnant or father a child should consult with a fertility specialist familiar with cancer survivors.
  • Survivors dealing with erectile dysfunction (ED) should seek the help of an urologist who specializes in ED.

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.

Head & Neck Cancer Radiation

The radiation used to destroy cancer cells can also hurt normal cells in the surrounding area. Thus, side effects from radiation treatment are directly related to the area of the body being treated.  Most side effects are temporary, disappearing gradually after therapy is complete. There are a few potential long-term side effects that are specific to head & neck cancer treatment.  These can occur months to many years after cancer treatment and the risks vary depending on the area of treatment and the radiation techniques that were used, as these continue to develop and improve. Your radiation oncology provider can discuss which long-term effects are most concerning for your case. Some of the potential long-term side effects of radiation to the head & neck include:

  • Some survivors experience long-term swallowing problems. In addition, radiation can result in the development of scar tissue months to years after treatment, which can lead to swallowing problems. Report any changes in swallowing to your oncology team. You may benefit from consultation with a speech and swallowing specialist.
  • Radiation fibrosis is a scarring of muscles that can occur in the area of treatment that can make the muscles feel stiff or tough.  These muscles can have spasms, stiffness, pain and/or become weak. Scarring of muscles in the neck can cause the head to be rotated and tilted to the side. Physical therapy, cancer rehabilitation, supportive devices and certain medications can be very helpful in managing these changes.
  • Similarly, nerves in the area that is radiated can be damaged or impinged by scar tissue, resulting in weakness or pain in the area.
  • Lymphedema of the face, chin and neck area occurs somewhat rarely.  Notify your healthcare provider if you notice swelling. Physical therapy is used to treat lymphedema. Learn more about reducing the risk of lymphedema on OncoLink.
  • Trismus is a chronic contraction of the muscle that controls opening and closing of the mouth (TMJ) that can occur after radiation treatment. Trismus results in an inability to open the mouth normally, which can make it difficult to eat, speak or perform dental care. Your oncology team can recommend jaw exercises to prevent or help improve trismus.  For some patients, jaw manipulation by a dentist or treatment by a cancer rehabilitation physician can be helpful.

There are treatments available for many of these complications. Doctors who specialize in Cancer Rehabilitation Medicine (called physiatrists) can be very helpful in treating these concerns. 

Because the head & neck treatment field can encompass several other structures and organs, the risks to these areas are discussed below.

Spinal cord

Radiation to the spinal cord can cause damage to nerves, leading to a loss of strength, feeling or coordination of the arms or legs, paralysis or problems with bowel or bladder control. Occasionally, nerve damage can cause a sensation of electric shock spreading down the limbs.

Damage to bones of the spine (vertebrae) included in the radiation field can result in a reduction in height or curvature of the spine. Radiation to these bones can also put them at risk for fracture. Any new back pain should be evaluated urgently with x-rays and, if necessary, other studies.

  • X-ray evaluation for any new back pain, loss of bowel or bladder control, paralysis, weakness of arms or legs.
  • Evaluation by a neurologist for chronic, shock-like pains in the arms/ legs
  • Evaluation by an orthopedist for any new curvature of the spine

Eyes

If the radiation field includes the eyes, patients are at long term risk of developing cataracts at an early age. Survivors should report any symptoms of cataracts and have an eye exam performed by an ophthalmologist every 1-5 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.

Fields including the eyes can also damage the lacrimal glands, resulting in a loss of or decrease in tear production and chronically dry eyes. An ophthalmologist can recommend artificial tears or medications to stimulate tear production. Patients with dry eyes from radiation treatment may be at increased risk for corneal infections. Any eye pain should be evaluated by a healthcare provider in a timely fashion.

Other possible effects include shrinkage or loss of the eye, corneal abrasions and ulcers, glaucoma and damage to the optic nerve, leading to vision loss or blindness.

  • Opthalmologic evaluation every 1-5 years, or more frequently if symptoms are troublesome

Ears

Damage to the cochlea, or organ of the inner ear, may result from brain radiation. Especially in children who have received chemotherapies such as cisplatin or carboplatin, this may lead to hearing loss. Radiation damage to the ears can also lead to dryness of the ear canal and fluid collection in the inner ear. This may lead to dizziness, ringing in the ears (tinnitus), and/or vertigo (sensation of loss of balance). Occasionally, thee problems may lead to nausea and vomiting that may be worse in the morning. Survivors should report any hearing difficulties, ear pain, ringing in the ears, or vertigo. Audiogram (hearing test) or consult with an audiologist should be initiated with any sign of toxicity.

More commonly, survivors report a feeling of "fullness" or "clogging" in the ears after brain radiation. Usually, this gets better with time, but should still be discussed with a healthcare provider.

  • Audiogram (hearing test) for any loss of hearing, pain, ringing in the ears, or vertigo

Salivary glands (Parotid)

The largest of the salivary glands are the parotid glands, located just behind the jaw, below and in front of the ears, as well as in the floor of the mouth. Depending on the extent of the glands that were exposed and the amount of radiation they received, radiation can cause loss of, or decrease in, saliva production. This may be permanent or temporary. Long term loss of saliva can make eating and speaking difficult, for which saliva substitutes and/or pilocarpine may provide some relief. Dental health is extremely important for survivors of head and neck cancers, as saliva is important for killing bacteria in the mouth and on the teeth. This loss of saliva can result in more rapid tooth decay, so dental visits, including cleanings every 6 months, oral exams annually and a baseline panoramic x-ray are important to detect problems early. Fluoride treatments are also recommended.

Children/ adolescents who received radiation prior to the development of permanent teeth are at risk for a failure of teeth to develop or root and enamel abnormalities.

Patients who received radiation to the jaw are at risk for osteoradionecrosis (ORN) of the jawbone. This rare complication is an inability of bone to heal after minor trauma. It may occur after a dental procedure (such as pulling a tooth) or present as jaw pain or an inability to open the jaw. You should report any symptoms and let your dentist know that you have had radiation to the jaw, so they can monitor for ORN.

Changes in or a loss of the ability to taste or smell can occur during treatment, and can become permanent.

  • Dental cleaning every 6 months
  • Annual dental exam with X-rays
  • Further evaluation of any chronic or severe jaw pain
  • Annual fluoride treatments
  • Excellent home dental care with brushing twice daily and flossing daily
  • Nutritional evaluation if eating is difficult due to decreased saliva, decreased taste/ smell, or difficulty chewing or swallowing.

Sinuses

Radiation to the sinuses can lead to chronic sinusitis. Symptoms of sinusitis (post nasal drip, nasal discharge, facial pain, and headaches) should be evaluated by an otolaryngologist.

  • Evaluation by an otorhinolaryngologist (ENT doctor) for chronic sinus headaches or post-nasal drip

Throat / Upper Airway

Radiation fields that include the upper airway and throat (upper esophagus) can lead to scarring or swelling making breathing, speaking, and swallowing difficult. Patients who have severe trouble breathing may require tracheostomy (tube through the neck to allow breathing). Patients may also notice hoarse voice and/ or chronic cough. Any worsening of these symptoms or coughing of blood should be reported to a doctor's office immediately. Difficulty swallowing may make eating difficult. All cancer survivors should have their weight and nutrition monitored by a primary care doctor. Survivors who lose weight without meaning to or have electrolyte imbalances or dehydration may need to see a nutritionist. He or she may recommend high calorie dietary supplements such as Boost or Ensure. If difficulty swallowing prevents the survivor from taking adequate food, a PEG tube (entering the stomach through the skin) may be required.

  • Yearly (at least) monitoring of weight and nutrition
  • Evaluation by a nutritionist if difficulty swallowing prevents intake.
  • Evaluation by an otorhinolaryngologist (ENT doctor) for difficulty breathing due to upper airway problems, hoarse voice, or new/ worsening cough.

Thyroid

The thyroid gland is located in the neck, just below the larynx (voice box). Radiation fields that include the thyroid gland can result in a variety of thyroid problems, including hypothyroidism, hyperthyroidism, and thyroid nodules/tumors. Although risk continues for the life of a survivor, peak incidence of hypo and hyperthyroidism has most often been seen at 2-5 years after treatment, while thyroid nodules are typically seen 10 years or more after treatment. Risk increases with the amount of radiation received to the area. Symptoms of hypothyroidism (the most common complication) include fatigue, weight gain, constipation, dry skin, brittle hair or cold intolerance. Those with extensive thyroid damage are at risk hypoparathyroidism, a condition resulting from damage to the parathyroid glands (located in the same area as the thyroid). Survivors should have a thyroid exam and a history and physical performed annually by their healthcare provider to evaluate for symptoms suggestive of thyroid issues. If the thyroid was directly in the radiation field, screening with TSH (thyroid stimulating hormones) levels may be considered. Survivors who develop thyroid problems can benefit from consultation with an endocrinologist to manage hormone levels.

  • Yearly history and examination of thyroid by a physician.
  • Yearly thyroid testing (TSH) if symptoms arise or if the thyroid was radiated directly, with evaluation by an endocrinologist if tests are abnormal.

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

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.

Laryngectomy

Laryngectomy is the surgical removal of the larynx.  The person who had the procedure is called a “laryngectomee”.  The larynx is the “voice box” or vocal cords, which vibrate as air passes over them during exhalation, and this sound is made into our speech by the parts of our mouth.  If the larynx is removed, no speech sounds can be made.  A partial laryngectomy may allow speech, though in many cases it will be different than the speech was before surgery and may be more difficult for people to understand.  In addition, the trachea (breathing tube) is redirected with removal of the larynx, resulting in a stoma (hole) in the neck that the laryngectomee breathes through.  This is referred to as a “neck breather”.  These changes bring about some long-term practical and safety concerns of which you should be aware.

 

Safety Concerns

  • Notify your local 911 and EMS service of your condition so that they will respond even if you do not speak when you call.
  • Get a medical alert bracelet identifying you as a “neck breather”.  This is important because CPR breathing or oxygen given through your mouth is ineffective.
  • Carry something that can be used as an alarm in an emergency when you would otherwise yell for help. For example, an alarm for a keychain or bell can call attention to you.
  • If you cannot speak or speech is difficult to understand, carry paper and pen to write messages.
  • Because the air you breathe is not going through your nose, you will have decreased ability to smell, which can have safety implications. You may not smell smoke from a fire, natural gas or sour food, for example. Make sure you have working smoke detectors and change the batteries every 6 months.

 

Practical Concerns

  • Showering: You need to avoid getting water in the stoma. Options to keep water out: foam filters, stoma covers, other things use to cover the stoma like a washcloth or baby bib. Many laryngectomees get comfortable with showering over time and require nothing to cover the stoma.
  • Clean Air: Remember that the air going into the stoma when you breathe goes directly to your lungs. Be cautious about dust, pet hair, aerosol sprays, etc. – anything that can be in the air and inhaled.  You may want to use a stoma cover for certain activities where the risk of inhaling something is higher.
  • Humidification: Prior to surgery, the air you were breathing was humidified by your nose and mouth.  After surgery, you no longer have this built in humidifier and this dry air results in increased mucus production as the lungs try to moisten the air. You will need to learn how to increase the moisture level in the air you breathe and retain this moisture.  Tools to do this include using a cool-mist humidifier when sleeping, saline squirts and stoma covers. You can learn much more about humidification from your healthcare team or at the resources listed below.

Speech & Swallowing

Issues with speech and swallowing are common after laryngectomy, but these issues can arise at any point in a survivor’s life. If you experience any difficulty swallowing at any time, notify your oncology team. A speech language pathologist (SLP) can help manage swallowing difficulties and help with devices and techniques to assist with your speech. SLPs can be accessed at any time in a survivor’s life for new concerns or to explore newer technologies for speech.

 

Finding Answers

As you recover from surgery and get back to life, you are sure to encounter situations for which you weren’t prepared.  Your healthcare team is there to support you and answer questions.  The following resources can provide lots of practical tips from other survivors who have “been there”.

 

 

 

Head and Neck Surgeries

Surgery involving the head and neck encompasses a wide variety of procedures. These can result in difficulty chewing, swallowing, speaking, and breathing. Other complications are aspiration (the inhalation of food or liquids into the lungs, which can lead to pneumonia), decreased range of motion in the neck, lymphedema (swelling as a result of lymph nodes removed in surgery), dry mouth (xerostomia), and alterations in taste, smell and hearing. These effects may be partial or complete losses and may be temporary, lasting for months after treatment, or permanent. In addition, head and neck surgeries can dramatically alter appearance and voice. Various therapy disciplines can help in managing and treating these side effects and changes, including physical and occupational therapy, lymphedema therapy, speech and swallowing experts, dieticians, plastic surgeons, prosthetic manufacturers, pain management and orthodontic specialists.

It is important for survivors of head and neck cancers to have close follow-up that includes a comprehensive physical exam with particular attention to the head, mouth, neck, and area lymph nodes. Follow-up should occur frequently, but the actual time points and any necessary blood work, endoscopy, and imaging studies should be determined by your oncologist based on the cancer type and stage. Survivors of head and neck cancers are at high risk for recurrence and/or developing a second malignancy. Be aware of signs and symptoms of recurrence, which may include weight loss, coughing or spitting-up blood, difficulty swallowing, difficulty opening the mouth fully, sores in the mouth that do not heal, or ear ache (particularly when swallowing). Contact your healthcare provider if any concerning symptoms occur.

Adequate nutritional support is essential for preventing weight loss in patients and survivors of head and neck cancer. If a survivor has difficulty eating and/or maintaining their weight, they should consult with an oncology dietician for help in managing this concern. Sometimes, survivors benefit from having a feeding tube to assist with nutrition if eating and/or swallowing are extremely difficult. Survivors should stop smoking l, if they have not yet done so, as smoking may drastically increase the risk of a second cancer or recurrence. Survivors are also advised to refrain from heavy or daily alcohol use.

Good dental care and regular follow-up with a dentist is especially important for survivors who had surgery and/or radiation. These survivors are at a greater risk of developing tooth decay (cavities) because of the persistent dry mouth that often results from surgery and/or radiation. Survivors who have undergone radiation are also at greater risk for osteoradionecrosis, which is damage to the jaw bone that can result in a fractured bone. The main symptom of this is pain in the jaw. Osteoradionecrosis is more common after tooth infection, extraction or trauma and may require surgery to repair the damage.

Quality of life can be drastically altered in survivors of head and neck cancers. Depression is common and survivors should feel free to discuss any difficulty coping, anxieties, or depressed thoughts/mood with their health care provider.

Summary:

  • Comprehensive physical exam with particular attention to the head, mouth, neck, and regional lymph nodes at least once per year. The frequency of physical exams by your healthcare provider, bloodwork and imaging studies should be determined by the oncologist based on tumor type, stage and treatment received.
  • Report any signs/symptoms concerning for recurrence, including weight loss, expectorating blood, difficulty swallowing, difficulty opening the mouth, persistent sores in the mouth, or earache (especially when swallowing).
  • Consult a dietician for any nutrition concerns.
  • Consider seeing specialists for bothersome symptoms, including physical and occupational therapists, lymphedema therapists, speech and swallowing experts, prosthetic manufacturers, pain management specialists and orthodontic specialists.
  • See a dentist twice a year and practice meticulous oral care. Your dentist may recommend frequent fluoride treatments.
  • Do not smoke. Talk to your healthcare team about quitting if you do. Refrain from heavy alcohol use.
  • Report any concerns of depression or anxiety to your healthcare provider. Consider counseling or support groups to help you cope with any concerns.
  • Various therapy disciplines can help in managing the side effects of treatment, including physical and occupational therapy, speech and swallowing experts, dieticians, plastic surgeons and prosthetic manufacturers and orthotics specialists.

Removal of the Thyroid (thyroidectomy)

The thyroid gland is located in the neck, just below the larynx (voice box), and is responsible for converting iodine to thyroid hormones. Partial removal of the thyroid (usually performed in patients with papillary or follicular type thyroid cancer) puts a survivor at risk of developing hypothyroidism (a low level of thyroid hormone production). Removal of the entire thyroid renders the survivor with hypothyroidism that will require lifelong treatment. After surgery to remove part or all of the thyroid and nearby lymph nodes, tissues or organs, such as the parathyroid glands, patients may need to take medicine (thyroid hormone) and vitamin and mineral supplements (vitamin D and calcium) to replace the lost functions of these organs. In some cases, certain nerves or muscles may be damaged or removed during surgery. If this happens, the patient may have voice changes, such as hoarseness or loss of voice, or one shoulder may hang lower than the other.

Regardless of the type of surgery, once disease free, survivors should have a thyroid exam and a history and physical performed annually by their healthcare provider to evaluate for symptoms suggestive of thyroid issues, such as hypothyroidism. Survivors should be cared for either by a primary care doctor familiar with caring for thyroid cancer survivors or an endocrinologist. In addition, survivors should have a neck ultrasound initially at 6 and 12 months after treatment and then annually for 3-5 years or longer depending on stage and type of cancer. Those with metastatic disease may require imaging with CT scan or MRI. The survivor will need annual blood work to check thyroid function tests, including TSH (thyroid stimulating hormone) and T4 (thyroxine), and thyroglobulin. Bloodwork may be more frequent if the survivor is taking replacement medication (see below).

Nearly all patients who have part or the entire thyroid removed will take thyroid hormone pills to replace the natural hormone thyroxine. Survivors needing thyroxine replacement therapy, a medication called levothyroxine, may require more frequent bloodwork, initially every 6-8 or 8-12 weeks to ensure the medication dose is sufficient and then every 6-12 months once levels areregulated on medication. The goal of the medication is to suppress TSH. Therefore, it is important that the correct dose be taken and monitored. By taking levothyroxine and thus keeping TSH suppressed, the growth of any remaining thyroid cancer cells slows down, which lowers the chance of a recurrence or, in other words, the chance that the disease will return.

Levothyroxine should be taken in the morning one hour prior to eating. Levothyroxine can interact with other medications, so please check with your healthcare provider about restrictions prior to beginning any new medication. A high-fiber diet, soy-containing supplements, and walnuts can also interfere with the effects of levothyroxine. This medication seldom causes side effects when given at the correct dose. However, a few patients may get a rash or lose some of their hair during the first months of treatment. Your health care provider will closely monitor the level of thyroid hormone in the blood during follow-up visits. Too much thyroid hormone may cause patients to lose weight, become irritable, have sleep disturbances, changes in appetite, increase in frequency of bowel movements, decreased menstrual flow, tremors, muscle weakness, and to feel hot and sweaty. It may also cause chest pain, cramps, and diarrhea. These are symptoms of hyperthyroidism. If the thyroid hormone level is too low, the patient may gain weight, feel tired, fatigued, depressed, experience reduced concentration, hoarseness, joint pains, muscle cramps, constipation, menstrual cycle disturbances, feel cold, have dry skin, or brittle hair. This condition is called hypothyroidism. Survivors should report any of these symptoms to their healthcare provider.

Levothyroxine can cause problems for those with heart disease, clotting disorders, diabetes, and disorders of the adrenal or pituitary glands. Please be sure to tell your provider if you have or if you develop one of these conditions. Levothyroxine is safe to take while pregnant and breast feeding, but one may need more frequent monitoring of blood work during this time. It is important to communicate closely with your healthcare provider so that you are feeling well and the thyroid hormone replacement is managed correctly.

There are some long-term risks of continued TSH suppression. Leovthyroxine can affect the heart, causing atrial fibrillation (an irregular heartbeat) and an exacerbation of angina (chest pain) in patients with some types of heart disease. In addition, women may be at an increased risk for osteoporosis, especially those who are postmenopausal.

A survivor whose follow-up care is complicated or difficult to manage, for example a person with continued abnormal thyroid function tests or someone with new or recurrent symptoms, may benefit from referral to an endocrinologist to manage thyroid levels, replacement treatment, and on-going care.

Hypoparathyroidism

For those with complete removal of the thyroid (thyroidectomy), or those who have received radiation and/or I-131 therapy, hypoparathyroidism can also be a lasting result of therapy. Hypoparathyroidism is a result of damage to or removal of the parathyroid glands, which are located behind the thyroid gland. Loss of these glands results in a lack of parathyroid hormone, which is responsible for regulation of calcium and phosphorus in the blood. Symptoms of hypoparathyroidism, resulting from low blood calcium, include numbness and tingling of the area around the lips, or fingers and toes, muscle cramps or spasms. Management of hypoparathyroidism includes vitamin D and calcium supplements. Monitoring of parathyroid hormone levels, blood calcium, phosphorus, and magnesium levels are required. Initially, these blood tests will be weekly to monthly and eventually will be done just twice a year. An Electrocardiogram (ECG or EKG) may be donetodetect arrhythmias (irregular heart beats) associated with low calcium levels and hypoparathyroidism. A bone density test, which evaluates the bones for osteoporosis and osteopenia, may also be conducted, often as a base-line prior to starting treatment.

A special note for survivors of  Medullary Thyroid Cancer

A survivor of medullary thyroid cancer (MTC) should undergo genetic testing and counseling. One out of five MTCs results from a genetic abnormality or familial syndrome. Genetic testing can find the mutation in the RET gene seen in familial MTC and MEN-2 (multiple endocrine neoplasia type 2) syndromes. People with MEN-2 syndromes are at increased risk for development of tumors called pheochromocytoma and parathyroid adenoma. If a person has one of these mutations it is very important that his/her family is also tested including children and pre-teens. Almost all children and adults with a positive genetic test will develop MTC. Some hereditary forms of MTC affect children and young adults. It is recommended that those with a positive genetic test undergo a total thyroidectomy so as to prevent cancer from developing.

 Survivors of MTC should also have additional blood work checked. Along with thyroid function tests and thyroglobulin levels, calcitonin and carcinoembryonic antigen (CEA) should be checked. If these levels begin to rise, a CT scan or MRI may be performed to determine if there is disease recurrence. 


A special note for survivors of Papillary or Follicular Thyroid Cancers

Since the thyroid gland has been completely removed and ablated, a radioactive iodine scan will be done 6-12 months after the initial therapy is completed. If this scan shows no evidence of disease, most likely you will not need another scan unless symptoms or other abnormalities arise.

  •  Survivors should have thyroid exam and a history and physical performed annually. A neck ultrasound should be done initially at 6 and 12 months after treatment and then annually for 3-5 years or longer depending on stage and type of cancer. 
  • Annual blood work to check thyroid function tests should also be done by the health care provider. Bloodwork may be more frequent if on replacement medication.
  • Contact your healthcare provider if you are on thyroid replacement medication and start to experience any changes in how you are feeling as this may be an indication that the replacement is not at the correct dose.  

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.

Follow-up Care

Head & Neck: Tongue, Lip, Oropharynx, Nasopharynx

After receiving treatment for head and neck cancer, it is important for survivors to adhere to their oncology team’s plan for follow-up care, including physical examinations, radiology tests, dental care and reporting concerning symptoms to their physician. There are several types of cancer that fall into the category of “head and neck cancer” and the National Comprehensive Cancer Network Clinical Practice Guidelines are helpful in determining the general recommendations for follow up care of your cancer. The following are general recommendations to discuss with your oncology team:

  • Physical exam every 1-3 months for year 1, then every 2-4 months for year 2, then every 4-6 months for years 3-5, then every 6-12 months thereafter.
  • Post-treatment baseline imaging of the primary site is recommended within 6 months of completing treatment. Further imaging should be conducted when your physician feels there is a concerning symptom, but is not needed routinely.
  • If your neck was in the radiation treatment field, thyroid stimulating hormone (TSH) levels should be checked every 6-12 months, as radiation can impair thyroid function.
  • If you continue to smoke or use alcohol, you should be referred to a cessation or counseling program to help you quit.
  • If your mouth was in the treatment field, you should have routine dental evaluations to prevent and identify any long-term damage early.
  • Referral for speech, hearing and swallowing rehabilitation if needed.

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.

General Cancer Screening For Men
 
Cancer screening tests are designed to find cancer or pre-cancerous areas before there are any symptoms and, generally, when treatments are most successful. (Learn more about screening tests) Various organizations have developed guidelines for cancer screening for men. While these guidelines vary slightly between different organizations, they cover the same basic screening tests, including those for prostate and colorectal cancers. 
 
During routine health exams (at any age) your healthcare provider may also evaluate for cancers of the skin, mouth, thyroid and testes. Not all screening tests are right for everyone.  Your personal and family cancer history, and/or the presence of a known genetic predisposition, can affect which tests are right for you and at what age you begin them. Therefore, be sure to discuss these with your healthcare provider. Your care plan will also include a section on follow up care for your type of cancer, and these recommendations override the general screening recommendations for that particular cancer in the general population.
 
Prostate cancer
Prostate screening recommendations from the American Cancer Society (ACS) and the National Comprehensive Cancer Network (NCCN) recommend that men discuss the risks and benefits of prostate cancer screening with their physician, and make an informed decision about whether to be screened or not. Men at average risk for prostate cancer should have this discussion starting at age 50. Men with a father or brother who had prostate cancer before age 65, and all African American men, should have this talk starting at age 40 or 45. If you decide to be tested, you should have a PSA blood test with a digital rectal exam. How often you are tested will depend on your PSA result and family history. For more information, please see the document, Prostate Cancer: Early Detection.
 
Testicular cancer screening
The majority of testicular cancers occur between the ages of 15 and 45. All men should examine their testicles regularly, be familiar with their normal look and feel, and report any changes to their healthcare provider for further investigation. Visit the ACS for a guide to performing a testicular self-exam.
 
For More Information:
Visit the American Cancer Society to learn more about general screening recommendations.
 
Colon and Rectal Cancer Screening
 
Most men and women over the age of 50 should undergo routine screening for colon and rectal cancer. Testing may be appropriate for younger people with a high-risk personal or family health history.
Options for colon cancer screening can be divided into those that screen for both cancer and polyps, and those that just screen for cancer. Tests that screen for cancer and polyps include flexible sigmoidoscopy, colonoscopy, double-contrast barium enema, or CT colonography (virtual colonoscopy). Tests that screen mainly for cancer include stool testing for blood, or stool DNA testing. Learn more about colorectal cancer screening options.
The “preferred screening” recommended by the American College of Gastroenterologists is a colonoscopy every 10 years. The ACS recommends screening beginning at age 50 (unless you are considered “high risk,” see below), using one of the following testing schedules:
Tests that find polyps and cancer
(Preferred over those that find cancer aloneIf any of these tests are positive, a colonoscopy should be done.)
  • 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
Tests that primarily test for cancer
  • Yearly fecal occult blood test (FOBT)*, or
  • Yearly fecal immunochemical test (FIT) *, or
  • Stool DNA test (sDNA), interval uncertain*
* The multiple stool take-home test should be used. One test done by the doctor in the office is not adequate for testing. A colonoscopy should be done if the test is positive.
Talk with your doctor about your medical history, and what colorectal cancer screening test and schedule is best for you. For more information on colorectal cancer from the ACS, read: Colorectal Cancer: Early Detection.
Individuals at higher risk of colon cancer should have screening earlier and potentially more frequently. Individuals at higher risk of colon and rectal cancer include:
·      Individuals with a family history of colon or rectal cancer in a relative who was diagnosed before the age of 60.
·      Individuals with a history of polyps.
·      Individuals with inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
·      Individuals with a genetic predisposition to colon or rectal cancer, such as hereditary non-polyposis colon cancer (HNPCC) syndrome or familial adenomatous polyposis (FAP) syndrome.
 
For more detailed information regarding screening for individuals at higher risk for colon cancer, see the ACS guidelines for screening for high risk individuals.
  
 
Sun Exposure and Skin Cancer Risk
 
Skin cancer is the most commonly diagnosed type of cancer, and rates are on the rise. However, this is one cancer that in most cases can be prevented or detected early. While you may hear that you need the sun to make vitamin D, in reality you only need a few minutes a day to do this. Exposure to ultraviolet (UV) rays, either by natural sunlight or tanning beds, can lead to skin cancer. In addition, UV rays lead to other forms of skin damage, including wrinkles, loss of skin elasticity, dark patches (sometimes called age spots or liver spots), and pre-cancerous skin changes (such as dry, scaly, rough patches). Although dark-skinned people are less likely to develop skin cancer, they can and do develop skin cancers, most often in areas that are not exposed to sun (on the soles of the feet, under nails, and genitals).
 
You can do a lot to protect yourself from damaging UV rays and to detect skin cancer early. Start by practicing sun safety, including using a broad spectrum sunscreen (which protects against UVA & UVB rays) every day, avoiding peak sun times (10am-4pm, when the rays are strongest) and wearing protective clothing such as hats, sunglasses and long sleeved shirts.
 
Examine your skin regularly so you become familiar with any moles or birthmarks. If a mole has changed in any way, you should have a healthcare provider examine the area. This includes a change in size, shape, or color, the development of scaliness, bleeding, oozing, itchiness, or pain, or if you develop a sore that will not heal. If you have a lot of moles, it may be helpful to make note of moles using photographs or a “mole map”. SkinCancerNet has a helpful guide to performing a skin exam
 
Learn more about the types of skin cancer on OncoLink and the American Academy of Dermatology’s SkinCancerNet and the Skin Cancer Foundation.
 
 
Healthy Lifestyle
 
For some cancer survivors, the experience is the impetus to making healthy lifestyle changes. It may seem insignificant, but these changes have been shown to reduce the risk of the cancer coming back or a new cancer developing. Below are some tips on adopting a healthier lifestyle.
 
  • 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.


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