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.
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.
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.
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.
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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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”.
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.
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.
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 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.
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 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 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 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:
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.
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.