Survivorship: Late Effects After Treatment for Hodgkin Lymphoma
What is a late effect?
A late effect is as a side effect related to a cancer diagnosis or treatment that happens months to years after treatment. Some side effects that you develop during treatment can last for months to years after treatment is completed (for example, fatigue or neuropathy). These are often called long term side effects.
Late effects can be health issues or psychological, emotional and practical challenges.
Late Effects After Radiation for Hodgkin Lymphoma
Side effects from radiation treatment are directly related to the area of the body being treated. Any area in the treatment field has a risk of being damaged, causing side effects. As radiation techniques have improved over the years, the risk of late effects has decreased.
Throat and Swallowing Problems
- Radiation to the upper airway and throat area can lead to developing scar tissue in the throat. This can happen many years after treatment. This scarring can make the throat narrow, making it difficult to swallow or cause heartburn. If you develop these symptoms, you should be seen by your provider. You may benefit from seeing a gastroenterologist or surgeon. They may be able to use a stent or balloon to stretch the scar tissue and eliminate the narrowing.
- This scar tissue can also make breathing and speaking difficult. Common symptoms include a hoarse voice or a chronic cough. If you are having severe trouble breathing or are coughing up blood, contact your care team immediately or go to an emergency room.
Radiation fields involving the lung can lead to scarring (fibrosis), inflammation (pneumonitis), and restrictive or obstructive lung disease.
- The risk for these problems is higher with higher doses of radiation, if you also got certain chemotherapies (bleomycin, busulfan, BCNU, and CCNU), or if you had part of the lung removed (lobectomy).
- Radiation can cause scarring in the lungs that may affect blood vessels. Damage to the blood vessels can lead to coughing up blood. If you cough up blood, you should be checked out right away by a healthcare provider, either in the office or the emergency room.
- At your yearly physical your provider will examine your lungs and ask about possible symptoms (cough, shortness of breath, wheezing).
- You should get a flu vaccine every year and the pneumococcal vaccine.
- You should avoid smoking, secondhand smoke, vaping, and hookah products, as these can cause further lung damage.
Radiation treatment to the chest can affect the heart. This can lead to different types of heart disease, including heart failure, high blood pressure, valve problems, and scarring or inflammation of the heart tissue.
- The risk of heart failure depends on the amount of radiation you received, what other cancer treatments you had, and your heart health prior to treatment.
- When radiation treatment is planned, it is designed to avoid the heart as much as possible, but in many cases, it cannot be completely avoided.
- You should have a yearly physical by your primary care provider. They should listen to your heart, check your blood pressure, look for signs of heart trouble such as swelling in your legs/feet, and check your cholesterol and blood sugar levels with a blood test.
- You should strive for a heart-healthy lifestyle, including regular exercise, not using tobacco, and eating a healthy diet.
- If you are at a high risk of heart problems based on your treatments, your provider may suggest a screening echocardiogram to evaluate heart function.
Damage to the Bones
Radiation can cause small cracks (fractures) in the bones that are in the treatment field. Try to avoid trauma including falls or accidents. If you do get hurt, ask your provider if you need any imaging tests to check for bone damage.
Spinal Cord Damage
The spinal cord can be in the field of radiation treatment for “mantle field” therapy. This can cause damage to the nerves in the spine.
- Symptoms can include loss of strength, feeling, or coordination of the arms or legs, paralysis, or problems with bowel or bladder control. Sometimes nerve damage can cause a feeling of electric shock spreading down the arms or legs.
- If you develop these symptoms, you may need imaging tests or to be seen by a neurologist for further workup.
Radiation can also cause damage to the bones of the spine. This can result in a reduction in height or change in the curvature of the spine. Radiation to these bones can also put them at risk for fracture. If you have any new back pain you should call your provider right away. You may need x-rays or other imaging tests.
The thyroid gland is located in the neck, just below the larynx (voice box). Radiation fields that include the thyroid gland can lead to thyroid problems, including hypothyroidism, hyperthyroidism, and thyroid nodules/tumors. Most often, thyroid issues caused by radiation develop 2-5 years after treatment, while thyroid nodules are more often seen10 years or more after treatment. The risk increases with the amount of radiation received to the area.
- Survivors should have a thyroid exam and a physical performed each year by their provider to check for thyroid issues.
- If the thyroid was directly in the radiation field, TSH (thyroid-stimulating hormone) levels should be checked every 6-12 months. This is done using a blood test.
- If you develop thyroid problems, you should be seen by an endocrinologist.
- Symptoms of hypothyroidism (underactive thyroid, the most common complication) include fatigue, weight gain, constipation, dry skin, brittle hair or always feeling cold.
- Symptoms of hyperthyroidism (overactive thyroid) include weight loss, irregular or fast heartbeat, sweating and being irritable.
- You may also be at risk for hypoparathyroidism, a condition resulting from damage to the parathyroid glands (located in the same area as the thyroid). Signs of hypoparathyroidism are tingling in your fingers, toes and lips, muscle aches, muscle spasms, and fatigue.
If you notice any of these symptoms, you should contact your care provider.
Radiation can lead to permanent changes in the skin.
- You may develop new scars or notice changes in the color or texture of your skin. Radiation can also change the color and texture of your hair or can cause permanent hair loss 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 in this area.
- You may develop chronic or recurring ulcers of the skin in the area treated. Blood vessels of the skin may become dilated and more visible, although this is not harmful.
- If the skin feels tight or sore, you can apply vitamin E to the skin.
- Use fragrance and dye-free soaps and moisturizers in the area if your skin is sensitive after radiation.
- After radiation, the skin in the treated area is more sensitive to sunlight. This sensitivity will last for your lifetime. Practice sun safety, using plenty of sunscreen, wear a wide-brimmed hat, and keep skin in the treated area covered with clothing. Try to avoid being out in the sun between the hours of 10 am-4 pm when it is the strongest.
If you notice any new or worsening skin issues anywhere on your body, you should contact your provider for an assessment.
Risk of Breast Cancer
- Radiation therapy fields that include breast tissue can lead to breast cancer later on in life. Because of this, the recommendations for breast cancer screening for you are different than the general public.
- Women who received radiation to the chest should have annual mammograms starting 8-10 years after radiation, or at age 40, whichever comes first.
- If you received radiation to the chest wall between the ages of 10 and 30, your mammograms may start earlier, and you may also need yearly breast MRI.
- Each case is unique and you will want to talk to your provider about what tests and how often you should have them.
- Make sure that you are familiar with the normal feeling of your breasts. While monthly breast exams are no longer part of recommended screening tests, it is important to be familiar with your breasts and to report any changes to your provider. Changes to report include a new lump or mass, a change in the look and feel of the skin on your breast, or any discharge coming out of your nipple.
- If you are a man who has had radiation to the chest, you should be aware of your increased risk of getting breast cancer. There are no recommendations for screening tests for men who have had chest radiation. However, you should report any abnormal symptoms or findings, such as lumps, skin changes, or nipple discharge, to a healthcare provider right away.
Managing Late Effects
If you experience any concerning or persistent symptoms, contact your care team. Some side effects require specialized care from healthcare providers experienced in working with cancer survivors.
Interdisciplinary survivorship clinics are available at many cancer treatment sites. If a clinic is not available near you, talk with your oncology care team about resources for managing your late effects.
After treatment, talk with your oncology team about receiving a survivorship care plan, which can help you manage the transition to survivorship and learn about life after cancer. You can create your own survivorship care plan using the OncoLife Survivorship Care Plan.
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