Sarcoma treatment side effects can differ from person to person, even between people with the same type and stage of sarcoma receiving the same treatment. Partnering with your health care team to manage them is crucial. The better you feel, the more likely you’ll be to complete your scheduled treatment, which can improve your outcome.
Talk to your doctor before treatment begins about the side effects to expect, and find out how to prevent or minimize them (see Table 1). The key is to report side effects as soon as symptoms occur. By addressing them early, your doctor may head off potential complications that could interrupt your treatment. Your health care team will rely on you to communicate regularly so they can help you be more comfortable.
Surgical side effects most commonly include fatigue in the days and weeks following a surgical procedure. The healing of a wound requires a large number of calories (energy obtained from nutrition). Even though you may eat a normal amount following surgery, those calories go to healing of the surgical wound and immune system, thus depleting the rest of the body of calories, leading to fatigue. This process recovers over a period of time. Stiffness and weakness may also occur. Your doctor may prescribe physical therapy for these problems.
In addition to killing cancer cells, radiation therapy may cause damage to normal tissues, which can lead to side effects. Fatigue and skin problems are common. Side effects vary according to the area of the body being treated, the dosage and treatment schedule, your overall health and whether you are receiving any other treatment along with radiation therapy.
Drug therapies also result in certain side effects. Severe side effects are not common, but they can occur with some types of treatment, such as immunotherapy. Immune-related adverse events (IRAEs) can develop rapidly and become potentially life-threatening without medical attention. Cytokine release syndrome is an IRAE associated with adoptive T-cell therapies and monoclonal antibodies. Reactions are usually mild but can be severe and even life-threatening. Symptoms include headache, fever, nausea, rash, low blood pressure, rapid heartbeat and difficulty breathing. Remain alert to symptoms and report them for at least three months after you complete treatment.
If a side effect is very severe, you may need to stop your treatment for a period of time or permanently. However, prompt recognition and early management can often result in rapid resolution and allow you to stay on treatment longer. Thus, it is important to report any side effects to your doctor or nurse as soon as possible.
Make sure you and your caregiver know which symptoms require immediate medical attention and whom to contact. Always seek immediate treatment for medical emergencies such as shortness of breath, high fever, inflammation, swelling or severe abdominal pain. It's a good idea to post your doctor’s contact information, including after-hours telephone numbers, in a convenient location.
Table 1. Strategies for Managing Common Physical Side Effects
|Side Effect||Related Treatment||Ways to Manage|
Alopecia (hair loss)
|Chemotherapy, radiation therapy, targeted therapy||
• Consider a cooling cap• Sleep on a satin pillowcase
• Try hats, caps, scarves, a wig or go natural. Your doctor’s prescription for a “cranial prosthesis” may make the wig eligible for insurance coverage.
Anemia (low red blood cell count)
• Get plenty of rest and regular physical activity to manage fatigue and weakness.
Changes in appetite
|Chemotherapy, radiation therapy, surgery||
• Eat smaller, more frequent meals.
• Eat when most hungry.
• Stock up on high-calorie snacks.
Cognitive dysfunction (“chemo brain”)
Chemotherapy, radiation therapy
• Take notes, keep lists and use a planner.
• Don’t multitask.
• Ask loved ones for reminders and help with decision-making.
|Chemotherapy, radiation therapy||
• Take laxatives only after checking with your doctor.
• Eat high fiber foods.
• Drink plenty of fluids.
• Establish regular bowel habits.
|Chemotherapy, immunotherapy, radiation therapy, targeted therapy||
• Take antidiarrheal medication only after talking to your doctor.
• Report episodes severe enough to keep you housebound.
• Eat smaller, more frequent meals, avoid greasy foods and drink plenty of fluids.
Edema (swelling from fluid buildup in tissues)
|Immunotherapy, targeted therapy||
• Contact your doctor about swelling, stiffness or a heavy feeling in your limbs, or rapid weight gain.
• Limit salt, wear loose clothing and prop your feet up.
|Chemotherapy, immunotherapy, radiation therapy, surgery, targeted therapy||
• Engage only in activities most important to you, balancing activity with rest.
• Try power walking, working up to 30 minutes five times a week.
|Chemotherapy, immunotherapy, radiation therapy, surgery, targeted therapy||
• Ask your doctor before beginning treatment about the risk.
• Explore your fertility preservation options with a fertility specialist.
|Radiation therapy, surgery||
• Ask your health care team about lymphedema care and compression garments.
• Elevate a swollen limb.
|Chemotherapy, targeted therapy||
• Report symptoms promptly.
• Brush teeth often with a soft-bristle toothbrush.
• Eat soft foods and drink plenty of fluids.
|Chemotherapy, immunotherapy, radiation therapy||
• Take antiemetics as prescribed.
• Eat smaller, more frequent meals and drink plenty of fluids to avoid dehydration.
• Avoid bad odors.
• Avoid tight clothes and shoes.
• Keep hands and feet warm.
• Avoid standing for long periods.
Neutropenia (low white blood cell count)
|Chemotherapy, immunotherapy, radiation therapy||
• Wash your hands frequently to help prevent infection.
• Avoid crowds and people who are or have been sick.
• Ask your doctor about “neutropenic precautions.”
Pain (abdominal, muscle, joint)
|Immunotherapy, surgery, targeted therapy||
• Ask your doctor immediately about options for pain relief.
|Chemotherapy, targeted therapy, radiation therapy||
• Use mild soap and thick moisturizer (no alcohol, dye or perfume).
• Talk to your doctor if a rash becomes painful or itchy.
Pain Management: Find Relief and Increase Your Comfort
Pain management has many benefits. Several options are available to help manage and relieve pain associated with the sarcoma itself, the location of the tumor, diagnostic procedures and treatment.
Studies show that people with cancer who have their pain under control are much more likely to finish their treatment on schedule. Your health care team must understand the type of pain you’re experiencing, and that requires you to keep them informed. Keep a detailed diary that you can share with your doctor. Track when pain occurs, how long it lasts, what causes it and if anything makes it better. Speak up when you first begin to feel it. It’s much easier to get ahead of it than treat full-blown pain.
People who feel better are often more active, which can positively affect overall health and emotional well-being. Be sure to talk with your treatment team about the pain relief options available to you.
Categories of Pain
Cancer-related pain is grouped into three categories.
- Acute pain occurs suddenly. It may be related to a diagnostic procedure or treatment and usually resolves once the body recovers and heals.
- Chronic pain, also called persistent pain, lasts for at least one month (typically longer) after treatment and is usually the direct effect of a tumor or cancer treatment.
- Breakthrough pain includes severe flares of pain that “break through” during treatment, even with pain medication. Breakthrough pain can range from mild to severe, lasting minutes to hours.
Pain Management Options
Your doctor may recommend one or more of the following strategies.
Pain medications, a practice known as pharmacotherapy, are a common way to alleviate pain. Mild pain can often be controlled with over-the-counter pain relievers, whereas more severe pain will likely require stronger medications prescribed by your doctor. Types of pain medications include the following.
- Nonsteroidal anti-inflammatory drugs (NSAIDs), or nonopioid analgesics, are intended to relieve mild-to-moderate pain. These drugs are typically available without a prescription.
- Opioid analgesics, or pain relievers, are prescribed to decrease both the perception of and reaction to pain.
- Adjuvant analgesics, including certain antidepressants and anticonvulsants, are designed to relieve pain related to damaged nerve cells or nerve swelling by changing how the affected nerves generate pain signals.
- Bone-modifying agents help reduce pain related to bone complications from metastatic cancer.
Percutaneous pain techniques include nerve blocks, ablative procedures (those that remove body tissue) and vertebroplasty/kyphoplasty or cementoplasty (filling the spinal bones with cement to stabilize them and/or reduce pain).
Targeted drug delivery may be an option if you cannot find pain relief with other pain medication (oral, intravenous, etc.) or if you cannot tolerate side effects. A targeted drug delivery system consists of a small pump and a catheter that deliver pain medication directly to the fluid surrounding the spinal cord (the intrathecal space). The system has been shown to be safe and effective for patients at all stages of the care continuum, especially during end-of-life care.
Intrathecal drug delivery, also called a “pain pump,” sends pain medication directly to your spinal cord through the action of a small pump implanted in the body through an incision in your abdominal wall.
Neurosurgical procedures are designed to stop pain at its source by modifying specific brain and spinal cord fibers that carry pain signals. These procedures are performed by a neurosurgeon, a specialist in surgery on the brain, spinal cord and other parts of the nervous system.
Physiatry, or physical medicine and rehabilitation, helps relieve pain through customized therapy programs designed to enhance mobility, overcome disabilities, improve physical strength and manage pain and other symptoms. Anti-inflammatory injections are a part of this technique.
Integrative oncology addresses symptom control with complementary therapies combined with traditional cancer treatments only shown to be beneficial and safe. Those most commonly used for cancer-related pain include mind-body therapies, acupuncture, and manipulative and body-based therapies.
Palliative treatment uses radiation therapy, chemotherapy or surgery to improve your quality of life, rather than to cure the cancer.
Addressing Opioid Concerns
The opioid crisis is a growing problem that is often highlighted in the media. The fear of addiction may make you hesitate to take prescription medications. It’s important to remember that opioids are only one option for cancer pain. Your doctor will likely consider a variety of nonopioid strategies first to relieve pain, depending on its type and severity. Your treatment team will evaluate your pain level on an ongoing basis to determine if other strategies will be needed to make you more comfortable.
Do not let the fear of addiction keep you from finding pain relief. If your doctor prescribes opioids, you will be monitored closely throughout treatment. Remember, this type of pain is the reason these medications exist.
Knowing what to expect when taking pain medication is important for controlling your pain and keeping you safe. Ask your doctor these questions about taking pain medication.
- What is the dosage, and how often is it taken?
- How long does it take for the medication to start working?
- How long will the pain relief last?
- Should the medicine be taken with food, other medications or supplements?
- What are the common and/or potentially serious side effects?
- What do I do if I take too much medication?
- What if I miss a dose?
- Whom do I call if I have concerns?
Take Care of Your Emotional Well-Being
A cancer diagnosis and treatment can be overwhelming, and you may feel a variety of intense emotions. Along with the suggestions below, you may consider talking with a therapist or mental health professional. Being emotionally healthy will help you better cope with cancer-related issues, so don’t be embarrassed or hesitant to ask your health care team for a referral.
Anger is common before, during and even long after cancer treatment. To avoid expressing bottled up anger in unhealthy ways, find safe and healthy alternatives. Explain your feelings to a trusted friend. Yell at the top of your lungs while you are alone, hit a pillow with your fists or a foam bat, or participate in intense physical activity.
Anxiety, or persistently feeling nervous, stressed or worried, may make it difficult to cope with treatment, function day to day or for your body to properly heal. Explore relaxation techniques such as deep breathing, meditation, muscle relaxation, yoga or massage. Share your anxieties with a good listener. Eliminating caffeine may also be helpful.
Depression is most likely to occur for people with cancer during times of unrelieved symptoms, and it may also be a side effect of certain cancer therapies. It’s extremely important to talk with your doctor about feeling sad, numb, hopeless, helpless, worthless or guilty if the feelings last more than a few days. Seek medical attention immediately if you have thoughts of death or suicide, or of hurting yourself or others.
Emotional overload is common because everything you’re dealing with can seem overwhelming. Try taking charge of the things you can control, and be better prepared by learning all you can about your treatment plan. Ask loved ones to handle routine decision-making for you for now.
Fear is a common reaction to a cancer diagnosis and to undergoing cancer treatment, as you can’t predict how you’ll respond to either one. You may also fear possible changes in your appearance, sexuality or perceptions from others. Try learning all you can about your treatment plan to minimize surprises. Talk with others undergoing similar treatment and explore relaxation techniques.
Grief is an emotion many people with cancer don’t expect, but you may mourn the loss of your health or of a future without the fear of cancer recurrence. Your diagnosis may also trigger grief from losing a loved one to cancer in the past. Give yourself permission to grieve, feel a full range of emotions and turn to loved ones for support.
Guilt may occur if you blame yourself for getting cancer because of health-related actions you did or didn’t take, or if you feel you’re upsetting or being a burden to loved ones. You may even feel guilty about having a negative attitude. Give yourself a break when your attitude isn’t so positive. Share your feelings with other cancer survivors, or consider seeing a counselor.
Loneliness may occur if you feel no one understands, particularly since sarcoma is a rare cancer. You may also feel lonely if a friend or family member stops visiting or calling because he or she doesn’t know how to act. Contact that person and suggest talking about anything other than cancer. Check out sarcoma support groups online, or contact someone in your spiritual community.