Survivorship: Late Effects After Radiation for Sarcoma (Abdomen/Retroperitoneum)

What is a late effect?

A late effect is 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 Sarcoma (to the abdomen or retroperitoneum)

Side effects from radiation treatment are directly related to the area of the body being treated. Any area in the treatment field can be damaged, causing side effects. As radiation techniques have improved over the years, the risk of late effects has decreased.

Bladder Problems

Radiation to the pelvic area can cause late effects to the bladder including:

• Developing scar tissue, which can lead to a decrease in how much urine your bladder can hold.
• If given with chemotherapy medicines known to cause bladder damage (cyclophosphamide, ifosfamide), late effects can include hemorrhagic cystitis that causes bleeding from the bladder lining. Signs of hemorrhagic cystitis include urinary frequency (needing to pee often) and urgency (needing to go quickly), blood in your urine, or pain when peeing. You should report any of these things to your provider right away.
• Radiation to the bladder may also make you more prone to urinary tract infections. This type of infection can be treated with antibiotics. If you have burning when urinating (peeing), frequency (needing to go often), or see blood in your urine, call your provider.
• Radiation to the bladder can increase the risk of developing bladder cancer. Signs of this include blood in the urine, urinary frequency (going often) and urgency (needing to go right away), urinating at night, and incontinence. Contact your care provider if you have any of these.
• These late effects all have similar signs. You may have urine tests or cystoscopy (inserting a small tube with a camera into the bladder) to figure out what is causing your issues. It is best to not drink alcohol and or to smoke tobacco, as these irritate the bladder and increase the risk of bladder cancer.

Bowel Problems

The bowel is sensitive to the effects of radiation. The late effects that may occur after radiation treatment that includes the rectum, colon, or small bowel include:

• Scarring and strictures: Damage to the tissue of the bowel can lead to scar tissue. This scar tissue can cause a bowel obstruction. A bowel obstruction is when the normal movement of stool through the bowel is blocked. Call your provider if you are having any abdominal pain, constipation, vomiting, weight loss, or bloating. If you have severe abdominal pain along with vomiting and constipation you should be seen by a provider right away, either in the office or the emergency department.
• Ulceration and bleeding: Ulceration and bleeding can be caused by damage to the bowel tissues. Report any dark or black colored stools, bright red blood in your stools, in the toilet water, or on the toilet paper to your provider right away. You may need testing with a colonoscopy to find the area that is bleeding.
• Chronic diarrhea: Report diarrhea that is causing weight loss to your care team. Medications to lessen diarrhea may be helpful. You may benefit from meeting with a gastroenterologist (GI Doctor). You should also meet with a registered dietitian (RD) who can help evaluate your diet and give you suggestions to lessen diarrhea and maintain or gain weight.
• Fistula formation: A fistula is a connection (hole) between two parts of the body that are not normally connected. A fistula can form between the bowel and bladder, bowel, and female reproductive system (uterus/ vagina), or the bowel and the skin. If you have urine, feces, or blood coming out of any opening that it should not be, you should call your provider right away.
• Colon cancer: Radiation to the bowel can lead to colon cancer years after treatment is complete.
  • If you were treated before the age of 18, it is recommended to begin colon cancer screening with colonoscopy or DNA stool testing 5 years after treatment or at age 30, whichever occurs later.
  • Screening for the general population begins between the ages of 45-50. You should consider these 2 guidelines when deciding when to start colon cancer screening.
  • You may need earlier screening if you have irritable bowel disease, chronic diarrhea or bleeding, ulcerative colitis, colon cancer in your family, or previous gastrointestinal cancers or polyps.

Impact on Reproductive Organs, Sexual Function, and Fertility for Men

Radiation to the pelvis in a man may cause problems with sexual health such as infertility, low testosterone levels, low sperm count, or the inability to get and maintain an erection (erectile dysfunction).

• If you want to have a child, you may benefit from speaking to a fertility specialist. They can evaluate the health of your sperm and your ability to father a child.
• In some cases, the prostate gland is affected by radiation, which can lead to a decrease in seminal fluid. This can cause a man to have a “dry orgasm.” In these cases, the man is still able to achieve orgasm but will have little or no fluid released.
• You should try to speak openly with your provider about these issues. For those having erectile dysfunction, medications such as sildenafil (Viagra) may be useful. If these medicines are not helping, you should see a urologist. There are other ways that you can achieve an erection, such as using an implant or pump.

Impact on Reproductive Organs, Sexual Function, and Fertility (for Women)

You may have long-term changes to your vagina and uterus after radiation to your pelvis. You may experience vaginal dryness, atrophy (shrinkage and thinning of the tissues), less feeling/sensation in the genital area, bleeding, or painful intercourse.

Sexual Health

• Water-based lubricants and moisturizers (Replens) can help to make sexual intercourse more comfortable.
• Regularly applying vitamin E to external tissues or using suppositories to apply to vaginal tissue may help to strengthen the tissues and reduce friction and discomfort. Some women may benefit from low-dose estrogen suppositories.
• Scar tissue in the vagina may cause the size of the vagina to narrow or shorten. Regular use of vaginal dilators, which are placed in the vagina for short periods of time, is recommended for all women who have had radiation to the pelvic area. This will help stretch the vaginal tissues and make intercourse and vaginal exams more comfortable.
• Physical therapy to strengthen pelvic floor muscles has been shown to decrease pain with intercourse and improve sexual health. Women with pain in the vulvar region may find relief with topical lidocaine (a numbing agent).
• If sexual health changes are affecting your quality of life, discuss them with your providers. You may find it helpful to see a therapist experienced in working with cancer survivors with sexual concerns.

Fertility and Childbearing

Radiation fields that include the ovaries can result in damage to a woman's supply of eggs (oocytes). The risk of infertility is higher with higher doses of radiation. Your period will likely stop during treatment but may return in women younger than 40. If it returns, you may still be at risk of going into menopause earlier than your peers. This can be important to know for family planning purposes.

• If you would like to become pregnant, it can be helpful to see a reproductive endocrinologist. S/he can review the cancer treatments that you got and review options with you.
• After ovarian radiation to the ovaries, some women will go into early menopause (menopause that occurs before natural age). Early menopause can increase your risk for osteoporosis or heart disease. It may be helpful to see an endocrinologist even if you do not wish to become pregnant. They can discuss ways to reduce these risks, including hormone supplements, calcium, vitamin D, and exercise, depending on your case.
• Radiation to the uterus (womb) can cause the uterus to shrink, have less elasticity (ability to stretch) and develop scar tissue. These changes in the uterus can cause a higher risk of miscarriage, preterm labor, and babies born at low birth weight. If you wish to become pregnant, you should be followed by a high-risk pregnancy specialist.

Damage to the Kidney

When the radiation field includes the kidney(s), renal insufficiency (decreased kidney function and hypertension (high blood pressure) can happen.

• The risk for kidney problems after radiation is increased if you have diabetes, only have one kidney, have a history of high blood pressure or if you have taken other medications that can cause kidney damage.
• Have your blood pressure checked at your annual check-ups. If needed, high blood pressure may be treated with medications.
• Your team will also monitor your kidney function through blood testing (basic metabolic panel) and urine tests (urinalysis).
• Eating a balanced, healthy diet can promote healthy blood sugar levels and help to protect your kidneys from further damage.

Liver Damage

Radiation to the liver may be needed for cancer treatment but also can cause damage to areas of the liver that are healthy.

• Your liver function will be measured by a blood test (called LFTs) before and after treatment.
• Avoid drinking alcohol; it can raise the risk of liver damage.
• If you have yellowing of the eyes and/or skin (jaundice), pain or swelling in your belly, itchy skin, or dark-colored urine, call your care team. You may need to see a gastroenterologist (GI Doctor) for further evaluation.

Stomach Problems

Indigestion and heartburn can be late effects of radiation including the stomach. You may also be at risk for gastritis (irritation of the stomach wall), ulcers, and gastric outlet obstruction.

• Signs include new or worsening belly pain, frequent vomiting or heartburn, or blood in your vomit or stool. Call your care team right away if you experience any of these problems.
• You may need a referral to a gastroenterologist (GI Doctor) to find the cause.
• If you are having heartburn, your care team may prescribe medicine to lessen the amount of acid being made or to coat/protect your stomach.

Nerve Damage

Survivors who received radiation to the chest/chest wall can experience nerve damage. This damage is often a result of scar tissue in the area compressing the nerves or blocking the blood supply to the muscles served by these nerves.

• Radiation injury to the nerves and muscles is sometimes called radiation fibrosis syndrome. It tends to develop in the years following treatment and slowly worsens over time.
• Symptoms can include pain, loss of strength, decreased feeling (sensation), loss of coordination, or loss of movement or function of the muscle. The area affected will depend on the area that was in the radiation field.
• In rare cases, the autonomic nervous system (ANS) can be affected. The ANS controls things you don’t think about, such as blood pressure and bowel and bladder control. Symptoms of ANS dysfunction can cause lightheadedness, fainting, extreme constipation, urinary incontinence, and erectile dysfunction.
• If you develop any of these symptoms, report them to your provider. Some of these concerns can be caused by other health issues, so your provider will need to determine the cause.
• If radiation fibrosis is determined to be the cause, you may benefit from seeing a cancer rehabilitation physician or physiatrist, and physical or occupational therapists. These specialists can help manage symptoms through therapy, medications, and assistive devices.

Spinal Cord Damage

The spinal cord can be in the field of radiation treatment. This can cause damage to the nerves in the spine.

• Signs of this 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 any of these issues, you may need imaging tests or to be seen by a neurologist for further testing.

Radiation can also cause damage to the bones of the spine. This can cause you to be shorter or have a change in the curve of your spine. Radiation to these bones can also put them at risk for fracture (breaks). If you have any new back pain, you should call your provider right away. You may need x-rays or other imaging tests.

Skin Changes

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, use 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.

Managing Late Effects

If you experience any concerning or lasting symptoms, contact your care team. Some side effects require specialized care from healthcare providers experienced in working with cancer survivors. Interdisciplinary survivorships clinics are available at many cancer centers. 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.