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

Side Effects After Cancer Treatment

There are different types of side effects you may have during or after cancer treatment.

• Short-term: side effects that happen while you are on treatment and end shortly after treatment. Example: mouth sores that heal within a few weeks after treatment is finished.
• Long-term: side effects that happen while you are on treatment and last for months to years. Some of these side effects will not go away. Example: neuropathy.
• Late effects: side effects that happen months to years after you have finished treatment. Example: scar tissue forming and causing health issues.

This article focuses on the late effects of radiation treatment for sarcoma of the abdomen/retroperitoneum.

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 affect the area of the body in the treatment field. The treatment field includes the cancer and in some cases nearby healthy tissue. How radiation is given has changed over the years, leading to a lower risk of late effects. Talk with your radiation oncologist to find out which areas were in your treatment field.

Late effects of radiation treatment for sarcoma of the abdomen or retroperitoneum include:

Bladder Problems

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

• Developing scar tissue: Damage to the tissue of the bladder can lead to scar tissue. This can lead to a decrease in how much urine your bladder can hold.
• Hemorrhagic Cystitis: If you had chemotherapy medicines like Cyclophosphamide and Ifosfamide which are known to cause bladder damage, you may have hemorrhagic cystitis. This causes bleeding from the bladder lining. Signs of hemorrhagic cystitis are:
  • Urinary frequency (needing to pee often).
  • Urinary urgency (needing to go quickly).
  • Blood in your urine.
  • Pain when peeing.
• Urinary Tract Infections (UTI): Radiation to the bladder can make you more likely to get urinary tract infections. This type of infection can be treated with antibiotics. Signs of a UTI are:
  • A burning feeling when urinating (peeing).
  • Urinary frequency (needing to go often).
  • Blood in your urine.
• Bladder cancer: Radiation to the bladder can increase your risk of developing bladder cancer. Signs of bladder cancer are:
  • Urinary frequency (needing to go often).
  • Blood in your urine.
  • Needing to urinate at night.
  • Incontinence (not being able to control your bladder).

Call your care provider right away if you have any of these symptoms. These late effects all have similar signs. You may need urine tests or cystoscopy (putting a small tube with a camera into the bladder). You should not drink alcohol or smoke tobacco as these can irritate the bladder and increase your risk of bladder cancer.

Bowel Problems

The bowel is sensitive to the effects of radiation. If the rectum, colon, or small bowel are in the treatment area, late effects can include:

• Scarring and strictures: Damage to the tissue of the bowel can lead to scar tissue. This scar tissue can lead to a stricture (narrowing of a part of the body) and cause a bowel obstruction (bowel block). A bowel obstruction is when the normal movement of stool through your 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. Tell your provider right away if you have any dark or black colored stools, bright red blood in your stools, in the toilet water, or on the toilet paper. You may need testing with a colonoscopy to find the area that is bleeding.
• Chronic diarrhea: Tell your provider if you have diarrhea that is causing weight loss. 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 look at your diet and give you ideas 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, the 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 you finish treatment.
  • If you were treated before the age of 18, you should begin colon cancer screening with colonoscopy or DNA stool testing 5 years after treatment or at age 30, whichever is later.
  • 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.

Talk with your provider about when you should start colon cancer screening.

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 erectile dysfunction (the inability to get and maintain an erection).

• If you want to have a child, it may help to speak with a fertility specialist. They can check 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 have an 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 help. If these medicines are not helping, you should see a urologist. There are other ways that you can have 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 have 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 using vitamin E on external tissues or using suppositories on 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. Topical lidocaine (a numbing agent) may help if you are having pain in the vulvar region.
• If sexual health changes are affecting your quality of life, talk about them with your providers. It may help to see a therapist who works 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. They can review the cancer treatments that you got and talk about options with you.
• After radiation to the ovaries, some people will go into early menopause (menopause that occurs before natural age). Early menopause can increase your risk for osteoporosis or heart disease. It may help to see an endocrinologist even if you do not wish to become pregnant. They can talk about ways to reduce these risks, like 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 get 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 higher 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 yearly check-ups. High blood pressure may be treated with medications.
• Your team will also check your kidney function with 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 more 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.

• You will have a blood test called a liver function test (LFT) 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 more evaluation.

Stomach Problems

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

• Signs of stomach problems are new or worsening belly pain, frequent vomiting or heartburn, or blood in your vomit or stool. Call your care team right away if you have 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 want to take medicine to lessen the amount of acid being made or to coat/protect your stomach.

Nerve Damage

Survivors who had radiation to the abdomen or retroperitoneum may have nerve damage. This damage is caused by scar tissue in the area pressing the nerves or stopping the blood supply to nearby muscles.

• Radiation injury to the nerves and muscles is sometimes called radiation fibrosis syndrome. It develops in the years after 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, like blood pressure and bowel and bladder control. ANS dysfunction can cause lightheadedness, fainting, extreme constipation, urinary incontinence (loss of control of urine), and erectile dysfunction (trouble getting or keeping an erection).
• If you have any of these symptoms, tell your provider. Some of these things can be caused by other health issues, so your provider will need to determine the cause.
• If radiation fibrosis is the cause, it may help to see a cancer rehabilitation physician or physiatrist, and physical or occupational therapists. These specialists can help you manage your symptoms with therapy, medications, and assistive devices.

Spinal Cord Damage

The spinal cord may 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 (not being able to move), or problems with bowel or bladder control. Sometimes nerve damage can cause a feeling of electric shock down the arms or legs.
• If you have any of these issues, you may need imaging tests or to be seen by a neurologist for more 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, call your provider right away. You may need x-rays or other imaging tests.

Skin Changes

Radiation can lead to changes in the skin that don't go away.

• You may find new scars or changes in the color or texture of your skin. Radiation can also change the color and texture of your hair or can cause hair loss that may never grow back in the treated area.
• The soft tissue and muscles under the skin can cause scarring and/or shrinkage, which can lead to a loss of flexibility and movement or chronic swelling in the area treated.
• You may get chronic or recurring ulcers of the skin in the area treated. Blood vessels of the skin may become dilated (larger) and more visible, but this is not harmful.
• If the skin feels tight or sore, you can put vitamin E on 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 not be 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, you should contact your provider for an assessment.

Managing Late Effects

Tell your care team about any new or worsening symptoms. Some side effects need care from healthcare providers who specialize in working with cancer survivors. There are interdisciplinary survivorship clinics at many cancer centers. If there is not a survivorship clinic near you, talk with your oncology care team about support for managing your late effects.

After treatment, talk with your oncology team about getting a survivorship care plan, which can help you in your transition to survivorship and learn about life after cancer. You can build your own survivorship care plan using the  OncoLife Survivorship Care Plan.