Coping with Pelvic Radiation Side Effects

The radiation treatment that anal cancer patients undergo destroys the cancer cells, and this destructive action is intensified by the simultaneous chemotherapy.  But success comes with a price.  Any pelvic radiation can cause side effects, sometimes called “reactions," which are also intensified by the chemotherapy.  One of the classic texts on radiation effects, Radiation Pathology (Luis Felipe Fajardo, Morgan Berthrong and Robert E. Anderson, 2002), comments on the powerful nature of radiation injury, and explains that radiation injury may occur long after the actual exposure; "only death stops its progression."   But these effects are what we exchange for the gift of life from this treatment.   If we remember the bravery of those who survived whole-body radiation in Japan from the atomic bombs, we can manage the consequences of this focused radiation!

Dana Jennings' essay in the New York Times on pelvic radiation (in his case for prostate cancer, but the procedure is the same) provides insight and even some laughter.

Short and Long Term Side Effects

These treatment effects, which may occur only during treatment, last beyond treatment, or occur long after treatment has ended, may include: 

Skin changes such as redness, irritation, blistering, thickening, and hair loss.  In the long term, such changes may be permanent.

Bladder inflammations, with burning, increased frequency, bleeding, or other painful urination.  Damage to the urinary tract may increase bacterial infection (radiation-induced cystitis).  Serious damage to the bladder may require surgery.

Inflammation of the anus, rectum, or bowel, leading to diarrhea, cramping, spasms, or bleeding.  Long term effects may include bowel damage that requires surgical correction or a colostomy.

Fatigue

Swelling in the pelvis or legs.

Stiffness of the pelvic region.

Nerve damage affecting the legs or causing loss of control of the bladder or rectum.

Vaginal irritation, shrinkage (stenosis), discharge, bleeding, pain.

Ovarian damage resulting in loss of fertility, or premature menopause.

Secondary cancers, such as bladder cancer, in the area treated with radiation – this may take twenty years or more to occur.  Radiation in medical tests is another source of risk for cancer - make sure that doctors ordering a CT are aware of  your radiation history and confirm the test is still necessary.   

An increased risk of bone fractures, particularly hip fractures. *See additional discussion below

Reduced absorption of Vitamin B-12 (cobalamin), essential for numerous aspects of health, including "cognitive function."  The body will resort to the B-12 stored in the liver, so the effects may not be immediately noticed.  Testing for B-12 can prevent irreversible damage.

The Medscape site has a very good article on radiation enteritis and proctitis (based on studies of patients receiving pelvic radiation for cervical or endometrial cancer, but the effects are very similar for anal cancer treatment).  And the Oncology Nurse Advisor site (you do not have to register to read it) provides a very detailed discussion; see also this link, and this from the Macmillan medical site in the UK.

Mitigating Effects

Some of these effects are rare, while others, such as skin irritation, are nearly universal results of radiation.  Your oncologist can assist you to mitigate some effects, for example providing prescription creams to assist with skin problems.  Silver Sulfadiazine is a common recomendation.  Another drug, sodium hyaluronate topical, sold as RadiaPlexRX in the US, is being tested in clinical trials at M.D.Anderson for skin problems experienced by breast cancer patients after treatment, and has shown in various studies to be good in care for wounds like those caused by radiation to the skin.  

Simple aids such as aloe gel are helpful (but avoid claims that aloe vera can cure your cancer; see this review from a UK cancer research group, and this from the American Cancer Society).  One study found tea extracts helpful for radiation-damaged skin.   Creams containing the flower calendula  (available over the counter) have shown promise for healing radiation burns.  Miaderm, a non-prescription cream containing both aloe vera and calendula can be ordered here.  Some research has indicated that curcumin, found in turmeric, a key ingredient in curries, can reduce radiation-related skin burns; a summary news item is here.  A testimonial to its effectiveness is here.   More tips for treating radiation-damaged skin come from New Zealand and the Southern Cancer Network, and still more from the UK.  And here is one more site for non-prescription treatment for rectal skin, recticare.

When you resume travel, you may find it helpful to take a packet of baby wipes or personal hygiene wipes, or a roll of good-quality toilet paper; many hotels and restaurants provide very poor quality paper in the toilets, and the results can be skin irritation that is at best unpleasant and at worst leads to infection.  Scratchy toilet paper can be a factor in cystitis for women patients.  For more on "radiation cystitis," see this discussion

Increased risk of bone fractures can be mitigated by regular weight-bearing exercise such as brisk walking, using a treadmill if that facilitates such exercise. Beginning this practice if you are not already following an exercise routine also may help you get through the treatment.  Consider with your doctor about taking Vitamin D3, calcium and magnesium supplements for bone health.  The National Osteoporosis Foundation has a discussion of diet and bones,  and see also this lengthy article on a protective diet by Dr. Christine Northrup.  Research has shown that consumption of dried plums (what we used to call prunes!) can have dramatic positive effects on bone health.   Unless you cannot tolerate the plums, it's worth a try!  For those of you who've been in the southern nations of Latin America and have tried and liked yerba maté (generally just called maté),  a study in 2012 suggested that this traditional infusion can strengthen bones.  For a general discussion of osteoporosis, see this; and here for a quick summary of ways to combat it.

Physical therapy, and stretching exercises, may assist with pelvic stiffness.  See this three-part series from the Anal Cancer Foundation. Recent studies indicate that just simple walking may help with fatigue, important for recovery.   Cure Magazine discusses fatigue here.  Try these exercises targeting the pelvic area, for the hip adductor.   Livestrong offers a set of exercises for pelvic adhesions here.  An internet search will find many more.  The Herman and Wallace Pelvic Rehabilitation Institute offers a list of practioners who treat pelvic disorders.    And for a little humor, here's an Australian ad demonstrating some unexpected benefits of exercise...(it's ok, the mouse is not dead!) 

And don’t ignore the fatigue! If you need to rest or sleep, your body is telling you it needs more time to heal.  Spells of fatigue may occur randomly, perhaps for years after treatment, or you may be sleeping more every day.  This is a common effect and you will not be helping your recovery if you try to ignore it.   A sleep specialist can work with you to determine what your sleeping pattern is and how to improve the quality of your sleep.  Mayo Clinic studies indicate that American gingseng (not the Asian variety) can help reduce fatigue; consult your doctors before you embark on using this supplement.

For these and all other problems during or following radiation, advise your oncologist promptly and seek his or her help – she or he cannot help without knowing what you are experiencing!  

A general guide from the UK to coping with the effects of pelvic radiation is here; see this UK site for the Macmillan organization, on side effects for women and for men, discussed separately.  See the Radiation Oncology Online Journal for a good discussion of pelvic radiation and preventing or mitigating effects.  The University of Wisconsin medical center provides an excellent information sheet.   Pelvic rehabilitation specialists can be found here and here. And the Pelvic Radiation Disease Association in the UK has information here.  And check out this new site on PRD.

Colleagues who have undergone pelvic radiation have indicated considerable relief can be had through hyperbaric therapy.   Basic information can be found at the site of the Undersea and Hyperbaric Medical Society, an international association of practioners.  More information on specific treatments is here.   A National Cancer Institute site reviews the treatment for cancer in general here.  For some specific statistics from one clinic, see the Virginia Mason Center site.

Sexuality and Pelvic Radiation

Women who have not yet experienced menopause may find their periods have ended after radiation,  Discuss this with your doctor ahead of time, including the possible use of hormone replacement therapy to cope with menopause symptoms – and to guard against osteoporosis.  

Female anal cancer patients treated with combined radiation and chemotherapy are very likely to experience vaginal stenosis, a condition in which the vagina shrinks and becomes much drier.  Sexual dysfunction may result, and gynecological exams may be quite painful.  Many clinics advise the use of a vaginal dilator to combat the shrinkage. The University of Wisconsin clinic, for example, recommends that patients begin use of a dilator as soon as the radiation treatment starts, and use it daily, continuing its use for two years following the treatments, or longer if needed.  Other clinics may recommend waiting until you finish treatment.   A  clinical study of the use of dilators after pelvic radiation is reported here in a professional journal for nurses.  The proper use of a dilator should be discussed with your oncologist as you prepare for treatment.  Do not let false modesty affect your recovery!  Additional information on dilators is available herehere, and here.   

Male patients may experience swelling of the legs or the penis as a result of lymphedema post-radiation, and genital itching resulting from the chemotherapy’s suppression of the immune system.  Erectile problems may occur.  On gay men and anal cancer, see this article and this.

*On Fractures

This study found that older women who received radiation treatment for anal cancer had a three times greater rate of fractures, and 90 percent of those were hip fractures.   See also this report in the Journal of the American Medical Association.

Patient's Guide to Sacral Insufficiency Fractures  deals with hip fractures, a risk of pelvic radiation.

Hip replacements may be less successful for patients who have had intensive pelvic radiation.  It is important to discuss your history with your orthopedic surgeon so that the surgical team can review your radiation records before undertaking the procedure.

Airport Security and Radiation Risk

ProPublica's recent analysis of airport x-ray scanners raises some serious issues for all of us, and cancer patients/survivors in particular.  The article describes how these scanners are not regulated by the Food and Drug Administration, as they do not have a medical purpose!   The FDA has allowed a group heavily influenced by the industry to establish voluntary standards for these scanners.  The Transportation Security Administration installed them, and is continuing to do so, without regard to numerous concerns expressed by US and European scientists.  And the manufacturer, Rapiscan Systems, won large contracts after a massive lobbying campaign.  Senator Susan Collins has asked the TSA to report on these machines.

My oncologist recommended that I opt for the pat-down instead of passing through any x-ray based machine and that is what I do, despite its occasional unpleasantness.   Careful evaluation will be needed for medically-related radiation in the future; submitting to radiation that has no medical purpose is not acceptable to me.   Interestingly, the chief medical officer of the American Cancer Society opts for the pat-down.  The European Union,with the exception of the UK, has  banned these backscatter radiation macines, one more reason to avoid them.

A chart to estimate your own lifetime radiation exposure is available here. 

Getting Through the Burn

A fellow patient developed this list of songs to accompany pelvic radiation; add your own as needed!

Ring of Fire: Johnny Cash 

Fire, keep me burning: Sly & Robbie

Fire: Arthur Brown

Burn Baby Burn, Disco Inferno: The Tramps

Light My Fire: The Doors

Firestarter: Prodigy 

Relight My Fire: Take That





© H. M. Carter-Tripp 2012