Radiation Cystitis: What to Ask

The National Cancer Institute describes it simply. Radiation therapy to the pelvis can irritate the bladder and urinary tract. The bladder lining sits inside the treated area, takes some of the dose, and becomes inflamed. So radiation cystitis is bladder inflammation caused by the radiation rather than by bacteria. That difference matters, because the two feel almost identical from the inside.

NCI says these problems typically start weeks after treatment begins. They resolve weeks after treatment is completed. MedlinePlus puts the onset at about two weeks after the first treatment.

The sources stop short of a precise answer. So ask: How many weeks after my last treatment should these symptoms be gone?

NCI lists these symptoms of bladder irritation:

• pain or a burning feeling when you urinate
• blood in your urine
• a frequent, urgent feeling that you need to urinate
• trouble starting to urinate or trouble emptying the bladder completely
• leaking a little urine when you sneeze or cough
• bladder spasms, cramps, or discomfort in the pelvic area

NCI lists blood in your urine as a symptom of bladder irritation. It is the one not to sit on. NCI's instruction on this page is to "talk with your doctor or nurse to learn what symptoms you may experience and ask which ones to call about." Blood in the urine belongs at the top of that conversation, before treatment starts.

Ask specifically: If I see blood in my urine, do you want a call that day, a visit, or a urine sample? Does the amount change the answer? What if there are clots, or if I cannot pass urine?

The symptom lists overlap heavily. That is why a urine test is often the deciding step. NCI lists these signs of a urinary tract infection:

• pain or a burning feeling when you urinate
• urine that is cloudy or red
• a fever of 100.4 °F (38 °C) or higher, chills, and fatigue
• pain in your back or abdomen
• trouble urinating

NCI adds a warning that changes the urgency. A urinary tract infection in someone being treated for cancer "can turn into a serious condition that needs immediate medical care."

Ask: If I develop these symptoms, will you check a urine sample before treating? Should I call for a fever even if my bladder symptoms have not changed?

NCI suggests a few things to reduce bladder problems. Drink plenty of liquids — most people need at least 8 cups a day, so that urine is light yellow or clear. Stay away from what can make bladder problems worse: caffeine, alcohol, spicy foods and tobacco. And take the steps your team gives you for lowering the chance of a urinary tract infection, which NCI says may include going to the bathroom often, wearing cotton underwear and loose-fitting trousers, showering instead of bathing, and checking with your nurse before using creams or lotions near the genital area.

MedlinePlus writes for people mid-treatment, and gives no number. It says to ask your provider how much and what types of liquids to drink each day. It also says to ask about medicines that help with needing to urinate often. Your own target may be adjusted for your kidneys, your heart, or other treatment. So take the number from your team.

• Which urinary symptoms are expected with my exact treatment field and dose?
• Which symptoms mean a same-day call rather than waiting for my next appointment?
• What number reaches someone after hours and on weekends?
• Are there medicines for bladder spasms or urgency I should have at home?
• Could bladder symptoms change my dose, my schedule, or whether treatment pauses?
• How much fluid should I drink, and do you want me to avoid caffeine and alcohol?

NCI separates early side effects from late effects. Late effects are the ones that show up months or years after radiation therapy is over. NCI advises asking your care team which late effects to watch for. Ask at your survivorship visit: Which urinary changes should I report years from now, and to whom — you, my primary care doctor, or a urologist?

Follow the urgent instructions your own team gave you. MedlinePlus's pelvic radiation instructions say: "Contact your provider if you have pain that doesn't go away, a fever, severe vomiting or diarrhea, or blistering of the skin." NCI treats a possible urinary tract infection during cancer treatment as a condition that can need immediate medical care.

Some of these cannot wait for a callback.

Go to an emergency department, or call 911, if:

• you cannot pass urine at all, or you are passing clots and the flow keeps stopping. A bladder blocked by clot needs draining, and it gets more painful and more dangerous the longer it is left.
• the bleeding is heavy, keeps going, or comes with dizziness, a racing heart, or feeling faint.
• you have a fever with shaking chills, confusion, or fast breathing. Those are signs of sepsis.
• you have a temperature of 100.4 °F (38 °C) or higher while you are also receiving chemotherapy. The CDC is explicit that a fever during chemotherapy is a medical emergency.

Call your care team the same day if:

• there is blood in your urine but you are passing it freely and feel otherwise well.
• you have a temperature of 100.4 °F (38 °C) or higher without chemotherapy, which is the threshold CDC uses on the urinary side effects page above.
• you have new back or flank pain, or burning that is clearly worsening.

Note that sources word the fever threshold slightly differently, so use the number your own team gave you.

Helpful next pages include Side Effects of Cancer Treatment, Immune-Related Side Effects, Low White Blood Cells During Chemotherapy, and Supportive Care.

• National Cancer Institute, Urinary and Bladder Problems and Cancer Treatment: https://www.cancer.gov/about-cancer/treatment/side-effects/urination-changes
• National Cancer Institute, Radiation Therapy Side Effects: https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy/side-effects
• MedlinePlus (U.S. National Library of Medicine), Pelvic radiation - discharge: https://medlineplus.gov/ency/patientinstructions/000059.htm
• Centers for Disease Control and Prevention, Fever during cancer treatment: https://www.cdc.gov/cancer-preventing-infections/patients/fever.html