The NCCN put up a nice article today about something we have discussed here many times. I am going to add some things to it, and make it a permanent part of the main OCF web site. But for everyone here, particularly those still in treatment or recently out of it, worth reading.
All patients should have a clear understanding of when certain side effects, or escalating or uncontrollable pain, warrant a visit to a hospital emergency room.
Side effects are a common occurrence for people undergoing cancer treatment. Nausea, vomiting, fatigue, and other physical discomforts are notorious symptoms of chemotherapy and other cancer therapies. Because of the strength and toxicity required of many cancer treatments in order to kill cancer cells, most, if not all, patients expect that they will experience some unpleasant symptoms during and even after treatment. However, for this reason, many people may not know how to determine when their side effects are beyond the norm and severe enough to require special medical attention.
All patients should have a clear understanding of when certain side effects, or escalating or uncontrollable pain, warrant a visit to a hospital emergency room, or ER. Following surgery, or at the onset of treatment or the start of a new or increased dosage of a medication, you should have a discussion with your physician about possible side effects, pain, or other reactions. Make sure you have an idea of when it is important for you to contact your doctor or seek immediate attention (such as a fever of 101°F or higher). Often it’s better to err on the side of caution, because sometimes symptoms are easier to treat and can be managed more effectively earlier rather than later.
If at any time during or after treatment, you experience symptoms other than what you are expecting, or if you feel much worse than you believe you should, it is imperative that you seek medical attention immediately. Barbara A. Murphy, MD, associate professor of Medicine and Director of the Cancer Supportive Care Program at Vanderbilt-Ingram Cancer Center in Nashville, says side effects are often expected complications of cancer therapy. “Prior to treatment, the health care staff will review potential side effects with patients and provide them with medications that can prevent or treat side effects if they occur.” If you experience expected side effects that are controlled with medications, action may not need to be taken, she says. However, when and if you develop uncontrolled or unexpected side effects, such as sudden pain, a rise in temperature, altered mental status, or nausea or diarrhea that cannot be controlled with medication, a call to the doctor’s office is indicated. “Most cancer doctors have an answering service that is available 24 hours a day, 7 days a week specifically for this purpose,” Dr. Murphy adds.
Generally, over the phone, you doctor or nurse can then make a determination as to the best course of action. It may be a medication change that can be made over the phone. “If, however, the medical staff is concerned that the side effect may indicate or lead to a severe or life-threatening problem, the patient may be referred to the emergency room for evaluation,” Dr. Murphy says. She also cautions that if you experience a true medical emergency (such as difficulty breathing or severe chest pains), you should not wait to contact your physician. “You should proceed immediately to the ER or call an ambulance if needed. Problems can develop slowly over time or very quickly.”
Signs of Change
You should be aware of changes in pain, symptoms or other implications in the way you are feeling. “One of the most important factors with all symptoms, including pain, affecting the decision to be seen is change,” says William Dunson, MD, director, Huntsman Internal Medicine Acute Care Clinic, Huntsman Cancer Institute at the University of Utah in Salt Lake City. He says patients should recognize if the pain or symptom is new or worse, and for cancer patients, pain such as headache, back pain, and abdominal pain are common symptoms. “If pain or another symptom is new or is chronic but has gotten worse, you should start by calling your doctor or nurse,” he says, adding that if you can’t reach them because it’s after hours or the weekend, you may need to be seen in the emergency room.
Caregivers should also be well aware of what symptoms are expected and what changes may indicate a need for immediate care. Sometimes patients are unable or unwilling to articulate their discomfort or altered status, and therefore caregivers should have the knowledge they need in order to determine when something needs to be done.
Dr. Dunson says other common problems such as nausea, vomiting, or diarrhea may warrant a visit to the emergency room if the patient is suffering from dehydration. “If they can’t keep fluids down or have symptoms of dehydration such as dizziness, dry mouth, or they feel light-headed especially when changing positions, they may need to go to the ER,” he says.
According to Dr. Dunson and Sloan B. Karver, MD, the program leader in psychosocial and palliative care at H. Lee Moffitt Cancer Center & Research Institute in Tampa, symptoms that warrant a visit to the ER can include:
A single temperature above 101°F or a temperature above 100.4°F for more than 1 hour, especially if you are undergoing chemotherapy
Confusion or a change in mental status, including hallucinations
A new rash
Trouble swallowing, drooling, or facial, neck, or tongue swelling (concerns regarding anaphylaxis)
Constipation or uncontrollable diarrhea
Uncontrollable nausea and/or vomiting
Swelling in legs or arms
In the heat of a visit to an emergency room, a plan-ahead strategy will make an unexpected visit a bit less stressful. “It is good for all patients to keep medical information in a folder so that they can take it to their office visits as well as an ER visit,” says Suzette Walker, NP, co-director of Symptom Management and Palliative Care Services at the University of Michigan Comprehensive Cancer Center in Ann Arbor. “Patients should know their diagnosis, what they are getting for treatment, and how to contact their health care providers.”
Dr. Dunson adds that a patient should bring a comprehensive list of their medications, both prescription and over-the-counter. “They should also include the dosage,” he says. “They may also want to bring the actual bottles with them.” A detailed medical history, including what chemotherapy, radiation, and/or surgeries they have received, is also advisable.
Caregivers can also play an important role in emergency room visits. “If the patient is confused, or not in a position to speak for themselves, someone familiar with their medical history should come with them,” Dr. Dunson says.
After the Visit
Once you’ve been seen in the emergency room, your symptoms treated, and you’ve been discharged, be sure to follow-up with your cancer doctor. The emergency room staff should provide you with post-visit instructions, which will include recommendations on when to contact your regular physician.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. "The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."