Medical-Procedure Trauma During Cancer Care

A procedure that went badly does not stay in the past. It shows up as dread the night before the next one, a racing heart in the waiting room, or a canceled appointment. This page is about the next procedure, and how to change the conditions so it goes differently.

Avoidance has consequences. NCI notes that people with a phobia of needle sticks may avoid having blood drawn, which gets in the way of tests the treatment plan depends on.

This is not a character flaw. NCI explains that neutral triggers, such as smells, sounds, and sights that were present during an upsetting event, can later cause anxiety, stress, and fear on their own. MRI and CT scanners are named examples.

So the smell of alcohol wipes, the sound of a particular machine, or a certain gown can produce a full-body reaction years later. The body learned it. It can be worked with.

You do not have to retell the whole story. What the team needs is short and practical:

• Which procedure or part of it is the problem.
• What specifically happened, in one or two sentences.
• What made it worse at the time.
• What has helped before, if anything.
• What you want done differently this time.

Say it at a clinic visit, not while lying on a table. Ask that it be written in the chart so the next team sees it without you starting again.

SAMHSA sets out six guiding principles for a trauma-informed approach:

1. Safety.
2. Trustworthiness and transparency.
3. Peer support.
4. Collaboration and mutuality.
5. Empowerment, voice, and choice.
6. Cultural, historical, and gender issues.

SAMHSA is honest about the limits. It states that "adopting a trauma-informed approach is not accomplished through any single particular technique or checklist. It requires constant attention, caring awareness, sensitivity, and possibly a cultural change at an organizational level."

Use the principles as a test. If nobody explained what would happen, transparency failed. If you were told to hold still and nothing else, voice and choice failed. Naming which one failed is more useful than saying the visit was awful.

Ask about the test before it begins so you know what to expect. NCI gives that same advice.

Then negotiate the specifics:

• A support person. NCI advises having a family member or friend stay with you. Ask whether that is allowed for this procedure, and if not, why not.
• A stop signal. Agree on a word or a raised hand, and agree what happens when you use it.
• Order of events. Ask what happens first, second, and third, and how long each part takes.
• Who is in the room. Ask how many people, and whether students or observers will be present. You may decline observers.
• Position and covering. Ask what position you will be in and what will be covered.
• Warning before contact. Ask staff to say what they are about to do before they do it.
• Sedation. NCI notes that some drugs may be used to help you feel calm or fall asleep. Ask what is available for this specific procedure.

Get the agreed plan written into the chart or the appointment note. Verbal agreements do not survive a staff change.

NCI lists relaxation training as a treatment for anxiety in cancer care, and names the forms: hypnosis, meditation, guided imagery, and biofeedback. Cognitive behavior therapy is also listed.

For procedures specifically, NCI states that imagery or relaxation can help control pain and anxiety related to treatment.

These take practice. Learning guided imagery on the morning of a bone marrow biopsy is not the same as having practiced it for two weeks. Ask for the referral early enough to rehearse.

NCI describes two groups used for anxiety in cancer care.

Antianxiety medicines relieve symptoms such as feelings of fear, dread, uneasiness, and muscle tightness. Antidepressants are also useful in treating anxiety disorders. NCI notes that these may be used alone or combined with psychological therapies.

Ask three things: what it is for, when to take it relative to the procedure, and whether it affects your ability to consent or to drive home.

Pain that is not recorded does not get planned for next time.

NCI describes rating pain from 1 to 10, with 10 being the strongest. Scales using happy or sad faces are used for people who have trouble giving a number, including young children.

NCI says the team should measure pain after you start cancer treatment, after you start a new pain treatment, and when you have new pain. Add one more moment: immediately after a procedure that hurt more than you were told it would.

Ask for that number to be recorded against the procedure name, so the next clinician sees it.

Sometimes the reaction outgrows the procedure. NIMH sets a threshold for PTSD: symptoms present for at least 1 month, with at least one re-experiencing symptom, at least one avoidance symptom, at least two arousal and reactivity symptoms, and at least two cognition and mood symptoms.

If you are there, ask for a referral rather than more coping tips. The VA National Center for PTSD names three trauma-focused therapies with the strongest support:

• Cognitive Processing Therapy, which teaches you to reframe negative thoughts about the trauma.
• Prolonged Exposure, which teaches you to regain control by facing feelings and situations you have avoided.
• Eye Movement Desensitization and Reprocessing, which helps you process the trauma while attending to a back-and-forth movement or sound.

Ask which of these the clinic actually offers, and what the wait is. Not every mental health service provides them.

Write this once and reuse it. Keep it to a single page.

• Procedure name and date.
• What happened before, in two sentences.
• The three things that help most.
• The two things that make it worse.
• My stop signal, and what happens when I use it.
• Support person's name and phone number.
• Medicine agreed, dose, and timing.
• Who to tell if the plan is not followed.

Hand a copy to the person doing the procedure, not only to the front desk.

Call or text the 988 Suicide and Crisis Lifeline at 988, or chat at 988lifeline.org. In life-threatening situations, call 911.

• Can this procedure be done with sedation, and what are the tradeoffs?
• Can the plan we agree be written in the chart before the day?
• Who will be in the room, and can I decline observers?
• What is the stop signal, and what happens when I use it?
• Can I meet the person doing the procedure beforehand?
• Is there a psychologist here who works with medical procedures?
• If avoidance is delaying my scans, who helps me solve that?

• Adjustment to Cancer: Anxiety and Distress (PDQ) Patient Version — National Cancer Institute.
• Cancer Pain (PDQ) Patient Version — National Cancer Institute.
• Cancer-Related Post-traumatic Stress (PDQ) Patient Version — National Cancer Institute.
• 6 Guiding Principles to a Trauma-Informed Approach — SAMHSA, hosted by CDC Stacks.
• PTSD Treatment Basics — VA National Center for PTSD.
• Post-Traumatic Stress Disorder — National Institute of Mental Health.