Blood tests are a necessary part of living with leukemia. For many people, however, blood tests can cause stress — and as one MyLeukemiaTeam member put it, “Stress is the number one thing people with cancer don’t need.”
Taking care of your mental health is an important part of your overall health care program. Stress can weaken your immune system and make it harder for your body to fight leukemia. It’s important to be able to recognize when you’re feeling blood test anxiety so you can arm yourself with strategies to help cope.
“Scanxiety” is a combination of the words “scan” and “anxiety.” Scanxiety refers to the stress and anxiety that people feel before a medical scan or test, while getting the test, or while waiting for results.
Some people find their scanxiety is worse just before their appointments, while some will feel the stress for weeks before. It all depends on the person.
For some people, the blood test itself is scary. An estimated 25 percent of adults are afraid of needles. Other people don’t do well with the sight of blood, so even a fingerstick blood test can cause anxiety.
It’s common for people with leukemia to be told to watch and wait after their cancer diagnosis. This means that someone has been diagnosed with leukemia, but their health care team wants to keep a watchful eye on future blood tests and wait to start treatment. Many MyLeukemiaTeam members feel that watching and waiting is the hardest part of our diagnosis. They may be told that it’s time to start treatment. Or, as one member noted, “[I’m] sort of in limbo until a significant change occurs in my numbers.” One member remarked, “I’m afraid my doctor will say, ‘See you in a year.’”
If you need treatment, your health care team may request more blood tests to figure out which treatment options will work best. There will be blood tests to monitor your health, make sure your body is handling the treatment well, and determine if a treatment is working. A MyLeukemiaTeam member put it very simply: “Anticipating lab results can create anxiety!” With so much resting on the results, it’s no wonder that waiting can be so stressful.
Many MyLeukemiaTeam members have talked about the stress of leaving an appointment with results they didn’t understand. One member noted, “I left not sure if I got good news or bad news."
For people with a blood cancer like leukemia, completing treatment won’t mean it’s the end of getting blood tests. There may still be a few remaining cancer cells floating around in the bone marrow or bloodstream.
Once you’ve achieved complete remission (all signs and symptoms disappear), your oncologist will use blood tests to make sure the cancer stays in remission. Worrying that cancer has come back can lead to feelings of scanxiety.
Symptoms of anxiety can be emotional or physical. Some of the emotional symptoms are:
Some of the physical symptoms of anxiety are:
Many of these symptoms, like shortness of breath or nausea, can also be symptoms of leukemia or side effects of cancer treatment. Talk to your oncologist if you have any of these symptoms.
Some MyLeukemiaTeam members say that they feel bad about feeling worried. One member remarked, “I know there’s no point in worrying about something that hasn’t happened yet, but I really don’t know anyone who can just turn anxiety off and on.” It’s completely normal and very common to feel blood test anxiety. Even though it may not be possible to just switch anxiety off, there are strategies that can help.
Everyone copes with anxiety differently. Listen to your body and do what works best for you.
Breathing exercises and meditation are the two relaxation techniques that MyLeukemiaTeam members have suggested most often. One member found that breathing exercises “help with anxiety, sleep problems, and more." Another member said that meditation “helps so much with my anxiety when I start to think about the future. I slow my brain down and focus on the present, and it helps me feel grounded." They recommended getting more information from books, YouTube, and apps.
Making positive distractions a part of your daily life can help keep your brain from focusing on stressful thoughts. For example, you can watch a movie, read a book, or find a new hobby. Light exercise or physical activity can also be helpful – just make sure to check with your doctor first.
If you feel frustration and fear because you don’t understand your blood test results, MyLeukemiaTeam members have suggested that it helps to ask lots of questions and to push for specific answers. “You have the right to know what to expect,” wrote one member.
You may want to keep a notepad handy to write down questions when you think of them. That way, you can bring the list to your appointments, since the stress of the situation might make it hard to remember everything you wanted to ask. Members also suggest that you always leave a doctor’s appointment with a copy of your test results.
MyLeukemiaTeam members have many suggestions for preparing for blood tests and receiving the results. For example, members suggest that it’s useful to know why you’re taking a blood test before you get your blood drawn. Is the doctor concerned about your symptoms, checking to see if your treatment is working, or simply doing a routine test?
It can also be helpful to have a plan for getting your results. You may want to be in a specific place or have a caregiver with you when the results arrive. You also may not want to look at your results until you’re able to talk to your oncology team. One member said they’ve learned to either call the doctor’s nurse or wait until their appointment before looking at their results. “I have freaked out a lot with unexplained results showing up on MyChart,” they shared.
When you live with an illness like leukemia, having a support system can be important for your emotional well-being. This may mean family members or close friends. A lot of MyLeukemiaTeam members found support through a community or religious group. If you don’t have people in your life that can help give you the support you need, support groups are also a good option, either locally or online. Of course, you can always find other people who understand your situation on MyLeukemiaTeam.
It’s OK to worry. It can even be helpful to think through some of the things you’re worried about. When you do focus on these thoughts, set a time limit of 10 to 15 minutes, and try to think about solutions and action plans as well as your concerns.
If possible, you should also try to reframe your thoughts. Instead of trying to come up with worst-case scenarios for the future, think about the here and now.
Remember that living with leukemia is a marathon, not a sprint. Sometimes, you’ll have setbacks. As one member advised, “You will have ups and downs, but you have to look at the long-term pattern in your results, rather than one individual test result.”
Some final advice from a MyLeukemiaTeam member: “Everyone is different, so in the meantime, just live your life and enjoy everything. A positive attitude is so important to wellness!”
MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 10,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.
Are you feeling anxious about blood tests? Do you have any coping tips? Share your experience in the comments below, or start a conversation by posting on your Activities page.