Living with Scanxiety: Coping While You Wait for Results

Have you or a loved one experienced anxiety before, during or after cancer scans? You're not alone! You may feel like cancer takes away your control, but there are some things you can do to make your life better in this challenging time. Listen to learn why it happens, how it affects both patients and families, and what you can do to manage the emotional rollercoaster of uncertainty. https://bit.ly/4o7eAoj

In this Episode:

• 01:56 - Remembering Michael Caine
• 03:29 - Arizona: The Red Ghost and Tamale Pie
• 06:49 - Scanxiety: Stress or Anxiety Related to Cancer Imaging or Scans
• 09:25 - The "What If" Cycle
• 10:41 - Family Members & Care Team Can Also Get Scanxiety
• 11:30 - Strategies to Cope with Scanxiety
• 13:06 - How to Stay Calm and Confident Before, During and After Scans
• 16:49 - Outro

#Scanxiety #CancerAwareness #EveryoneDiesPodcast #CancerSupport #MentalHealth #CopingWithCancer #CancerSurvivorship #HealthAnxiety #PatientSupport #MindBodyHealth

A normal part of cancer survivorship is to have what are called "surveillance scans" which are an important part of keeping you healthy during survivorship. "Scanxiety" is the anxiety and fear experienced before, during, and after medical imaging tests, such as CT scans, MRIs, or PET scans, and it is a common challenge for people living with a cancer diagnosis. This includes feelings of dread, fear, and uncertainty that can interfere with sleep, appetite, focus, and overall well-being.  Learn strategies to cope so you can stay calm and confident through this difficult time.

Chapters

• 0:00 Intro
• 1:56 Remembering Michael Caine
• 3:29 Arizona: The Red Ghost and Tamale Pie
• 6:49 Scanxiety: Stress or Anxiety Related to Cancer Imaging or Scans
• 9:25 The "What If" Cycle
• 10:41 Family Members & Care Team Can Also Get Scanxiety
• 11:30 Strategies to Cope with Scanxiety
• 13:06 How to Stay Calm and Confident Before, During and After Scans
• 16:49 Outro

Transcript

Hello and welcome to Everyone Dies. This week we're having a discussion about scan anxiety. A normal part of cancer survivorship is to have what are called surveillance scans, which are an important part of keeping you healthy during survivorship.

Scan anxiety is an anxiety experience before, during, and after cancer scans, and it is a common challenge for people living with a cancer diagnosis. This includes feelings of dread, fear, and uncertainty that can interfere with sleep, appetite, focus, and overwhelm well-being. So relax and settle in for our podcast about serious illness, dying, death, and bereavement.

Our discussion about scan anxiety is in the second half, so you can just fast forward to that yak-free zone if you want to get right to it. I'm Marianne Matzo, a nurse practitioner, and I used my experience from working as a nurse for 47 years to help answer your questions about what happens at the end of life. And I'm Charlie Navarrette, an actor in New York City, and here to offer an every-person viewpoint to our podcast.

We're both here because we believe that the more you know, the better prepared you are to make difficult decisions before a crisis hits. Keep in mind that this podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording.

In the first half, Charlie traveled to Arizona and returned with the story of the red ghost and our recipe of the week. In the second half, as part of our ongoing series, Everything You've Always Wanted to Know About Cancer, but Didn't Have Anyone to Ask, we're going to talk about scan anxiety. In the third half, Charlie has to list the things to help manage scan anxiety.

So, Charlie, how are you? I'm very well. I'm a little sad because at the Museum of Modern Art, they had a big retrospective of films starring Michael Caine. In several of the films he starred in, others he was supporting character.

It ended a few weeks ago, but I still remember there were just so many great films and great performances, and just the type of movie-making and scripts and dialogues that were smart. Just very full stories, not a lot of special effects type of things, just really story and character driven. Yeah, I miss it.

I've gone to see other movies since then, but nothing compares to those films. It was just a different time, and in my opinion, just better writing in general. So, it's not because of Michael Caine's incredible acting, it's the incredible writing, is what you're saying? Well, we're both, and some may perform better than others, but just a very wide range, and yeah, just the writing and the storytelling.

Things focus on the stories, not some big goofy special effects thing. Yeah, it was just really enjoyable. Which then brings us to our first half.

Arizona, in the late 19th century, when a huge terrifying beast with a ghoulish passenger was said to terrorize the residents of the high country. This apparition, sometimes seen in remote parts of the state to this day, became known as the Red Ghost. The Red Ghost's first appearance was in 1883, near Eagle Creek, Arizona.

A woman was at the local spring to draw water, but never returned. The next day, her trampled body was found with cloven hoofprints and long red hairs near where her body lay. A few months later, a rancher on the Salt River by the name of Cyrus Hamblin came across the beast while he was rounding up cattle.

He recognized the creature as a camel, but to his horror, he saw that there was a skeletal body strapped to its back. Despite his reputation as an honest man, few believed him. For the next years, the legend of the Red Ghost grew.

Then, in eastern Arizona, a rancher woke one morning to find the huge animal grazing in his garden. One shot from his Winchester and the infamous Red Ghost was no more. When the rancher examined the body, he found that the camel had scars on its back from where rawhide straps had been used to secure the body of a man.

The Red Ghost's passenger was said to have been a young soldier who was afraid of camels. To make him confront his fear, his fellow soldiers tied him to a camel and then smacked it on the rump. Once the beast was off and running, they couldn't catch up with it, and both the camel and its rider disappeared into the desert.

There is a grain of truth to the story in that, yes, camels were roaming loose in Arizona during the late 19th and early 20th centuries, and people still claim to see the Red Ghost and his ghoulish rider to this day. To try to make a smooth transition into this week's recipe, I'm going to say tamales might have been made from camels, but we cannot verify it. However, in many Hispanic and Native communities, tamales are a common comfort food served at funerals.

This week's tamale pie recipe delivers on all the comfort food vibes without the fuss of traditional tamale making. Bon Appetit! Please go to our webpage for this week's recipe for tamale pie and additional resources for this program. This is the part where we ask for your financial support.

Your tax-deductible gift will go directly to supporting our non-profit journalism so that we can remain accessible to everyone. You can donate at www.everyonedies.org. That's every, the number one, dies, dot org, or at our site on Patreon under Everyone Dies. Marianne? Thanks, Charlie.

Our topic today is about scan anxiety or scansiety, which of all the experiences that people living with cancer have could almost be considered a universal feeling. Scansiety is distress and or anxiety occurring before, during, or after cancer-related imaging and scans and is recognized as upsetting in patient reports, popular press, and patient education materials. And if you think about it, it's really not surprising that scansiety is a thing.

An important part of cancer survivorship is observation for cancer spread, recurrence, and second cancer. We know that it's possible for cancer to come back after treatment. This is called recurrence.

Therefore, an important part of the survivorship phase is a regular follow-up with your oncologist for scans, like a CT or MRI, to see if there are any changes from your last scan, which is where scansiety rears its ugly head. We know why and when the scans are being done. Scans are ordered on a regular basis, for example, every three, six, or 12 months, depending on the type and stage of the cancer diagnosis.

And the scans give very personal and significant results about the cancer status, response to treatment, and if there is recurrence. Research studies have documented that stress and anxiety are often ranked as extremely concerning for patients waiting for scan results. And people living with cancer report that scansiety has a notable and challenging part of their cancer experience.

And remember, this is not a one-and-done type of experience. Cancer surveillance scans will occur at some interval for some people the rest of their lives. Anxiety, including scansiety, is part of how our body responds to threats.

In order to prepare us for the fight-or-flight response, the body releases adrenaline and other hormones. This can make you feel nauseated or interfere with your sleep in the days before the scans and while we wait for the results. Other symptoms include feeling sweaty, shaky, or feel an increase in our heart rate.

Some people clench their hands or jaw or hold tension that makes their muscles ache. Also, the need for a scan may bring back bad memories of the cancer diagnosis and our reaction may be like PTSD or post-traumatic stress disorder. This can include intrusive thoughts which creep in and are hard to dismiss.

You may also be cranky, have nightmares, or have flashbacks to stressful events. Scansiety can make concentrating or thinking about anything other than the scan results difficult. You might find yourself pondering about what-ifs and getting caught in a downward spiral of thoughts and concerns.

The what-if cycle can become emotionally overwhelming and wear down your emotional energy. This cycle of thinking can use up your emotional energy that might best be spent focusing on other things. Examples of what-ifs might include, what if my cancer has returned? What if the doctor tells me my disease is worse? If it is worse, will I survive? What if I need more aggressive types of treatment? What if I'm unable to work? If I can't work, how will I survive financially? So, the emotional symptoms of scansiety may include feeling nervous, tense, irritable, cranky, have nightmares, or have flashbacks to stressful events.

The physical symptoms can include increased heart rate, nausea, trouble sleeping, sweaty, shaky, breathlessness, increased blood pressure, or feeling weak and tired. Care partners and family members can also have scansiety and supportive care needs due to their fear of the unknown after a scan and concerns about their loved one's prognosis. Family members can experience anxiety, dread, mood swings, trouble sleeping, and difficulty concentrating around the time of the scan.

The primary concern is often the possibility of the cancer progressing or returning, which creates uncertainty and stress. To cope, family members should communicate openly with the person having the scans and their care team. Ask questions about the scan and next steps.

Practice self-care through exercise and relaxation. Participate in support groups and focus on staying in the present moment. Specific strategies for family members are to talk about it.

Express feelings to trusted friends, family, or the care team can be comforting and help manage the emotional burden. Ask questions about the scan process, the timing of results, and what the next steps will be, regardless of the outcome. Practice self-care.

Prioritize sleep, proper nutrition, regular exercise, and relaxation techniques like meditation or deep breathing to maintain your own well-being. Stay connected. Make plans with friends and family to do fun activities or join a cancer support group to connect with others going through similar experiences.

Focus on the present. Engage in activities that keep you grounded and in the moment, such as short walks or hobbies. Prepare for the outcome.

Having a plan for potential results can help you feel more in control and less overwhelmed by the uncertainty. If you feel stressed about an oncoming scan or test or experiencing anxiety waiting for biopsy results, rest assured that you're not alone. Scan anxiety is very common for people living with cancer who are undergoing treatment or in remission.

In the third half, Charlie has specific tips to help you manage your anxiety by focusing on the things you can control. Charlie? So, for our third half, what can people do to stay calm and confident leading up to, during, and after their scans? The Sarah Cannon Cancer Institute has these tips for coping with scanxiety. First, set time limits on worry time.

Don't let anxiety take over your thoughts non-stop. Instead, set aside time, about 10 to 15 minutes, to worry. You can healthily express this worry by writing it down or sharing it with a trusted friend.

Setting a time limit can help control scanxiety by allowing you to say when and how much time slash worry will take up during your day. Two, distract yourself and stay busy. Staying busy leading up to your scan will keep your mind occupied and keep you from focusing on the upcoming scan or scan results.

Take a short trip, make a new recipe, watch your favorite TV show, read a book, listen to music, try a new hobby, or call a friend to take your mind off your nerves. Three, share your story. Many survivors want to share their stories to encourage those facing a new diagnosis and giving back to the community of support that helped them through their cancer journey.

It can help take your mind off your own anxiety by talking to other people who are in a similar situation. Four, meditate. Relaxing is not only good for your overall health, but it can also help with anxiety.

Accepting that you cannot control your results can help reduce your scan anxiety. Whether your way of meditation is praying, yoga, sitting quietly, or listening to calming music, find what helps you relax and do it. Check out our mindfulness podcasts on our web page.

Five, exercise. Maintaining a healthy lifestyle through stressful times is good for your body and mind. Exercising helps combat fatigue both physically and emotionally by releasing endorphins to make you feel more at ease.

Plus, physical activities can help you sleep more soundly, which is restorative to our bodies and equips us with a clearer mind for handling anxiety and stress. Six, treat yourself. Sometimes the best way to take your mind off your worries is to treat yourself.

Eat your favorite food, watch your favorite movie, get a manicure and pedicure, go shopping, take a nap, or do another activity that you enjoy. Putting your needs and even wants first every so often can help take your mind off anxiety. Seven, know when and how you will receive your results.

Knowing this information will make you feel more in control of your journey. Plan your results day in advance so you can make the waiting period less stressful. It is better to feel anxious for 10 minutes rather than for 10 days.

Lastly, acknowledge your anxiety. Feeling anxious is normal. Talk to your family, friends, and health care provider about your nerves.

They are a system of support for you in your journey. And that's it for this week's episode. Please stay tuned for the continuing saga of Everyone Dies and thank you for listening.

This is Charlie Navarette and from author Aeneas Nin, people living deeply have no fear of death. And I'm Marianne Masso and we'll see you next week. Remember, every day is a gift.

This podcast does not provide medical advice. All discussion on this podcast such as treatments, dosages, outcomes, charts, patient profiles, advice, messages, and any other discussion are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your primary care practitioner or other qualified health providers with any questions that you may have regarding your health.

Never disregard professional medical advice or delay in seeking it because of something you have heard from this podcast. If you think you may have a medical emergency, call your doctor or 911 immediately. Everyone Dies does not recommend or endorse any specific tests, practitioners, products, procedures, opinions, or other information that may be mentioned in this podcast.

Reliance on any information provided in this podcast by persons appearing on this podcast at the invitation of Dies or by other members is solely at your own risk.