EP 9: Scanxiety Hit Me Hard | How I'm Learning to Cope

Scanxiety is a word most cancer patients don’t need explained—but few outside the cancer community truly understand. In this deeply personal episode of Lung Cancer Strong, Tina Powell shares what scanxiety feels like from the inside. Not the sanitized version. The real one. The agitation. The sleepless nights. The spiraling thoughts. The isolation. And the weight of living scan to scan.

Tina is currently undergoing scans every six weeks as part of a clinical trial, and she speaks candidly about how scanxiety has not disappeared with time—even three years into a stage IV lung cancer diagnosis. What has changed is her ability to recognize the warning signs and respond with intention instead of judgment.

This episode walks through:

• What scanxiety really is—and why it’s universal among cancer patients
• The physical, emotional, and cognitive symptoms Tina experiences before scans
• Why scans are terrifying and essential
• Ten tools Tina uses (often in combination) to manage scanxiety
• How reframing scans helped her make one of the most important medical pivots of her life

This is not medical advice. It’s lived experience, shared openly for anyone who needs to feel less alone while waiting for results.

If you’re living between scans—or supporting someone who is—this episode is for you.

Transcript

0:09

This podcast is strictly for informational purposes and does not constitute medical advice, diagnosis, or treatment. Always consult with your oncologist, doctors, and medical team for questions specific to your own health diagnosis and treatment. If you're listening to this, you or someone you love has just heard the words. You have lung cancer right now. You might feel scared, overwhelmed, shocked, or even numb. I know because I've been there. Hi, I'm Tina Powell, stage four, lung cancer survivor, thriver and patient advocate, and when I was diagnosed on January 16th, 2023, I had a thousand questions and nowhere to turn for real answers from those who have lived it. That's why I created lung cancer strong. Here you'll find things I wish I had from day one. Real stories, honest answers, and the tools and hope to face every moment ahead. Here we get real about treatment, fierce setbacks, small victories, and finding purpose even on the hardest and the most crushing of days. Here we get strong through information, inspiration, and community, and most of all, we get through it together because this is a place of true connection, compassion, and unfiltered strength. So whether you're newly diagnosed, fighting with everything you've got or standing by someone you love, this is your invitation to live intentionally, powerfully, and with hope. One breath, one story one day at a time. Welcome to lung cancer Strong. If you live with cancer, you probably know this word already, scanxiety, scanxiety, scanxiety. It's the anxiety that shows up before the scans, and for many of us, it never fully leaves. I wish I could say that I have the magic fix or silver bullet to make the fear go away, but I don't. What I do have are the 10 things that have helped me make it through during some very challenging times, things that I'm willing to share that have helped me cope, that might help you cope. My hope is that maybe today you take one or several things away from today's video, which would make my day. So what is scanxiety? Scanxiety is the form of stress that you feel before a scan. It's that anticipatory stress, right? Every cancer patient deals with scanxiety in one form of another. Some people feel it more lightly, some people feel it more deeply. I unfortunately am one of those people who gets really, really stressed out before the scans. Part of the reason is that I'm getting scans every six weeks. Yes, you've heard it. Every six weeks I'm getting a CT scan of the chest, a CT scan of the pelvis and a brain MRI, all of them with contrast. So the reason for that such that vigorous cadence of every six weeks is because I am currently being treated on a clinical trial at Memorial Sloan Kettering, which mandates every six weeks scans no matter what. Now, your scans might look a little bit different. You might be getting scans every three months as part of active surveillance or perhaps every six months or maybe even a year as part of long-term maintenance. Everyone has different schedules, but the same emotional weight. I don't care if you are getting your scan in six weeks from today or you're getting it nine months today or even six months today, it will still feel that nervousness and that tension in your gut. So living with cancer, sorry, it does mean living between scans, and that's a reality that unless you're being treated for cancer, you don't really know what that means. And part of the reason that we're so stressed about the wow, we don't know if we are stable. We don't know if the cancer is spreading or we don't know if it's getting worse, and the scans all tell us that. That's really scary. It's very scary to think that your treatment you're on is not working. So we all go in with that anticipatory stress. It's totally, totally normal for everyone, but I want to tell you guys what Scanxiety feels like for me. We will get to also to the 10 things that I'm doing to help me through scanxiety, and again, hopefully you pick something up from this, okay? I am going to be brutally honest and put it all out there, you guys. So the first thing is that I get easily agitated and overwhelmed sometimes over completely normal and stupid things. I don't know why. I just like I am on edge, okay? I also, and this is a big one for me, this one happens every single time without fail. It's happened throughout my three year cancer bursary. I wake up in the middle of the night and I panic and I can't fall back to sleep. That's why I will binge watch on YouTube. Maybe you're doing the same thing. Maybe that's how you found me. I've been in extreme panic. I can't fall back to sleep. The next thing, another couple of symptoms that happens to me. What anxiety feels like for me as remember as a patient, I lose focus on things that normally come easy, so I just feel like a little bit of this brain fatigue, right? I also feel a heaviness in my chest. I past a faster pulse, labored breathing. Some days I might feel moderately depressed and even a little hopelessness and disconnected from joy. Some days my thoughts spiral to worst case scenarios where I see the glass as half empty instead of half full, which is totally not like my normal way of doing things. I find myself binge eating and reaching for junk food in the worst way. Sometimes I will go through an entire bag of popcorn. I might eat a whole bunch of olives or a whole bunch of grapes or strawberries or whatever. I just binge eat. And I think the most important thing that I want you to all be aware of, again, this is what I tend to do, is I tend to isolate. I pull back just a little bit from my social circles. I get a little quiet. I go a little bit on the inside and I pull back on people and plans. I'm not saying that all this is good, but I do notice that when it comes to scanxiety, which happens for me a week to 10 days before that appointment, definitely a week before that appointment, I'll have all of these things. So hopefully this was helpful to you so that maybe I offered some examples of things that are happening to you, and hopefully you know that you're not alone. Here's why scans matter. Here's the uncomfortable part. Scans are super scary, but they're essential if you're in treatment, scans tell you whether or not that things are working. If you're in remission, scans will tell you if you're still in remission. And so really, the information matters even when it's terrifying and it's hard to hear. I try to remind myself that the scan's not the enemy, but actually the waiting is, and you have to be very careful, especially as a lung cancer patient, particularly those that are new to this, that your scan results will pop up in your MyChart. I'm sure that you're like me and you have the tendency to see what it says. Some of the scans are kind of hard to read, but some of the scans are not hard to read and that you could see that there could be progression there. Here's the hard truth I feel that I need to share based on my personal experiences, a stage four cancer survivor and patient, these are the things that I've learned over the past three years being a stage four lung cancer patient, I wish that I could say that. Oh yes, three years and actually today is woo, my three year cancer anniversary. Thank you. Thank you so much. Thank you all for being here too. I really, really appreciate it, but I wish that I could say that it's gotten easier over time. I thought that it would magically disappear at time and I was so wrong. You don't outgrow it, but you can learn to recognize the warning signs that I just talked about easily earlier. Earlier is the word there. You can also meet it with a little bit more awareness, and you can still give yourself grace instead of judgment. We're going to talk about it in just a second here. Sometimes that means just adjusting your social world for a while. It might mean going quiet, and it might mean asking for help. Sorry if I've been a little verbal tonight. This was a very hard video to do because it happens to all of us, and I just want to make sure that you're getting all the information that's in my head. So finally, we're here. I use these in combinations with each other. I use them at different times. Sometimes I use them all. Sometimes I only use part of them. But remember, I'm not giving medical advice here. I'm just sharing my own experience of what has helped me the last three years as a stage four cancer patient. So let's get into it. Number one, prescription medication. Ativan. You can ask your oncologist for a prescription for Ativan, also known as Lorazepam. It's a prescription that's used to treat anxiety, insomnia, seizures, and alcohol withdrawal by calming the neurotransmitter GABA in the brain. With that said, it also carries risks of dependence and severe withdrawal. If you're going to stop suddenly again, speak to your doctor. If Ativan could be the right thing for you, they could maybe put you on a small dose like they have me, but that has helped with my scanxiety. Number two, cannabis. Cannabis. I learned to make cannabis suppositories. This is the subject of yet another lung cancer strong video. So please make sure that you are subscribed. Yes, you heard right suppositories made from a very concentrated form of cannabis called Rick Simpson Oil, or RSO for short. I get it from Brady's Botanicals and Morrisville pa. I have been working with Roger for years now. I also on the cannabis side, I have a tincture bottle of Delta nine THC, which has also to help me to relax, help to increase my mood, both the suppositories and the elixir, which the elixir I take by mouth. It's like a little tincture, have helped me to cut down on stress. But remember, you have to consult with your medical team before you do anything. Cannabis may be a viable treatment for you. This is what's working for me. Maybe it works for you or maybe you want to check it out at some point down the road. Number three is acupuncture. Acupuncturists, help me relax before scans and after scans. Ladies and gentlemen, I do this religiously every week. If you haven't tried acupuncture, you're really missing out on what could be potentially very therapeutic. It's relaxing, which seems weird because you've got the needles everywhere. For me, it has worked. This is something that you might consider. Definitely get some referrals from a friend. That's the perfect place to start because every acupuncturist is different. You should actually vet them very seriously before you go into that, and a lot of acupuncturists are attuned to you coming in the door and them having a sense, really getting to know you. So this is a one-on-one relationship. It it's very important. So hopefully acupuncture helps you at a future time. Number four, cognitive behavioral therapy and EMDR. Now, I have been seeing a regular therapist to help me get through life living with cancer, which has been very difficult, very difficult for me, probably very difficult for you. And on one of the times, we did what's called EMDR therapy. EMDR therapy stands for Movement Desensitization and Reprocessing. It was designed and it's developed to treat PTSD, post-traumatic stress disorder. You've all heard about that. Anxiety, depression, phobias, and other issues. Every EMDR treatment is different. For my particular therapist they use, it's actually machine. It's a machine. And then I hold two separate wireless pulsate, which calls a vibration in my hand. And so the session involves me repeating thoughts that are coming in and out of my brain and then actually working through them. So the day that I did it, I felt much better. I've only done it once. Right now I've only used EMDR once to treat scanxiety, but it was good. I do plan on doing this again to prepare for my next scan, which is next month, and maybe you try two. Maybe it's something that works for you. Number five, gratitude journaling. Well, I've been keeping a gratitude journal for years, even before the cancer. For some reason, the practice of gratitude helps to increase your vibration, makes you feel better. This particular journal that I use has a am and pm. It's called the Gratitude Journal. I'll leave a link in the show notes. You can get it on Amazon. Basically what you're doing is you're filling out every day as you wake up and before you go to bed. So you write, here's a page just to show it. I don't know if I'm doing a good job of that, but let me just read what goes through the gratitude journal. The first thing you do is you read a inspirational quote, this page that I just picked out, this is a quote from Anne Frank, how wonderful it is that nobody needed to wait a single moment before starting to improve the world. And then you write down, today, I am grateful for you write down three things. You write down three things hard to say. How can I create a great day for myself today? You write down an affirmation and then you put the book down, and then you pick it up back again before you go to bed and you write down highlights that made today amazing. And the last question, what could I have done to make today even better? So you get the Practice Gratitude Journal. This is going to be on Amazon, but you can also just keep a journal. You should definitely write it is really helpful and it might relieve some of the pressure and stress that you're feeling as part of skin anxiety. Number six, meditation plus BioMAT, especially as scans near the week before I talked about it, I make it a practice to do meditation on my BioMAT. I'll put also to the link will show the BioMAT here, and I realized that biomass are expensive and not everybody has them. Part of the reason that makes them very expensive is they literally contain amethyst crystals. So mine is safety certified. It's an infrared mat with those amethyst crystals. I really, really love it. My acupuncturist, actually, she was the one that turned me onto this whole thing. Before that, I never even knew really what a BioMAT was. So I'll put definitely a link. I really love it. It's heated, but you can adjust the heat settings to how you like it. The thing that I do with my meditation and BioMAT is I lay down during a 20 meditation and I could make that meditation a 20 minute Joe Dispenza meditation. They have a whole bunch of Joe Dispenza videos on here on YouTube, and I also do a 528 hertz video on YouTube where it's just playing a certain vibration, playing a certain music. I'll also put that in the link. I'll probably that if you want to try these things out for yourself, even if you didn't have a BioMAT and you just laid down on a comfortable floor or your bed or even sat in a comfortable position and listen to that 5 28 hertz video while closing your eyes, I think that you'll be surprised at how well you'll be able to relax. Number seven, walking in nature. Walking in nature has been shown to reduce stress, anxiety, and depression. We all know this. However, right now it's super cold here in Pennsylvania. Today was about 30 degrees. I did manage to do one walk today that lasted about 15 minutes. If it were the spring or summer, I would be doing three or four of these walks per day. I think it's important not to listen to music and just to listen to nature to get the full effect. And I think that you should try this before your next scan. Just get out 10 minutes a day, just 10 minute walk, 15 minute walk. All of this, you guys together is cumulative and it all adds up. Like I said in the beginning of this video, it's not one silver bullet. It's not one of these things. It's these things in combination with each other at different times. Number eight, going to church. I find going to church every week while asking others to pray for me. That has really helped me. I even attend a special healing service during the week when I can. Most of the churches have these healing services. So definitely look into them, see if you can tap into some new faith-based practices like going to church, like being part of asking the church to pray for you or even trying this healing service as a first step. I promise you'll meet some wonderful people along the way. And as you are praying for yourself, you'll also be praying for other people. And one of the great things about that is that you can help another person while helping yourself and that you realize that you're not alone. There are a lot of people suffering with different things. It doesn't have to be cancer, it could be mental health, it could be lots of things, right? So see if maybe going to church if you haven't gone in a while. You could also too, have a one-on-one meeting with somebody from your church or just you can go to a visit at church anytime you want. Number nine, exercise. Exercise is especially important during anxiety. I'm not talking about the walking that I just was talking about. I mean, cycling, biking, resistance training, swimming, tennis, pickleball, something that really pushes you to the limit and requires your full attention. So this type of exercise can help work off a lot of stress. So put it in the forefront of your mind to try next time. I happen to love my Peloton. I'm not on it as nearly as I should be, but when I do it is extremely helpful. Just that 10 or 15 minutes works off so much stress. You don't realize it until you're after it, right at the beginning. It's so hard. Oh, do I really want to get on there? But once I do it, I feel, oh, so much better. And I think you will be too. So don't be afraid to do some vigorous exercise. You don't need to do it every single day of the week. You can just maybe start with one or two days a week and see how that goes on the week before your scans. I hope that might help you. Number 10, and this is the last thing that has helped me manage anxiety. What I do, and again, I've learned the hard way guys. I've been doing this for three years. I automatically schedule a follow-up conversation with my oncologist the same time as I set schedule the scan. I've tried. I've tried to be one of those people that doesn't look in my MyChart when the results come in, but I have never been able not to look at it. But what I do now, do now is I book the appointment with my oncologist approximately 48 hours after the scan to review it with me. So when this helps to really reframe how I view scans from being so scary to providing useful information and that useful information could potentially, and in the case for me, it did open the door to a better treatment if one is needed. Why would I want to still be on Tagrisso if Tagrisso wasn't working? And that's exactly what happened to me. And that scan when it showed that Tagrisso wasn't working for me, was absolutely terrified. I was upset, I was crying. I was really upset because that scan showed progression. But at the same time, where are we maybe a year later now that I've been off to Risso, making that pivot. And I made a hard pivot, you guys, a pivot in my medical care, a pivot in my medical team, and a pivot to how and where I was being treated. So that scan that I was so upset about that caused so much anxiety and caused so much distress helped me make one of the best decisions that I've ever made in my three-year cancer journey here. That reframing in your mind is really important. Don't lose sight of it. And remember that all of these emotions that we're feeling, the anxiety, the fear, the depression, the hopelessness, all of that is normal. If you take nothing else from this video, take this. Scanxiety is not a personal failure. It's a natural response to you and I living with uncertainty. And that alone is stressful. Understand that there's going to be days that you're going to manage it well, while other days are potentially absolutely terrifying. I'm just telling you the truth. Both can be true. There are days where you can manage it days and moments where you feel like, oh, this is just crushing me. So if you're waiting on scans right now, I want you to hear this clearly. You don't have to be brave all the time. You don't have to stay positive. You don't have to fake it until you make it. What you do have to do is you have to keep on showing up for them because they are super, super important. And that's enough. Showing up is enough, and I commend you on that. I appreciate you. I thank you so much for listening. I hope you found some value in today's video. One day, one story, one breath at a time. This is Tina Powell for Lung Cancer Strong. Thank you for joining me today on Lung Cancer Strong. Remember, this podcast is strictly for informational purposes and does not constitute medical advice. Always talk to your oncologist, doctors, and healthcare team about your individual situation. If you'd like to reach out to me or share your thoughts, please email me at tina@lungcancerstrong.com allow 48 hours for a reply. And don't forget, you can find us on YouTube and on all the major podcast outlets. Hit subscribe so you never miss an episode. And get notified when something new drops one breath, one story one day at a time. This is lung cancer Strong.