EP 6: PET Scan: What to Expect Before, During & After (Patient Guide)

Are you or someone you care about facing a PET scan soon? Feeling nervous, uncertain, or just wishing someone would finally explain the process from the patient’s perspective? You're in the right place. In this episode of Lung Cancer Strong, Tina Powell—stage 4 lung cancer survivor and thriver—walks you step by step through everything you need to know about PET scans. From what a PET scan actually is, how to prepare the day before, what happens on scan day, and crucial tips for managing results, Tina shares her honest experiences and practical advice to help you approach your appointment with greater confidence and clarity. 

You'll learn: 

• What "PET" really stands for and why it matters in cancer care
• How the scan works, and what you’ll feel (spoiler: it’s not painful!)
• What foods and habits to avoid before your scan
• Why your blood sugar matters—and how it can affect your appointment
• What happens during the “relaxation” period and inside the donut-shaped machine
• The importance of getting your scan on CD and sharing results thoughtfully
• How to protect your emotional boundaries when receiving and sharing news

Whether you’re a patient, caregiver, or just looking to understand what this pivotal scan means in a cancer journey, Tina’s
warmth and honesty will help you feel a little more grounded and a lot less
alone.

Transcript

0:00

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 16, 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, fears, 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 every 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're watching this, you probably have a PET scan coming up or someone you love does. And let's be real, everyone, a PET scan can feel absolutely terrifying when you don't know what to expect. I've been there, actually multiple times. So today I'm walking you through, step by step, through the entire process, what actually happens, what you'll feel, what the machine is doing and how to go into it calmly, confidently, and ready. Hi, I'm Tina Powell, stage 4 lung cancer survivor and thriver and your host for lung Cancer strong. Back in January 2023, when I was first diagnosed with lung cancer, they had me do a PET scan. At the time, I had absolutely no idea what a PET scan was, although I knew that it was a type of scan to see and confirm if I had cancer, which I did. But really, I'd wish that somebody would give me information from the patient's perspective, which is what today's video is all about. So let's start with the basics. What is it? When we say PET scan, what do we mean? First of all, the word PET sounds stands for positron emission tomography. So a PET scan is a type of imaging test that shows where cancer might be active and if you're currently undergoing cancer care like me. A PET scan can show how your treatment is working and whether or not that your tumors have grown or have shrunk or have remained stable. So basically a PET scan is utilizing a radioactive tracer or liquid that gets injected into your veins, usually intravenously through your arm. You can think of it as like a camera checking for activity. It's basically seeing if there are areas in your body that are using more glucose, because cancer cells, everybody tend to light up by using more energy. So back to the word pet. Positron. Positron are the tiny particles that are released by that radioactive tracer, by that radioactive element that I just talked about that gets inj in your veins. Emission is what the tracer gives off that energy as it moves through your body. And tomography is that detailed cross section of images that will be evaluated by your radiologist. So a PET scan is literally showing where the tracer activity is happening in your body, which is why it helps to detect cancer activity, inflammation and metabolic changes that may be happening to you the day before. Your PET scan is really, really, really important. PET scans are, as a general rule, usually done early. And that's intentional. Your blood sugar needs to be low and stable for PET scan, which is why they might give you instructions like eating a low carb and low sugar diet the day before, staying away from bread and pasta, potatoes and fruit and, and candy, ladies and gentlemen, limiting exercise and caffeine. You'll be able to eat like meat and eggs and veggies and protein. And they'll also teach you to one, make sure that you've hydrated before your visit. On the day of the PET scan, you're going to meet with a nuclear medicine technologist. That person is the one who will be checking you in and he or she is going to ask you several questions about what you ate and drank the day before as well as the day of. It's this person is also a super important person in the relationship because the nuclear medicine technologist is also the person that preps you for the scan, checks your blood sugar by way of a prick of your finger, places the IV in your arm, injects that radioactive tracer liquid that we talked about, monitors you during the uptake period, which we're going to talk about in a little bit, positions you in the scanner, runs the PET CT machine and ensures the image quality. So that person is really, really important to the relationship. And that person is usually specifically well trained in radioactive safety and imaging protocols. This is the person that you're going to interact with the most. And I want to say, you guys, that usually that person is really super nice. Okay? One of the most important things, though, from this entire encounter and checking in period, is that glucose test. I want you to be mindful, everyone, that your blood sugar is the number that really, really matters here. If it's too high, this could potentially delay your scan. So just keep that in mind. Let's talk a little bit about the IV and tracer. So, as a matter of fact, I just accompanied a fellow survivor on their first PET scan, and the nuclear medicine technologist was really nice and explained everything. Now, be mindful, if you are accompanying somebody on their PET scan, you will be asked to leave the room after they inject the tracer because they want the patient to be fully relaxed before their scan. That tracer, right? Remember everybody, we were talking about it. It's that radioactive liquid. I want you to be mindful, though, and I want you to be aware and not shock like I was. Usually it comes in some, like, metal, like, almost looks like a plutonium shell. I describe it as something that's very futuristic, almost like James Bond. When I first saw it, I was just ready to really, like, freak out. The. The liquid in there, again, is literally radioactive. So don't be alarmed if you see, like, warning labels everywhere. Don't be freaked out about it. This is safe. This is routine. You know, assuming after your glucose level was fine, you'll get that injection in the iv, and they're going to take that IV out right after they inject the tracer and the glucose, which is great. Okay, so you'll get the iv, you'll get the tracer, assuming that your glucose test was correct. And then after that, then they're going to take out the iv, you know, put a little band bandage around you, and then you are going to relax. And that is the hardest part. So you're going to have to wait for 45 minutes in a room by yourself to no phone, no TV, no books, no magazine, just you in a room. They want you completely and fully relaxed. When it's time, they'll call you in and they'll bring you into the scanner. So the scanner looks like a big giant donut. Nothing touches you, as you can see here. You'll literally, like, lie down with your arms above your head like this. And usually they will give you a heated blanket. I always ask for heated blanket, you guys, because I find these rooms so incredibly cold. The scan itself takes about 15 to 20 minutes, and you're going to hear instructions like breathe, don't breathe. Okay? Breathe. So it's not loud like an MRI, which. That's for another future episode. You guys, brain MRIs are loud and obnoxious. This is not the case. You don't hear anything. I promise it's not painful. It's just 15 to 20 minutes. You'll listen to the instructions, and I promise you will be quite fine. Just try to relax. One of the most important things, essential things to do after the PET scan, on your way out as you're checking out with the office, is to get a copy of the scan on cd, no matter what. Guys, you're going to need this, okay? So don't forget to get that copy on the cd. You'll also want to give that office, office manager or the person that's helping you there a copy of the doctors, a list of doctors who should have those results as well, too. In fact, I think it's really a good idea for you to have these names handy before your scan. Right? Walk in there totally, totally prepared, okay? And let me also say that I think it's a really good idea for you to have someone on your first PET scan, especially. Again, I did this with someone recently, and right after the scan, we went for breakfast since my friend had nothing to eat since the day before. This was her first scan. You know, we also use the time at breakfast to talk about the results because this is an important part that nobody, guys, nobody prepared me for this. You know, a PET scan is the scan that's determining whether or not that there's cancer activity. Right? It functions like a report card, and it can absolutely help you make strong and informed decisions. But it, it, it's incomplete information, you guys. It just is telling the doctors that, yes, there is cancerous activity involved. So let's, let's talk about the. The most important aspect of the PET scan, which is managing results. Here's the truth. How you handle this part matters just as much as the scan itself. So modern medicine has changed the game. Apps like my deliver the results instantly, sometimes before even a doctor, before your doctor has even had the chance to talk to you. Okay? So that's what happens to me. After every scan. The results pop up right into my phone on my. My chart app, and it's almost like a breaking news alert, right? For some people, that's exactly what they want, but for others, it is totally and completely overwhelming, especially if this is your first experience with cancer. Okay? So I want to caution you on that. If you do have The MY chart installed. Look, here's, here's my advice after going through this. At least four PET scans in the last four years. Number one, decide before the scan how you want to receive results. Ask yourself, do I want to see them immediately or do I want somebody with me when I literally open my phone or do I want a partner or a family member or spouse to read them first? Do I need some personal space of my own before I process anything? So there's no right way, you guys, it's just your way. So really think about what that is before how you want to receive the results. Number two, if results, if you getting those results on your own will spike your anxiety and really cause like a lot of stress, then just don't open them, okay? Even if it is on your MY chart, you don't have to go to your phone and open it. You can wait until you're with your oncologist or a radiologist or a pulmonologist. Well, usually it's your oncologist, you guys, someone who can interpret the findings, explain the language and answer your questions. So again, if seeing the results on your own is going to make you flip out, then don't do it, okay? Don't open them. Wait until you're with your oncologist. Number three, be careful. Be careful everyone about sharing results too early. This is important because a PET scan is just showing specific activity, right? Suspicious activity, where it lights up. It's telling you that yes, there's cancerous activity or not, but it can tell you in the, in my case, in terms of lung cancer, what type of lung cancer it is, whether or not it's non small cell or small cell, what molecular subtype it is, egfr ALK positive, for example, where your treatment plan is going to be. Okay, so you're still dealing with incomplete information. Keep in mind that a PET scan is just the starting point. It's not the final answer. Yes, it will give you concludes, but it won't give you conclusions. So before you text, before you let everybody know, before you post on social media, remember you are missing critical pieces of information that can change the entire picture that you guys is so important. So keep in mind, and last thing I will say, number four, is about protecting your energy and your boundaries. When you choose to share your results, be mindful that who you share it with, they are going to also to have an emotional reaction. So this is hard for the people receiving this information as well. So think about your relationship with that person, their ability to support you as well. As their ability to handle a reaction like this and how it's going to affect them. So, you know, most people, everybody means well, you guys, but you know, their, their own panic and their own fears can also to hit you at a bad time. So choose wisely and choose intelligently about who you choose to share your results with. I hope that this episode was extremely helpful to you. I hope you feel a little bit more grounded, a little bit more informed and less alone. A PET scan is a huge. It's a big moment in any one cancer's journey, but it's not the entire story. This is just one piece, one clue, one step that will help you and your team and your oncologist, if it is cancer, make the best decisions for for your care. Next week, what we're going to be talking about after the PET scan, for many of us, the next step is a bronchoscopy. I've had several bronchoscopies. It's a procedure that sounds a little bit intimidating until someone like me explains it. I promise you you'll be okay for that as well too. I'll explain what actually happens. So we'll cover that in the next episode of Lung Cancer Strong. What a bronchoscopy is and what it feels like from the patient's perspective. Thank you for being here, especially if you're here for the first time. Everybody, please subscribe to my YouTube channel if you want this information served to you regularly and weekly. We're walking through this journey together. One breath, one story, one day at a time. This is Lung Cancer Strong. Thank you so much for listening. 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@tinaung cancerstrong.com and be sure to at least 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.