Life After Cancer: Common Health Challenges Survivors Face

June is National Cancer Survivors Month, a time to recognize the millions of people living with and beyond a cancer diagnosis. In this episode, Dr. Krystle Zuniga discusses what survivorship means, common challenges survivors may face after a cancer diagnosis, and why nutrition should be part of whole-person survivorship care. We’ll talk about fatigue, body changes, long-term side effects, chronic disease risk, and the importance of meeting your body where it’s at during recovery.

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Transcript

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Welcome back to the Cancer Nutrition HQ podcast. I'm your host, Dr. Crystal Zuniga, oncology registered dietitian. And today we're talking about cancer survivorship. June is National Cancer Survivorship Month, and National Cancer Survivorship Day is always the first Sunday of June, so we just celebrated that. This is a time to honor and recognize the millions of people living with and beyond cancer. But it is also about raising awareness of the ongoing physical, emotional, social, and financial challenges that can continue after diagnosis and treatment. It is a time to advocate for better research, resources, and whole person care that helps survivors live well after a cancer diagnosis. Because survivorship care should not just be, congratulations, we'll see you in a few months for your scans. I hear a lot of survivors find themselves standing in this strange and isolating place. There's this unspoken expectation from the outside world that says, awesome, you're done, time to get back to normal. But as I'm sure you're aware, there is no going back to the old normal. Everything has changed: your body, your mind, your life. And that is really the core of today's episode. Cancer survivors deserve more than treatment. You deserve care that helps you heal, recover, and thrive while feeling supported along the way. So this episode is kicking off a multi-part series dedicated entirely to cancer survivorship. This episode is setting the foundation by defining what survivorship means and an overview of the challenges that linger after active treatment ends. In this episode, I'm not going to deep dive into every long-term side effect, because many of them will be covered in dedicated episodes over the next few weeks. Today is about the big picture. And you know that I love to give people action items, so I'll also spend some time discussing ways you can support yourself in recovery. So let's get into it. First, let's define survivorship. Because when do you actually become a cancer survivor? Most people assume that you earn that title when you hit that five-year remission mark, or at least when you finish primary treatment. But cancer survivorship actually begins at the moment of diagnosis and lasts for the rest of your life. So by definition, cancer survivors include those who are newly diagnosed, currently in treatment, people who have completed treatment, people living with stable disease, and people living with metastatic cancer. All of them are cancer survivors. And I recognize that not everyone identifies with a label of cancer survivor, but it will be the term that I use in this podcast. But even though survivorship technically starts at day one, there's this distinct and often jarring phase that happens when treatment is over. And this is a phase that I'll be talking about today. During active treatment, you're surrounded by support from your friends and family, you're seeing your medical team multiple times a week, and your life has structure around appointments, lab draws, and treatments. And even though it is an exhausting and challenging time, you have a team and community standing with you. And then active treatments stop. The appointment frequency drops. And suddenly that community of support begins to fizzle out. And you feel expected to step back into your quote, normal life, but nothing about your life feels normal anymore. And if this was your experience, you are definitely not alone. The National Coalition for Cancer Survivorship conducts an annual state of survivorship survey. And in their most recent survey, 70% of cancer survivors reported being very satisfied with their care during treatment, but this dropped to only 60% for post-treatment care. Survivors also reported low confidence in how to manage their health after cancer. But why does this happen? Why is this such a common experience? Well, one contributor is that this healthcare system is designed for acute management, treating the cancer, which is great, but it's not set up to support long-term wellness or chronic disease prevention. And this isn't to blame your healthcare team. There are just bigger policies and systems at play here. Now, again, according to that survey, only about one in three survivors reported receiving a formal survivorship care plan from their medical team. So without this roadmap, survivors are left to navigate survivorship on their own, wondering why they feel so broken when they're supposed to feel healthy now that the cancer is gone. But surviving cancer is just the first step. Some side effects improve after treatment ends, but some can persist for months, years, some even show up later down the road. And some survivors are living with metastatic disease where treatment continues indefinitely. And cancer treatments, while lifesaving, can also cause systemic cellular changes that impact the body for years or even decades after treatment is over. I'm going to review some of the most common issues that survivors live with. And again, I'm covering these broadly because they each deserve their own spotlight in future episodes. Cancer-related fatigue is the most common side effect of treatment, and it is not the same as feeling tired after a busy day or a poor night's sleep. It has a clinical definition as a distressing, persistent, subjective sense of physical, emotional, and or cognitive tiredness or exhaustion that's related to cancer or cancer treatment. And a key thing here is that it's not proportional to your recent activity and it interferes with usual functioning. Basically, it's this type of fatigue that's interfering with basic daily functioning, impacting that ability to live day to day normally, sustain a career, or maintain your relationships. Some survivors experience chemotherapy-induced peripheral neuropathy. This is a damage to the peripheral nerves that can lead to numbness, tingling, burning, stabbing pain, balance changes, sensitivity to even socks, shoes, or bed sheets. This also can impact everyday actions like buttoning a shirt, typing on a keyboard, making dinner, while also impacting the ability to exercise, sleep, and have independence. Some experience cancer-related cognitive impairment, often called, quote, chemobrain, although I don't like that term. This can affect multiple domains of cognitive function, including memory, attention, processing speed, word finding, multitasking. So not only is it frustrating, these cognitive changes can make it difficult to get through your day-to-day or get back to work. Others experience pain, lymphedema, GI changes, taste changes, swallowing difficulties, dental issues, early menopause, body composition changes, bone loss, cardiometabolic changes. While progression or recurrence are often concerns, unfortunately, many survivors are never properly warned about their increased risk for multiple chronic diseases. Because of these shared risk factors with cancer, like chronic inflammation, and the direct toxicities of certain treatments, cancer survivors face a significantly higher risk of chronic conditions like type 2 diabetes, cardiovascular disease, and osteoporosis. And then there are the non-physical challenges, anxiety, depression, fear of recurrence, post-traumatic stress, body image changes, changes in relationships, changes in employment, and financial toxicity. So when we talk about challenges in survivorship, we're not just talking about recurrence risk. Multiple facets of life and health are impacted. But you're not broken. And I want to pause here because I know this is starting to sound a little doom and gloom. But the goal of naming these challenges is not to make survivorship feel hopeless. I wanted to validate what so many of you have experienced. You may be carrying this silent burden of guilt because you think that you should just be happy to be here. But these issues are life-changing and extremely difficult, and you're not the only one going through these challenges. And one of the things I often hear from survivors is some version of, I thought I would feel better by now. But there is no single timeline for healing after cancer. There's no universal back to normal date, like, hey, after three months, you're going to start to feel like this. In six months, you'll be feeling like this. Because some people start feeling better within weeks or months. For others, a lot of these effects can linger much longer. Your body is healing at its own pace. You are not behind. Your recovery is not going to look like anyone else's. And for many people, recovery is also not linear. It's more like this messy, jagged line. Like you can have days where you feel stronger and you're feeling great. And then days where symptoms flare, energy drops, and you feel like you moved backwards. That does not mean that you are failing. Be gentle with your changing body. It might not look the way it used to. It might not move the way it used to. And it may require different amounts of fuel or more rest. But gentle is not synonymous with easy or being complicit with your health. So don't get those two confused. You can put work into rebuilding strength, improving nutrition, and moving your body while simultaneously showing yourself support and compassion along the way. And taking this active role in your recovery can be very empowering. I really don't like when patients are told, just give it time when it comes to recovery. While, yes, time can help with some side effects, time alone is not a recovery plan. And it won't fix things like muscle loss or chronic disease risk. Those don't get better with time. Lifestyle factors, though, like diet, are a tool that can help support recovery. Diet can manage side effects, lower chronic inflammation, and protect your cardiometabolic health. So briefly, let's just look at how nutrition could directly address some of the challenges that I discussed earlier. When it comes to cancer-related fatigue, small clinical trials have shown that a healthful dietary pattern may reduce the severity of fatigue. A balanced diet not only provides steady energy, it's a source of anti-inflammatory compounds that can help combat that inflammation contributing to fatigue. Similarly, studies have identified a positive relationship between antioxidant-rich, anti-inflammatory dietary patterns, and cognitive function after cancer. For bone health, your diet is providing the literal structural matrix. Bone remodeling requires more than calcium and vitamin D. We have vitamin K, phosphorus, vitamin A, vitamin C, magnesium, to name just a few of those vitamins and minerals involved in the process. And remember those elevated risks for heart disease and type 2 diabetes? We also know that following an anti-inflammatory dietary pattern like the DASH diet or the Mediterranean dietary pattern supports metabolic health and protect the heart and blood vessels. Your nutrition is just one way to actively participate in your own healing, recovery, and long-term health. And since nutrition is so clearly important for recovery and health, you would hope that every cancer survivor received information about diet from their care team. Unfortunately, nutrition is rarely formally embedded into standard post-treatment care. Remember that state of survivorship survey I mentioned earlier? While 77% of survivors reported feeling very confident knowing when or what follow-up test and screening to receive, only 31% reported confidence in knowing the recommended diet. And I know many survivors are motivated to learn more and make changes to help lower disease risk and regain strength. You are likely listening today because you do care. But unfortunately, without support, you are left to piece things together. You're looking at forums, support groups, books, and social media for information. Again, it's probably how you found me. But I'm sure you're well aware that not all the information out there is good. And it may be conflicting or inaccurate. If I could redesign survivorship care, nutrition would be built in from the beginning, not just provided through some passive comment like, and try to eat a healthy diet. But since it's not really a part of most people's care, where can you start? First, make sure you're eating enough, especially if you're feeling that fatigue, losing weight unintentionally, or you've been losing muscle. Second, prioritize protein. Protein is going to help support that muscle repair and maintenance, immune function, wound healing, and overall recovery of those healthy cells. This does not mean everyone needs to go on some extremely high protein diet, but many survivors can benefit from being intentional about prioritizing protein at their meals. But don't forget about fiber. Fiber-rich plant foods like vegetables, fruits, beans, lentils, whole grains, nuts, and seeds are going to help support your gut health, metabolic health as well. And you need to support that organ of longevity, the muscle, with both nutrition and movement. While protein helps, muscle needs that stimulus. That could mean resistance training, getting a physical therapy referral, or have some supervised exercise support, or just starting very small if you're very deconditioned. There's much more that goes into each of these, but this is a good general framework of what to prioritize: energy, protein, plant-forward diet, and movement. And if you haven't listened yet, check out my second episode where I review the nutrition foundations in cancer. And while nutrition is a powerful tool and the focus of this podcast, it's not the only important tool for survivorship. This is where that self-advocacy comes in. And I have a few ways that you can advocate for yourself as a cancer survivor. Request that survivorship care plan. When you're nearing the end of your active treatment or you've already finished treatment, ask your oncologist or nurse navigator, when will we be reviewing my survivorship care plan? And if they don't have one available, request it. This plan should at least detail the exact treatments you receive, the potential long-term and late side effects to look out for, which doctors are responsible for your follow-up care, and what screening schedules that you need to stick to. Having this in writing helps you feel like you got a better roadmap moving forward. But wouldn't it be cool if you could just like plug it into something like Google Maps, a stage two breast cancer survivor, and you get this exact play-by-play one day? But until then, you're going to need to ask for the help that you need. So ask for those specific referrals. Don't wait for your doctors to bring up nutrition, physical activity, or how's your mental health? If you're struggling with things like fatigue, cognitive changes, dietary choices, ask directly. Can you refer me to a dietitian to help me with my diet after cancer? Or I'd really like to meet with a physical therapist who specializes in cancer rehab. And if they tell you it isn't necessary, which I hope they don't, gently remind them that you know that you have an increased risk of metabolic and cardiovascular disease and you want proactive preventative care. Advocate for yourself. I also suggest keeping a simple log of your side effects like fatigue, brain fog, digestion, any pain you're experiencing so that you can start to track any changes or improvements over time. This log can also be used in your appointments so you have some hard data to show your team rather than trying to remember everything on the spot with that limited time with them. It doesn't have to be super detailed, and it could also be done in this way that makes sense to you. Maybe you're marking on a calendar when your fatigue was so severe you couldn't do much more than get out of bed. Because if that frequency has not gone down over a few months, that is definitely worth discussing with your provider. Really anything that's impacting your quality of life deserves discussion. And advocacy also extends to your personal life. It is okay to say no to certain social obligations, career demands, family events when your body is telling you that it needs rest. Although other people may want you to be back to normal, you do not owe anyone a performance of being back to normal. Be honest with them and yourself with how you're feeling. Overextending yourself is just going to backfire and can lead to setbacks. Now, I also want to be clear that survivorship cannot be solved by just telling survivors, hey, just advocate more or work harder. Yes, self-advocacy and referrals can help, but the burden should not only be on you as a survivor. The whole system needs to change. We need survivorship clinics that are accessible and funded and better insurance coverage for supportive care services like nutrition, physical therapy, mental health. And quite frankly, we need to stop acting like survivorship care is optional and a nice to have. Only 36% of survivors getting a care plan is wild to me. Now, I don't have solutions here. I'm just simply stating that this is a systemic problem that requires a major overhaul. And maybe the point I'm just trying to make here is it wasn't just you. And it's not because your care team didn't care. It's multiple issues at play that make it challenging for you to really get the care that you deserve. Now, if you're listening and you're not a survivor, how can you better support cancer survivors? I've heard many survivors say that post-treatment can feel even more isolating because everyone else is ready to move forward, but the survivor is still dealing with the after effects. So avoid well-intentioned statements you may think are encouraging, like, look at the bright side, at least you're done with treatment. You're all done, time to put that behind you. This can feel invalidating to a survivor who is currently battling severe chronic fatigue, chemo brain, or that anxiety from the fear of recurrence. Although physically they may look better, you have no idea what's going on inside. Believe them when they say they are tired, still in pain, anxious, or struggling. Be a safe space for them, to be honest. Ask them, how are you feeling in your body today? Or, I know treatment is over, but I'm here if you want to talk about any struggles you're still dealing with. Let them know it's okay to not be okay. Oftentimes, just listening can be enough. Keep showing up. To wrap this up, cancer survivorship is complex with unexpected physical and mental hurdles. And while nutrition is not the entire solution, it can help support recovery, quality of life, and multiple aspects of physical health. I'll be discussing some of the common side effects that nutrition may help with in more detail in future episodes. And I'd love to incorporate your experiences and questions into them. You can head over to my podcast website and the link is in the episode description. There, you can drop a note or voice memo with your experience, questions, and what you want covered as we move through this series. Thank you so much for tuning into this podcast. I know there is a lot that you can be doing with your time. So if this episode resonated with you, or if you know a survivor or a caregiver who needs to hear this, please share this episode with them. Take care of yourselves and remember to eat your fruits and veggies!