This is our third video in our Ask a Cactus Series on Guys and Young Adult Cancer. Hear from Kyle, Bryan, and other contributors via their comments! In this video, they’ll talk about finding community, misunderstandings about the guys cancer experience, and more.
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How spending time with art can spark curiosity, connection, and creative coping through young adult cancer.
Continue readingThis is our second video in our Ask a Cactus Series on Guys and Young Adult Cancer. Hear from Kyle, Bryan, and other contributors via their comments! In this video, they’ll talk about how to support guys during their cancer experience in a way that is genuinely accessible and assistive.
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Whether you’re facing down a new diagnosis, navigating life after treatment, or showing up day after day for someone you love—you don’t have to do it alone.
This year, YA Cancer Gabfest 2026 is all about Ground Control to Young Adults: Your Mission to Connection, Healing, and Growth. From December 7–11, we’re bringing together young adult cancer patients, survivors, caregivers, and the professionals who support them—for a week of connection, conversation, and real-world survivorship wisdom.
You’ll find interactive sessions, crash courses, and heartfelt stories from across the YA cancer community—all designed to help you navigate the twists and turns of cancer together.
Because whether you’re the one in the chair, the one holding the clipboard, or the one holding a hand—you’re part of this story. And your voice matters.
Join us. Let’s build the kind of support we all wish existed—stronger, louder, and together.
This is our first video in our Ask a Cactus Series: Guys Edition. Please meet Bryan and Kyle! They are guys in our Cactus Cancer Society community and here to answer a range of questions you may have about the experience guys have in the young adult cancer space. If you’re a guy looking for a sense of “I feel that way, too,” a caregiver to a guy with cancer, or anyone else – they’re here to bring you the truth of their experiences.
Check out this video to meet our experts, Bryan and Kyle!
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It’s September! The start of the school year is here and that means it’s time for kids to learn, but what about adults? We don’t have any curriculum or teachers to teach us, we’re adults – we need to teach ourselves. However, how do we figure out what we should learn or what we even want to learn? One thing to do is think about school – what did you like? Did you like Math? English? History? Science? Maybe art, gym, health, or one of those other “specials” in school (At least that is what those subjects were called when I was in school)? We all liked at least something at one point – what was yours?
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As a young adult cancer survivor, I remember how quickly treatment started moving and how much information I was expected to absorb along the way. There were appointments, new medical terms, treatment decisions, and a parade of acronyms, all arriving while I was still trying to wrap my head around the fact that I had cancer at 30.
If you have ever left an oncology appointment wondering what just happened, what half of those words meant, or whether you were supposed to have an opinion about the plan, I promise you are in very good company.
Young adults are often making cancer decisions while also thinking about fertility, work, school, finances, relationships, mental health, and plans for the future. Those parts of our lives do not become less important when cancer enters the picture. They often become even more important.
You deserve to understand your options and have a meaningful voice in what happens next. That is where shared decision-making comes in.
The National Cancer Institute defines shared decision-making as a process in which a patient and health care professional work together to decide on the best plan of care.
Your care team brings medical knowledge, clinical experience, and information about the potential benefits and risks of each option. You bring knowledge about your own life. You know what matters to you, how your body is feeling, what you are worried about, which side effects feel manageable, and what you need treatment to make room for.
Shared decision-making means receiving information in language you can understand, having time to ask questions, and being treated as an active participant in your care. You can ask your provider to explain something again, write it down, discuss another option, or take time to think. You can bring someone you trust to an appointment or request a second opinion.
This kind of partnership can be especially helpful when your care team is considering whether additional testing could provide useful information about your cancer. Biomarker testing is one example of a decision you may want to discuss together. It may offer clues about your cancer and possible treatment options, but whether testing is useful depends on factors such as your cancer type, stage, and treatment history. Your goals and priorities can then help guide the decisions that follow.
Biomarkers are genes, proteins, gene changes, or other substances that can provide information about a cancer. They may help your care team better understand your cancer’s subtype, how it behaves, or whether it is likely to respond to a particular treatment.
You may hear biomarker testing called molecular testing, tumor profiling, somatic testing, genomic testing, or genetic testing of the tumor. Depending on your cancer and the purpose of the test, a laboratory may examine tumor tissue collected during a biopsy or surgery, blood, or another bodily fluid.
Examples of biomarkers include HER2 in breast, stomach, and some lung cancers; EGFR and ALK in lung cancer; tumor changes involving BRCA1 and BRCA2 in several cancer types; KRAS in colorectal, lung, and pancreatic cancers; and IDH in gliomas.
Biomarker testing may help identify a targeted therapy or immunotherapy, rule out treatments that are unlikely to help, clarify information about your cancer, or determine whether you may qualify for a clinical trial.
It is also important to understand the limits of biomarker testing. Its usefulness depends on your cancer type, stage, treatment history, and the biomarkers researchers currently understand. Testing may identify a treatment option, provide information that doesn’t change the current plan, or produce an uncertain result. A biomarker result can be important information without providing every answer.
If biomarker testing may be relevant to your cancer, ask your care team how it could inform your treatment options. You can also ask what the test examines, what sample is needed, how long results may take, what it may cost, and whether waiting for results could delay treatment. When the report is available, ask your oncologist to explain what it means for your care.
Questions to consider:
You do not have to ask everything at once. Choose the questions that matter most, and bring a support person to take notes if helpful.
At Cactus Cancer Society, we create spaces where young adults can talk honestly about what cancer care is actually like. We want to know how conversations about shared decision-making and biomarkers felt from your side of the exam room.
What did you understand? What felt confusing? What do you wish someone had explained differently? What helped you feel heard?
These questions will be part of our next four-week Creative Arts Book Club, Hue’s in the Moment?
Together, we’ll work through Into the Moment: A Journal and Coloring Book to Inspire Mindful Creativity by Dani DiPirro. Each online session will include coloring, journaling, grounding activities, creative connection, and good conversation with fellow young adult cancer patients, survivors, and thrivers.
During the final 30 minutes of each session, we’ll hold a compensated focus group about shared decision-making and biomarker education in young adult oncology. You do not need to have a particular biomarker, receive biomarker testing, or arrive with expert knowledge. We want to learn from a wide range of young adult cancer experiences.
As both a young adult cancer survivor and a clinician, I know these conversations can bring us back to decisions, questions, and moments that felt deeply personal, confusing, or vulnerable. I am sincerely grateful to everyone willing to share those experiences. Your perspective matters, and we will treat it with the care it deserves.
Who: Young adult cancer patients, survivors, and thrivers ages 18–45
When: Tuesdays, September 15, September 22, September 29, and October 6
Time: 5–7 p.m. PT / 6–8 p.m. MT / 7–9 p.m. CT / 8–10 p.m. ET
Where: Online via Zoom
Compensation: A $10 Amazon gift card for each focus group session attended, with $50 total for participating in all four sessions, plus a free copy of Into the Moment
REGISTER FOR HUE’S IN THE MOMENT
This season of Creative Arts Book Club is sponsored by Daiichi Sankyo (DSI), a pharmaceutical company focused on oncology. Focus group feedback will be shared with DSI in de-identified form, which means participants’ names and identifying information will not be included.
This information is intended for educational purposes and is not a substitute for personalized guidance from your health care team. Whether biomarker testing is appropriate depends on your individual diagnosis, treatment history, and circumstances.
Welcome to August, that classic time for families to go on vacations before the school year starts. What vacations did you take as a kid? Was your family a vacation family or the kind of family that did whatever you could around the house to make summers a bit more fun?
Continue readingThis is a double issue of Cody’s Corner! Cactus Cancer Society takes July off, so you will get double the Cody in this post! Welcome to June, the month with the longest day of the year!
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How do we cope with the major fear of recurrence for the rest of our hopefully long lives?
How do we choose a career where we do not want to waste our time and be fulfilled, but also gives us the stability and health benefits, especially after experiencing such a traumatic part of our lives?
I’m going to do my best here to be a supportive place to land with these concerns, because they are some heavy and really common concerns among YA cancer folks. First, I want to name something important. Fear of recurrence is a huge part of young adult cancer. So much so that research consistently identifies it as one of the top three long-term aftereffects experienced by AYA survivors. I share that not to make it feel inevitable, but to normalize the experience. You are not alone in this fear, and many struggle to navigate it.
When you’ve lived through something as traumatic and life-altering as cancer, it makes sense that your brain and body remain alert to the possibility that it could happen again. Your mind is trying to protect you! The tricky part is that this protective system sometimes stays on high alert long after treatment ends (or longer than necessary).
Navigating fear of recurrence will look different for everyone. For some people, it means working with a trusted therapist who understands cancer survivorship. For others, it means finding community spaces where they can talk openly with people who truly understand the experience. And for many others, it takes space and time (ugh, I know, I know….time?!?) for healing as your mind, body, and soul adjust to your reality.
Here are a few approaches that I’ve found personally and professionally helpful in dealing with fear of recurrence:
Let the feeling exist.
Trying to force fear away often makes it louder. Acknowledging that fear is present can sometimes soften its grip. For many people, fear of recurrence does not completely disappear; it softens with time and grows quieter with experience navigating it. I don’t say that to scare you, but to name a truth that many experience: Sometimes the work becomes less about getting rid of fear and more about learning how to let the fear exist without letting it run your life. You see, the more we try to avoid fear, the bigger it can become. You might experiment with gently allowing yourself to be scared while still doing the important things in your life. You might even try practicing being with the fear in small increments on purpose. Yes, I know that sounds a little strange, but stay with me. The more you practice letting the feeling exist, the easier it can be to navigate when it inevitably knocks on your door.
Bring yourself back to what you actually know to be true.
Fear has a way of pulling our minds into imagined futures. When that happens, try to anchor yourself in the present moment. What do you know to be completely true right now? Right now, you are here in this moment. Right now, you are living your life inside of trauma or new symptoms. Right now, you are doing your absolute best to cope. Bringing your brain back to the current moment is not only an exercise in reeling your thoughts in, but an act of mindfulness. The practice of paying attention to the current moment, on purpose, without judgment. Mindfulness has been shown, across a multitude of studies and cultural practices, to be a cornerstone of resilience and psychological health. When you notice your brain in future-tripping land (as I lovingly call it), try to see if you bring it back to what’s right in front of you through art, music, or another novel experience. It should help take the temperature down!
Additionally, if you are unsure what symptoms should prompt a call to your oncologist, ask them directly. Having that information can be incredibly grounding. Keep a list of those symptoms somewhere accessible (looking at you, iPhone notes app) so when your brain starts spiraling, you have something concrete. Sometimes that reminder helps us see that our mind is trying to protect us from a future that has not arrived.
Give the fear somewhere to go.
Talking about it with trusted people, journaling, creative expression, therapy, or support groups can help move fear out of your head and into a space where it can actually be processed. Giving your body an opportunity to release some of that energy can be really important for your nervous system and overall mood management. Things like movement, physical activity, grounding exercises, or emotional processing in safe spaces are all ways to help your nervous system move through fear instead of holding it alone. Give yourself and your body an opportunity to chew through the feelings by finding which activities work best for you.
Your second question about choosing a career after cancer is another really big one. Choosing a career that balances your needs is already a complicated process in young adulthood. When cancer enters the picture, those decisions can start to feel even heavier. It makes sense that you might feel overwhelmed or even frozen when trying to choose something that is both meaningful and stable. Cancer often changes our relationship with time. Suddenly, the idea of wasting time can feel terrifying. There can be pressure to find work that feels deeply fulfilling while also making sure you have stability, health insurance, and enough flexibility to take care of your body.
The truth is that most people build meaningful lives in layers rather than through one perfect decision.
Give yourself some grace to make the next best choice you can in this moment, and maybe even some permission to change your mind later. As you continue to grow as a human, your needs and priorities may shift or evolve. That may mean a professional pivot somewhere down the road, and that is okay (and to be expected, growing and changing is so so human).
Some tough love here: you do not have to solve the rest of your life today, even if your brain is trying to convince you that you should.
If you still find yourself feeling stuck on the career piece, it may be helpful to work with a career coach, academic advisor, or another professional who can help guide you through what matters most to you right now. Sometimes, simply exploring your options with someone who understands the process can relieve some of the pressure to find a path that checks every box all at once.
The fact that you are asking these questions tells me you are paying close attention to the life you want to build. That kind of reflection can feel heavy sometimes, but it can also lead to a life that feels deeply intentional. What a wonderful paradox.
Wishing you courage as you keep asking the big questions,
Perrie
Ask Perrie is Cactus Cancer Society’s advice column for the questions that young adult cancer doesn’t come with instructions for. Community members submit anonymous questions, and Perrie offers thoughtful guidance, perspective, and practical ideas for navigating life during and after cancer.
