You Get a Say: Shared Decision-Making and Biomarker Testing in Young Adult Cancer

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.

What Is Shared Decision-Making?

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.

What Is Biomarker Testing?

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.

Bringing Biomarker Testing Into the Conversation

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:

  • Has my cancer been tested for biomarkers, and can I have a copy of the report?
  • What did the test find, and does it change your recommendation?
  • Could the results identify a treatment or clinical trial?
  • What are the test’s limitations?
  • How might each option affect my fertility, energy, cognition, sexual health, work, or quality of life?
  • How much time do I have to decide?
  • What other options should we discuss?

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.

Help Us Color in the Gaps in AYA Cancer Care

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.

AYA Awareness Week: What We’re Still Missing

April 6th through April 10th is Adolescent and Young Adult (AYA) Cancer Awareness Week, a time dedicated to bringing attention to the unique realities of people diagnosed with cancer between the ages of 15 and 39, a group that often falls in between pediatric and older adult care and is frequently overlooked in research, resources, and support.

According to the National Cancer Institute, about 89,000 young people in this age range are diagnosed with cancer each year in the United States, accounting for about five percent of all diagnoses.

What’s less often talked about is that for some cancers, rates are actually rising in younger generations. According to the American Cancer Society, colorectal cancer in people under 50 has been increasing by about 2–3% each year, even as rates decline in older adults. It has also become one of the leading causes of cancer-related death among young adults, with about 1 in 5 new cases now diagnosed in people under 55.

The National Cancer Institute notes that young adults are also more likely to be diagnosed at later stages, in part because symptoms are often dismissed or attributed to less serious conditions. And this trend isn’t limited to one type of cancer. Research highlighted by the National Institutes of Health shows that several cancers, including breast, pancreatic, kidney, and colorectal, are increasing in younger generations, pointing to a broader shift in cancer trends.

So yes, awareness matters. But awareness alone doesn’t change what it feels like to be dismissed in a doctor’s office, or to navigate disability, fertility, identity, and everything in between. Recently, our Rooted Voices Advisory Board came together to reflect on AYA Awareness Week. We asked a simple but honest question: What’s really needed in the AYA space with all that is going on the world today? What emerged was thoughtful, direct, and deeply grounded in lived experience.

Here are a few of the themes that came forward.

Being taken seriously, earlier

Many young adults shared how difficult it can be to get answers when their concerns aren’t taken seriously. Being told you’re “too young,” reassured too quickly, or asked to wait it out can delay diagnosis and add another layer of stress to an already overwhelming experience.

Several board members described having to push for testing or advocate more strongly than expected, especially when symptoms were initially minimized. Over time, this can create hesitation. People begin to question their own instincts, wonder if they’re overreacting, or delay speaking up again, even when something still feels off.

Board members also pointed to the need for stronger provider training in bedside manner, clearer guidance for young adults on when and how to advocate for additional testing, and clinical environments where concerns are met with curiosity instead of dismissal. Small shifts in how concerns are received can make a meaningful difference, not just in outcomes, but in how safe and supported someone feels seeking care.

Turning advocacy into something tangible

Accessible education around prevention and early detection, including HPV vaccines, pap smears, mammograms, and genetic testing, was also highlighted as an ongoing need. Without clear, centralized information, many young adults are left to piece things together on their own or learn about options later than they should.

That same gap shows up in how we talk about self-advocacy. It’s often encouraged, but not always explained in a way that feels usable in real moments of care.

Board members expressed interest in more concrete, shared tools, such as a toolkit or living resource document that young adults can return to and build on over time. This could include language for how to approach second opinions, guidance for navigating pushback or uncertainty, and clear next steps when care is denied or delayed.

Tools like this can help make advocacy feel more possible, especially in moments when it’s hardest to know what to say or do.

Making space for grief in all its forms

Grief showed up in many different ways in this conversation. Not only in response to loss, but in the ongoing, layered ways it can exist alongside a cancer experience. Changes in identity, plans, relationships, and sense of certainty all carry their own forms of grief. They identified a need for ongoing spaces to process grief, community-based ways to remember and honor those who have died, and support that acknowledges grief as an integral part of the experience, not something separate from it. 

Making resources easier to find and use

A number of participants reflected on how difficult it can be to find and navigate available resources. They shared that finding information and resources about fertility preservation and storage, financial assistance and grants, insurance navigation and appeals, and workplace and school accommodations has been challenging. In many cases, resources do exist, but they are scattered or not clearly communicated. There is a strong desire for more centralized, easy-to-understand information that young adults can actually use in real time.

Expanding what support can look like

Support groups can be meaningful, but they may not meet every need. Young adults are often navigating multiple layers of experience at once, and many are looking for support that feels more tailored and reflective of who they are. This includes identity-affirming spaces, creative and flexible ways to process and connect, and broader representation across cancer types, including rare diagnoses. Support is most effective when it reflects the complexity of the people it’s meant to serve.

What We’re Doing (and Still Learning)

At Cactus Cancer Society, AYA Awareness Month is not just about visibility. It’s about listening and responding.

Many of our programs are shaped directly by conversations like this:

  • Creative spaces like The Inner Canvas, where grief and identity can be explored without pressure
  • Programming that centers lived experience alongside professional insight
  • CE Programs where providers can learn more about how to effectively support YAs with cancer 
  • Ongoing efforts to make resources more visible, usable, and relevant, including our recently updated resource section 

And we know there is still more to build.

Awareness Isn’t the End Goal

AYA Awareness Month matters. Awareness is only the beginning. What young adults are asking for is care that is informed, accessible, and responsive to the reality of their lives.

Part of that is in the small moments. Like being listened to, being taken seriously, having access to information that’s actually clear and easy to find, knowing what questions to ask, and feeling supported enough to ask them.

It’s also in the way support shows up over time. Not just at diagnosis, but in the in-between, in the long-term, and in the parts that don’t always get talked about. We’ll keep listening. And we’ll keep building alongside this community.

Got feedback you want to share with us on what you think the YA Cancer Community needs? Reach out to us at info@cactuscancer.org 

Support Our 2026 Young Adult Cancer Advocate of the Year Candidates!

Support Our Young Adult Cancer
Advocate of the Year Candidates!

Cactus Cancer Society is so proud to introduce the 2026 Young Adult Cancer Advocate of the Year (YAAY) candidates!  These passionate, driven individuals are not only raising awareness, but making a tangible impact in the lives of young adult cancer patients, survivors, and caregivers. 

Over the course of nine weeks, these inspiring candidates will raise critical funds to fuel and sustain creative coping programs that combat the loneliness, fear, and uncertainty of a cancer diagnosis. But they can’t do it alone. This is where YOU come in!

Every dollar you donate is a vote for the advocate you believe deserves the prestigious title of Young Adult Cancer Advocate of the Year. More importantly, your contributions directly fuel Cactus Cancer Society’s life-saving programs – proven to reduce loneliness, anxiety, depression, and psychological distress for young adults facing cancer. Who will take home the title of Young Adult Cancer Advocate of the Year? That’s up to you! Casting your vote today and help shape the future for young adults facing cancer!

SUPPORT A YAAY CANDIDATE NOW!

You’ve got a wishlist?!

Ever find yourself thinking…goodness, what’s an easy way for me to give back? Well, we have an easy answer for you! We have a wishlist where you can buy tangible supplies for upcoming programs!

On the wishlist, you can see supplies that will be used in future programs and how many of each of those supplies we’ll need. Then, you take it from there! Able to buy a single item, awesome, THANK YOU! Able to buy several things, awesome, THANK YOU! Everything purchased from the wishlist will be sent to a young adult facing cancer while they take part in a program. You’ll have supplied everything they need for the craft, art, or activity while they experience a supportive community and learn to thrive through cancer.

check out the wishlist!

We’re Hiring!

It has been my very extreme pleasure to watch this organization grow from the very start of an idea to a full-fledged 501(c)3 with over 20 programs helping reduce feelings of anxiety, depression, psychological distress, and loneliness, and serving thousands of young adults facing cancer every year.

Interested in joining our team and positively impacting young adults facing cancer? Have some professional fundraising experience? We’re hiring for a Development Coordinator and we’d love you to apply! We’re looking for someone with a passion for development, interested in working to raise essential funds and build a more supportive and united community for young adults facing cancer. We are a fully remote team and are excited to bring someone new on board!

You can find much more information here along with a full job description and more details on how to get in touch with us.

The Top 5 Favs! Tattoos, Short Hair, Libido, and More!

The blog here has evolved a lot since our launch in April 2015. Sometimes it’s fun to take a look down memory lane and check out our top 5 blog posts of all time!

5. Post-Chemo Hair Growth + Style Tips – real tips from a real survivor about growing out your hair and styling it for every length

4. 5 Pieces of Advice About Sexual Desire from the Awkward Auntie – tips from Dr. Anne Katz, our Awkward Auntie, for those spicy moments

3. Fresh Ink: Cancer Pick Up Lines – a piece of writing from a program here, Unspoken Ink, detailing some wonderful humor while facing cancer

2. Survivorship Tattoos – this isn’t so much a single blog post as it is a tag on our website where you’ll find several great pieces about survivors and their survivorship tattoos

and…drumroll please….

1. Dressing for Short Hair! – for everyone who wants a little tangible help with looking feminine while wearing super short hair

And there you have it! The top 5 blog posts of all time here at Cactus Cancer Society, as they stand today. What other sorts of posts are you looking to see?

10 Questions with Stephen

We are so excited to introduce a community member, Stephen Heaviside, who has joined our Cactus Cancer Society Team. Stephen is not new to our community, and you may know him already! Whether you’ve yet to meet him or have hung out with Stephen before, there’s plenty to discover. Read on for more!

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Voicing Your Choices: End-of-Life Care for Young Adults

Discussions about end-of-life care are often shrouded in fear – and with good reason. Many cultures discuss death only in terms of loss and pain, often with more questions than answers. And who wouldn’t want to avoid discussing death if it’s what is feared the most? The truth is something altogether harder: if we don’t discuss our choices and our decisions when we are able, those around us will make decisions for us, without the opportunity to respect and honor our wishes.

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