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.
