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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.
Ask Perrie: Looking for Answers
Dear Perrie,
My mom was recently diagnosed with metastatic, stage four bone cancer following a brutal car accident. The diagnosis came from a scan that was done because she broke her pelvis in the accident. She was five years from having “recovered” from breast cancer. My biggest question, besides the “why” that everyone grapples with, is: If the doctors were doing their job and following up with her and doing check-ups to make sure the cancer wasn’t coming back, how is she already at stage four? Why weren’t they looking? Why didn’t they check? What could they have missed? Do we sue? Can I talk to her “care providers”
These thoughts are all-consuming, and I do believe there is someone to blame. Thoughts?
Dear Looking for Answers,
First, I want to say how sorry I am that your family is facing this. Receiving a metastatic diagnosis five years after a previous cancer diagnosis is devastating for patients and the people who love them, especially when it comes completely unexpectedly. It makes complete sense to me that your brain is searching for a “why.”
When something traumatic or unexpected happens, our brains often search for reasons, answers, and patterns in an attempt to understand what happened and keep ourselves and the people we love safe. Sometimes anger can become part of that search too, especially when something feels unfair, preventable, or impossible to make sense of.
I name that because you mentioned these thoughts are all-consuming. I want to make some space for why your brain may be returning to these questions over and over without dismissing the concerns underneath them. It may be helpful to get curious about what feelings or fears are sitting below some of these thoughts. Are you afraid someone failed your mom? Are you angry that this happened after your family thought cancer was behind you? Are you trying to understand whether anything could have changed what is happening now? Those questions may help you better understand what you need as you continue to support your mom.
As far as the medical questions, I absolutely encourage you and your mom to bring these concerns directly to her care team. You deserve space to ask, “What happened?” and “What do we know now that we didn’t know before?” Her providers are going to be the people best positioned to explain her individual history, what they were monitoring, what they saw over time, and what they understand about her cancer now.
It may help to write your questions down before the appointment so everything doesn’t disappear the moment you walk into the room. You could ask what her follow-up plan had been after her original breast cancer treatment, whether there were any earlier findings that look different in hindsight, when they believe the current cancer may have developed, and whether there is anything about her previous records that they want to review again.
If your mom wants you involved in those conversations, she can also ask her medical team what they need from her so they are able to speak openly with you about her care. Sometimes having another person in the room to take notes, remember questions, or simply listen can be really helpful when everyone is overwhelmed.
If, after talking with her providers and reviewing her records, your family still has serious concerns about her care, you can seek a second opinion or ask another qualified specialist to review her case. It may also help to bring a trusted advocate or family member to appointments, take notes, and write down questions in advance.
In the meantime, I really want to encourage you to give some attention to yourself, too. You were just thrown into a completely different chapter of your mom’s cancer experience without warning. Fear, anger, grief, and uncertainty can take up an enormous amount of mental space, and you deserve support as you carry all of this. That might look like joining a caregiver or co-survivor support group, seeking individual therapy, or connecting with a breast cancer or caregiver community. You do not have to navigate this alone, and you are worthy of care and support, too.
Living Beyond Breast Cancer offers resources for people living with metastatic breast cancer, as well as for their family members and loved ones. They also provide support and opportunities to connect with others who understand the emotional challenges of breast cancer. Elephants and Tea offers writing workshops for caregivers, along with magazines and articles focused specifically on the caregiving experience.
You don’t have to stop asking questions or searching for answers. I just hope you can give yourself permission to recognize that you may be searching for two different things right now: information about what happened and a way to make sense of something that feels profoundly unfair. The first may come through conversations with her medical team. The second may take more time, support, and care.
Sending you and your mom so much care as you navigate what comes next,
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.
Awkward Auntie Question No. 29
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: My current treatment may put me into menopause. How do I know if I am going through it? How will it impact my sex life (should I ever have one again)?
Answer: Menopause (or peri-menopause, the changes that occur as hormone production from the ovaries slows down or is shut down by chemotherapy, surgical removal of the ovaries, or radiation exposure) announces itself quite loudly! Common signs are hot flashes (and disturbed sleep) and dryness of the vulva and/or vagina. This means that any sexual touch or vaginal penetration hurts. There is no mistaking that! As a result, sexual desire may completely disappear (who wants to have sex if it hurts?), and relationship strain may occur. Your health care providers should be providing you with information about potential side effects and, importantly, what you can do to help yourself deal with them or a referral to a sexual medicine expert or sex therapist who can help.
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.
Awkward Auntie Question No. 27
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: Because I was 22 and worked a low-paying job at the time, and freezing eggs was not covered by my insurance, I was unable to preserve my fertility due to a lack of money. I have been hesitant to date anyone because I am unsure of my ability to have children, and I would like to be upfront with anyone I date so they can be fully informed before becoming overly attached. Is it realistic to think this way? Would a doctor be able to order tests to check my fertility without me actively trying to conceive? Is it weird to want these types of test results prior to getting into a serious relationship? My mom is usually with me at my appointments, so I have been unable to comfortably discuss this with my oncologist.
Answer: Your question is a reasonable one (and not at all weird!), and I understand your concern and need for accurate information. Yes, there are tests that can suggest your fertility status but remember that any results will be a ‘snapshot’ of your hormonal status at the time of the test(s) so may not be relevant in the future. You can also ask the nurse who works with your oncologist to make an excuse for you to speak to the oncologist alone. But…and I don’t know what your relationship is with your Mom….she may have the same questions about your fertility as you do! I am the mother of 2 young adults, and I hope they can talk to me about this kind of stuff. But everyone is different, of course. I would hope that your Mom is a source of support to you as you have gone through your cancer and would be a support to you with any fertility-related concerns.
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.
Awkward Auntie Question No. 28
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: Curious … If I am taking Temodar (oral chemo for brain cancer), can I still receive oral sex from my partner?
Answer: Oral chemotherapy medications can be present in bodily fluids, including vaginal fluids, for the entire duration of treatment and for at least 48 to 72 hours after the last dose. While the risk of harm from limited exposure is considered low, it is important to take precautions to protect partners from potential exposure to these medications. Using condoms or, in your case, a dental dam, will provide protection for your partner. The reality is that there is hardly any research into oral chemotherapy and body fluids. The advice above is what is for IV chemotherapy. What information have you received from your oncology providers? They should be advising you, and their assumption that you are not sexually active is not an excuse!
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.
Awkward Auntie Question No. 26
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: Struggling with menopausal symptoms after cancer and feel lost
Answer: Chemical menopause is generally WAY worse than a natural menopause (usually somewhere around 52 years of age). There are things that can help with the symptoms:
- Hot flashes – respond well to some antidepressants, and those can also help with anxiety. Wearing cotton clothes and layers, cotton or bamboo bedsheets, exercise, and avoiding alcohol and spicy food mah help too.
- Low libido – this is a challenging one, often tied to altered body image, pain, and emotional issues. RESPONSIVE desire (feeling desire once you are aroused) may be the norm for you now. ‘Come as You are’ by Emily Nagoski is a good book to read about this. Also, anything by Dr. Lori Brotto.
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.
Awkward Auntie Question No. 25
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: During surgical menopause, when I can’t use hormone therapy or creams, how can I keep my vagina from atrophying? How can I continue to have penetrative sex without pain if vaginal moisturizers alone aren’t working?
Answer: If your cancer is not hormone-dependent, there is no reason why you cannot use hormone replacement therapy. Even for women with hormone-dependent breast cancer, there is good evidence that local estrogen is safe. Vaginal moisturizers are for daily comfort and not for penetration. For any kind of sexual touch and penetration, you need to use a silicone-based lubricant and reapply it during sexual activity if it starts to dry up. It is also important for you and your partner to ensure that you are aroused (don’t rush!) before penetration.
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.
Ask Perrie: Looking for Clarity
Dear Perrie,
I have early-stage breast cancer. Drs give me an excellent prognosis, friends treat me like I’m already on my deathbed. They put doubts in my head about my prognosis. How do I make plans for the future, not knowing if the cancer will come back? Who should I trust? How do I live again once I am cancer-free?
Dear Looking for Clarity,
What you’re describing makes so much sense. It can feel really disorienting when your medical team is offering reassurance and hope, while the people around you are reacting with fear, grief, or worst-case scenarios. It’s hard to feel grounded in your own reality when everyone else seems to be projecting a different one onto you.
One thing I think is important to remember is that many people hear the word “cancer” and immediately associate it with death, regardless of stage, prognosis, or treatment plan. Even for me, prior to being diagnosed, I had no idea that many types of cancer can actually be curable or more like a chronic disease. Most people simply are not educated on the nuances of cancer care. Early-stage breast cancer with an excellent prognosis is very different from advanced disease, but to someone outside the cancer world, those distinctions may blur together. Their reactions may come from fear, love, helplessness, or misunderstanding, but that does not make them experts on your future.
When it comes to your prognosis and medical reality, your oncology team is the most informed source. They are the people reviewing your scans, pathology, treatment response, and the data specific to your diagnosis. They have specific education and training that our social networks often do not have. And if you still feel uncertain or anxious, I want to normalize that many YAs continue to have questions even after getting a “good” prognosis. It’s completely okay to ask more questions, request clarification, or even seek a second opinion if that would help you feel more grounded in your care. There’s no wrong way to approach this; the most important thing is that you feel informed, supported, and able to trust the plan moving forward.
I also want to acknowledge how painful it can be when friends start treating you differently after a diagnosis. I have heard so many YA’s that navigating relationships with a cancer diagnosis can feel really hard. Some people experience ghosting, and sometimes other people become overly fragile around us. Sometimes they catastrophize. Sometimes they unintentionally make us carry their fear in addition to our own. It’s exhausting and difficult to navigate when you may already be having a plethora of your own feelings!
You mentioned that your friends treat you like you’re already on your deathbed, and I wonder what specifically they’re doing that lands that way for you. Sometimes it can help to get really clear with ourselves about what feels supportive versus what feels overwhelming, intrusive, or discouraging. If people are talking to you like you’re fragile, planning “last experiences,” becoming a ‘grief tourist’, or acting like hope is unrealistic, it’s okay to push back on that. You are allowed to advocate for yourself here, and sometimes we have to advocate with our friends who honestly just may have no idea. Not that it excuses the pain that comes with this experience.
It’s completely okay to say things like: “I know you care about me, but I really need people to follow my lead and trust my medical team right now.”
Or even: “I want support, but I don’t want to feel like I’m being mourned while I’m actively living my life.”
Now for your other two questions about how to live inside of survivorship or make plans with fear of recurrence. Cancer has a way of making people feel like they need certainty before they can fully live, but the truth is, none of us is guaranteed certainty. Cancer just forces that reality into the spotlight earlier and louder than most people experience. Fear of recurrence is absolutely real, and survivorship can be emotionally complicated in ways people don’t always talk about. A lot of survivors describe feeling pressure to “go back to normal” while internally carrying a completely different relationship with uncertainty, time, and their body. Learning how to live again after cancer is rarely one big breakthrough moment. Usually, it’s something that happens slowly over time. It’s rebuilding trust in yourself, your body, your future, and your ability to hold uncertainty without letting it consume your whole life.
I wish I had a cleaner roadmap for this part, but honestly, a lot of it comes down to practice. Practice making plans anyway. Practice letting yourself imagine a future anyway. Practice tolerating uncertainty without handing it complete control over your life. And over time, most people do find that it gets easier to carry. Not because the uncertainty disappears, but because they become more confident in their ability to live alongside it. For more tips on this, check out a question I answered a while back: Got Big Questions.
I also really encourage you to stay connected to people who understand the emotional landscape of young adult cancer, specifically. YA spaces can be incredibly healing because you don’t have to explain the strange mix of hope, fear, grief, humor, and existential whiplash that can come with all of this. Therapy can help too, especially with someone who understands oncology or chronic illness experiences.
Most importantly, I want you to know this: having moments of fear does not mean your hope is misplaced. You can trust your medical team, acknowledge uncertainty, and still build a future you’re excited about. Those things are allowed to co-exist.
Sending you a hug as you navigate this next chapter,
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.
Awkward Auntie Question No. 24
Ever had a question about relationships or sex that you just can’t ask your oncology care provider? Ever felt too shy to ask a nurse or doctor a question, but really needed the answer? Now you can ask those questions and get answers from Dr. Anne Katz, the Awkward Auntie! We’re back for another round of Awkward Auntie. Read on for some more recent Q&As!
Question: I’m a year and a half post-chemo, and finally got a diagnosis of vulvar atrophy and hormone issues from chemo. It just seems to be so uncommon, especially for my age, that I couldn’t get an explanation for my symptoms. I worried now that I’ll never get to have a normal sex life. Hormonal replacement seems to have many side effects and complications with my other conditions. Are there things that can be done to help? There’s just so little information out there for my age, and nobody seems to understand.
Answer: The usual advice for a dry vulva and/or vagina is to use moisturizers for daily comfort and lubricants for sexual touch and penetration. But these are ‘band-aid’ solutions. The only thing that will really help is estrogen, either systemic or local. I don’t know what your other conditions are, so I cannot speak to that. It is really awful that no one in your oncology team has provided you with guidance or referred you to a GYN who can help. It sometimes takes a while to find hormonal treatment that works for the individual, but there are many options available! Keep advocating for yourself!
You can learn more about this great program, find the answers to past questions, and submit a question of your own by going here!
More about the Awkward Auntie program:
Dr. Anne Katz, also known as the Awkward Auntie, is a certified sexuality counselor and nurse who has written a couple of books about young adults and cancer – and all the things that happen to your body, relationships, and sex during and after treatment. She will answer any and all questions that you send to AwkwardAuntie@lacunaloft.org or submit in the form below. You don’t have to give your name or other identifying information – but it might be helpful for her to know how you identify yourself by gender, your age, and what kind of cancer and treatment you had.
YOU CAN ASK HER ANYTHING…. Don’t hold back! Your questions will be answered periodically and posted on our Awkward Auntie page.