The first 60 days: Adolescent and young adult cancers (ages 15 to 39)
People aged 15 to 39 get a different mix of cancers from children or older adults: leukaemia, lymphoma, testicular and thyroid cancer, melanoma, sarcoma and brain tumours in the younger years, then breast, cervical and bowel cancer towards 40. For decades their survival improved more slowly than anyone else's: they fell between children's and adults' hospitals and joined few trials. Below, week by week, is what OnCo's record of Adolescent and young adult cancers (ages 15 to 39) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Acute lymphoblastic leukaemia, 15 to 39, Hereditary risk.
- Medical oncologistNamed in the standard of care for: Acute lymphoblastic leukaemia, 15 to 39, Survivorship.
- Palliative and supportive care teamNamed in the standard of care for: Acute lymphoblastic leukaemia, 15 to 39, Before any gonadotoxic treatment, Psychosocial and financial, Survivorship.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Paediatric-inspired regimen with asparaginase (CALGB 10403 model) and blinatumomab consolidation for MRD-negative B-ALL (E1910); Ph-like screening at diagnosis.
Fertility preservation referral (sperm banking, oocyte or embryo cryopreservation, ovarian tissue) as a default step.
Age-specific units or teams, distress screening, education and employment support, financial navigation.
Germline testing in young-onset breast, colorectal, sarcoma and other cancers, with cascade testing of relatives.
Treatment summary and risk-based follow-up for cardiac, second-cancer, endocrine and fertility late effects over decades.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example Germline testingin young-onset cancers, Ph-like signature screening in AYA acute lymphoblastic leukaemia, Mismatch repair status in early-onset colorectal cancer, Ovarian reservebefore gonadotoxic therapy), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Adolescents 15 to 19: acute lymphoblastic leukaemia, Hodgkin lymphoma, germ cell tumours, bone sarcomas, thyroid cancer, brain tumours, Young adults 20 to 29: testicular and ovarian germ cell tumours, Hodgkin lymphoma, thyroid cancer, melanoma, leukaemia and lymphoma, Young adults 30 to 39: breast cancer, cervical cancer, early-onset colorectal cancer, thyroid cancer, melanoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Acute lymphoblastic leukaemia, 15 to 39
- For my situation (acute lymphoblastic leukaemia, 15 to 39), which of the standard options do you recommend and why?Guideline options include: Paediatric-inspired regimen with asparaginase (CALGB 10403 model) and blinatumomab consolidation for MRD-negative B-ALL (E1910); Ph-like screening at diagnosis.
- Am I a candidate for Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Vincristine, Dexamethasone or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of ECOG-ACRIN E1910 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Before any gonadotoxic treatment
- For my situation (before any gonadotoxic treatment), which of the standard options do you recommend and why?Guideline options include: Fertility preservation referral (sperm banking, oocyte or embryo cryopreservation, ovarian tissue) as a default step.
Psychosocial and financial
- For my situation (psychosocial and financial), which of the standard options do you recommend and why?Guideline options include: Age-specific units or teams, distress screening, education and employment support, financial navigation.
Survivorship
- For my situation (survivorship), which of the standard options do you recommend and why?Guideline options include: Treatment summary and risk-based follow-up for cardiac, second-cancer, endocrine and fertility late effects over decades.
- How do the results of Childhood Cancer Survivor Study (CCSS) apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Hereditary risk
- For my situation (hereditary risk), which of the standard options do you recommend and why?Guideline options include: Germline testing in young-onset breast, colorectal, sarcoma and other cancers, with cascade testing of relatives.
Any stage
- Are there clinical trials I could join, for example of Blinatumomab, ECOG-ACRIN E1910, A survivorship passport app for adolescent and young adult survivors, Default fertility preservation referral for every patient under 40 before treatment?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Trial enrolment in AYA remains far below that of children”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Fertility preservation is offered unevenly and paid for inconsistently”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Adolescent and young adult cancers (ages 15 to 39): the full pagePeople aged 15 to 39 get a different mix of cancers from children or older adults: leukaemia, lymphoma, testicular and thyroid cancer, melanoma, sarcoma and brain tumours in the younger years, then breast, cervical and bowel cancer towards 40. For decades their survival improved more slowly than anyone else's: they fell between children's and adults' hospitals and joined few trials.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Financial toxicity: The harm caused to patients by the cost of cancer care: depleted savings, debt, skipped medication and worse survival.
- Cancer during pregnancy: About 1 in 1,000 pregnancies is complicated by cancer, most often breast, cervical, lymphoma, melanoma or leukaemia.
- Adolescent and young adult (AYA) oncology: Cancer in people aged 15-39, about 90,000 US cases a year, with a distinct mix of cancers, slower survival improvement than children or older adults, and specific needs: fertility, education and work, psychosocial support and trial access.
- Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.
Every term links to the glossary.