OnCo

Sign in to keep your watchlist

Your watched pages live in this browser. Sign in with an email link and OnCo keeps the same list on every device you use. Only your email address and your watchlist are stored.

Living with cancer· Appointment prep

Appointment sheet: Adolescent and young adult cancers (ages 15 to 39)

One page to bring and write on: your details, the questions for Adolescent and young adult cancers (ages 15 to 39) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Adolescent and young adult cancers (ages 15 to 39)

Prepared with OnCo (onco.cc/prep/aya-cancers/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

17 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Acute lymphoblastic leukaemia, 15 to 39
  1. 5.For my situation (acute lymphoblastic leukaemia, 15 to 39), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Vincristine, Dexamethasone or related drugs, and what side effects should I expect?
  3. 7.How do the results of ECOG-ACRIN E1910 apply to someone like me?
Before any gonadotoxic treatment
  1. 8.For my situation (before any gonadotoxic treatment), which of the standard options do you recommend and why?
Psychosocial and financial
  1. 9.For my situation (psychosocial and financial), which of the standard options do you recommend and why?
Survivorship
  1. 10.For my situation (survivorship), which of the standard options do you recommend and why?
  2. 11.How do the results of Childhood Cancer Survivor Study (CCSS) apply to someone like me?
Hereditary risk
  1. 12.For my situation (hereditary risk), which of the standard options do you recommend and why?
Any stage
  1. 13.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?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Trial enrolment in AYA remains far below that of children”. How does that affect my plan?
  5. 17.I read that “Fertility preservation is offered unevenly and paid for inconsistently”. How does that affect my plan?

The words I may hear

  • 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.

Tests and results to bring

Biomarker results to ask for: Germline testing (BRCA1/2, Lynch syndrome, TP53) in young-onset cancers, Ph-like signature screening in AYA acute lymphoblastic leukaemia, Mismatch repair status in early-onset colorectal cancer, Ovarian reserve (anti-Mullerian hormone) before gonadotoxic therapy.

Scans and tests linked to this cancer: Germline (hereditary) testing, NGS-based MRD (clonoSEQ and molecular MRD).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call