Living With Cancer: What Your Records Can Do for Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 6 November 2026.

A cancer diagnosis produces a great many records in a short time: biopsies and pathology reports, scans, genetic tests, treatment plans, letters from every specialist. Research on cancer depends on exactly these records, linked to what happened next. And the people who know best how a treatment felt, what side effects it brought and what helped them through it are the patients themselves.

How many people are living with cancer

The International Agency for Research on Cancer's GLOBOCAN 2024 world fact sheet counts the people alive within five years of a diagnosis, cancer by cancer. Here are the cancers in the CureCircle register, with what a complete story and a year of the records each guideline lists is worth on the benchmark today:

Thyroid cancer is counted differently: a Global Burden of Disease study puts the people living with it at about 2 million worldwide in 2021 ( thyroid cancer page, $296 per licence).

The values differ because the records differ: a cancer whose guideline calls for a genetic test, pathology and repeated scans links more kinds of data than one followed mainly by blood tests, and linked data is worth more. Some cancers also count as rare by the EU's definition of five in 10,000 people, which raises their value further.

The records that matter most

Every cancer's guideline is different, but the same kinds of record come up again and again, and they are the ones research values most:

• Pathology reports, the description of the tumour from a biopsy or surgery: for example the sentinel lymph node biopsy that stages breast cancer, or the risk category assigned to every newly diagnosed prostate cancer.
• Genetic test results, such as the BRCA1 and BRCA2 test offered to women under 50 with triple-negative breast cancer. Records combined with genomic data are valued at many times a health record alone.
• Scan reports from staging and follow-up.
• Treatment history: the chemotherapy, radiotherapy, surgery or targeted drugs, in order, with dates.
• Follow-up results, such as tumour markers and surveillance scans over years.

What these records do not hold is your experience of them: side effects, what helped you cope, how long recovery took, what you would tell someone just diagnosed. That is the part only you can add.

What patients are paid for their experience

Research that asks patients directly about their cancer pays for their time. A listing of current Rare Patient Voice studies shows $120 for a 60-minute phone interview with people with metastatic breast cancer and $60 for a 30-minute interview with prostate cancer patients, and the CLL Society advertised $400 for a 90-minute research interview plus a short journal for people with chronic lymphocytic leukaemia. Every example we have found is on what patients have been paid, and the rates are explained in our guide to patient research pay.

Sharing safely

Cancer records are detailed, so it is worth being clear about what leaves your hands. On CureCircle, the research record is de-identified: no names of people, doctors or hospitals, no place finer than a country, no exact dates. Uploaded documents are read into your own medical file and the files themselves are not kept. You read the summary before anything is shared, consent story by story and can withdraw at any time. How de-identification works, and what it cannot promise.

If someone you care for has or had cancer, you can share their story for them, as their parent or guardian or with their permission. Families can hold the most complete record of what happened.

How to share it

You start by writing what you live with, or lived through, in your own words. A few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you had. You can add pathology reports, letters and scan reports as PDFs or photos; if you do not have them, ask your hospital for a copy.

What you went through can help research learn what works for the next person diagnosed. Start your story, or find your cancer in the conditions list.