Skip to content

Understanding Cancer Survival Rates

2023-06-23 · explainer · Hank · 11:50 · watch on YouTube

Topic: Health · mode: Explainer · tags: heavy topic

Prompted by his own Hodgkin lymphoma, Hank explains why cancer survival rates, including the five-year survival rate, contain less information than people think (different cancers, stages and patients differ; a patient is one data point), and argues that a person given poor odds is fully alive now and must not be treated as already dead.

What is said

The parts of the video and what is said in each (★ — how much it matters to the video).

00:00:00 — Since his diagnosis Hank sees survival rate as people's first question; content warning and a link to another video

  • ★★ Hank says that since his diagnosis he has noticed people's main concern is whether cancer kills; survival rate is a top autocomplete, but survival rates are complicated. — 00:00:00 · cancer

00:00:58 — The crude Hodgkin lymphoma death statistic and what it leaves out

  • ★★ Hank says about 9,000 people in the US get Hodgkin lymphoma each year and about 900 die of it, a crude figure of 10% killed. — 00:00:58 · Hodgkin lymphoma, United States
  • ★ Hank notes the disease is officially called Hodgkin lymphoma and used to be called Hodgkin's disease. — 00:00:58 · Hodgkin lymphoma
  • ★★★ Hank says the crude figure hides key information: deaths may come decades after diagnosis, after treatments far worse than today's. — 00:01:27 · Hodgkin lymphoma
  • ★★ Hank says Hodgkin lymphoma mostly strikes the young and the old, so it is odd he got it in middle age, and patients in their 70s or 80s have a worse prognosis. — 00:01:56 · Hodgkin lymphoma
  • ★★ Hank says that, because of the cancer and its treatment, Hodgkin lymphoma survivors are more likely to die of heart disease, lung disease and other cancers. — 00:01:56 · Hodgkin lymphoma

00:02:26 — The five-year survival rate: three reasons for it and cancersurvivalrates.com

  • ★★ Hank says the five-year survival rate is mostly a very simple statistic to help patients see quickly where they stand, though imperfect. — 00:02:26
  • ★★ Hank's first reason for the five-year rate: for some cancers surviving five years means you likely survive six, and five years is a lot of life. — 00:02:55
  • ★★ Hank's second reason: 10- to 30-year survival rates become useless because those patients were diagnosed long ago with older treatments. — 00:02:55
  • ★ Hank's third reason: the share alive at five years is clear and quickly understood, and tells people what they most want to know. — 00:03:53
  • ★★ Hank recommends cancersurvivalrates.com, which takes the kind of cancer, its stage and the patient's age and gives 1- to 10-year survival rates. — 00:03:53
  • ★★ Hank says Hodgkin lymphoma patients alive five years later are very likely never to relapse and will probably die at a fairly normal age of something else. — 00:04:22 · Hodgkin lymphoma

00:04:52 — Different cancers are different diseases, so shared statistics say little

  • ★★ Hank says people with chronic lymphocytic leukemia are just as likely to be alive at five years but very unlikely to be rid of the disease. — 00:04:52
  • ★★★ Hank argues different cancers are completely different diseases, so statistics defined consistently across cancers contain less information than we imagine. — 00:04:52 · cancer

00:05:41 — What patients learn: stage, grade, Hank's stage 2A, disease-free and progression-free survival

  • ★★ Hank says people watching because an acquaintance or celebrity has cancer will not know much, while patients and caregivers will get much more information. — 00:05:41
  • ★★ Hank explains that a cancer's stage almost defines a different disease, with different treatment and prognosis, and its grade is how aggressively it acts. — 00:06:10
  • ★★★ Hank says his Hodgkin lymphoma is stage 2A with no bulky disease (no X), which is great. — 00:06:50 · Hodgkin lymphoma
  • ★★ Hank says the survival rate is only one piece of a prognosis, alongside treatment, response to it, living through it and the support needed. — 00:06:50
  • ★★ Hank explains disease-free survival: alive with no signs of cancer, which does not rule out relapse but is a good sign. — 00:07:19
  • ★★ Hank explains progression-free survival: the person is alive and the cancer has stopped spreading. — 00:07:48
  • ★★ Hank says some cancers, especially in older people, are now treated as chronic diseases because curative treatment would cost too much quality of life or risk death. — 00:07:48 · cancer

00:08:17 — A patient is one data point; talking to oncologists and getting second opinions

  • ★★★ Hank says that with, say, a 50% chance of not living five years, a patient ends up on one side or the other: one data point, not a population study. — 00:08:17

    “You're one data point. You're not a population study.”

  • ★★ Hank says big studies adjust well only for age and stage; patients and their people know the real risk factors better, such as sticking to chemo and self-advocacy. — 00:08:17

  • ★★ Hank says a prognosis conversation with an oncologist, someone who has seen many similar journeys, gives far more detail than a statistic. — 00:09:07
  • ★★ Hank advises patients who feel their doctor is not a good resource to raise it, saying every doctor should be fine with a second opinion. — 00:09:36
  • ★★ Hank says he talked to several oncologists and found them very different; which one he vibed with was about his needs, not their quality. — 00:09:36

00:10:06 — Ann Russell's point that a person with poor odds is fully alive now; Hank's own odds and thanks to researchers

  • ★★ Hank says some patients want a no-nonsense doctor and others one who shares their pain, and it is fine to want either. — 00:10:06

  • ★★★ Ann Russell (quoted): Hank shares TikTok creator Ann Russell's point, made during her own cancer diagnosis, that someone with an 85% chance of dying within five years is 100% alive now. — 00:10:06 · TikTok

    “a person who has an 85% chance of dying in the next five years is 100% alive now.”

  • ★★★ Hank says our lives are valuable not because we are guaranteed to be here later but because we are here now. — 00:10:06

  • ★★★ Hank concludes survival statistics are useful but less than we would like, first because they contain less information than they seem to. — 00:10:49
  • ★★★ Hank worries people who see a stat that someone may not live five years will treat them as already dead, which he calls very bad. — 00:10:49
  • ★★★ Hank says a person of his age with his stage of Hodgkin lymphoma has about a 94% five-year survival rate and about a 90% chance of five-year disease-free survival. — 00:10:49 · Hodgkin lymphoma
  • ★★ Hank says the numbers are high partly because Hodgkin cells are bad at repairing themselves and die when treated. — 00:11:18 · Hodgkin lymphoma
  • ★★★ Hank credits decades of work by researchers and patients, to whom he is forever in debt, for making today the best time in human history to get cancer. — 00:11:18 · cancer

In the description and comments

  • ★★ Hank writes that cancer, though spoken of as one thing, is hundreds of diseases: not a disease but a way for disease to happen. — video description · cancer
  • ★★ Hank writes that his Hodgkin lymphoma has not so far become stubborn, but he is very aware that it could. — video description · Hodgkin lymphoma

Threads in this video

Where the stories that moved here went next

Mentioned

Central: cancer · five-year survival rate · Hodgkin lymphoma · statistics

Also: People: Ann Russell

Organizations: cancersurvivalrates.com · TikTok

Concepts: cancer staging · Chronic condition · chronic lymphocytic leukemia · disease-free survival · Electric car · progression-free survival

Places: United States

Products: Google Autocomplete

Also centred on statistics: On Condom Failure

← Previous: Reflections from a Terrible CEO · Next → Alone on the Cancer Boat: A Vlogbrothers Reunion