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A Tale of Two Cancers

2023-10-24 · letter vlog · John · 4:21 · watch on YouTube

Topic: Global development (also: Personal life) · mode: Personal essay · tags: heavy topic

Replying to Hank's video on cancer as many diseases, John recalls Hank's Hodgkin lymphoma diagnosis and contrasts it with Mondeh, a Sierra Leonean child whose Hodgkin lymphoma took years to diagnose and treat, arguing that the same cancer is not the same cancer when the standard of care differs.

What is said

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

00:00:00 — Hank's video on cancer as a category; the week before Hank learned he had Hodgkin lymphoma

  • ★★ John agrees with Hank's point that cancer is not really a disease but a category of diseases. — 00:00:08 · cancer, Hank Green
  • ★★ John recalls that for about a week they knew Hank had some cancer but not which one: another lymphoma, or a metastatic cancer spread to his lymph nodes. — 00:00:13 · Hank Green, cancer
  • ★★ John says finally learning it was Hodgkin lymphoma was a tremendous encouragement, the best of the bad news they could have gotten. — 00:00:24 · Hank Green, Hodgkin lymphoma

00:00:29 — Hank's call: 93% survival with treatment, 6% without; inequitable access to cancer care

  • ★★★ John recalls that when Hank called with the diagnosis, one of the first things he said was that five-year survival is 93% with treatment and about 6% without. — 00:00:33 · Hank Green, Hodgkin lymphoma
  • ★★ John says Hank was already thinking of the people who can't get access to treatment, which turns out to be a lot of people. — 00:00:45 · Hank Green
  • ★★★ John says access to cancer care is inequitable everywhere, but most people who get cancer live in low and middle income countries, where appropriate care can be very hard to access. — 00:00:50 · health equity, cancer

00:00:58 — Mondeh's Hodgkin lymphoma in Sierra Leone: misdiagnosis as TB, no imaging, PIH diagnosis, treatment in Freetown and Rwanda

  • ★★ John says that in Sierra Leone, a relatively small country, over 200 people get Hodgkin lymphoma every year. — 00:00:58 · Sierra Leone, Hodgkin lymphoma
  • ★★★ John tells of Mondeh, a child in Sierra Leone's rural Kono district, whose parents noticed a lump on his neck at about six, when he also became much more lethargic. — 00:01:05 · Sierra Leone
  • ★★ John says Mondeh was at first misdiagnosed with tuberculosis, as often happens, because his clinics lacked the fast, accurate GeneXpert tests and diagnosed TB by symptoms; TB treatment did not work. — 00:01:17 · tuberculosis
  • ★★ John says there was no imaging capacity (no MRI machines, no CT scanners, in 2015 not even x-ray machines), so Mondeh could not get a diagnosis and the lump kept growing. — 00:01:35
  • ★★ John says the lump grew until Mondeh struggled to swallow and lost weight, over four years; at 10 he saw a Partners In Health doctor who suspected lymphoma, and a biopsy in the capital confirmed Hodgkin lymphoma. — 00:01:58 · Partners In Health, Hodgkin lymphoma
  • ★★ John says pill-based chemotherapy in Freetown shrank Mondeh's tumor, but remission needed IV chemotherapy, which meant traveling thousands of miles to Rwanda's Butaro cancer hospital. — 00:02:14 · chemotherapy

00:02:26 — What had to go right for Mondeh; cost-effectiveness; progress in Sierra Leone; the same cancer is not the same cancer

  • ★★ John says Mondeh, like Hank, is now in remission and is a great young artist; visiting him in 2019, John saw his sketch of Mohamed Salah, John's favorite football player. — 00:02:28
  • ★★★ John says much had to go right for Mondeh to survive: a correct diagnosis, though early diagnosis, often called vital in cancer care, is basically impossible in such circumstances. — 00:02:38 · cancer
  • ★★ John says accessing treatment meant paying for it plus months in a hotel in the capital and transport to hospital, and even then Mondeh had to travel thousands of miles to a cancer center. — 00:02:52
  • ★★ John says all of this would have been impossible for Mondeh's family to afford without support from Partners In Health. — 00:03:15 · Partners In Health
  • ★★★ Against the common claim that cancer care in poor countries isn't cost-effective, John says nobody questioned whether Hank's care was cost-effective, because of who he is and where he lives. — 00:03:24 · Hank Green
  • ★★★ John says Hodgkin lymphoma is actually relatively inexpensive to treat, provided the systems for appropriate diagnostics and treatment are in place. — 00:03:31 · Hodgkin lymphoma
  • ★★ John says since Mondeh was treated such systems are starting to appear in Sierra Leone, with better imaging machines and better access to chemotherapy, but only starting. — 00:03:38 · Sierra Leone, chemotherapy
  • ★★ John says Sierra Leone will soon, hopefully, have its first radiotherapy available for cancer patients. (hedged) — 00:03:45 · Sierra Leone
  • ★★★ John says the devastating truth is that most people with Hodgkin lymphoma in a country like Sierra Leone will die even though they could have lived. — 00:03:53 · Hodgkin lymphoma, Sierra Leone
  • ★★★ John says Hank made clear in that first call that the same cancer in two people in different circumstances is not really the same cancer: different standards of care mean different outcomes. — 00:04:00 · Hank Green, health equity, cancer

In the description and comments

Threads in this video

Where the stories that moved here went next

Mentioned

Central: cancer · health equity · Hodgkin lymphoma · Monde Mansouray · Sierra Leone

Also: People: Mohamed Salah

Organizations: Butaro Cancer Center

Concepts: categorization · chemotherapy · cost-benefit analysis · CT scan · five-year survival rate · lymphoma · magnetic resonance imaging · metastasis · middle-income country · Radiation therapy · remission · tuberculosis · X-ray

Places: Freetown · Kono District · Rwanda

Products: GeneXpert

Only in the description or credits: Partners In Health

Replies to

  • continues · My 'Injury' — “So your video last week about your life with Hodgkin lymphoma reminded me of when you were first diagnosed.”

Later videos replying to this one

  • 2023-11-10 · My Final Chemo Secret (Hank) — continues — “John, a couple of weeks ago, you made a video about a kid in Sierra Leone” (00:02:24)

Part of an exchange of 5 videos, 2023-10-20 – 2023-11-17.