A Tale of Two Cancers

In which John discusses how Hodgkin Lymphoma can be a very different disease for different people. As you can probably tell from this video, I'm a big fan of my little brother.

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[oops]

From the title, I got very afraid John was about to announce he had cancer.

[davycodington]

After reading the title of this video (post Hank’s almost-recovery videos), I was bracing myself for the news that John had cancer. Thank you for not having cancer, John.

[alleycaaat]

93% treated vs 6% untreated, then John starts in on a story about young Mondeh, and I was trying to prepare myself for the worst. Thank you for sharing his story with us, I'm so, so glad he was able to get the care he needed and is in remission.

[Ennello]

Something I've learned in medical school over the years is "lead time bias", and this is an important concept. It links the time of detection to survival rate. We're under the impression that certain types of cancer with low survival rates are just highly aggressive, while in truth the reason is often that we just diagnose them too late. Certain tumors can't go a few months without being detected, like Hodgkin lymphomas, while other tumors remain hidden for more than half a year, like pancreatic tumors. And in the latter case of course, survival time and the chances of adequate treatment are low. Often times the key to treating disease doesn't lie in the cure itself, but specialized, timely detection methods and patient education.

[Deeply_Unhinged_Goblin]

I am all here for John's multi-month art project wherein he painstakingly proves to us that every imaginable subject is related to tuberculosis.

[kristinisreading]

My niece was diagnosed with cancer ate age two. She had multiple complicated and not easy to treat diagnoses. In the fourteen months she was sick, she had three cancer diagnoses - two leukemia, one rare lymphoma. I don’t believe in transactional prayer, “I want this to happen.” If I did I would want all children to not have cancer, all people to not have cancer. If it’s transactional, the sky is the limit. Instead, I prayed, knowing she would die anyway, for better education to train researchers, more support for medical staff, because someday we will get better at treatment. Action is ultimately the only thing that counts. I decided today that after supporting PIH in various 1-time ways, I would set up a monthly donation. Action is what matters.

[evelmichael]

I think it's important to note that even in the United States outcomes can be vastly different. Even with hospitals that have the equipment, insurance can block access. I'm quite sure I have a torn rotator cuff but because I'm on Medicaid and it takes significant effort to get them to pay for the imaging required to diagnose I just have to live with the pain with no treatment. This is just one and a relatively minor example. I know people with way worse conditions that can't get treatment because they don't have access to the right tests.

[paigeryan]

I’m glad there was a happy ending for Mondeh, but it’s terrible that it was such a long road to get there. And terrible to think about all the people who haven’t been able to get treatment. I’m glad we are working with PIH to choose a better world.

[aprilstarchild]

My mom had endometrial cancer in 2010. When she called to tell me, she pointed out, "It's the big scary C word, but if I was going to get cancer, I was lucky to get this one." In the USA most cases, like my mom's, are caught in stage 1a, because the most common symptom is when post-menopausal people start bleeding like a period. The five-year survival rate is something like 95%. She got a hysterectomy and some very short-term radiation and has been in remission ever since.
But for a long, long time, people didn't talk about menopause and menstruation much, and so people didn't go to the doctor or talk about what was happening, and they died instead. (And obviously, they still do in places where there's a strong taboo, or where there's not good medical access.)
In any case: if you know someone who is past menopause, and they get a "random period" out of nowhere: GET THEM TO A DOCTOR. Unexplained post-menopausal bleeding is sometimes just assumed to be endometrial cancer until proven otherwise. And it's often the *only* symptom.

[juliejanesmith]

John just largely described my challenges in getting care for my rare disease IN THE US. After 14 years of fighting I have accepted that I can no longer afford to travel all over the country for care. (I live in a major metropolitan area so this shouldn’t be the case). I can also no longer afford the crushing emotional effect of the long wait, the expensive travel, all for 15 minutes with a much-hyped doctor who who actually doesn’t give a F, doesn’t listen and doesn’t take me seriously. It’s so, SO soul crushing. I have accepted that at 39 I have experienced everything significant in my life that I ever will. I have accepted that I will be dead, entirely unnecessarily, by the time I am 50 because of these things. Having a rare disease as an adult, that virtually never effects children, is living in the land of “not cost effective”, even in wealthy countries. I have accepted all of this, but that doesn’t mean it isn’t equal parts infuriating and depressing. Knowing you are a whole human being that the society around you has simply dubbed “not worth it”- even doctors.

[zekenelsons]

John, thank you for this video. It's really important that people know that even though Hodgkin's is a (relatively) low-risk cancer, access to care makes a world of difference. My brother was diagnosed with Hodgkin's Lymphoma when I was in middle school (2004-ish), and my family was poor and couldn't afford to get him the kind of care that he needed. Over the course of around a year and a half, I had to watch him wither away to nothing and lose all of his faculties until he finally died at home towards the beginning of 2006. Even here in the good ol' US of A, lack of access to care can make a treatable disease fatal. I sincerely hope one day we can achieve universal public healthcare here in the US so these tragically preventable deaths don't continue.

Mikey, you were the coolest of all of us and I wish I could have known you longer and better. If there's an afterlife, I hope I see you there.

[nathaliestav]

It is so sad to see the difference in how people get access to healthcare. If I was less lucky, I would be dead by now (cystic fibrosis).

[coolstertothecore]

I can just about begin to imagine how those people and families feel - knowing there are treatments but not having them available. I was diagnosed with cancer in the UK in May and due to the NHS being underfunded, all of my treatment has been about 3 times longer to start than what the NICE guidelines recommend. It made me so angry and frustrated, even knowing that I would definitely get the treatment and have brilliant doctors and nurses eventually. To be in a position where it just wasn't available is just heartbreaking and even with the delays I recognised how lucky I was to live where I live and have the %s I have. I really hope we (as a world) can reach a much better point very soon.

I watched Hank go through chemo whilst I was having surgery and now I'm experiencing the joys of EVERY SIDE EFFECT POSSIBLE. It's almost impressive that a drug can make your nose bleed, give you joint pain, trigger an early menopause, make your hair fall out, give you acne, make you feel sick...I shudder to think what the first chemo treatment was like!

[rambysophistry]

As long as medical care is not considered a fundamental basic human right, something to which all humans are entitled, there will be people who could otherwise have lived who will necessarily not; not because the disease is untreatable but because our societies are so backwards that proper treatment of all cases isn't possible.

[thatkippy]

Thanks for this. I'm a cancer survivor and honestly feel like a sham when I say so. It was caught extremely early and was an "easy" cancer to have as well. But there's so much to be said about the medical care I have access to to show for the smoothness of my treatment. I was fortunate and I wish everyone else was as well.

[Annie-vccf]

My cousin passed away last year at the age of 32 from leukymia. I think when Hank first let us know what was going on with him I was still working through my cousins death, and in particular the dear Hank and John made me really cry. But somehow in the last 6 months, both Hank and I have done a lot of healing. Thank you both for bringing me along on this journey and helping me mourn.

[laurenstockam]

Stories like this remind me why I donate to PIH. Thanks for sharing. So glad Hank and Mondeh were able to reach remission.

[kimberlybwalker]

Disease does not treat people equally unless society treats people equally.
John Green

[mikekeenan]

How well said, John. It is a shame that not everyone who needs specific treatments to survive, can get it and it is also heartless how some can look down on the homeless as non humans, people to be avoided and swept aside.
I love how you say, in your description, beneath your video "I'm a big fan of my little brother." I was and still am a big fan of my big brother who died from myastenia gravis 2 years ago, this past May 24th. We need more caring people, such as yourself and Hank. Thank you for the videos.

[DanielledeVreede]

It's fascinating that sadness and hope can be so close to each other. Yet you somehow always leave us looking at the hope