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Tag: The Cancer Channel

Matthew’s health care tidbits: My retina & what it tells us about primary care

Each time I send out the THCB Reader, our newsletter that summarizes the best of THCB (Sign up here!) I include a brief tidbits section. Then I had the brainwave to add them to the blog. They’re short and usually not too sweet! –Matthew Holt

I had a little scare the other night. I was driving home from a weekend in the mountains and I asked my wife if she saw that flashing light. No it wasn’t the cops, and no she hadn’t seen it. Turns out that I had a bright flash if I moved my eye a certain way. Oh, well I assumed I was tired and a good night’s sleep would fix it.

Next morning the flash was still there when I looked quickly to the left and a few weird floaters had appeared. I headed to the Mayo Clinic website and it looked to me like I had a detaching retina. I got on the urgent visit video with One Medical. The NP who answered said it sounded like I might have retina problems and I should get it checked by my ophthalmologist. But my eyesight has always been great (other than me needing reading glasses in my old age) and I haven’t got one. So who, I asked, do you recommend?

Here we fall into the crux of the problem. One Medical is an excellent primary care service. So good that Amazon bought it for $3bn. But it’s not a multi-specialty group nor is it a system like Kaiser. The answer was, “we don’t really recommend anyone–that’s not how it works.” The NP ended up looking up ophthalmologists near me & sent me a name as a referral in their app. But that’s not a link to anything and it wasn’t one chosen through some analytical process of seeking quality excellence.

I looked up MarinHealth (my local hospital)’s website and searched ophthalmology. That referred name was on it. I called. The doctor was out this week. They gave me another name. That doctor’s office gave me another name and that third office could see me that same day. I felt some pressure to see them right away as in the case of a detached retina Mayo says “ Contacting an eye specialist (ophthalmologist) right away can help save your vision”. The good news is having spent a couple of hours at the ophthalmologist’s my retina needs watchful waiting not surgery.

But the bad news is that for me, like 90% of Americans, there’s no easy way to get referred into a trustworthy system for specialty care. This can be even worse. My friend Sarah McDonald explains in her book The Cancer Channel how, after being diagnosed with a rare incurable cancer by a head & neck surgeon, the all encompassing support she received was to be given the number of a specialist at UCSF who couldn’t even talk to her for 3 weeks.

Mike Magee talks about the role of the health care system being to reduce patients’ “fear and worry”. Our lack of a specialty care referral system, especially when potentially serious and urgent care is on the line, is a big reason why there is so much fear and worry. I wish I had a concierge advocacy system like Included Health or Transcarent which could get me to the right place and work with me through the experience. But like most Americans at the time I need reassurance the most I’m calling a list of phone numbers hoping someone can see me.

We have primary care, we have specialty care. But we don’t have a system that cares.

Interview: Sarah MacDonald, Author, The Cancer Channel

by MATTHEW HOLT

I met Sarah MacDonald in the early 2000s. She is the ultimate extrovert who sings, cooks, maintains a huge circle of friends, and lives life to the fullest–all at a pace & level most of us can’t imagine. In the early 2010s Sarah was flying high. Newly married, trying to get pregnant, all while being a Silicon valley business exec who had increasingly senior roles at eBay. Then in 2012 she was diagnosed with two completely separate types of cancer. And in her head “The Cancer Channel” started playing nonstop.

That became the title of her book. I just read it and I literally couldn’t stop. It’s practical, it’s heart-wrenching, it’s warm, it’s funny (yes, funny!). And it’s an amazing look at the exact experience of someone going through cancer. Or in this case cancer x 2. I was lucky enough to interview Sarah (so there is a very happy ending). So please watch this and buy & read the book

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