The Deadly Logistics of Cancer

If your cancer doesn’t kill you, the office staff sure will.

When cancer patients are making appointments it’s often a life or death situation — hello cancer! — yet too often small mistakes from office staff and insurance delays put their lives needlessly at risk.

For example, when I first started chemotherapy in 2019 I already knew the types of drugs I would be given(cisplatin and etoposide), the side effects, and the scheduling of my doses. I had done hours of research on PubMed and consulted with multiple oncologists. So, when it came time for my chemo scheduling and they scheduled my second round for 28 days after my first round I flipped out.

“My rounds are 21-day cycles, it has to be exactly 21 days,” I said. I knew this because when I got the 28-day schedule I called an oncologist at Memorial Sloane (who a friend kindly set me up with) and he assured me it was a 21-day cycle for small-cell neuroendocrine. And with such poor prognosis rates, he told me to push back and not take no for an answer.

So, I called the chemo scheduler back — a process which takes on average around an hour at UCLA. There are no direct numbers, the hold times are insane and actual doctor’s offices seem to never be avail past 4:30 pm.

“We can’t do 21 days because it’s New Year’s eve,” they told me. LOLz, like cancer takes holidays. “Also, your insurance changes on January 1st, so really we need at least a week or two to get that sorted for coverage. You’re looking at mid-January.” The dates she proposed came out to a 34-day cycle. “It’s fine,” she assured me, “6 days after a 28-day cycle is close enough”.

I screamed into the phone, “IT’S NOT A 28-DAY cycle, IT’S 21!!!!!”

Essentially, she was adding two weeks to my three-week cycles, it was practically skipping a chemo round. This was bonkers to me considering the survival rate of my cancer is 7% to 10% — i.e. getting the chemo just right seemed kinda important.

The scheduler argued with me on the phone. The paper says 28. I’m telling you it’s not, it’s 21. Well, my computer says 28. Well, it’s 21!!!! She huffed and puffed and threatened to blow my house down.

The next day she said she spoke to my doctor and, yes, it’s 21. So sorry. But it didn’t solve the New Year’s Eve issue and the insurance change. I won’t bore you with the details, but I spent DAYS going back and forth between my doctor's office and my new insurance company begging someone to sort it out. After all, why can’t they authorize early? It’s cancer for God’s sake. Turns out they can, it just takes 10 phone calls, tears, and threatening lots of lawsuits.

My point is, it shouldn’t be this hard. You shouldn’t be dealing with a deadly diagnosis only to have clerical errors or lack of communication between doctors’ offices and insurance companies put your life at further risk.

***

Prior to my first PET scan, way back in October 2019, I didn’t fast beforehand. This is a “major problem”. When I arrived at 9 am for my double appointment — an MRI then a PET scan two hours later — they asked if I had been fasting. “No, why?” I asked confused.

“Oh, we can’t do your PET then.”

Again, I was livid. I had been on the phone with UCLA the day before THREE times to discuss my PET scan because insurance had not approved it and I had to “risk it” — which means you’ll agree to pay the $12,000 if insurance eventually denies it. No big deal right? It’s just your life and your financial future. Three different phone calls, not a single mention of a fast. But money? Yeah, they’re great at talking about money.

I started crying in the office. “You have to give me the PET, my surgery is scheduled for five days from now, I’ve driven two hours to get here because this location was the only thing with an opening in the next two weeks. I can’t have the surgery, without the PET.”

“It’s unfortunate,” the front office girl said. I lost it.

“It’s not ‘unfortunate’. This is life or death for me, you understand that right? I’m not leaving this building without a PET scan.”

When I asked WHY no one told me to fast they discovered it’s because the MRI was first on the schedule and it confused them, “we don’t usually schedule them back-to-back” they said. In other words, the person calling me to remind me of my appointment the day before only gave me information about the MRI — no fasting required — and forgot the PET. Luckily, my blood glucose was low enough that I was able to get my PET without fasting. Had I had naturally high blood sugar I would have been shit out of luck because an office scheduler forgot to go over the rules of my second appointment.

***

This brings me to today. For the second time in a week, my very-much needed PET/CT scan has been canceled. I won’t go into the two hours I spent on the phone on Friday or the two hours today, but long story short my doctor’s office says one thing while my insurance company says another (PS I pay nearly $1000/month for a high-end PPO and this still happens). One claims they sent the info, the other says they don’t have it. Instead of communicating with each other, I the patient, have to be the go-between. Not to mention every time I call UCLA I now sit through 3 minutes of covid vaccine info that you’re “not allowed to bypass” (which is a problem when it’s 4:45 and you desperately need to get through) so let me say this — stop calling UCLA about vaccines people, they don’t have them for you!!!! Now can we delete that intro message?

What’s interesting about this current case is I am supposed to get a PET every 90 days due to my rare and aggressive cancer (stage 3c small cell neuroendocrine). It’s been four months now since my last PET. I am trying not to stress about this because I believe I don’t have cancer anymore — so a scan this week or in two weeks won’t make a difference. But, in some other reality, or for say, some other patient with small-cell, a few weeks can make a difference. Dustin Diamond, best known for playing Screech on Saved By The Bell, was diagnosed with small-cell and died three weeks later. Bernie Sanders’ daughter-in-law was diagnosed with neuroendocrine cancer and also died a few weeks later.

For many cancer patients days and weeks matter.

This brings me to my point — these scheduling and insurance errors, whether it’s with a chemo scheduler, a nuclear medicine scheduler, or an insurance pre-authorization rubber stamper can literally cause people to die.

That may sound hyperbolic, but catching a recurrence — which occurs in 80% to 90% of small-cell neuroendocrine patients — of a highly aggressive cancer earlier than later can add years to someone’s life or be the nail in their coffin. This system we have in America is designed to kill cancer patients. Perhaps I’ve gone off the deep end, but from what I’ve seen battling this labyrinth of cancer logistics and insurance denials and lack of communication between hospitals and insurance companies I believe it’s designed to weed out the weak. It’s not a flaw, it’s a feature. I have a Yale education, I have friends who are doctors and oncologists, I was a journalist, I am 100% equipped to fight my battles and push back when I need to — but not everyone is privileged liked this.

Some people speak English as a second language, some people may not understand their chemo schedule down to the day, some people are working and can’t spend hours on the phone, some people are too weak or too sick to fight their battles and it infuriates me that there is no system to help them — and no one on the hospital side or insurance side is seemingly trying to help them. And when they get left behind, they simply get added to the statistics of people who “died of cancer”. But maybe they would have had a better shot if their treatment wasn’t constantly held up by mistakes and coverage denials. I’ve spoken to people whose treatment was pushed back by weeks and even months!

We’ve got to do better. The United States ranks 19th in the world for 5-year survival of cervical cancer, we rank 5th in the world for colorectal cancer. In 1980, there were 240 cancer deaths per 100,000 people. Now, forty years later and billions of dollars, there are 190 deaths per 100,000 people. How many of the 50 per 100,000 died because their life was on the line and treatment got delayed for logistical reasons? How many were stage two when they walked in and stage 4 by the time they were treated or scanned?

We’ll never know.

READ MORE:

• A Rare Cancer That’s Killing Young Women (And No One Knows How to Cure)
• I Don’t Fear Dying, I Fear Missing Out

For those who don’t know, I was diagnosed with Stage 3C Small Cell Neuroendocrine cancer in October 2019. There are less than 200 cases per year. There is no research, funding, or clinical trials for this cancer. If you would like to learn more please visit https://necervix.com/facts/.