This is the first in a series of articles I’ll be sharing following my personal experience navigating a serious illness in the U.S. Anyone who’s tried to figure out whether their long-time doctor is covered by their new employer health plan knows the healthcare system is broken. But, as someone who has recently received a cancer diagnosis, I’m finding it’s so much worse than I knew. Though these experiences have led to tears, anger, sadness, fear, and anxiety in my life, it’s my hope that by sharing my experience, someone else’s life can be made a little better. My other goal is to help shine a light on the differences in women’s healthcare.

If you’re here for legal tech snark, skip ahead to my usual corner of the internet. But if you want a front-row seat to what healthcare really looks like in America, keep reading.

Right before Thanksgiving, I went in for my annual mammogram at Emory University Hospital in Midtown Atlanta, the top ranked hospital system in the state. For anyone who doesn’t know, a mammogram is a screening test designed to diagnose breast cancer.

It’s a barbaric exam that requires a technician to stretch out your breast and smash it between two plates with an average of 20 pounds (literally) of pressure per square inch. The good news? If you have certain types of dense tissue in your breasts, which is common in women, a mammogram is completely ineffective.

(Is it any wonder women commonly skip these life saving exams? I digress.)

Getting the Letter: A Simple Screening Turns Into Something More

If anything is found on your mammogram, or if the x-ray isn’t clear, you get to do some more tests. This was my experience when I received a letter a few weeks later asking me to come in for another, different mammogram. I had no idea what to expect, but assumed it would be about the same experience – sucky, but tolerable.

This is where my breast cancer diagnosis at Emory turned into one of the most horrifying experiences of my life.

I returned to Emory after the holidays to do the follow up screening. Of course, I know that they’re considering a cancer diagnosis and I’m reasonably worried and anxious. And I guess I thought that there would be dignity and care in the process when dealing with such a potential serious diagnosis.

BREAST IMAGING: The Walk of Shame

I arrive at the Imaging area where people wait for all types of x-rays – broken legs, chest x-rays, etc. It’s a huge room with maybe 200 chairs filled with men, women, and children of all ages. The good news is that they carved out an area for women, allowing some privacy and dignity. Or so I thought.

I’m anxious as possible as I enter, and I immediately notice that the women’s section is in the far back section of the main waiting room, forcing me to walk past everyone else to a sign that says BREAST IMAGING in large letters. While this might seem like helpful signage, I’m not excited about:

• Having random people think about my breasts in public. I’ve spent plenty of life trying to get people to not look at those parts of my body leeringly.
• That everyone here now knows I might have breast cancer.

That may sound petty, but have you ever seen a sign that says PENIS IMAGING for men? It felt humiliating and embarrassing being reduced to a breast. But this isn’t the end of the ‘help’ you get when awaiting a serious diagnosis at Emory.

You might think it would be helpful to have my husband or some support while I go through this process. Alas, one of the standards of care at Emory is that you cannot have your husband with you – no men are allowed. That’s right – my husband cannot wait with me in the waiting room — the breast waiting room is only for women.

You might think this is probably meant to make women feel more comfortable when they’re in a vulnerable state of high stress. But this women only waiting room is a big open room with perhaps 50 seats accented with pink ribbons and “We Care” signs. But it’s otherwise exactly the same as the general purpose waiting room in look and feel. There’s nothing special here. So this room must be designed to help women maintain their privacy and dignity, right?

Naked in a Waiting Room: So Much for Privacy

I get called to the front desk by a woman who spends most of her time texting on her phone. She gives me a hospital bracelet so I can be identified. Then she points to a metal closet and tells me to get a robe and take my clothes off above the waist.

The changing rooms are right in the waiting room where everyone can see, sort of like the fitting room of a discount clothing retailer. I’m thinking I must go straight back to the test room from here. I’ve never taken my clothes off in a public waiting room with 30 people in it before.

But no.

She tells me to carry my purse and undergarments through the changing room and put it in a locker, also in the waiting room. And then she tells me to take a seat. In the huge waiting room.

This feels crazy. I look around. There is no one else in a robe in this waiting room. Zero. Just me.

Lest you think this isn’t a big deal, I’d ask you to go sit in a bathing suit and robe in a place where everyone else is fully dressed. You feel awkward.

Are male patients awaiting screenings for testicular cancer asked to sit naked from the waist down in a waiting room with fully dressed people? Or is that just because “We Care,” I wonder?

Maybe this means I’m high priority and will go back quickly?

No. I sit mostly naked and cold in the waiting room for more than 30 minutes. Alone. By the time they call me back, I’m shivering from a combination of cold temperatures and massive anxiety.

Finally, I go back and go through the advanced breast mammogram. It was more transactional experience than ordering a McDonald’s kiosk. They then take me to what is essentially a semi-lit closet with four chairs and tell me to wait. And I wait, And wait, and wait. For what? Who knows. No one has told me anything and there’s no staff in this weird closet.

I sit alone watching reruns of HGTV on a tiny TV, with lots of pink ribbons and We Care signs. After nearly an hour, stull freezing cold and half naked, they come get me for an ultrasound.

Some folks came in to look at the ultrasound result and tell me that they see something and need to do a biopsy. We get that scheduled for a couple days later.

I go back in and get to do the same thing again. BREAST sign. No support system. Get naked. Sit naked in public. They tell me 3-5 days for the results and they’ll call. But the results may show up in their health portal, MyChart, first. The biopsy was on Wednesday, February 5.

Diagnosed by Software, Ghosted by Staff

In the late afternoon of Feb 11th, the radiology report shows up indicating I have breast cancer. Of course, those aren’t written for a layperson, so it doesn’t tell me much more than I have cancer.

By the afternoon of the 12th, I’d still not heard from any humans.

I assume they’re going to direct me to the appropriate next steps. After all, I’ve never had cancer before.

Trying to Find a Human (Good Luck with That)

I finally call the “Patient Care Coordinator” hotline included on the materials I was provided post biopsy. I expected a caring human, but instead found a complex maze of options. I spent an hour trying every option to get to a human. I was transferred, talking to medical records, scheduling, everyone I could find. None of them knew what a Patient Care Coordinator was and none of them could direct me to any human being or department to get me help. Not even to a voicemail system. They advised me that the doctor who ordered the test should call.

That would be my general practitioner, but this was a routine screening, not a problem we’d identified and discussed. She orders all the annual tests at the same time. I’d not seen her since our annual checkup 6 months ago. So I tried calling their office. But they don’t appear to be aware of the diagnosis even though she is affiliated with Emory.

Finally, I get a call from a radiologist or something other than a cancer doctor. She basically reads me what’s on the report. ‘You have breast cancer.’ And then asks me if I have any questions.

Is this who I ask how serious it is? Am I going to die?  How urgently do I need to get treatment? Is there anything I shouldn’t be doing at this point? What’s next?

I assume they’re going to direct me to the appropriate next steps. After all, I’ve never had cancer before. And Emory has a huge cancer wing called Winship. Surely, they have a protocol to get me to the right people fast. And, there’s financial motivation for hospitals to treat patients with serious illnesses in the U.S.. Cancer treatment easily costs between $50,000 – $100,000 (I’ll share some real invoices in a future post).

Still Waiting, Still Unsure

She advises they will order an MRI that someone will call me to schedule. She asks if there’s anything else and I ask what to do next. She seems surprised and says, ‘Do you want a referral?’ Of course, I do – I have never been diagnosed with cancer.

A nurse calls with a referral, to a surgeon at Winship. It seems like I’m on the right path. But it just continues to fall apart from there. The woman who conducted intake and scheduling proceeded to crack on hilariously the whole time she was helping schedule. She’s joking about 2nd opinions and all sorts of things that show little care for the fact that I just got diagnosed with breast cancer.

She proceeds to tell me that the doctor can see me in about 4 weeks.

Is that an okay amount of time to wait?

Should I be doing something else in the meantime?

Since I don’t have any information whatsoever, I don’t know if I should drop everything and find someone else or if this is normal. But this woman is clearly not a person who is going to help me.

In fact, it’s now clear to me that no one will.

Just the Beginning

And this is only Chapter 1 in the saga.

One final note. I sent a version of this in an email to the Patient Care department as well as to each and every member of leadership at Emory Hospital. I have not received a response,  even after following up.

(Wondering why the word ‘breast‘ appears in bold everywhere it’s mentioned? To draw attention to how awkward it is to have to follow signs and directions labeled for a piece of the body and not the human you are)

In case you’ve never seen what happens in a mammogram, here’s an image for reference.