TLDR
This is the entry that talks about my diagnosis or lack thereof. If you are good with the generalization of Not Quite Cancer Yet TM then you can skip this one and wait for juicier and far more exciting topics. This one is for the folks that need all the details and I daresay all my science-y, medical folks will be chagrinned at my explanations.
Can I violate my own HiPAA? HOT!
In April 2018, I go to get a mammogram. I am pretty on top of my breast health. (My mom had a Very Small Bit O’ Breast Cancer that could have been worse except mammograms are awesome at finding stuff and so they got it out and did some radiation and omg good as new.) I really like my boobs. This was a screening mammogram. (Pay attention to the clues, they will be important later.) I went home after and got a call a couple of days later. They asked if I had any previous films they could look at. WHY SURE! I had, in fact, gotten a mammogram at Cedars in LA a couple of years before. I called them up, signed a bunch of stuff, and they sent CDs (the height of technology and security) to the pals at Northwestern. I don’t hear anything. I thought nothing of it. They hadn’t seemed concerned on the phone, I figure they got their pictures and were cool.
They were not cool. I show up a year later, in April 2019 almost to the day. I get through the mammogram portion of my appointment and am told to wait in a room for the Radiologist. Well, that can’t be good, right? Two people, come in and give me a very stern look. “Why didn’t you come back for the extra pictures we wanted last year?” they screeched. (I’m sure they were completely calm, but it’s my story, so whatever.) What do you mean MORE PICTURES???!!! They said they saw some calcifications in my left breast that needed further study. LAST YEAR. I needed to make an appointment to get all that shit done. They had never received anything from Cedars and it didn’t matter anyway they needed different stuff than what was in those files anyway. Then they started to leave. HOLD UP! “Hey hey hey ladies,” I thundered, “we are gonna do all that shit right now. Today. Turns out I’m already a year late so we should hop right the fuck on it, what do you say?” They tried their best to say that maybe the radiologist had gone home (it was 3:30pm) and that I would have to come back. Lightning cracked as I bellowed NOOOOO. Ask them to stay. Send them to me. I would convince them to do it. A woman was walking by, stuck her head in the doorway (obviously aware of my summoning powers or possibly overheard my whining) and said, “I’ll stay, no problem!” Didn’t those gatekeepers have egg on their face!!
So I get like a zillion more mammograms. Did I get an ultrasound? I can’t remember due to adrenaline and rage. I know I got one for my gall bladder surgery in 2016 but it all runs together. Yes, that many strangers have touched my boobs. Are we all clear about how comfortable it is to have your tits smooshed to smithereens 87 times? It sucks. The technician was not happy she had to stay overtime and took it out on my chest. I said thank you too much and really pissed her off. Bruised and battered, I return to the Bad News Room. The Radiologist comes back after looking at all the new pictures and has a look. UH OH. All of the docs had taken a look, and no one was excited about the atypical cells in my left breast. They wanted to do a biopsy. I wasn’t really surprised. But also, VERY not excited.
A month later I went in for the biopsy. I had someone come with me, but it was a short procedure, just a local anesthetic and it generally takes like 30 minutes. What they don’t tell you: you will be lying face down on a table that goes up and down. There is a hole for your boob in this table. A mammogram-type vise under the table is clamped to your breast through that hole, pinning you to the entire apparatus. By your boob. Then the table is raised to the eye level of the people standing on the ground to ensure you don’t escape. I’m not really a panic person but this was anxiety attack-inducing. I looked away, tried to breathe, and concentrated on good thoughts, like making out with inappropriate people and going back to Barcelona. They dug around for what seemed like forever in an incision near my armpit. I swear they were taking core samples from the furthest part of my boob, easily 5-6 inches away from the point of entry. And while I don’t know if that’s true, it felt like it, so there. Viva la big-boobed boob-havers. They had to go back three separate times for more tissue. I remember that clearly. It finally ended and even though they kept repeating don’t sit up too fast, I sat up really fast and tried to jump off the table. Luckily the pool of blood below me gave me pause, and as the nurse kept asking me questions, I realized I may pass out BUT NO WAY WAS I TELLING THESE PEOPLE THAT. They could tell, though, I think. They held my arms as I tried to make a break for the door and the table slowly lowered. Desperately, I begged them to ask me their questions in the hallway so I could get out of there. They finally said okay, led me out, and then told me I had to get ANOTHER MAMMOGRAM to make sure the little marker was in the right place!! I nearly had a tantrum, but the nurse started making fun of me and joking around and reminded me that I was WAY funnier when I came in than I was now. How dare she. I could be funny now! Just try me! Absolutely give me yet another mammogram, fuck it! Then she reminded me that my boob was still numb so I wouldn’t even feel it. And then I felt stupid. That’s Hollywood baby.
I wait a week for my results. They call me back. They have detected FEA (flat epithelial atypia) and ALH (atypical lobular hyperplasia). Both of these are atypical cells that predict there might be cancer in the area. They are benign but seem to be able to tell the future. And your future might be breast cancer! It’s not cancer but also not NOT CANCER, so yeah, super clear. I was to meet with the breast surgeon the next week.
I took two people to this appointment. After the panic attack at the biopsy party, I thought it best to bring extra ears and reinforcements. My doctor explained a bunch of stuff. I heard a bunch of stuff. She wanted to excise the area. I said “do we have to?” and she said nope! We can just keep watching it. So I decided to do that.
January 2020: no change! See you in 6!
July 2020: No change! See you in a year!
December 2021: OH FARTS HOW DID 1.5 YEARS PASS?
January 2021: “Our first available mammogram is in May, late May”
Well, shit. I’ve really done it now. My pandemic brain, two years of pandemic living, blah blah blah, I screwed up. I ask if there is a waitlist, or somewhere else I can go. Nope. Screwed. Then I call back in April because the day I scheduled I have a work trip OF COURSE. The woman I get on the line: “why are you scheduled for a screening mammogram?”
“I had a biopsy and I have to get in as soon as possible and that’s what they gave me.”
“You need a diagnostic mammogram, and we can get you in for that ANYTIME.”
“Excuse me, I just waited nearly 6 extra months for you to tell me I could have my surgeon call you and get me in ANYTIME???”
“Oh for sure, just glancing at your chart anyone could see that.”
SIDEBAR: For the record, when you think of the words screening and diagnostic, do you think one has more gravity than the other? As someone who messes about with words quite a bit, I was stunned to realize they don’t mean the same thing at all.
So due to travel and vacations, I went to get my diagnostic mammogram June 2022 and my radiologist asked me to hang out in the Bad News Room after my initial 390723894 images. Went back for some more images. Never a good sign. My radiologist came out and said that the calcifications had increased, and she recommended another biopsy. I said I would talk to my surgeon. Which was my next stop. So cool when you can get all your appointments in one day!
I basically already knew what was gonna happen. I had three choices: wait (seems a little fate-tempty), do another biopsy (FUCK NO THAT TABLE IS THE DEVIL) or get the area excised (doctor recommended, and logical, right? Get the heck out of my body, bad cells! Before you make something really bad!) I chose surgery. It was quick. It was outpatient. They would test all the tissue they removed to come up with next steps.
Next steps:
Benign: cool, let’s do some drug therapy (Tamoxifen if you must know….pushes you into menopause but cuts the likelihood of Bad Boi Cancer in half!)
Kinda Cancer: (Stage like 0.5-1) A little radiation with a side of drug therapy
Bad Boi: C’mon that’s not really an option! (TBD if that happens)
Okay. Totally handleable. But the real question: how much tissue are they taking? Not enough to notice, they claim! And that I may have a tiny scar but it might be the size and placement of an implant scar. My friends Rachel and Elena are concerned about my perfect pink nipples, (THEIR WORDS)but it looks like they will also survive.
So it seemed like a no-brainer. No fun, but mostly preventative and the right thing to do. The only problem was how to pay for it. And that’s how we begin this journey. It’s not the surgery I’m worried about. It’s not even cancer, most days. It’s how this country and this healthcare system might bankrupt me. And I’m pretty savvy. So buckle up. Here we go.
That table is for sure the devil. I was only calmed by the fact that my nurse looked EXACTLY like my pre-natal yoga instructor who I love and who is very calming. Nurse was like her in this way too. Even when I had to stay there forever because of the massive bleeding.
So when is the part where you link to the GoFundMe to help you pay for this bullshit? Because I am ready. (This is Paige.)
Oh my gosh the table sounds terrible.