What it Feels Like to Find Out You Have Cancer, part 1
Most people don’t know what it actually feels like to find out you have cancer until it happens to them. I’m writing this multi-part series to help with that – for the friends, family and doctors of people going through it who want to truly understand the experience. Mine happened in 2020, when we were all already white-knuckling it through the pandemic and trying not to think too hard about our own mortality. But, the experience of finding out that you have cancer transcends any particular moment in time.
Part 1: The Mammograms
In April of 2020 I was in full-time fear mode about my health because of Covid: I have heart failure caused by childhood cancer, which landed me in the dreaded high risk category from the virus. My cardiologist instructed me to call her immediately if I contracted it, because I would almost certainly end up hospitalized. My family “fled” to our farm house in rural Wisconsin, where we lived for 5 months on the outskirts of a town of 900 people, and tried to let our bustling life in Chicago go. This included pausing non-virtual jobs, dropping social engagements, foregoing the gym, and cancelling any non-essential medical appointments that were coming up. I did not want to go anywhere near a medical center where people with Covid were if I did not absolutely have to. The summer thankfully passed without any of us catching the virus, because we were well and truly isolated.
We returned to Chicago 5 months later, just in time for my annual mammogram, which I had rescheduled from a few months earlier in April to that September because of our exodus. The appointment was at night, and I almost didn’t go, because I was feeling cozy and wanted to stay home and have dinner with my family. But I rallied, because I didn’t want to risk waiting any longer. This was the first time that I was visiting a healthcare facility and it felt nervewracking, because I wasn’t quite sure how to do the basic acts involved in getting to a medical office. This was still early in the pandemic, and there were more questions than answers. Is the elevator safe? Maybe I should park on the street just in case. Is one mask enough, and what kind - blue surgical or N95? How far away should I stand from the others in line? I didn’t want to touch anything and washed my hands several times just from the process of checking in. I stood off to the side, opting not to sit in a chair or be within 10 feet of anyone else. I hear my name called and head for the doors to the testing area.
The women’ s health building is beautiful, on the outside as well as on the inside: roomy, glass walls, bright with calming colors everywhere. The place still feels new from the last refurbishing – there are beautiful carpets, wall hangings and furniture, and even weirdly luxurious changing rooms. Each woman gets a bright pink half-gown from the warming cabinet, but these aren’t standard issue. There are 3 arm holes, so after you put one arm through the first two openings, you bring the remaining ⅓ gown across and put your arm through again to secure it; a brilliant design. After changing I wait in another area but, when my name is called and it’s time to start the mammogram, I no longer notice the furniture. Shit gets real pretty fast. The imaging rooms in the back are not warm or beautiful. There’s zero modicum of privacy – the whole breast and arm have to come out of the pink gown to do the test properly. The technician manhandles my breast as if it is not actually part of the human body - not her fault, of course. She needs to squish my breast between two pieces of clear plastic attached to the mammogram machine. The problem is, it’s akin to putting a round peg into a square hole, literally. There’s a lot of manipulating, stretching, pulling, leaning, scraping and reaching that goes on to get this to work. “Hold here.” “Look there.” “Drop the shoulder.” “Sorry I’m so close.” “I know it’s uncomfortable, we’re almost there.” “Can you lean in a little more?” (no) “Is this OK?” (um, yes?)“ “Stop breathing” (am already having trouble getting enough air through my N95 with my neck craned far to the side to fit snugly against the machine) “Hmm, we have to do that again” (um, is excessive radiation in here dangerous?) “Put your arm across here and reach as far as you can and hold your breath while not moving your breast” (ummm) “Don’t move”. We get a standard few views and it’s finally over. She lets me know that I’ll hear from my doctor about the results soon. I change back into my clothes, dumping the fancy pink gown in the dirty laundry bin, wash my hands one more time and I don’t look back. As soon as I reach my car and can pull off the N95 that has left wide imprints on my face, it’s completely out of my mind.
I get a message 4 or 5 days later, over Labor Day weekend, from my electronic medical record that I have a new test result. It’s my mammogram report, which is not normal. It doesn’t use those words anywhere, I just know that the findings they describe - clusters of calcifications - isn’t normal. This was around the time that medical centers started releasing medical records to the patient often before they’re reviewed by a medical provider, so there’s no note on the test results, and it doesn’t give any direction about what to do, and of course it’s a holiday weekend. I send my primary care doctor an email asking what this is about, and he calls me first thing Tuesday morning confirming that my mammogram results are, in fact, concerning. I am scheduled the following week for a repeat mammogram, during which they will take extra views and some extra close-up views so that the radiologist can see what’s going on a little better.
I again don the tight-fitting N95, again park on the street to avoid the elevator,and again move through the beautiful building and fancy furniture and warm gown. This time though they’re going for it. No more nice lady – the technician has a spot to focus on and she’s going to get it. I go through 6 or 7 images to get the three that they need (but again am told, incorrectly, that the extra radiation isn’t that bad for me). This time it’s brutally uncomfortable. The spot they’re trying to see is more towards my back than my nipple, so they keep trying to shove both my breast and what feels like part of my chest wall in between the plates. I can literally feel it scraping my ribs as it goes past. When the technician is done, she asks me to wait in a waiting area to talk with the radiologist, since in this scenario they read the mammogram while you wait. After about 15 minutes she comes back for me and asks me to wait in a different room. This one has 3 small chairs, a small coffee table and a box of Kleenex. It is obviously bad news to be called to the kleenex box room, and I already know that it will be bad news, since if it was normal they would have told me that in the hallway and sent me on my way. Even the art on the wall in this room looks sad.
The radiologist comes in, sits down close to me (another bad sign) and gets right down to business, telling me that she suspects cancer. That she’s actually pretty sure that it will be malignant, based on what things look like today. I’ll need to come back again and have a biopsy taken to know one way or the other. This person is not a people person. She may have received training in how to give bad news, but it didn’t click with her. She’s pretty cold, and her hand was even literally very cold when she put it on my arm to try to console me but it ends up just feeling jarring. I am in a daze and cannot even think straight while she is talking. I may have even stopped listening after the first sentence. Thankfully she leaves after a few minutes, and I am relieved, but I also start crying right away, so I guess I’m glad for the stupid Kleenex box after all.
It’s not a rational moment, when you’re told that you probably have cancer. I’m floored. I have already had cancer, and the thought of having it again is devastating. Having survived near-death cancer already, and being a doctor who knows exactly what might come next, my mind goes straight to the worst. Scenes of my funeral and my husband and children going on with out me are already vivid. I cry and sit in stunned silence by turns. And, I feel immensely lonely.
A nurse comes in soon and tells me that all of the schedulers have left for the day (it’s 3:55 pm on a weekday) so I can’t even make the appointment for the biopsy. Maybe they just left while I was alone in here sobbing? “They’ll call you tomorrow” she tells me. This pisses me off in a way that I can’t even explain. I want to get on with it, make a plan to find out what it is, and quickly. But they’ve just robbed me of that, after badly delivering the bad news in the bad news room.
I do not remember that night. I imagine that having to tell my husband this bad news was worse than even hearing it for myself, and I’ve probably buried that night so deep in my psyche that it will never come to the surface again.
Thankfully, they do in fact call me the next day and tell me that the first opening for a biopsy to figure out if I really have cancer or not is in is 13 days. I am in such shock that I can barely speak. I sputter “that’s too long” and she replies “that’s all we have, sorry”. I tell her that I am a cancer survivor already, a physician, a mother – does any of that make any difference? No it doesn’t. I ask to be put on the waiting list for cancellations. She calls me back a few hours later and is laughing when I pick up. While still laughing, she tells me how funny it is that they just had a cancelation for a few days earlier than what she had already proposed, and isn’t that great? It bothers me so much that she is laughing. I know logically that this isn’t fair, that she isn’t laughing at my situation. But doesn’t she understand that someone who has just found out that they may have breast cancer does not want to laugh?
Stay tuned for part 2, The Biopsies