Hot Dense Breast Biopsy Summer
A dramatic week unfolds.
The summer of 2024 is turning out to be quite memorable. It’s Brat summer. Olympics summer. Pop lesbian summer. Trump shot, Biden out, Kamala-coconut, JD-couch, Tim Walz, weirdo turnaround, I cut my hair and got a mullet summer! What a rush! What a ride!
But for us party-goers, it’s also dense breast biopsy summer. This past week I got a punch to the boob, literally, when I went in for my first breast MRI, had to go back and get a biopsy, and got the pathology results the same day Kelli got hit by a car on a Citibike. Before I explain, let me say: Kelli is OKAY, but she did have to take a trip to the ER and has two staples in her head. My test results were OKAY as in not invasive cancer, but not totally without follow up. So. We are OKAY, as this sign in our kitchen reminds us often.
Now, I will back up and talk about why breast density is a thing, why waiting for test results is an exquisite torture, especially if you get test results the same day your wife gets hit by a car (but is OKAY), and what happens during a breast MRI and biopsy.
Why Breast Density Is a THING
I am a high risk patient for breast cancer (in addition to the Lynch Syndrome cancers) because my younger sister and my mom have both had breast cancer. Among all of my appointments and surgeries in 2022 and 2023, I was referred to a breast oncologist and surgeon for this reason, it’s another necessary body part to monitor. I went for my first mammogram a few weeks after being diagnosed with Lynch, and a few weeks before the surgery that would remove my early stage rectal cancer. If you have never had a mammogram, this is what to know about breast cancer screening: Ultimately, it’s the best thing we’ve got to catch cancer early and if you’re 40 or at high risk you should absolutely do it, but it IS confusing and stressful.
The current recommendations are that women get screened, typically with a mammogram (aka where they squash your boobs horizontally and laterally in a machine and take some x-ray pictures, which use a small amount of radiation), starting at age 40 unless you have symptoms (you feel a lump or something weird in your breast) or are high risk (you have the BRCA gene or a family history) in which case you could talk with your doctor and potentially get screened earlier.
As of late, there has been a wave of discussion and media coverage about how many women have dense breasts, and how mammograms are not great at detecting cancers in our heavy boobs. One doctor recently explained to me that if breast tissue was compared to snowflakes, dense breasts are like looking at a snowstorm (or something). The point is, if you have dense breasts, it’s really hard to spot abnormalities on a mammogram. How do you know if you have dense breasts? You have to go in and get a mammogram of course. Insert wacky tongue sticking out face here.
If you DO have DBs, it’s recommended that you at least get a supplementary ultrasound as well, which, in comparison to mammograms, are not painful, do not use radiation, and whose only risks are a sticky boob from the ultrasound gel. So why not just get ultrasounds? Apparently mammograms and, their stronger, louder, slower more claustrophobic-y cousin, MRIs, spot things that ultrasounds don’t. So those with DBs are now told to get both a mammogram and an ultrasound at minimum, and there is some movement toward recommending breast MRIs as routine screening as well. NY Magazine published a feature article a few weeks ago about this subject, When a Mammogram Misses Breast Cancer, and I was probably not the only one who was spurred into action to get an MRI after reading it.
In my case, I had an order for a breast MRI that had been sitting in my “Health” file folder for about six months. I was supposed to get it six months after my last mammogram and ultrasound as my breast oncologist said she liked to do rotate screenings every six months, but I had been putting the MRI off because I was a little bit traumatized from my last two mammo/US screenings, where I had to go back for further investigation each time.
The Exquisite Torture of Waiting for Test Results
My first mammogram in 2022 was clear, but they saw something on the ultrasound that turned out to be a benign cyst. My ultrasound in 2023 was clear, but they saw something on the mammogram that turned out to be a lymph node. Writing it out here it might seem like no big deal, but each of those weeks was really stressful and time-consuming to go to multiple appointments, plus 3-4 days of waiting and worrying. It’s sort of a hell week. Because seeing A THING listed on your radiologist report, especially when it’s unclear what THE THING is, is true core Anxiety Party stuff. If you are curious, this is exactly what my first one said - the finding that turned out to be a benign cyst:
Where my fibrofattys at?! JK, but it’s a lot of stuff to decipher obviously. And I know the internet is not great for medical interpretation, but it has, fwiw, helped me decipher every report. With this one, for instance, I googled “no blood flow” which at first I thought sounded bad, and found out that was actually a GOOD thing, indicative of a benign cyst vs. cancer, which gave me something positive to focus on when having to go back for a second ultrasound to have them tell me exactly that.
These results get posted directly to me, with no doctor to interpret them, because of a law passed in 2016, The 21st Century Cures Act, with the intention of helping patients directly access their test results and medical records. I understand why this is a big picture something patients might want, but it’s incredibly stressful if you, like me, do not have the willpower to NOT check the results and wait for the doctor to call.
Since the fall of 2022, I’ve had 8 different MRIs, 3 pelvic ultrasounds, 4 breast ultrasounds, 3 mammograms, 1 endometrial biopsy, 2 surgeries, and lots of blood work and urine tests for cancer markers. All of those screenings and tests came with reports like the one above, released to ME, king patient, immediately. TYSM!
You would think it gets a little easier with all that practice, but I’m not sure it does. Not to mention how much all this costs (I’ve resigned myself to knowing I will hit my out of pocket max of $7500 every year). All this is to say, I procrastinated on scheduling the breast MRI my doctor had ordered because I was exhausted by the screenings and results pings and waiting rooms and I just wanted to kind of live like a normal person for a while. So May passed, when I was supposed to get the MRI, then June, then July, then the New York Magazine article came out and I knew I needed to woman-up and get it done.
What Happens During a Breast MRI and Biopsy
Here’s what happens during a breast MRI: you go in, strip down (you can leave your underwear and socks on) and lie face down on a table with boob holes that slides in and out of the MRI tube. You hold your arms straight up above your head (think “superman” position) and it’s very important that you don’t move. You also get a small squeeze ball to hold in your hand in case you panic and want to stop. All of my MRIs have been “with contrast” which means I get a vein puncture set up before going in so that they can put contrast dye in my blood stream half way through the MRI. The contrast dye helps them take better pictures and see everything more clearly, more or less. There is a small chance you can have a reaction to the contrast dye if you’ve never had it before, and some people get nauseous or feel a little funny when it goes in, but I’ve never had any issues. This is most of the reason they tell you not to eat a few hours before an MRI, in case you get nauseous. All in all, they are very good about checking how you feel after the contrast goes in, and it’s a very small chance you will have a reaction.
The nurse or tech leaves the room you’re in with the machine and goes behind a glass wall, where they are looking at the pictures and running the machine. They talk to you through a speaker, and they can hear you talk back. The MRI tube is open on both ends, and for the one I just had, they had a mini rearview mirror situation rigged up, so that if I had my eyes open, it looked like I was looking out a window, even though I think it was just a picture of blue sky and trees. I could also faintly see the MRI tech and nurse and a big clock that counted down each interval when the machine was taking pictures. It’s all very “profound opening sequence of a movie.” It lasts about 20-30 minutes and the machine is quite loud; it sounds like a fax machine or signing on to the Internet in the late 90’s. They give you ear plugs, and I was offered headphones and my choice of music that they could find on YouTube (under pressure, I blurted out “Motown?”), but it doesn’t do much to drown out the noise. Pictures are taken in what seems like random time intervals - something like 2 minutes, then 6 minutes, then 4 minutes, then 5 minutes, then they give you the contrast, and you do the same sequence all over again. You aren’t supposed to move at all anyway, so the time intervals don’t really matter other than hearing the sounds start and stop.
When I get pelvic MRIs, I am on my back rather than my stomach, I have to hold my breath for parts of the picture sequences, and there is a medical Siri voice in the machine that tells me to “BREATH IN!” “HOLD YOUR BREATH!” and “BREATH OUT!” when needed. In a lighter situation, it might comically be described as medical BDSM.
Nevertheless, I didn’t have to do that for the breast MRI, I guess because they are just looking at what’s in the boob holes, my fibrofatties.
I felt good leaving the radiologist, and hopeful that I could check this thing I had been dreading doing off my list, but when I got pinged with “YOU HAVE NEW TEST RESULTS!” a few hours later, my heart dropped to see the following:
The takeaways are there is a “non-mass enhancement” that is “suspicious” and I would need a “biopsy for further evaluation.”. I immediately did my internet searching and my doctor’s nurse called me but she couldn’t tell me much.
“It’s an area that looks concerning, you need a biopsy.”
“What does it mean that it’s not a mass? Is that good?”
“Maybe. It’s not a mass. You could go in again and they could not see it.”
Hmmm.
I scheduled the biopsy for the following day, and went back to the exact same place, jerry rigged rearview sky mirror, boob holes, contrast IV all over again, except this time a radiologist was there and there was more than one nurse. All of these people were excellent and made me feel much better about everything. The radiologist explained exactly what would happen during the biopsy – I’d go in for a mini-MRI to make sure the non-mass enhancement, what we were now calling “the area” was still there, then come out, then get numbed in the boob, then they would do the biopsy, then I go back in to make sure they got it, then out for them to put a clip to mark the spot in my boob, then back in to make sure they could see the clip in the pictures. Then I would go get a quick mammogram to make sure the clip was in the right place for future tests.
A small part of me was hoping they just wouldn’t see “the area” when I went back in, but they did, so we continued, and a very nice nurse held my hand while I got stabbed in the boob. Everyone was impressed that I had little bleeding, and, when I asked my signature question of the radiologist – “Can you give me something positive to focus on?” she was great, explaining that the area hadn’t reacted to the contrast the way a cancer would necessarily, a positive sign, and that it could just be fibrous tissue or something else.
Then Kelli Got Hit By a Car
I went home, focused on work, and tried not to think about the results I would be getting in a few days. That’s what I was doing on Thursday afternoon on a zoom call, when Kelli called me. I didn’t answer because of said zoom call, and messaged her that I would call her back once I was off the call.
She wrote back right away:
I got hit by a car.
I’m in an ambulance.
I wrote “Emergency. Have to hop off” in the zoom chat and immediately called her. She explained she had been leaving a Citibike dock behind a truck, just starting to ride, when a car came out of nowhere and hit her on the side, causing her to tip off the bike and hit her head on the ground. She didn’t black out, but her head was bleeding and a crowd of people gathered round and had called 9-1-1. She calmly said she had thrown up and felt nauseous but didn’t think she had a concussion. I asked if she wanted me to come and meet her at the hospital but she wanted to get checked out first.
I paced and sat helplessly for a while, letting my work colleagues know what was going on, but feeling very freaked out. I kept messaging Kelli for updates and eventually she saw a doctor who sent her home with instructions to watch for increasing nausea but otherwise thought there was no concussion. Ten minutes after she walked in the door to our apartment, we were sitting on the couch and she was recounting the story when my phone buzzed:
“you have a new test result!”
Sweat broke out on my forehead and I froze, then immediately clicked to open the report.
DIAGNOSIS:
A. Breast, 6:00 6FN, left; MRI guided core biopsy:
- Lobular carcinoma in situ (LCIS), classic type
- Radial scar
- Surrounding breast parenchyma with cysts, adenosis, apocrine
metaplasia, and focal elastotic stroma
- Microcalcifications associated with benign epithelium
All I saw was carcinoma and I felt the air was sucking out of the room. “I think it’s cancer” I said to Kelli, who was still pretty out of it, holding her recently bleeding head. “Carcinoma means cancer,” I said, pouncing on my laptop like a madwoman. Then I googled it and saw this:
“ARE YOU KIDDING ME!?” I shouted at my laptop. “It’s not cancer. I think.”
I spent the next hour or so looking up LCIS and double and triple checking that it all said the same thing: not cancer, but could increase your risk of cancer. Typically recommend close monitoring. Considered a benign condition. I could breathe with this. Kelli reiterated that she had two staples in her head and I needed to calm down and wait for the doctor to call.
The doctor didn’t call me that night, which was a little disappointing. I had to message my doctor’s office the next day, they finally called (“it’s not cancer, but you might need surgery”) and now I have an appointment scheduled with them this week, along with my regularly scheduled pelvic MRI. BREATH IN! BREATH OUT! Exactly, medical Siri, exactly.
Current Anxiety Trigger: Cancer and Car Accidents (see above)
Current Anxiety Relief: RayGun and Ilona Maher
Current Anxiety Soundtrack: