Well, here’s an update I literally never in my life thought I would have to write: I’ve been diagnosed with Triple Negative Invasive Ductal Carcinoma – Breast Cancer.
(I warn you now – this is a long, rambly post because I just need to get it out of my head and into the wild.)
Yep, the Big C. The rare kind. The aggressive kind.
And I’m only 38. With 2 young kids. A whole life ahead of me.
The tumor is small – 1.7cm and after MRIs, Ultrasounds, PET Scans, CT Scans, and Bone Scans it’s been fully determined it has not spread anywhere. Lymph nodes are clear. Bones are clear. The other breast is clear. Organs are clear.
But it’s aggressive – a Grade 3. My cells are dividing FAST.
It’s one of the things that causes the prognosis numbers on TNBC to not look great. If you catch it early – like I have, the prognosis actually IS pretty great. A 95% 5-year survival rate, a 65% chance of being CURED (not “remission,” not “no evidence of disease,” only a 2% chance of recurrence down the line) at the end of Chemo (yes, 4 doctors have literally told me I will likely be CURED — not a word oncologists use lightly).
But if you catch it by the time it’s starting making moves, those numbers can drop pretty quickly.
But also – according to my flock of oncologists – the aggressive nature of my cancer is actually its superpower – it responds extremely well to chemotherapy.
Chemo, I’ve learned in my quest to become the world’s most informed cancer patient (thanks, OCD!), targets rapidly dividing cells – so the faster the cells are dividing in this little, localized tumor, the faster Chemo is actually able to kill it. The flip side of that is that our immune systems are ALSO powered by rapidly dividing cells, so after yesterday’s chemo – my 3rd – I am pretty much on quarantine because my white blood cell count was almost too low to even get my treatment.
It’s been just over a month since I was diagnosed, and I’m 3 chemos in, and life has been an absolute whirlwind.
But let me back up and start from the beginning.
The Lump
On January 26 of this year, I texted my sisters saying, “I think I found a lump.” Every woman knows what “lump” means – no context needed.
They assured me that I was likely fine, and I tried to convince myself of it as well. I can’t quite remember, but my guess is that if I texted them on January 26, it was because I had found the lump a few days before and had been worrying over it.
Fast forward through my cycle, and the lump was still there – no bigger or smaller, just there. It didn’t hurt and it was quite mobile, so I was trying to convince myself that it was nothing, but I did what we’re all supposed to do and called my OBGYN to make an appointment. I had my annual already scheduled for 2 weeks from that date, so they just said to speak with the doctor about it then.
At my OBGYN appointment a couple of weeks later, my doctor was quite confident that it was likely a fibroadenoma, but she told me she wanted me to get a mammogram and ultrasound just in case.
What I’ve gathered from the numerous doctors I’ve spoken with in the last month is that this is where many women stop investigating. Their doctor says it’s likely benign, and so they run with that and don’t bother going in for their mammogram and/or ultrasound.
Luckily for me, I am a diagnosed hypochondriac with OCD – so that wasn’t an option.
About a week later, I was scheduled for my mammogram and ultrasound, and this is where things started getting hairy. During the mammogram, they took some images and brought me back to the waiting room, but a few minutes later, the tech came back and said the radiologist wanted a few more images.
The same happened during the ultrasound.
I was then brought into a tiny little room where I spoke with the radiologist virtually, with some (very nice but random) lady named Susan standing behind me. The radiologist told me that my mammogram looked clear, but there was something on the ultrasound that wasn’t conclusively benign, so she wanted me to get a biopsy. She specifically said that the mass had mostly benign features, but there was 1 thing about it that was throwing her off.
I was brought back out to the waiting room, and this time I spent about 10 minutes waiting to be called up to schedule the biopsy. I just stared at my lap, trying not to cry while I listened to a woman on the other side of the room gossip with a friend on speaker phone.
Once I was called up to the desk, the well-meaning (I’m sure) scheduler tried every last nerve I had by speaking extremely slowly and softly. I just wanted to book my biopsy appointment for the first possible date and get the hell out of that building so I could break down, but there she was, determined to be all kind and reassuring.
As soon as my appointment was booked, I threw my sunglasses on, and tears started streaming down my face as I walked to my car.
By the time I got home – about 15 minutes later – I was in a bad mood but otherwise fine.
My biopsy was scheduled for 2 days later.
Six Minutes
And then the waiting began. I was obsessively checking my MyChart for the biopsy results to come through … and on Friday, March 27, they did. Right as I was on my way out the door to a meeting, I got an alert on my watch that I had results in my chart.
I went into my husband’s office, handed him my phone, and asked him to read the results for me … and for 6 minutes, he split his time between looking at the results and frantically googling things.
So … I knew.
I knew he was looking at it, and it wasn’t good.
The word “benign” would have been an instant relief and joy. Frantically looking things up meant he was trying to get the right information to tell me something reassuring – while simultaneously blowing up our lives.
I asked him to hand me back my phone, and he looked up at me with an expression that just broke my heart and said, “I’m sorry…” I instantly felt bad for putting him in that position. I was scared to look at the results, but I put the person I love most in the world in a position to deliver some of the worst news to the person they love most in the world.
There’s probably a reason a lot of doctors’ bedside manner seems to come off as almost emotionless – caring too much is too hard.
Plan A, Plan B, Plan C
All of that said, since I had been waiting nearly a full week for the results, I already had a plan. OCD and anxiety are kind of beneficial in that way – they can trick me into thinking that a “nothing” is actually “something,” but they also result in me making a Plan A, B, and C for when things go wrong.
I’m also lucky to live where I do – Dana Farber, one of the foremost cancer institutes in the world, is an hour away. Rhode Island Hospital, another nationally recognized hospital, is 7 minutes from home.
Within 2 hours of getting the results – before any medical professional actually spoke with me on the phone to discuss the results – I had an appointment with the team at Dana-Farber, where they have a specialty clinic for women under 40.
I also messaged my PCP to ask for a referral to the best breast cancer specialists within the Brown University Health system, and she did.
My psychiatrist also got a portal message, asking if I could have a refill of my as-needed anti-anxiety medications. I’ve been seeing her since before I got pregnant with my oldest son, and she is AMAZING. When I answered the phone she said, “Courtney, what the f*ck – I do not like this, return to sender.” I told her that a refill of the meds I had – in the same quantity – should be fine because they typically last me a long time (we’re talking 20 pills can last me 4-5 months usually) and she said, “Yeah… no we’re going to give you a LOT extra.”
And thank goodness for that, because I spent the next 2 weeks in a weird state of crying and being numb. I had more doctor’s appointments, scans, and tests in a month than I’ve had in my entire life.
From the day I was diagnosed – March 27 – until the day I started chemo – April 21 – was less than a month. That waiting period was torture. Waiting to find out the results, then waiting to meet with doctors to put a plan together and get more information, then waiting to actually START the plan.
Roid Rage Productivity and Other Silver Linings
But once chemo started… life kind of shifted back into a “new normal.” Most especially because my response to chemo can only be described (by me – I don’t know what a doctor would say) as amazing.
Literally the day after my first infusion, my lump (tumor, officially, I guess) was smaller.
After my second infusion, I could barely find it.
Today, 1 day after my 3rd infusion – I cannot feel it at all. I have to find my biopsy scar, move my fingers over from there, and press down HARD and then I can feel a teensy, tinsy little bump – literally maybe the size of a needle point. It might not even be the tumor – it could just be scar tissue from the biopsy. Or maybe the tiny poppy seed sized metal marker they put into the tumor site.
I have to complete 16 total chemos. 12 weekly infusions of Taxol/Carboplatin (of which I’ve completed 3) and then I move to an every 3 week cycle of A/C – affectionally known as the “red devil” because the side effects are more intense, and also apparently it literally turns your pee red.
So far, I’m feeling pretty great (and this morning in particular, I am doing what I call “roid rage productivity,” where my pre-meds from chemo yesterday are still giving me a massive energy boost that should carry me through most of the workday today). My nausea has been extremely limited. I’m cold capping and haven’t lost any hair (although my hair does look gross most of the time because I can only wash it once a week).
The biggest side effect is 1 I can’t feel – my immune system is totally shot. I almost wasn’t able to get my infusion yesterday because my white blood count and ANC were too low when I had my labs done the day before. But they retested me in the morning, and I had come up .03 over the threshold and was able to move forward.
All in all, so far chemo is treating me well. It’s going to be roughly 6 months of chemo, followed by at least 1 surgery, maybe more, and then I think some radiation. I’ll be turning 40 in June 2027 and should be wrapped up with treatments/surgeries/etc just a couple months before then. I’ll have to do scans for a few years to make sure nothing is popping back up, but then – hopefully – I will be able to put this all behind me, and it will be a distant memory of a shitty year.