When Negatives AREN’T a Positive: Enter Triple Negative Breast Cancer
With a young resident observing silently in the corner, the surgeon pulled out a clipboard with a blank piece of paper and drew a picture of two circles that were meant to represent my boobs. She then wrote down numbers and scribbles to serve as visual reinforcements of her verbal explanation of how breast cancer actively tries to kill you.
Her spiel felt scripted; her delivery robotic. (I’m sure she’d make a wonderful surgeon, though.)
I don’t remember any details until she was talking about hormone receptors and she went “this one… is negative…this one is also negative… and the third one is negative as well.”
At that moment, I mentally checked out of the conversation as I breathed a sigh of relief and said to myself, “Three negatives. Finally! Some good news!”
I must have had the relief written all over my face because the surgeon checked back in with me to see what I was thinking. I told her after a really scary few weeks, I was just so happy to hear SOMETHING good.
She paused. “Oh, then I should have been more clear.”
I looked at my girlfriend and back at the surgeon. “So, three negatives is actually bad?”
The surgeon doesn’t answer the question but just said, “It means you have Triple Negative Breast Cancer. It is the rarest kind in the US (where I live), accounting for only 15% of breast cancer cases, and because the tumors lack the three most common hormonal receptors that most breast cancer therapies target, there are fewer treatment options available.”
There’s silence in the room as I take it all in and my eyes well up with tears.
I had gotten it wrong.
I do an awkward laugh/cry thing and say through tears, “Well, MAN! You guys should really think about rebranding this because in the medical world, I thought three negatives would be a good thing.”
I soon learned that Triple Negative Breast Cancer (TNBC) wasn’t officially recognized as a distinct type of breast cancer until 2006 and that it disproportionately affects younger women, women with BRCA mutations, and Hispanic and black women.
I was 38 at the time of diagnosis, breast cancer didn’t run in my family, I didn’t test positive for either BRCA mutations, and I’m white.
TNBC is one of the most aggressive types of breast cancer, more likely to spread and more likely to reoccur than other types. And although it only accounts for 15% of all breast cancer cases, it’s attributed to around 25% of all breast cancer deaths in the US, which is why there’s a ton of interest TNBC right now.
After two additional positive biopsies in my lymph nodes and a couple more scans, I was diagnosed with Stage IV locally-advanced non-metastatic and had to begin neoadjuvant therapy asap because of the aggressive and fast-moving attributes of TNBC.
Three weeks after that surgeon’s appointment, I was getting my port put in to start chemo.
I completed three months of bi-weekly AC and two months of weekly Taxol + Carbo before travelling to Boston for my mastectomy at Dana Farber. After recovering, I started 6 weeks of daily radiation back in my town, followed by six months of oral (pill) chemo. My last pill was on Christmas of 2019, totalling 15 months of treatment.
Although my body was slow to get the memo at first, by week four of chemo, it began to show a positive response. By the time I had surgery, there was only a small residual amount of cancer visible in the scans, and by the start of radiation I was declared NED.
All in all, it was pretty manageable. Not awesome by any means, but compared to the horror stories of people battling nausea, not being able to keep food down, being so exhausted they couldn’t get out of bed, and countless other side effects, I was very, very lucky. I don’t attribute it to anything I did, but I think staying physically active – even if all I could muster was a 15-minute jog or a sluggish session with my personal trainer – and continuing to work throughout treatment helped me feel like myself, especially when I was unrecognizable in the mirror.
Now I live in this strange purgatory where I’m not in remission, but I’m no longer in treatment. Because I have TNBC, the common breast cancer maintenance meds wouldn’t do anything, so I’m just being told to go live my life and try and put cancer on a shelf for now – although that’s easier said than done. Anxiety still makes it hard to fall asleep. Fear jolts me up in the middle of the night as I think about what the next few years may hold.
In the meantime, I’m doing my best to be present and maximize my moments. I moved to a new town for a fresh start. I began speaking about my experience to motivate people to live a more intentional life focused on human connection, gratitude and joy. I just did my first TED Talk last week entitled “Confronting Death to Live a Fuller Life” and I created @notimetowasteproject to share stories of people living their best lives and inspire others to do the same.
Maybe all of this is a distraction from the underlying fear and anxiety that the cancer is still there, silently spreading through my body unbeknownst to me as I go about my life, assuming I’m cured. I don’t know. But I do know that sharing my story and making a concerted effort to maximize my moments is helping me live a life without regrets so if things did go south, at least I would know that my days were well spent.
I’m living like there’s No Time to Waste – with or without TNBC. – Alison Hadden
Alison Hadden is a marketing executive, veteran speaker, lifelong adventurer and cancer warrior. A @tedx_official speaker with 15 yrs of experience engaging audiences on stages across the world, Alison is now excited to share what she believes is the most important information of all – how to live an intentional life focused on human connection, joy and gratitude through her work at @notimetowasteproject.