Living in the Shadow of Triple Negative Breast Cancer

Last weekend was my 3-year cancerversary. With each year that passes, my cancer experience moves a little bit further away from me, yet at the same time, it cozies up to me even more.

As time goes on, you’d think I’d feel further removed from it, but I don’t. That’s the cruel thing about cancer, it’s the gift that keeps giving. I live in what feels like a constant fear of recurrence. Some days and weeks are better than others. But some stretches are really bad. Like a python winding its way around my body, tightening it’s grip on me, slowly squeezing the life out of me. To understand what I mean, let me explain a bit about my subtype of cancer.

Triple-negative breast cancer (TNBC) is a subtype of breast cancer that lacks three important hormone receptors that are used as targets for cancer treatment. These receptors are important because they reveal where the cancer is most vulnerable and help determine how to best treat it. Since triple-negative breast cancers lack the presence of all three of these receptors, this subtype of breast cancer is more difficult to treat and more likely to recur. Triple-negative breast cancers have a relapse pattern that is very different from hormone-positive breast cancers: the risk of relapse is much higher for the first 3–5 years but drops sharply and substantially below that of hormone-positive breast cancers after that.

Doctors and researchers have yet to figure out what causes TNBC. So survivors like me undergo major surgeries and intense chemotherapy protocols in the hopes of killing the cancer and keeping it at bay forever.  Unfortunately, because our cancer is not hormone positive, we don’t get the mental safety net that is 5 to 10 years of hormone blockers. We don’t get to take a pill that we know is preventing our bodies from producing the hormone that causes our cancer.

PS – I know that taking tamoxifen (or something like it) is no walk in the park. I realize I sound a bit like a brat since I don’t have to deal with 10 years of hot flashes, mood swings, libido drain, inability to carry a pregnancy and a whole host of other crap. But please understand that having no ability to do anything to ensure my cancer doesn’t come back is a total mind fuck. All we’re told is that our survival rate will increase dramatically if we can make it to the 5-year mark.

I’ve no choice but to set my 5-year timer. Tick tock, tick tock, tick tock. Ugh.

In the months leading up to my cancerversary this year, I wasn’t feeling right. I was having a lot of trouble with my lungs, and a lot of swelling and pain around my ribs, implants and armpits. I put myself back into physical therapy to try and kick start my sluggish lymphatic system. But, the issues persisted. My lungs and my bones ached. And not in a “you have a new baby, all moms are exhausted” kind if way. No, no, they ached in a scary cancer kind of way.

I was winded, exhausted and becoming increasingly terrified I was having a recurrence or worse, mets. When I looked at my daughter, my brain wouldn’t allow me to see her grown up. It was protecting me from the possibility that I might not be here to see her fully grown up. The feelings were becoming crippling. I couldn’t fully enjoy caring for my daughter. I had to do something. Set my mind at ease once and for all.

So I got a PET scan 5 days before my cancerversary. I told very few people I was having the scan done because I was really scared the results wouldn’t be good.  I just had a premonition that my good fortune was running out. You see, I’m one of the lucky ones. I have a perfect, beautiful, healthy 9-month old daughter, who was born after cancer. I was blessed enough to be able to carry her to term and birth her into this world. It was the most incredible thing that’s ever happened to me. My life is back on track, right? I’m a new mom, with a new lease on life, right? Cancer is behind me, right? I survived this, right?

But why do I feel such dread and doom hanging over me?

This is what it’s like to live in the shadow of triple negative breast cancer. As I wait to make it to my arbitrary finish line where I might be able to breathe a bit easier, I wrestle with some serious PTSD.

Thankfully, the results of my scan came back clean. I’m still dancing with NED (No Evidence of Disease). Yay!

I feel like I’ve bought myself a few months without as much worry bubbling directly under the surface of my everyday life. Now, when I workout, I happily push my lungs to the point of burning because I know there are no tumors in them. When my joints and bones ache the next day, I don’t sweat it, because I know I don’t have bone mets.

Only 725 more days to go….. Wish me luck.

9 thoughts on “Living in the Shadow of Triple Negative Breast Cancer

  1. We are with you all the way. You will survive well for your daughter Nora Anjali. The cute smarty pants and a ham of a grand daughter for me.

  2. Andrea, thank u so much for sharing! My 3 year cancerversary is in 3 short weeks. I sooo appreciate every single word you said, about PTSD, about the fear of reoccurrence. My cancer was hormone receptive so I do get to take tamoxifen & yes, the hot flashes & infertility SUCK. Still, I’d prefer to have the insurance than travel your road, which much be terrifying. I underwent my 26th surgery last week, related to BC (I’ve lost recontrnstuction 2x). So yes!
    Cancer is the gift that keeps on giving! Your daughter is beautiful & im soooo happy your scan was clear. No wish u continued health & peace. Thanks for sharing your story. Carry on Warrior. Xo Jen

  3. Dear Andrea,

    I have never commented or written in your blog before. I would love to write to you personally though. I am in the exact same situation as you, with regard to the timing of breast cancer, after IVF, lump during transfer attempt, similar age, work, treatment, Asian parents, doctor dad etc. I’m not TNBC but otherwise, it’s rather uncanny. When I went through this last year, there were days I would read your blog again and again to tell myself I was not going insane and that I would make it. I would read the nth month, whichever correlated to my own timeline of treatment and recovery, and tell myself look how cheerful and well you became, I could be as cheerful as you, I would be as cheerful as you, one day. Often, your new posts were the most cheerful thing I read in the entire week.

    As time went on, I would experience things and think, hey, that’s exactly what Andrea said, that it was psychologically exhausting to go back to it’s-a-different-work-year, or hey, this is also my first wedding with the edges of social ackwardness, and this must be how she felt at insensitive comments like the “are you fully healed by now” question from the disappearing-but-gossipy-friend-who-just-texted.

    I echo what your Dad says, not in that you will be well for your daughter, but you will be well for yourself and because of who you are. Your wellness, and I mean that both physically (damn, don’t implants hurt- nobody every tells you before, that your sense of balance and body dimensions will change and everything from opening a tightly lidded jar to ice skating will feel abjectly weird) and mentally/emotionally, is an inspiration and strength to so many people, including those, like myself, whom you may never know exist, because it is a dynamic process, because you engage with it and because it is real.

    You’re right, tamoxifen is no walk in the park. While it is scary to not have some kind of preventative medication, you know that people recur on tamoxifen as well right? My world caved in, in the overwhelming, dark torrent of grief, continued grief, which is what happens when you are young and when this happens after a fertility battle- you would understand that it isn’t the mood swings, aches, hot flashes, the walking past supermarket aisles of sanitary pads (although there is all that), it is the children, the babies, the emotional pursuit or process of surrogacy, the cancer survivor moratorium of adoption. It is the chasing, the still-emptiness, the other cycle of wondering, which also doesn’t end. What would you have done, if your daughter and pregnancy had never happened and how much more the despair and anxiety?

    I have the same dread stretches and sometimes it does feel like the rest of the world lives a totally different life without PTSD. I know it can, at times, make absolutely nothing seem important, it can be crippling to basic functionality and sensibility. I often bristle when people use the word Brave because it wasn’t and still isn’t a choice, but I think you are so brave and so proactive. Like you said, there are increasingly days when you don’t think about it, but most days I feel that cancer has become so fused with my identity that I think about it all the time. Maybe that’s the way it was always meant to be.

    Despite all that, I often reflect that there are no words for how lucky we are. I’m confident that the resilience, the balance and the support that you have built on this journey will continue to sustain you and that the coping mechanisms for both you and I, whether it be getting a PET scan, exercise, half a Clonazepam, distraction, submersion, and just living and enjoying time, will at the end of the day, be a gift of deeper, more thoughtful, compassionate, more deliberate and meaningful lives. Hugs to you Andrea and deep thanks and love!

    • Weylin!
      Thank you so much for the comment, I feel like we’re soul sisters for sure! I’m so happy the blog helped you get thru your experience. The end of your note really rings true to me. I move forward in a variety of ways – many of which you mentioned – leaning on my community, always having lorazepam on hand (!), massage, exercise and a healthy dose of good old-fashioned fun 🙂
      In good health,
      xoxo,
      Andrea

  4. It is so difficult.. I remember for years thinking every ache or pain was cancer and wondering if I needed to go to the doctor… A couple of times ere big scares and I had scans done and thankfully all was clear … I am not sure when the mind stops thinking this way …

  5. Congratulations on your 3 year cancerversary! How scary to go through those scans while in pain. I’d be freaking out. But I’m glad that you’re still NED! How wonderful!

  6. Admiring the time and energy you put into your site and in depth information you offer.

    It’s nice to come across a blog every once in a while that isn’t the same old rehashed information. Fantastic
    read! I’ve saved your site and I’m adding your RSS feeds to my Google account.

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