Hwæt: I’m Waging a Campaign

Hwæt. We Gardena in geardagum,
þeodcyninga, þrym gefrunon,
hu ða æþelingas ellen fremedon.
So. The Spear-Danes in days gone by
and the kings who ruled them had courage and greatness.
We have heard of those princes’ heroic campaigns.
(Beowulf, trans. Seamus Heaney)

[I’m archiving this, from March 11th on CaringBridge]

Hello friends,

This is an introduction and update on how things are going with my breast cancer. I’ll do some cross-posting, but most updates will be on CaringBridge. Thanks for all the good wishes and the gentle hellos and the positivity. It has been sustaining and I am lucky in my friends and family here. 💜💜💜

(Author’s note! This is a long post with a fair bit of technical stuff that I find fascinating but don’t expect you to. It’s just hard to know how to catch you all up without going into detail but, if you like, feel free to skip to the last couple paragraphs.)

If you’re here that means you already know many of the basic info, which is that about 6 weeks ago I was diagnosed with triple-negative, metastatic breast cancer. It’s pretty nasty and aggressive and moved quickly from a large tumor in my left breast to my axillary lymph node to my lungs to the soft tissue next to my spine (with probable bone marrow involvement). It’s probably about 6-9 months old. I wasn’t looking for it since, at 34 with zero family history, I wasn’t even old enough for screenings. But genetic mutations come from somewhere and it looks like I am the mutation.

Is there good news? Not much. (Not yet.) The tiniest bit is that more aggressive cancers tend also to be more responsive to treatment. The fact that it’s triple-negative breast cancer (TNBC) means that the tumor is negative for the three types of receptors that can be used for additional therapies: progesterone, estrogen, and HER2. (A second test actually put my ER number at 20%…which sounds a little like me in general: although I seem very negative at second glance you’ll see that I’m about 20% positive.) It’s also negative for androgen. This means that the only potential kind of supplementary therapy that might help along with chemotherapy would be immunotherapy. I’m not a candidate for either surgery or radiation since the spread of the cancer is so pervasive and those are highly localized.

I haven’t started treatment yet. For these past weeks I’ve been in a really difficult phase of undergoing a lot of tests to determine the character, extent, and location of the cancer. This was a surprise to me (and to my parents, who came out to NJ immediately and who have been living with me throughout this process). I sort of imagined that when you got the cancer diagnosis–which I did on January 24th at 11am when I was sitting in my office filling out a performance evaluation for my job at Princeton–they’d rush you off to an emergency room where they’d start treatment immediately. I definitely didn’t anticipate having to schedule (a challenge in and of itself) and undergo so many tests and to have to wait, terrified, for each series of events. So far, this has been the hardest and worst part.

Being whisked off is more like what happens if your cancer is localized in the breast and associated lymph node. The big first question was whether the cancer was metastatic or not, which they found out with a CT scan that showed it, first, in my lungs. This was maybe the worst news of the whole thing because it meant that radical options to contain it (mastectomy, radiation) were out and that we had to do a bunch more investigating to figure out where the cells had hidden. There was a worry about my liver which showed a large mass that had been there since 2016 when I’d actually been tested for cancer–thanks to chronic fatigue and consistently elevated white blood cell counts–and come up clean. (Luckily the consensus is that the liver mass is benign since it “grew” only .7cm in 2 years, a possible measurement error.) This left the bone scan, which did show the tracer being absorbed, which led in turn to MRIs and a biopsy to confirm metastasis.

Every time I got a new result I learned that you really have to read the fine print when you wish to be exceptional. All of this is so statistically unlikely…and yet it’s true.

All-in-all I had two biopsies of three tumors (breast, lymph node, soft tissue next to the spine), two mammograms, two CT scans, and three MRIs. This is in addition to office visits and blood work. I began working with a medical oncologist at Memorial Sloan Kettering (MSK) in Manhattan which brought me back to the city more times than since I left after college. It was looking like the only possible treatment option was single-agent chemo. Most clinical trials for TNBC require that you have been treated first. (I have “de novo” metastatic disease, meaning it had already spread when they first discovered it rather than that it was treated locally but spread anyway.) Others require hormonal receptor positivity. The few I was eligible for were often not enrolling.

However, thanks to the tireless research efforts of my dad, we found out about a clinical trial at the Dana-Farber clinic in Boston that I am potentially eligible to join. It’s testing an immunotherapy agent that has already proved effective with TNBC with one chemo agent with a different one. (It actually just got approved by the FDA.) The only trick is that the way the immuno agent works requires that you have a specific protein (PDL1) to really see results. Essentially, one way cancer cells sneak around is switching off your immune system so it can’t “see” that they are invaders. The turning off of the immune switch happens with a protein bond involving PDL1; the immuno agent being tested blocks that bond so that the “lights” stay on and the cells can’t sneak around as easily. Clever! But if I don’t have the protein it’s not clear that either being in the trial or getting the now-FDA-approved treatment will benefit me more than single-agent therapy.

So that’s the test it’s all depending on right now. I should hear in the next couple days. If you want to send positive vibes and wishes and make sacrifices to your god(s) of choice, do it for PDL1 positivity. I feel discouraged, since I’ve been negative for everything so far, but these are all independent events.

I am also waiting for genetic testing to see if this is a germline mutation–like BRCA–that I inherited. This might affect future treatment and, if I did have one, could be good news because BRCA1 and BRCA2 are very heavily researched…in fact, when I worked in breast cancer research at Wash U Med School I was working with the BRCA lines. (For those who don’t know, I started college wanting to go to med school–or at least get a PhD in genetics–so I spent 3 summers between age 16 and 19 studying breast cancer. It’s equipped me well to have these discussions, though I certainly imagined being the doctor rather than the patient.)

There are three treatment options that I will (hopefully, hopefully) finalize soon.

1. I will have the PDL1 protein and will enroll in the clinical trial at Dana-Farber. This will require traveling to Boston every 3 weeks for intensive assessment and new rounds of chemo. The agent involved will make regular life a little rougher since it’s by IV and only every 3 weeks. (And I might be in the control group, in which case I’d only be getting the chemo agent. I will, however, know which group I’m in.)
2. I will have the PDL1 protein and will receive the now-FDA-approved immunotherapy/chemo combination in Princeton with a local doctor and Dana-Farber only doing big-picture stuff.
3. I will not have the PDL1 protein and will receive single-agent chemo in Princeton, probably orally (twice a day) which is less intensively bad and more low-grade bad all the time. (There is, I guess, a kind of 3b. in which I decide to enroll in the trial even if I don’t have PDL1 but it seems less likely.)

So, if you are keeping track of the big decisions that will allow me to actually, finally, begin actively fighting against this that’s the last one. I appreciate all the notes that you’ve been sending so far. I get “message fatigue” but I see all of them and, in fact, have been saving all of them to look back on when things get even harder. So if you’d like to leave love and encouragement here too please know that I will see it and it will be helpful. I’m very unfortunate in this but incredibly fortunate in the number of people I have out there pulling for me and offering support.

Love to you all.