You can't win 'em all! (But I didn't lose either...)

Hello friends,

I'm here trying to be better about passing on news when I get it instead of needing to have a whole essay worked out about my response to it. I saw the oncologist at Penn today to hear about the results of my scans from Friday and they are not as bad as I feared, but not as good as I hoped. I'd had a bad feeling about this one, which you certainly can chalk up to my general tendency to hope for the best but prepare for the worst (a trait that has a lot of downsides but which does, in a funny way, give me a fundamental confidence in my ability to cope), but which may also have to do with my subconsciously knowing things about my own body. But that's getting ahead of myself.

The results were positive in that, in all but one location, there was no change. The cancer did not move to any new locations and, in the metastatic sites, it all remained unchanged The only change was in the initial tumor in the breast, which had grown by 1 cm. Guess which part of this news I'm focused on?? Especially since, for a few hours, it wasn't clear to me or my doctors that I would be able to stay in the trial.

Let me say first that my team at Penn is amazing and they have done everything possible to get me information about my results as quickly as they can, as well as to work around my schedule to make visits easier, help me with my travel plans, etc. They gave me hugs of joy, when I had my first great news, and of relief, today when I did learn that I could keep taking the PARP inhibitors for at least another 6 weeks. I do very much feel that we're all in this together and I trust them implicitly. That's another reason why I'd hate to leave the study (aside from how few choices I have if I do). 

So, the situation was that they had seen my results and wanted to go into a meeting with me, where we were going to discuss them, knowing whether or not I was staying on the study (especially so that if I wasn't they could make sure I knew I had options). But the right person wasn't calling them back. So I was there and waiting and, when my usually prompt team didn't show up for 1.5 hours after the meeting time, I knew something was wrong. I felt it. They came in and told me that they'd take me through the results, but that we all had to wait in real time for the study coordinators to call back and let me know if that much more cancer was too much more cancer to keep taking the drug.

I've had a lot of people ask why it is that I have to leave the study if I "progress" (again, remember that for cancer "progress" is bad...it's the disease that is progressing and succeeding in its purpose, not you, who are trying to thwart it). The answer, I think, is that experimental design for cancer clinical trials protects patients by requiring them seek and assess other options if the disease is getting worse on the trial. They don't want any patients sticking around on it without knowing definitively that there is no better option. (It's also self-protective against lawsuits, I assume.) So the fact that they "kick me off" isn't because they are cruel, but because they want to make sure I'm not only free to choose another option but actively made to look into it.

The question my doctors and I (and the wonderful friend who was there with me) were waiting for an answer to was whether 1cm of tumor growth constituted enough progress to mean I had to leave. They decided it did not. It was a 12% increase and so much else had not changed that they determined I still had a "partial response" (that's a good thing) to the drug. So I get to try again for another 6 weeks before another set of scans and another decision point at which, perhaps, nothing will have changed or, perhaps, too much will have changed and I'll leave the study.

It's emotionally exhausting. I'm totally drained. I doubt I'll get rid of the mounting anxiety of these next 6 weeks either, particularly with the canary in the coal mine of this tumor (which is huge and easily visible just to the naked eye) to watch and prod and assess. I had thought it was getting worse. I was right. Did I know because I was so familiar with its size? Did I know because of intuition? Or some set of signals that my body was sending that I wasn't even aware of receiving or processing but did? I don't know. 

What I do know is that I have so far been uncannily accurate about what news to expect, excepting that fact that I was blindsided by being Stage 4. I felt as a fact that my tumor was cancerous from the point at which I called my doctor on. Every new set of MRIs and tests I expected to bring bad news and they did. I was sure the chemo wasn't working and, mostly, it wasn't. And yes, you could say that I was just expecting all the worst and then it turned out to be true. But I also knew with almost total certainty that the PARP inhibitors worked the first and second times...and that they hadn't worked this time. That's less predictable and, I don't think, entirely dependent on my mood. I suspect there are signals I'm sending, receiving, assessing, and internalizing from my body without ever knowing in any conscious way, a fact which fascinates me.

I need to head to bed since it's been a tiring day. But I was sure you'd want to know. Right now I'm not feeling great about the news, but perhaps when I process it more I'll see more of the good. Thank you for reading.

Love,
Rebecca

I Will Never Be Well: Why Good News is No News

I’m sure you’ve been wondering why I haven’t written in a while. Part of it is that I set myself a very high standard at the beginning and now feel that anything I write has to be lengthy, meditative, and circumspect. I’ll try to get away from that, so that I can share news when I feel I have any. That is, however, only part of it. The other, more substantive reason that I have for not sharing is that my last scans (on September 27th) showed good news. Although the initial tumor didn’t get any smaller a couple other ones did and—the real news—nothing spread or got bigger.

That’s great! Why didn’t I share it? Precisely because it’s great. Those results were really only the second time I heard anything like good news and part of me is filled with the fear, or even the certainty, that good news is in short supply and that I’ll run out soon. I don’t want to spread it too widely because I don’t want to get anyone’s hopes up, including mine.

I have actually found myself annoyed by people’s celebratory, relieved reactions to the news that the clinical trial has been working. “Sure it is,” I think, “but for how long?”. The truth is that nothing will work forever. The median time during which patients on the forerunner of this trial (those with BRCA germline mutations) saw improvement was 8 months. I started this trial in July. Even if I’m average (which, let’s remember, I haven’t been at any point in this entire process), that means timing out in March. (Happy birthday to me.)  

Now, I might be exceptional in the other direction. There are people on PARP inhibitors who have been stable for 3-5 years. That would be amazing. We can hope, and hope is certainly worthwhile. But the fundamental truth is that good news that I get is only good in context. And the context is still pretty terrible. I feel like people either don’t know that (not everyone has such an extensive and intimate understanding of cancer) or allow themselves to forget it (a luxury that they’re permitted).

The result is that I feel that, with very few exceptions, no one understands that I will never be well. I will never be normal. I will never not have cancer. This is what it is to be stage 4.

I had the opportunity a couple weekends ago to attend a pair of events at the Dana-Farber clinic in Boston, both specifically for unusual patient demographics that include me. The first was a summit for women under 40. The second was an entire day devoted to research into and strategies for patients with metastatic breast cancer. Both were well-attended—I’d guess 200ish people at each—with very little audience overlap. And, among those four hundred or so women, I still did not meet anyone who has my triple-word score of bad luck: under 40, stage 4, triple negative.

Because of this, even in the breast cancer community, even in the company of people I know do understand certain aspects of it in intimate, painful detail, I feel isolated and often experience empathy fatigue. Women at the first summit were at all stages and many were survivors. It was great to see so many people at my rough life stage who were coping with a variety of problems entirely different from those who are older, but I still felt like I didn’t quite fit. Because in this demographic, the stage 4 (also known as “metastatic” or “mets”) representation was pretty minimal.  

It makes sense. Typically, younger women’s cancer is caught earlier, informed as they are about early screening based on a family history or genetic predisposition. In addition, most stage 4 patients do not start out that way, instead experiencing the progression of the disease from an earlier stage at a limited point in the body. (And, if you’re still counting, this is a fourth thing that makes me statistically unusual: having a de novo metastatic diagnosis. I met one other woman who was stage 4, de novo, and under 40 and, while not triple negative, she also wasn’t married and didn’t have kids. I need to hang on to her.) Consequently, most stage 4 patients have been dealing with cancer for years already and tend to be older.

And also, of course, metastatic cancer patients tend to die. 

I can’t see any of you, but I can still feel you cringe at that. I’m not usually so blunt about it because it’s a harsh reality. But it is reality. We’ve moved beyond the stage—wonderfully, with incredible work and fascinating science—where, at least for breast cancer, “stage 4” equates to “terminal.” It does, however, equate to “incurable.” I have an incurable disease. And, the way things look right now, I will eventually die from it.

Now, don’t anybody say anything about getting hit by a bus, please. When’s the last time that actually happened, for one thing, and, for another, while many things are possible some things, like my life being ended by cancer, are more probable than others. We can hope it’s very eventual, or that circumstances change profoundly. The goal for metastatic breast cancer is to transform it into a chronic condition that can be maintained and controlled and, particularly for young women, be part of a long and relatively normal life. As normal as it can be with the constant, gnawing anxiety, punctuated by moments of terror at the idea that the treatment will stop working and that the cancer will grow again and that, maybe this time, they won’t find something to halt the progress.

This brings in the third rare group that I’m part of (one which doesn’t have its own summit): women with triple negative breast cancer. If you’ve been taking notes you’ll remember that this means my particular cancer cells don’t have any of the three receptors on them (estrogen, progesterone, and HER2) that open up other treatment options, like hormone therapy and Herceptin. I learned at this conference that only 15% of breast cancer is triple-negative. Multiply that by the odds of being under-40 and stage 4 and it’s…well, it’s apparently less than one in four hundred people, based on my experience. And I can’t help but feel bitter about that, try as I do to remain optimistic overall.

There is no “good” kind of cancer. (Not even “the kind that happens to other people.”) But, truly, there is a hierarchy of types and, within each type, a hierarchy of curability or treatability and, within that, a hierarchy of the ease of those things. Breast cancer is a better type than some (leukemia; lymphoma; pancreatic), well-funded and thoroughly researched. But within those parameters, I’m in the worst of the worst position. Most of the treatments that allow stage 4 patients to control their cancer involve hormone therapy and Herceptin, neither of which will work for me. Most of the new, promising research (aside from the study that I’m in right now) has to do with immunotherapy involving PDL1 – a protein on the cell surface that I don’t have.

So even though the generalities we speak in give reason for optimism, even at stage 4, for me all the particulars are pretty dismal. Yes, we hope that the treatment that’s currently working keeps working for a really long time. Yes, part of what I hope (intend!) to do is to stick around long enough for the science to get even better, for them to (for example) find other proteins on the cell’s surface that function like PDL1. For antibody-drug conjugates to really take off. For something as yet unknown to be discovered. I believe very deeply in the power of research medicine and it does give me hope. I’m always hoping.

Hope is the thing with feathers, but sometimes they get to looking pretty bedraggled. It’s easy to understand why I feel like, if the PARP inhibitors stop working, I’ve pretty much lost my only shot. Remember how chemo didn’t do anything? How my tumor got bigger and the cancer spread to my liver? Doing that again, looking for another clinical trial, and hoping that the science moves fast enough for me is all I would have if I had to leave the study. Which I’ll find out about in the next 10 days, as I check in for more scans on November 8th and hear results on the 11th or 12th.

So what’s the right balance between celebrating the good news—news good enough that after my September scans my oncologist swept me up in a hug—and remembering that, even in the best case scenario, my life will be filled with treatments that are long and painful and only effective for a limited period of time? And what about you all? How do you support someone through that? Do you choose optimism that can seem to miss the point, even coming off as naïve? Or a tempered realism that may seem not to offer enough enthusiasm to match a full understanding of the significance of good news?

I’m not able to give you an answer. The best I can do is try to give you some idea, through posts like this, what I’m facing and what’s going on for me, even when the news is good. But I will also try (when the news IS good) to share that information more widely. Because even a limited amount of good is, in a situation like this, worth celebrating.