Biopsy results, part 1

Friday morning I got a call from a 617 number. My phone was across the apartment and I nearly missed it. Out of breath I pick up the phone. HelloHi Ari it’s Caron… It was the Dr. from Dana Farber for my second opinion. She got the results through the automated ‘EPIC’ system. Wow I haven’t even connected with my own doctor about it yet. We talked for 30 minutes. Here’s the current situation:

First off she had some questions about the pathology report as there were some conflicting pieces or at least open questions. She recommended getting a second pathology report at Stanford (she reached out to a colleague there so we’ll see). Also they classified the resistant cells as ‘3a’ (called follicular) vs. the original ‘3b’. Essentially these are slower growing cells with a different profile, don’t ask me specifically how they differ as I’m not there yet. I’m still wrapping my head around what it means, exactly how many populations exist, etc. This likely won’t have implications for second line treatment but it would impact next steps if second line fails.

She mentioned that whenever first line treatment fails she gets concerned. I asked what percent of the time it fails, she said somewhere around 20-35%. But she also left the call emphasizing that I should feel like there is still hope and that I should remain optimistic. Even if it is follicular there have been lots of innovations in the past 3 years on this front. Specifically there is a new treatment called CAR-T which basically removes a patient’s T-cells and engineers them (by adding new genes that code for specific proteins) to recognize and attack the cancer. Of course this depends on what targets are available and whether the T-cells can be engineered against those, but I’m getting WAY ahead of things here. Anyway if this is follicular it seems there is no CAR-T option (at least not yet). So confirming the pathology report seems important assuming there is sufficient tissue to do that, another question.

The ‘good part’ about where things stand based on this opinion is that second line treatment is mostly standard and aligns with what I mentioned in a previous post: 2 rounds of another type of chemo; assuming that works it’s followed by high dose chemo (wiping out the stem cells) and finally an autologous stem cell transplant to repopulate the stem cells. This is still a ‘curative’ path with a decent chance of success. What’s decent? The second line treatment success rates seem to be somewhere in the neighborhood of 50%, maybe better (I’ve heard 50% to 80%) based on what the docs have told me thus far. By the way that means 20% to 50% failure rate. For folks aware of prospect theory (see the chart p.279) the latter framing is WAY more scary because we are loss averse creatures. Doctors are smart in focusing on the treatment success rates.

But regardless my anxiety level spiked after the call despite that it reinforced the likely path forward…or maybe because it confirmed it?….or maybe it’s reality sinking in that I’m signed up for at least 6 more months of treatment…or maybe it’s that having more details brings more mental overhead and uncertainty? Or perhaps the real issue stems from the overall trend that when I dig in on these conversations it not only confirms my own ignorance (that would be fine!), but our collective ignorance in treating this disease. We’re smart but still groping in the dark. For all the stats that get thrown around when it comes to making decisions we don’t get to average results over multiple treatments. We each have only one body.

I’ll discuss these results with my oncologist this evening. More to come…


Waiting for biopsy results (been here before)

I’ll get results as soon as tomorrow or early next week.

Meantime I’ve been getting second opinions setup. It’s time consuming. So far I’ve got a meeting setup with Dana-Farber in Boston. After some back-and-forth we agreed to do this by phone (it was originally supposed to be in-person). This will happen once the results are in. I’m also working on Stanford but this requires a referral from Kaiser that is not likely to happen (even if I’m paying out of pocket!). I’ve got low odds on this one happening in any reasonable timeframe as appointments are booked a month out. I’m hoping to be well into second-line treatment by then. Finally I’m also setting up an appointment with UCSF. Yesterday I had to drop off cd’s of my PET/CT results at the UCSF hematology center (yes, like by hand – it still works that way). I was struck by the contrast of gorgeous SF bay area views from the Parnassus campus against the cold reality that most folks in the waiting room were getting bone marrow transplants (masks required just to enter the waiting room). I appreciate these views – don’t get me wrong – they are stunning. But it almost feels like this sort of activity should all be happening somewhere else. Somewhere subterranean. That would better reflect my levels of comfort with the whole thing. It’s like view magnificence is inversely related to the gravity of the situation, to how mentally trying it is. It feels like a balm or numbing agent, much as I appreciate it. There’s a fighter’s mentality that can easily get lost in too much beauty, certainty and comfort. That mentality is required in situations like this.

Imagine something that stressed you out: those envelopes for college admissions that came in the mail (fat or skinny), waiting for exam results, 360 performance reviews, or getting on the scale each morning if you’re trying to lose weight. Or choose your favorite form of suffering. Then raise that feeling literally to the level of life and death; like poor test results equals “you live” or “you die”. It requires some adjusting. I could never get comfortable with fate coming to me in an envelope or a phone call. Usually one has an indicator of how they did, or at least how well they prepared for that exam. Here though, preparation is not related (or at best is least loosely connected) to outcome.

But our fate isn’t sealed! It rarely is. I find it helpful to think that the plinko chips of circumstance sometimes get nudged (sometimes hard) in a certain direction. How one deals with the circumstance is of equal or greater importance than the circumstance itself. We play the hand we’re dealt. I’m bracing my mind for bad news (good news takes care of itself!). No point in wishful thinking here. I’m nervous. But it’s not as bad as I might have thought. I’ve had some time to acclimate to this new normal. I’ve already absorbed some hard blows so I know what it feels like. That doesn’t make it easy. But maybe it’ll sting less.