Loose Strife

Laura and I met with her oncologist this morning to review her latest tests. Laura’s breast cancer marker went down again — it’s essentially in the normal range. This is good news since she hasn’t been on any chemo treatment, only a hormonal treatment that shuts down her ovaries. Better still, her PET/CT scan seems to also suggest no progression. It was particularly good to hear that the met sites did not appear “metabolically active,” which is apparently a finding of the PET scan. (Before this most recent scan Laura only had CT scans.) So the scans seem to suggest that she is stable, and since none of her neurological symptoms have returned, the cancer in her spinal fluid also seems stable. All very good news. But there are some caveats.
The bone metastases are still seen throughout her body and notably there’s lots of cancer in her lower back where she has back pain. We knew that, but a decision will have to be made whether to deal with that pain through pain management or to try chemo or radiation in hopes that the pain would reduce if the cancer regressed.
There’s a second possible compression fracture in the middle of her back.
And last, the radiologist noted that cancer in her spinal column near her neck could impinge on her spinal cord if it progressed, which is a worry. Laura has minor pain in her neck.
To address all of these, she’ll get another MRI on Thursday for a closer look at her entire spine. Most likely, nothing new will be found in the MRI and, after some discussion with the oncologist today, Laura and her doctor agreed that probably no new treatment will be added. Instead she’ll be monitored regularly for signs of progression.
It might sound a little counterintuitive to do nothing — nothing new, that is. In previous posts I had mentioned starting a new chemotherapy drug. Alternatively, she could retry Tamoxifen, a hormonal drug that didn’t seem to work the first time around, but was tried for only a short period. She could also aggressively choose radiation. She could even choose intrathecal chemotherapy (chemo injected directly into her spinal fluid). But all these choices have side effects — some minor, some not. If she’s doing relatively well, then maybe ride the wave. And if a careful watch is kept, then new options can be added as needed.
This is a little unconventional, but the truth is that there are very few young, healthy women with leptomenengeal mets and stable mets elsewhere who are in good shape four months after major neurological symptoms hit. (Truth be told, I actually have found one, and she is thriving after almost a year since her diagnosis.) The academic papers suggest treating the healthier patients with more toxic treatments. But pretty much everyone involved in these studies is experiencing severe neurological problems (headaches, inability to walk, confusion, hearing loss, and so on), so a lot of the treatment decisions are based on how to relieve pain and suffering. From a lepto mets perspective, Laura is currently asymptomatic!
As you know, Laura decided to do Whole Brain Radiation based on this conventional thinking. Now we wonder whether it was the right choice. It’s very possible that WBR has contributed to her overall well-being (i.e., it wasn’t just the surgery) or has kept recurrence at bay. However, it’s also possible that WBR had no effect on the lepto mets, but is the cause of her current fatigue. Nobody knows. Assuming one has the time, and Laura seems to have caught an unexpected break, maybe it’s better to be systematic: try new treatments in turn only as new problems arise.
Another insight into treatment decisions is recognizing the fact that in all likelihood the lepto mets will be her downfall. If that’s the case, then perhaps it’s wiser to hold off on bone mets treatments unless pain is unmanageable or to wait for whenever some other red flag that was raised appears to be a serious threat. Preventative medicine has become such a dominant paradigm that it’s difficult to convince oneself that a palliative approach is important to consider.
Ultimately it boils down to unknowns about survival and response to treatment. Nobody knows. But at least we do know we’re not too far out in left field in our thinking. Laura’s oncologist’s recommendations are pretty much in sync with Laura’s treatment attitude. Her onc said today, “for now, less is more. We can add later as needed.”
So for the last several days Laura’s been back on modest narcotics, mostly at night, to deal with pain. She got a referral today to see a physical therapist to help work out pain management and rehabilitation plans for her back and broken leg. If pain becomes a bigger problem, then she’ll consider radiation again. In any case, she’d like to avoid prolonged, high doses of narcotics because we know from experience that it is extremely fatiguing. We’ll get the MRI results next Tuesday. Besides all that, the big general goal is just to stay healthy: exercise, sunshine, fresh air, green tea, garlic, fruits and vegetables!