???
To be crystal clear, I am absolutely not saying I don't believe the data. Also, I think the point of the data is more about the CTC-CSF component than the radiation modality.
My larger point: it is my perception that for at least the last 10-15 years, a major focus of Radiation Oncology has been on cost. We have been accused, both from within and without, of doing things "just for money" because American medicine reimburses procedures highly, and each fraction of radiation is considered a procedure.
Our most "groundbreaking" clinical data in this timeframe has been the adoption of moderate hypofractionation or SBRT for common disease sites. It is either implied or stated outright that using longer courses, which costs more money, is bad. Concurrently, we have seen the rise of proton centers, which generally cost more money than their photon counterparts.
Ironically, a significant percentage of the work published on how "costly" radiation therapy is comes from PPS-exempt centers (that may or may not be very selective about which type of patients they take - try having Medicaid and going to Anderson), who derive, on average, significantly more reimbursement than other institutions and practices. Over the past couple years, the faculty at Sloan have been particularly visible in the "financial toxicity" space.
Leptomeningeal disease, especially leptomeningeal carcinomatosis, has a dismal prognosis. I think most physicians who work with patients with that diagnosis pivot towards best supportive care, as is appropriate. While, as
@communitydoc13 points out, there are therapies and patients which can exceed expectations, this is not the norm. Lepto often carries a prognosis of weeks-to-months. Even in this CTC-CSF paper with protons, median OS was 8 months in the best case scenario. Proton-based CSI for lepto is, by definition, "non-concordant with guidelines".
All of this culminates in a paradox on my Twitter feed: Sloan trumpets a paper decrying the inappropriate use of XRT at the end of life, then presents us with a paper using proton CSI for lepto within the same week.
I know it doesn't seem that way, but I actually like this paper.
That's not my point. What has "gotten me into a tizzy" is how hypocritical this all is. Sloan is held up as one of the best/most influential institutions on the planet. However, on a granular level, leadership is forced to resign after not disclosing millions of dollars in COI, or an active KOL in the GU space advocates the use of a gel after receiving $500k+ from the company making that gel, or a group publishes yet another paper about the evils of extended fractionation at the end of life while simultaneously another group from the same institution publishes another paper using proton CSI for leptomeningeal disease.
Individually at Sloan, there are a lot of people who I really respect and find their work excellent. On a macro level, the institution is driven by greed, and engages in publications and practices which has a negative effect on the rest of us. If physicians think using proton CSI for lepto is beneficial, then great, those physicians should practice medicine the way they think is best. However, please don't turn around and finger wag because someone else used 15 fractions on a bone met.
(note: I personally don't use protons for lepto or 15 fractions on bone mets, and am not advocating for either)