If you get diagnosed with cancer, what are the very first questions to ask of your treatment team?
1. Should I have Proton Therapy?
Like many things you see online, the first words and headings are designed to grab attention. This headline is like that in a way because the answer is so unexpected, but when I realized that I thought this was accurate, I wanted to write out why.
So I’ll explain below why this is correct. Even as a Radiation Oncologist, this seems like a crazy question to ask to attempt to measure quality, but I’ll show below how well it represents a marker for excellence in cancer care. You can like protons or not like protons, but it is a staple at the top institutions.
So I’m an engineer and I like data and I also believe that patients struggle to measure quality. Below we’ll walk through why this is probably one of the absolute strongest indicators of cancer care that you can ask. It certainly is also written to grab you attention, but below we’ll look at what it does do. It is probably less crazy than you think.
Of course, there are other very good options and I’ll list a few that I think are very good.
2. Is my treatment center a top 20 US News and World Report Cancer Center?
Those are excellent places – nearly everyone agrees – they make up “the” cancer institutions. Not perfect for everything all the time, but really excellent providers of cancer care. These are physician rankings and they really do represent top quality care institutions in the specialty of cancer care. I’m biased. I trained at the top listed one and, while the list isn’t perfect, it’s a pretty solid answer as “the gold standard”.
3. Is my treatment center an NCCN Member institution?
NCCN – the National Cancer Care Network, is an alliance of 28 cancer centers that form what I think is the most important “standard of care” document in cancer care. These are top tier places as well and deserve credit for their work on creating and maintaining the NCCN.
The sad part is even though these questions generally generate the same institutions (which I’ll show below), proton therapy isn’t often portrayed by non-providing institutions or insurance carriers as something good to have.
The other two questions are well established and uniformly accepted as markers for excellence. No insurance carrier would ever uniformly deny treatments at these centers broadly. That would be crazy talk, but they often do it for proton therapy. Now let’s look at my question and just show you – 1) how well it works, 2) how ironic it is that I can even make this argument in today’s environment where almost all patients with private insurance struggle to gain access to Proton Therapy.
Analysis of the 3 questions:
The US News and World report by definition is capped at 20 provider institutions. So we’ll list those below. Today, both the NCCN has 28 institutions and proton therapy has 31 (as of the last week or so) provider institutions. If you use the US News and World Report as your baseline, by definition, it will be 100% accurate. So below we’ll overlap the remaining two questions.
US News and World Report Top 20 Hospitals: (Bold are NCCN institutions. * represents proton therapy at the center)
- MD Anderson Cancer Center*
- Memorial Sloan Kettering*
- Mayo Clinic Rochester*
- Dana-Farber/Brigham and Women’s*
- Cleveland Clinic
- Johns Hopkins*
- Seattle Cancer Alliance*
- H. Lee Moffitt
- University of Pennsylvania*
- Mayo Clinic – Phoenix*
- Massachusetts General*
- University of Michigan
- University of Iowa
- Wake Forest
- Ohio State
So if you look at the top 10 facilities – NCCN duplicates 9 and proton therapy duplicates 8 of the facilities.
If you look at the top 15 facilities – NCCN has 13 of the top 15 and proton therapy is available in 13 of the top 15.
Note: Stanford – protons not good enough. Investing in a fancier, more expensive particle accelerator but clearly believe in the “hype”. 🙂
The crazy question of “Should I have proton therapy?” actually holds up well.
In total, you have 3 criteria that pairs down the national landscape into about 50 top tier institutions. Depending upon your cancer and your needs and your locations, I think these end up offering very high quality care and techniques and protocols that simply aren’t available at other institutions.
NOTE: I’m biased. I was blessed to train at one and now help lead a proton facility. So I’m clearly biased but measuring quality of care is difficult and I can’t think of another question that begins to compete with these 3 that are easy and accessible questions that you could ask the phone operator of the facility that you would call to help measure quality. If you are cared for at a facility that falls into any of these three questions, you’re very likely getting some of the best care available in the US today.
Dr. Mark Storey MD
Medical Director, Oklahoma Proton Center
Amended July 18th – Cleveland clinic website, to me, acts like they have Proton Therapy and I didn’t catch it. Stats and asterisks are updated.