Specialist shortage issue for NET patients

Becoming a NET cancer specialist who meets the Carcinoid Cancer Foundation's criteria is tough. Kim Perez works with NET cancer patients at DFCI. She isn't listed at CCF, yet. But she will be.

Becoming a NET cancer specialist who meets the Carcinoid Cancer Foundation’s criteria is tough. Kim Perez works with NET cancer patients at DFCI. She isn’t listed at CCF, yet. We need more young doctors like her to choose NET.

See a specialist

Veteran NET cancer patients and advocates in support groups constantly tell new NET cancer patients they need to see a NET cancer specialist. We also frequently tell them going to an NCI cancer center with a formal NET cancer program that offers a team approach should be a priority as well. Advanced NET cancer treatments can involve not only an oncologist, but a surgeon, a liver specialist, and a radiologist, as well as other doctors in a variety of specialties.

…there is a very real elephant in the room…

Finding a NET cancer specialist requires one click on the computer. The Carcinoid Cancer Foundation (CCF)  maintains a list of recognized specialists on its site. That list also includes non-specialists with a strong interest in NET cancer who work well with specialists, as well as cancer centers that meet their very strong criteria.

We have few specialists

That’s the good news. The bad news: the list of doctors, including the non-specialists in the US, has only about 100 names on it. Fifty-eight of those people meet the criteria CCF sets for specialists. They list only six NCI cancer centers with a NET cancer specialty.

…see a NET cancer specialist.

The criteria for being listed as a specialist are pretty stiff: 10-20+ years treating NET cancer patients; 10 NET cancer papers, authored or co-authored; a minimum of 100 patients treated. Some very good NET cancer doctors may not have the years or the papers or the patients yet to make the list of specialists. Some may even be among the 40+ other US doctors on the list with some NET cancer interest or experience. The list also includes overseas doctors by country.

What the numbers mean

But even if we include everyone on the US list as a specialist, those doctors would have to handle a caseload of more than 1700 patients a year. Cut the number back to the list of CCF recognized specialists and that number jumps to over 2900 patients for each doctor.

That’s the good news.

Simple truth: We don’t have anywhere near enough NET cancer doctors for the number of patients we have. In the best, insane, semi-workable scenario I could come up with–worst case, for doctors–a NET cancer doctor could handle a caseload of about 600. This assumes seeing patients five days a week, and an average of one visit per patient per month. It includes no time for research or detailed review of patient records. Nor does it include time to review research done by others or visits to patients in hospitals. I didn’t give them vacation time either. Even so two-thirds of patients would not get to see a NET specialist regularly–or at all.

Research reality

Reality is significantly different. Recommendations based on actual research argue for a patient load for oncologists of 250-350 patients per doctor per year. Given the nature of NET cancer, I’d argue the 250 is likely more reasonable than 350.

…over 2900 patients for each doctor.

Frankly then, we need at least six times as many NET cancer specialists as we currently have just to service current patient levels. Given the rapid growth of NET cancer cases since 2010, that situation will only likely get worse. I don’t know where to begin to look for the doctors we need to fill the current gap. I have even less idea how we fill the potential gap if doctors are right about the possibility of 250,000 undiagnosed cases currently in the US. I don’t want to think about my own private worst case scenario.

NET cancer centers?

The situation for NET cancer centers may be even worse. If every NET cancer patient went to one of those six listed NCI cancer centers to seek treatment, they’d face a sea of more than 28,000 individual patients. Each center would require 100 or more NET cancer specialists or specialists-in-training, depending on what we decide is a reasonable caseload. And never mind the number of other specialists we’d need to support a team approach.

…we need at least six times as many NET cancer specialists…

The number of specialists required to staff a NET cancer department for one of those six centers would require nearly four times the total number of doctors in the Dana-Farber Cancer Institute’s entire gastrointestinal cancer department. I know there are other NCI centers with NET cancer programs that are not included on the CCF list. But even doubling their list–or tripling it–still makes for an unmanageable situation.

Problems for patients

Nor do I want to think about the travel hardships many patients would–and do–face to get there. Commutes of 800 miles or more are not uncommon among patients seeking cancer centers now. When urgent diarrhea comes in the middle of such a trip… Jane and I only traveled the 60 miles to Boston and back and frequently had this issue.

…a sea of more than 28,000 individual patients.

Patients need less distance to travel. We need to create many more NET cancer programs at NCI cancer centers within convenient driving distance for patients. But we don’t have the specialists to do that any more than we have the numbers to fully staff the number we have.

What do we do with this elephant?

Many of us are rightly focused on doing the basic scientific research and finding and testing treatments. Others, also rightly, concentrate their efforts on educating doctors, patients and caregivers. Still others work diligently to find the money to fund those things, also a real necessity.

Patients need less distance to travel.

But there is a very real elephant in the room we need to consider as well. Knowledgeable NET cancer doctors, nurses and medical centers are in critically short supply. Given the rapid growth in the patient population, it is a problem we must address–and quickly.


Posted by walking with jane on November 8, 2017

2 responses to “Specialist shortage issue for NET patients”

  1. Ronny Allan says:

    the geography in the UK is different and we tend to focus on the “Center” model and 50% of our centers (called MDTs) are ENETS accredited. I do sense the issues you discuss above in my own international community, not just in US but in many other developed countries and of course there are countries with no NET expertise at all!

    • Geography is certainly challenging in the US in ways it isn’t in the UK–or the rest of Europe, come to that.

      And while I’ve argued for certifying NET programs here, people tell me it isn’t likely to happen.

      The numbers are what worry me. We don’t have enough doctors now–and we aren’t adding them at a rapid enough pace. What if this rate of increased diagnoses continues? We rely on patients going to patient conferences to educate their doctors. That may be a model that works for a relatively small cancer, but I’m not sure it’s a good idea for numbers much larger than we have now.

      We need robust in-service training for PCPs so they have a better idea the disease exists and know what tests to order to confirm or rule out its presence. We need more specialists and specialists-in-training. We have certification programs for other specialties, maybe we need to think about one for NETs.

      This is one of three areas in which I plan to focus my efforts for the next three years. I’m writing about that shift in focus later in the week.