Most newly diagnosed cancer patients do not know when to get a second—or third—opinion.
Inundated with information, patients generally find comfort with, and immediate trust in, the oncologist sitting in front of them. Often patients are already going through a roller-coaster of emotions: anxiety, fear and the onset of depression among others. The last thing that comes to mind is requesting a second set of eyes and ears for further case reviews.
When I was diagnosed in 1991 with incurable chronic lymphocytic leukemia (CLL) and a seven pound spleen, it was a pretty straightforward diagnosis, if not a grim prognosis.
I was a young man with an older person’s disease. My marrow biopsy was reviewed by a top pathologist at George Washington University. There was a somewhat effective standard of care regimen in place. I felt in good hands.
But my local oncologist, a seasoned physician, suggested I get a second opinion, mostly because CLL is a relatively uncommon disease for a 28-year-old. He referred me to a leading CLL clinician scientist at Dana-Farber Cancer Institute in Boston.
Getting a second opinion for many cancer diagnoses, regardless of stage and grade, is critical. For advanced disease, and rare tumor types, it is absolutely imperative. And there is no better place to be seen than at an NCI-Designated Comprehensive Cancer Center.
NCI-Designated Cancer Centers
From the NCI website:
“The NCI Cancer Centers Program is one of the anchors of the nation’s cancer research effort. There are currently 69 NCI-Designated Cancer Centers, located in 35 states and the District of Columbia, that form the backbone of NCI’s programs for studying and controlling cancer. At any given time, hundreds of research studies are under way at the cancer centers, ranging from basic laboratory research to clinical assessments of new treatments. Many of these studies are collaborative and may involve several cancer centers, as well as other partners in industry and the community.”
Out of these 69 NCI-Designated Cancer Centers, 47 have a higher level designation as an NCI-Designated ‘Comprehensive’ Cancer Center. If possible, be seen by one of these institutions.
Three core reasons why those diagnosed with cancer should seek an opinion at an NCI-Designated Comprehensive Cancer Center (NCICCC):
- The leading minds for your particular disease (physician-scientists) are found within the network of these academic-based centers. These are folks dedicated, day in and day out, to your specific disease. Do the research to seek out the expert(s) closest to you.
- Regardless of where you are treated, get on record as a patient at an NCICCC so that you can be followed. This way you can be monitored and chronicled within an academic institution. This establishes you as a patient of record and puts you just a phone call away from getting the help you need.
- Within the NCICCC network you will be kept up-to-date with new scientific findings and trials specific to your disease type. This is a huge distinction because not all community cancer centers and individual oncologists and hematologists can keep up with the large volume of research and new trials related to your situation.
Treatment at Community Cancer Clinics and Medical Centers
Though all NCICCCs treat disease, it may not be practical for patients or their families to obtain treatment within these settings. Patients need to balance getting the best possible care with the most comfortable environment and least disruption. For many, that means getting treated close to home so as not to give up the comforts of day-to-day life,
One of the best things about getting diagnosed and staged at an NCICCC is that the patient’s local managing oncologist will be in communication with his or her academic physician, and most often follow exactly what has been suggested as the best treatment course and schema for that person’s unique cancer.
Twenty-five years ago I was fortunate to get matched with my long-time oncologist, Dr. Lee M. Nadler, at Dana-Farber Cancer Institute (DFCI). DFCI is a Harvard teaching hospital and an NCICCC.
I still periodically see by Dr. Nadler, now a Harvard dean and courageous investigator who also heads one of the largest NIH-funded labs. Today, Dr. Nadler is in clinic once a month and maintains a small panel of patients.
Over the years, when I’ve experienced setbacks, I’ve reconnected with DFCI. It has been essential to have my disease course chronicled through the Harvard medical system and an NCICCC.