Have we made great strides in cancer research and treatment? Yes. Are folks getting the care they need? Maybe not.
That is the lesson learned from recent experience helping some cancer patients in their journeys.
Our ability to treat cancer has advanced, but if people don’t get the right care or understand their care or feel capable of participating in their care are we really doing the best by them in their times of need? I don’t think so and I hope you would agree.
Let me offer an example from real life (and I assure you there are others!!!):
An older patient is found to have disseminated lesions consistent with widely metastatic cancer. They are told—without benefit of a biopsy—that they had cancer and treatment with immunotherapy was going to be started, never mind that no tissue diagnosis had been made to find out the type of cancer.
The family sought additional advice, the available information was reviewed, and a prominent lesion in the lung was noted. A needle biopsy was recommended and done, and a diagnosis of lung cancer was made.
Normally at this point, one would expect that genomic studies would be ordered. After all, a surprising number of lung cancers have certain genetic abnormalities that allow the use of targeted therapies specifically focused on those alterations. And, if no “actionable mutation” is found, then combination chemotherapy and immunotherapy would be appropriate.
Well, much to my surprise, those genomic studies were not done. And once again, immunotherapy was recommended—without chemotherapy because of the patient’s age (they are very functional, by the way). And here is the problem: immunotherapy for lung cancer is specifically NOT indicated in such a situation unless the genetic markers are done and no targeted therapy is identified.
So back to the drawing board: order the genetic study for gosh sake. It was ordered, and once again a problem: the wrong study was sent, looking at only a single genetic marker, not the available panel of many such markers. And it was negative. Once again, the family was advised to get additional studies and a genetic panel using a blood test was sent.
You can probably guess where this is headed: the blood test turned up an uncommon mutation for which a targeted therapy did exist. Treatment was started.
Here are the lessons:
- Perhaps the patient’s age influenced the decision-making process regarding diagnosis and treatment selection, but that should be up to the patient and family to decide, not just the physician. Patients and families have the right–yes, the right–to make decisions about what procedures and treatments are correct for them given their particular wishes and desires.
- Second, no one took note of the lung lesion. Getting a definite tissue diagnosis is critical to managing cancer care, especially if this is a lung cancer. And since lung cancers have a high frequency of actionable, treatable mutations, that makes a real difference.
- Third, the pathology lab—at a teaching hospital in a major city—failed to send a “standard of care” genetic panel, and the information they received was not adequate to guide this patient’s care. (Actually, this continues to surprise me.)
- There was the willingness to use immunotherapy without the requisite genetic study.
- Finally, a back-up blood panel was sent—which in lung cancer is within the standard of care—and it turned up a genetic abnormality that made a difference in treatment selection.
One can only imagine how things would have turned out had this family not sought additional advice. Nothing described here is rocket science; it is not information limited to the stratosphere of dedicated researchers. It is standard, everyday oncology practice.
Getting biomarkers on lung cancers isn’t new. We have known about the importance of biomarkers for several years. We know they make a difference in the treatment of lung cancers. We also know—as you can readily see from the “patient information” webpages of the immunotherapy drugs approved for the treatment of lung cancer–that immunotherapy is only indicated if the biomarker tests are negative. Yet too many folks don’t have the biomarker genetic tests done, and their treatment may not be the best treatment in that situation.
The question remains: how often does this occur? After all, lung cancer is common and unlike years past when it was uniformly fatal we now have several approaches that can lead to long-term quality responses to treatment and in some cases cure. The answer, sadly, is too often. And how would the typical patient and family have a clue if they don’t get that additional opinion?
Many cancers are much different diseases today than they were a decade ago because of new approaches to treatment. However, all the things we know won’t make a difference if they don’t get to the patients who need them.
We need to make certain, using whatever tools, technologies and systems we should have available today, that we can assure patients with cancer and families that their care is the right care for their circumstances at the moment they need that care.
After all, we need to act as though their lives depend on it–because they do.