Kidney cancer is the focus here, but I can’t resist writing about the empowered and determined lung cancer patients who changed the rules–the NCCN guidelines–in treating their cancer. With this, there is support for treatment for their newly established metastases which was previously lacking. Translation for the patient was, “It’s come back, so just go home. End of story.”
What does this mean for kidney cancer patients, or for others? For that matter what does “oligometastases” mean anyway?
” Oligometastases are defined as 1–5 distant metastases that can be treated by local therapy to achieve long-term survival or cure.”
Earlier, some doctors felt that there was no reason to treat a patient who was initially diagnosed with metastatic disease. If the cancer had already metastasized, nothing that could be done, not even the removal of the primary tumor. Oddly enough, patients often got no treatment and the self-fulfilling prophecy worked again.
We kidney cancer patients know better. (My 10cm tumor and the lungs full of mets would have NOT been treated by many doctors.) Removal of the primary tumor can have real benefit, even when there is no treatment for the metastases.
Similarly, the emergence of mets post-surgery was also seen as a “game over” by many doctors. The “got it all” surgery that was welcome news was suddenly a forgotten phrase. How many sad visits a year or two after of misplaced confidence? Kidney cancer will come back far too often, suddenly emerging near the old tumor or in some of the favored spots. With kidney cancer, that is the lungs, bones, adrenal gland and the brain.
These new mets, generally in the area of the primary, are those oligomets. Hard enough to say, and harder yet to be told that the docs will do nothing–because the guidelines say it is not worth it. That was the situation for non-small cell lung cancer patients with new mets.
But these cancer patients were NOT having that kind of non-help!
They gathered all the data, showed the value of going after these mets and convinced the NCCN to make significant changes in their guidelines. Now doctors and the insurance people cannot deny these treatments on the basis of these guidelines.
Patients helping patients, patients helping doctors, patients helping create better guidelines, patients living longer…might be a trend we can emulate.
LITTLE BACKGROUND:
Keep in mind that most doctors and insurance companies want to use treatment guidelines based on some acceptable medical standards. One guideline comes from the National Comprehensive Cancer Network. This establishes the working rules for what kind of treatment or monitoring is thought appropriate for any stage of cancer. For example, the treatment for a Stage I tumor is quite different from that of a Stage IV tumor. There are guidelines for shifting to new medications, and for monitoring of primary tumors or mets after surgery.
Since kidney cancer most often metastasizes to the lung, I monitor some of their sites, and was thrilled to see this. Power to the patients, people!
http://www.curetoday.com/community/tori-tomalia/2015/03/empowered-patients-change-national-cancer-guidelines
The lovely cliche, “We are all patients” is just that. At every medical conference, or in the new lobby of the hospital, that phrase is offered. While it is true in a statistical sense, it has a snarky sound to the new patient, reeling from his induction into the medical world, foreign and threatening. It can really seem snarky to those who know how poorly patients can be treated, how overwhelming the language of illness is, and how chaotic a hospital setting is for most.
The patient experience for someone who speaks the language, whose friend is a specialist, or can understands the imaging reports and lab values, is in stark contrast for those lacking such resources. Not much we-ness in those two patient groups!
Certainly the medical people who suddenly become patients, or are thrust into being a caregiver, can offer their own colleagues insight into those new roles. But rarely is the newly diagnosed patient, one who has never “known” how the system works ready to take on this role. He is often the patient at the greatest risk–especially when told, “Be your own best advocate.” Most of the time, that “Be your best” does not give the patient anything, but a reminder of how lost he is.
The recent convert to patienthood who can navigate the system may be a wonderful translator of the dialect and the cultural mores of that system, but with limited impact. If that medical pro turned patient is not also willing to change that culture, to be more open, to provide ready access to information, and to teach to the wider world, most patients will not be well-served by this new awareness. As a society, we will continue to be inefficient in our care of the sick, have poorer individual and community health, and waste incredible sums of money.
Patients could be given readable information about what the standard of treatment is for their disease. They can learn that the oncoloigst should recommend more frequent imaging, or that there are other treatments than the scalpel and chemotherapy. They can learn how to enhance their daily health, how to monitor side effects, to clarify their own health concerns. Patients can be guided to credible online resources or patient groups so they can ask the new question, compare notes, learn the changing vocabulary.
Doctors can tell patients that diagnosis is tricky and requires testing and feedback along the way. They can remind patients of the uncertainty and complexity of cancer, or a chronic disease. They can welcome questions about side effects, new studies, and treatment options. The dynamic will shift as the patient becomes more knowledgeable, or has greater medical needs, and the doctor must shift as well.
Patients and their providers need to partner with one another, with the patient at the center of all those relationships. The patient needs ready access to his records, information relevant to his needs, and an atmosphere of collaboration, appropriate to the moment. Anything less is damaging and wasteful, and we ain’t got time and money for business as usual.