
Location, location, location. It’s the number one rule in real estate and a common refrain sung by agents and choosy homebuyers alike. But it should also be the mantra for people with cancer. They rightly expect to receive the latest and greatest treatment options, but all too often overlook the importance of where they get it.
The United States offers the best cancer care in the world. But there is no guarantee that all Americans who need superb cancer care actually receive it. That’s because there are significant differences in cancer care between cancer centers. People treated in one place may not live as long as they would have had they sought treatment elsewhere.
Today, about 85 percent of cancer patients in the US are treated in their local communities. This works out for a lot of them. After all, many people have cancers that are relatively common, with treatments that have become so routine, so standardized, their chance of kicking it is pretty good — no matter where they seek care.
But for those of us faced with a rare or aggressive or hard-to-treat cancer, where we get treatment can become a matter of life and death. If you need surgery, for example, you’ll likely have better success and develop fewer complications at a medical center that treats many other individuals with your same kind of cancer.
A new study focusing on the medical management of multiple myeloma, the same blood cancer I have, adds to the knowledge base that patients treated by experienced physicians fare better. It compared survival rates among patients with multiple myeloma treated at centers with different numbers of patients with this condition. Compared with centers treating just 10 or fewer patients per year, centers that treated 20, 30, and 40 patients per year had approximately 10 percent, 15 percent, and 20 percent lower overall mortality rates during the study period. This held true even when researchers took into consideration sociodemographic and geographic factors and whether patients had other conditions that could affect their health.
While not particularly surprising, these data are troubling when considered in a larger context of just how rare myeloma is compared to, say, breast cancer or prostate cancer. This year, about 30,000 Americans will learn they have multiple myeloma, a disease for which there is no cure. (That’s less than two percent of the nearly 1.7 million Americans who are expected to be diagnosed with cancer this year.) With 13,000 hematologists and oncologists in practice today, the average one will see only two patients with newly diagnosed multiple myeloma each year and six living with the disease. Some physicians, of course, will see more, while many others will see fewer.
Experience goes a long way. But I’d argue it goes farther today than ever before. When I was diagnosed with multiple myeloma in 1996, there were few treatment options and limited clinical trials. Today, in addition to benefitting from an unprecedented number of new drugs that have become available in the last 10 years, I and many other multiple myeloma patients benefit from potentially lifesaving new treatments that are under study in clinical trials — assuming we live near, or can travel to, a center where the trial is offered.
It is so important that everyone with cancer, even those with seemingly nonthreatening tumors, seek care from a physician who routinely treats their kind of cancer — even if it requires going the extra mile. Don’t be afraid to ask a potential doctor how many patients with this type of cancer he or she is treating.
Another essential question to ask — ideally before starting treatment — is whether the physician or the cancer center can sequence your cancer genome. That provides valuable information, including whether you have genetic mutations and other abnormalities for which new drugs are available.
If the center doesn’t have the technology to do this, ask if it can at the very least bank a sample of tumor tissue. Banking cancer tissue ensures that sequencing can be done at a later date once the technology becomes routine.
The cancer community must also work harder to educate oncologists in every community on current research — from our rapidly evolving knowledge of cancer biology to the latest molecularly targeted therapies and associated biomarker tests — that might affect their clinical practice. With tens of thousands of biomedical journal articles published every year, a physician would need to read 19 new articles each day just to stay in front of the eight ball; this begins to explain the oft-cited statistic that it takes a whopping 17 years for research evidence to become routine clinical practice.
That’s why my organization, the Multiple Myeloma Research Foundation, has made it a priority to disseminate relevant research and offer free, multi-sponsored continuing medical education programming designed by our academic advisors. Other groups, such as the Institute of Medicine, the American Society of Clinical Oncology, and the White House’s Precision Medicine Initiative, are similarly focused on accelerating the diffusion of knowledge and are building new models that bridge the gulf between research and clinical care.
Together, we can ensure that all cancer patients get the very best care — no matter how rare or how complex their cancers are. You and I should have as much a chance of beating our cancers as anyone else.
Kathy Giusti is the founder of the Multiple Myeloma Research Foundation and a member of its board of directors.
Making sure a clinic has the right technology for a specific type of cancer is a good idea. It’s important to get the best service as well as being in a good location. Asking questions about which resources they have can be a good indicator. http://www.kinstonmd.com/
My 72 year old sister was diagnosed with MM 9 years ago. She had a stem cell transplant 8 years ago… she was recently diagnosed with a plasma customary tumor on her spine related to her MM, for which she is receiving radiation. Her health is now noticeably declining and I feel her and her doctor is taking a “hit or miss” approach rather than a targeted strategy in treating her. We are interested in a genome/DNA study to determine her subset of MM so we can more accurately target her cancer. How do we go about getting that test?
I love that suggestion to not be afraid to ask you doctor how many similar patients he or she is treated. It seems to be like there’s gotta be something wrong if you’re scared to ask your doctor questions. The idea of going through cancer treatments sounds a scary, but I’ve used to have a class with a girl who said it really helps when you trust who’s in charge of your treatment. http://silvercancerinstitute.com/personalized-cancer-testing.htm
Diagnosed 2 1/2 years ago, really appreciated the information in this article. Would appreciate any new treatment of Multiple Myeloma
This is good information, but to be of greatest value to a patient, why not tell them where they have the most patients and success? Center “A” and center “B” is fine for a blind study, but it you want to have real value to the patients, it is time to stop playing the “safe” way and tell it like it is!
Was diagnosed with MM in 2012 in the simmering stage. Dec 2015 had a traumatic leg injury and almost lost my foot. Many infections and slow bone regeneration over a 7 month period with 6 surgeries left me near death 4 times and by June of 2016 my MM was rampant but fortunately no lesions or tumors have been found so far. But I also have genetic Polycystic Kidney Disease at stage 3 failure. I began a targeted chemo treatment in June with caveat that my kidneys were my number 1 concern. Extreme anemia has also been a battle after a lot of blood loss due to the injury and now my body having difficulty making red blood cells. I was allergic to Revlimid, so now am on subcutaneous Velcade coupled with Dexamethasone, and Acyclovir orally. I am finding the neuropathy that this treatment is causing is becoming a real health hazard and painful. Is there another targeted regime that may be more kidney and nerve friendly?
Diagnosed in 2013 (misdiagnosed for 7months) at age 66. Being treated at MGH by Noopur Raje. Great hospital and doctor. My life is good. I give thanks daily. Thanks for all you do.
Good article, gives me some info to discuss with my oncoligist.