*Before I begin, a caveat: I am not a medical professional, I am not affiliated with any cancer organizations, and I do not claim to be an expert. The opinions below are personal ones developed over six years of my mother having cancer, and informed by a probably destructive compulsion to regularly read about cancer on the Internet. *
If anyone newly diagnosed with cancer were to ask me what my biggest suggestion would be for them as they moved forward, I’d immediately say, “I AM SO GLAD YOU ASKED.” (I love giving advice and for some reason am also never prevailed upon) and then I’d say, “Get a second opinion if you can swing it. Maybe a third too just to be thorough.”
This advice does not apply to all situations. For certain cancers the way forward is pretty universal no matter which oncologist you see. Some people are lucky enough to be treated at an experienced research institution immediately upon diagnosis. But 90% of patients are treated at local treatment centers, and for those patients I have this advice: if you aren’t comfortable with the plan your oncologist has come up with, or a doctor has said the words “not common” or “rare” or “oh shit” to you, it’s probably a good idea to get another opinion. Not all cancer hospitals are created equal, and where you receive your treatment matters.
I bring this up because my mom got a call last week that the clinical trial she’s been waiting on has been pushed back until June. The MATCH trial was planning to extend the opportunity for genetic mutation testing and targeted treatment to patients in Alaska and throughout the United States– but the demand was much higher than they anticipated. For the first time, people outside a few elite institutions are being offered the chance to access genomic mutation testing without huge out-of-pocket costs, at their local hospitals, and MATCH is struggling to keep up with the need. This means our best option for treatment in Alaska is out of our reach for now.
So now we have to do something we’ve put off doing for a long time: get a second opinion. The biggest reason for this was, of course, money. Insurance will probably not cover all of the cost of a second opinion, which can require all new scans that run into the thousands of dollars. That’s just to start. There are also the out-of-pocket costs of plane tickets and hotel stays and rental cars to consider. A second opinion is risky, because after all your effort, you still might not get any new information, and then you’ve spent a lot of money for no benefit. And if that hospital does have some special therapy they can offer you? Well, depending on where you live, you’ve got to travel, probably regularly, to receive that treatment; treatment that might not be wholly (or at all) covered by insurance. So we’ve waited. We’ve relied on what was available in Alaska and Seattle to contain my mom’s cancer, but that’s not good enough anymore.
Being treated at a hospital with expertise in your cancer can make a critical difference in your treatment and outcome. For example, in 2006, the National Cancer Institute issued a rare announcement regarding ovarian cancer. One treatment had been shown to be so preferable for outcomes that physicians were advised to immediately change how the treated the disease. A study found that “pumping chemotherapy directly into the abdomen, along with the usual intravenous method, could add 16 months or more to women’s lives.” Despite this, ten years later, fewer than HALF of ovarian cancer patients at American hospitals are receiving this treatment.
That’s just one example. Testing patients for mutations in their cancer (which can be fought with targeted drugs) is another approach that isn’t reaching patients. Because it’s so new, it’s only available at a few hospitals, often still in the clinical trial phase. This kind of personalized test gives doctors the ability to know with much more accuracy which drugs are worth trying, and thus treat individual cancers with greater effectiveness. Some of the newest targeted drugs have already been shown to extend life months or years beyond what old-school treatments can offer.
However, many physicians report low confidence in their knowledge of genomic testing, and are therefore unlikely to tell patients it’s being done elsewhere. Most treatment centers operate as islands unto themselves, and offer patients only the treatments being explored there. A highly regarded hospital might offer you some advanced options, but no hospital can offer you every single treatment option. There could be a treatment that would work better for your individual situation at a hospital within a few hundred miles, but your doctor likely won’t tell you about it (and may not even know about it themselves). This lack of communication and coordination puts patients at a huge disadvantage.
For now, the only recourse patients have is to be their own advocate.
Choosing a hospital is complicated. There isn’t an app or online quiz that pinpoints in a few questions what your best option is for a second opinion. Sometimes your oncologist can offer advice. Sometimes geography makes the decision for you, but we live in Alaska, so basically anywhere we travel will be equally expensive and inconvenient.
If, like us, you are willing to travel anywhere in the US, a good place to start the decision-making process is the National Comprehensive Cancer Network member institution list. NCCN is an alliance of 26 cancer centers designated by the National Cancer Institute as comprehensive cancer centers. These elite cancer centers use a multidisciplinary approach to care and are recognized for their expertise in rare and aggressive cancers.
From thousands of hospitals, the NCCN list narrows it down to 26. From there, you can look at The American College of Surgeons search engine of Commission on Cancer certified treatment centers. Their search engine allows you to look at the annual caseload of each hospital, broken down by specific type of cancer and stage. This is one way to see how experienced a treatment center is with your particular kind of cancer.
Sadly, more detailed data like treatment outcomes isn’t available to compare- most hospitals don’t make that information public.
It can also be helpful to research which hospitals have doctors with reputations for expertise in your cancer, and to talk online to other patients about their experiences at different centers (your-cancer-specific message boards and Facebook groups are good for connecting with other patients in this way).
Another option is to get a second opinion at a hospital with clinical trials relevant to your cancer. Clinical trials are studies where new treatments are tested for safety and efficacy. Getting a second opinion at a hospital that conducts clinical trials means that you have access to both traditional treatments and ones that are just now being explored.
Even if you can’t easily get to another hospital for a second opinion, it’s worth reading the latest articles and studies about your cancer. A lot of studies and helpful information are available on the Internet, if you can find them. Googling cancer can be a nightmare, fraught with discouraging information, and frequently difficult to understand. If you don’t feel comfortable doing the research on your own, there are cancer organizations that specialize in helping patients learn more about their cancer and treatment options. The American Cancer Society is one example, and they run a 24 hotline to help patients navigate the frequently overwhelming and confusing landscape of oncology.
Our plan, as of now (never get attached to your plans, by the way, with cancer. Cancer will destroy your plans without ceremony, over and over) is to make an appointment with MD Anderson and see what options they can offer us. (Getting an appointment at a respected research hospital can take weeks, so it’s best to start early.) We are also going to pursue clinical trials and genetic mutation testing on our own, something I’ll go into in my next blog.
This is an incredibly hopeful and frustrating time in the treatment of cancer. New drugs are becoming available that have results that would have been unthinkable just a few years ago. But while research marches forward, access and information lag behind for most patients. Most of cancer happens at a cellular level, far beyond our control. Patients cannot afford to leave what control they have over their treatment to chance.