A second opinion, and sometimes a third and fourth, for a cancer diagnosis can be critical. But how do you best go about this intelligently and safely during a pervasive COVID-19 outbreak… especially here in the U.S.?
Why Additional Opinions are Essential
According to a study published in BMJ Quality and Safety Journal, 28% of cancer cases are misdiagnosed; at least 40,000 cancer patients die each year as a result of misdiagnosis or delayed diagnosis. The statistics are approximate—erring on the low side—because many misdiagnosed cases are not reported as such.
Don’t be one of these tragic statistics or be affected by the nightmarish outcomes that can result from treatment using therapeutic guidelines predicated on a faulty diagnosis.
Help ensure your diagnosis is accurate—or that of your loved one—and your management and treatment strategy is well-informed through the best science, by consulting with the most experienced clinician-investigator expert(s) specific to the disease you are hosting.
With few exceptions of early stage and straightforward cancer prognoses, it is vital to get another set or two of eyes and some expert brains on your case before you commit to a treatment regimen.
Navigation of Cancer Care During a Pandemic—Enter Telemedicine
Pre-COVID-19, it was not legally possible, as a new patient, to meet a top cancer expert via telemedicine. It would have required you to be an established patient who had already seen the oncologist in person for a formal new patient consult.
COVID-19 has ushered in a relaxation of legal parameters for delivering telemedicine visits. This includes a lessening of stringent HIPAA compliances. Health insurers are now reimbursing providers of telemedicine appointments in near-parity of in-person visits. The Federal Drug Agency and Centers for Disease Control support a robust telemedicine capacity to deliver guidance and care during a raging pandemic.
Now, instead of flying across the country to secure a second opinion, you can begin the process with a comprehensive telemedicine consult. This is a much less stressful, less time-intensive, and less expensive (think: flights, lodging, food) approach to securing knowledge from top clinician-investigator experts from the comfort of your home, and without the risk of exposure to COVID-19 from the stops en route—going and returning, or in the clinical setting itself.
Process for Obtaining a Second Opinion During a Pandemic
1. Identify Top Experts for Diagnosis, Prognosis, and Treatment and Management Recommendations
- Search for the most prominent nonprofit organizations specific to the cancer you are hosting. See which academic experts (oncologists who also lead research) are affiliated or otherwise contribute to the organization’s activities. Take a closer look at these leaders’ clinical practices online, and note where they are located.
- Access PubMed, search for the cancer type which has been diagnosed. Enter additional keywords for specific drugs or combinations of drugs, including those mentioned as therapeutics currently utilized as published on the American Cancer Society website.
Then, review the list of authors who contributed to the published paper. The first author listed is the lead author. Institutions or companies affiliated with those authors will show up on that list. Click on the lead and second and third authors (or deeper into the list) to see other papers they have published, and the volume of publications they have contributed to the medical literature.
Create a document capturing the names, affiliations, and types of research each author has published. Focus on those that are well-published on the specific disease and subset (as applicable and identifiable) you believe you are hosting.
- Ask your community oncologist and hospital-based cancer center (this assumes your oncologist does not practice within a large academic cancer center) to recommend an academic clinician-researcher expert for a second opinion.
If a recommendation cannot be made because of a lack of professional relationships, then that is a plausible excuse. However, if your oncologist is angered by, or otherwise becomes bothered by such a request, then it’s time to find a different local oncologist—they should welcome multiple opinions and expect to be consulted by those who have received an initial diagnosis, as well as to have their diagnoses checked by peers.
Assuming your request is fulfilled, take a look at the recommended physician and their specialty, and if they have published on the disease you are hosting. Be sure to look at their ratings on top sites like RateMDs, Healthgrades, Yelp and ZocDoc.
2. Focus on NCI Designated Comprehensive Cancer Centers (NCICCC)
I am a strong proponent of getting second opinion, third as necessary, at an NCICCC. Not long ago, I wrote about the 3 Reasons to Get a Second Opinion at an NCI-Designated Comprehensive Cancer Center. I highly recommend reading this article in its entirety, but to paraphrase the trio of reasons which are critical…
- The leading minds for your particular disease (physician-scientists) are found within the network of these academic-based centers. These folks are dedicated, day in and day out, to your specific disease. Do the research to seek out the expert(s) in closest proximity 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 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 critically significant for you—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.
3. Make Initial Contact with Desired Providers and Institutions
Get on the schedule for a new patient consultation. Of course, make sure, upfront, to follow the necessary process required by your insurance company so your telemedicine consult will be covered. Also, ask your insurer how many telemedicine new patient consults they will cover should you require a third or fourth opinion.
4. Transfer Clinical Records Including Labs and Imaging
Make sure all records, reports, pathology slides—everything the physician needs to review and to inform their recommendations—arrives before your virtual visit. Unfortunately, this often requires a bit of chasing things down and making follow-up calls for confirmations.
5. Develop a Comprehensive List of Questions
Maximize the productivity of your telemedicine visit by preparing a list of questions specific to your situation. This is not meant to be an exhaustive list, but one to cover the core areas of discussion.
- Current Diagnosis
- Prognosis Based on Standard of Care Treatment and Statistics (Knowing that you are NOT a statistic, you are an n of 1!)
- Treatment History to Date
- Current Providers
- Recommendations for Treatment and Management
- NCCN Guidelines (the go-to ‘universal’ guidelines)
- Clinical Trials (including those being led by the institution with which you are consulting)
- Drug Pipeline
- Experimental and Off Label Drugs
Generally speaking, in-person, in-clinic consultations, even with masks and shields, are better than telemedicine visits—especially for new patients. But, at this time, it’s advisable to avoid clinical settings as much as possible.
Regardless the level you may be immunosuppressed, jumping on planes or taking extra-long car rides creates unnecessary exposure which translates to more stress. On that topic—logistics and reducing stress—if you need additional tests or imaging, have them done locally and sent out as necessary.
Keep in mind that, if treatment is needed, you most probably can be treated close to home where it is most convenient and accessible to you and your family. Your clinician-researcher oncologist expert would communicate with your community oncology team and get on the same page regarding the treatment schema and management.
Exceptions to this may be based on clinical trials and certain novel therapies requiring special facilities and trained teams (CAR-T Therapy comes to mind as an example).
I will leave you with this: while it is absolutely smart to seek out the best minds, in an orderly manner, for a proper diagnosis, prognosis, and for informed treatment and management recommendations, it is vital you understand that the focus of your oncologist (community-based or academic clinician-researcher) is your tumor burden—the malignancy itself.
While you proactively endeavor to identify and get a second (or third) opinion from the finest oncologist(s) to help determine the most informed decisions, never forget this:
Your oncologist is the disease expert. You must become the health expert.
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